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Understanding, Educating, and Supporting Children with Specific Learning Disabilities: 50 Years of Science and Practice

Elena l. grigorenko.

1 University of Houston, Houston, USA

2 Baylor College of Medicine, Houston, USA

Donald Compton

3 Florida State University, Tallahassee, USA

4 Vanderbilt University, Nashville, USA

Richard Wagner

Erik willcutt.

5 University of Colorado Boulder, Boulder, USA

Jack M. Fletcher

Specific learning disabilities (SLD) are highly relevant to the science and practice of psychology, both historically and currently, exemplifying the integration of interdisciplinary approaches to human conditions. They can be manifested as primary conditions—as difficulties in acquiring specific academic skills—or as secondary conditions, comorbid to other developmental disorders such as Attention Deficit Hyperactivity Disorder. In this synthesis of historical and contemporary trends in research and practice, we mark the 50th anniversary of the recognition of SLD as a disability in the US. Specifically, we address the manifestations, occurrence, identification, comorbidity, etiology, and treatment of SLD, emphasizing the integration of information from the interdisciplinary fields of psychology, education, psychiatry, genetics, and cognitive neuroscience. SLD, exemplified here by Specific Word Reading, Reading Comprehension, Mathematics, and Written Expression Disabilities, represent spectrum disorders each occurring in approximately 5–15% of the school-aged population. In addition to risk for academic deficiencies and related functional social, emotional, and behavioral difficulties, those with SLD often have poorer long-term social and vocational outcomes. Given the high rate of occurrence of SLD and their lifelong negative impact on functioning if not treated, it is important to establish and maintain effective prevention, surveillance, and treatment systems involving professionals from various disciplines trained to minimize the risk and maximize the protective factors for SLD.

Fifty years ago, the US federal government, following an advisory committee recommendation ( United States Office of Education, 1968 ), first recognized specific learning disabilities (SLD) as a potentially disabling condition that interferes with adaptation at school and in society. Over these 50 years, a significant research base has emerged on the identification and treatment of SLD, with greater understanding of the cognitive, neurobiological, and environmental causes of these disorders. The original 1968 definition of SLD remains statutory through different reauthorizations of the 1975 special education legislation that provided free and appropriate public education for all children with disabilities, now referred to as the Individuals with Disabilities Education Act (IDEA, 2004). SLD are recognized worldwide as a heterogeneous set of academic skill disorders represented in all major diagnostic nomenclatures, including the Diagnostic and Statistical Manual-5 (DSM-5, American Psychiatric Association, 2013) and the International Statistical Classification of Diseases and Related Health Problems (ICD-11, World Health Organization, 2018).

In the US, the SLD category is the largest for individuals who receive federally legislated support through special education. Children are identified as SLD through IDEA when a child does not meet state-approved age- or grade-level standards in one or more of the following areas: oral expression, listening comprehension, written expression, basic reading skills, reading fluency, reading comprehension, mathematics calculation, and mathematics problem solving. Although children with SLD historically represented about 50% of the children aged 3–21 served under IDEA, percentages have fluctuated across reauthorizations of the special education law, with some decline over the past 10 years ( Figure 1 ).

The Individuals with Disabilities Education Act (IDEA), enacted in 1975 as Public Law 94–142, mandates that children and youth ages 3–21 with disabilities be provided a free and appropriate public school education in the least restricted environment. The percentage of children served by federally mandated special education programs, out of total public school enrollment, increased from 8.3 percent to 13.8 percent between 1976–77 and 2004–05. Much of this overall increase can be attributed to a rise in the percentage of students identified as having SLD from 1976–77 (1.8 percent) to 2004–05 (5.7 percent). The overall percentage of students being served in programs for those with disabilities decreased between 2004–05 (13.8 percent) and 2013–14 (12.9 percent). However, there were different patterns of change in the percentages served with some specific conditions between 2004–05 and 2013–14. The percentage of children identified with SLD declined from 5.7 percent to 4.5 percent of the total public school enrollment during this period. This number is highly variable by state: for example, in 2011 it ranged from 2.3% in Kentucky to 13.8% in Puerto Rico, as there is much variability in the procedures used to identify SLD, and disproportional demographic representation. Figure by Janet Croog.

This review is a consensus statement developed by researchers currently leading the National Institute of Child Health and Human Development (NICHD) supported Consortia of Learning Disabilities Research Centers and Innovation Hubs. This consensus is based on the primary studies we cite, as well as the meta-analytic reviews (*), systematic reviews (**), and first-authored books (***) that provide an overview of the science underlying research and practice in SLD (see references). The hope is that this succinct overview of the current state of knowledge on SLD will help guide an agenda of future research by identifying knowledge gaps, especially as the NICHD embarks on a new strategic plan. The research programs on SLD from which this review is derived represent the integration of diverse, interdisciplinary approaches to behavioral science and human conditions. We start with a brief description of the historical roots of the current view of SLD, then provide definitions as well as prevalence and incidence rates, discuss comorbidity between SLD themselves and SLD and other developmental disorders, comment on methods for SLD identification, present current knowledge on the etiology of SLD, and conclude with evidence-based principles for SLD intervention.

Three Historical Strands of Inquiry that Shaped the Current Field of SLD

Three strands of phenomenological inquiry culminated in the 1968 definition and have continued to shape current terminology and conventions in the field of SLD ( Figure 2 ). The first, a medical strand, originated in 1676, when Johannes Schmidt described an adult who had lost his ability to read (but with preserved ability to write and spell) because of a stroke. Interest in this strand reemerged in the 1870s with the publication of a string of adult cases who had lived through a stroke or traumatic brain injury. Subsequent cases involved children who were unable to learn to read despite success in mathematics and an absence of brain injury, which was termed “word blindness” ( W. P. Morgan, 1896 ). These case studies laid the foundation for targeted investigations into the presentation of specific unexpected difficulties related to reading printed words despite typical intelligence, motivation, and opportunity to learn.

A schematic timeline of the three stands of science and practice in the field of SLD. The colors represent the strands (blue—first, yellow—second, and green—third). Blue: provided phenomenological descriptions and generated hypotheses about the gene-brain bases of SLD (specifically, dyslexia or SRD); it also provided the first evidence that the most effective treatment approaches are skill-based and reflect cognitive models of the conditions. Yellow: differentiated SLD from other comorbid conditions. Green: stressed the importance of focusing on SLD in academic settings and developing both preventive and remediational evidence-based approaches to managing these conditions. Due to space constraints, the names of many highly influential scientists (e.g., Marilyn Adams, Joseph Torgesen, Isabelle Liberman, Keith Stanovich, among others) who shaped the field of SLD have been omitted. Figure by Janet Croog.

The second strand is directly related to the formalization of the American Psychiatric Association’s Diagnostic and Statistical Manual (DSM). Rooted in the work of biologically oriented physicians, the 1952 first edition (DSM-I) referenced a category of chronic brain syndromes of unknown cause that focused largely on behavioral presentations we now recognize as hyperkinesis and Attention Deficit Hyperactivity Disorder (ADHD). The 1968 DSM-II defined “mild brain damage” in children as a chronic brain syndrome manifested by hyperactive and impulsive behavior with reference to a new category, “hyperkinetic reaction of childhood” if the origin is not considered “organic.” As these categories evolved, they expanded to encompass the academic difficulties experienced by many of these children.

After almost 30 years of research into this general category of “minimal brain dysfunction,” representing “... children of near average, average, or above average general intelligence with certain learning or behavioral disabilities ... associated with deviations of function of the central nervous system.” ( Clements, 1966 , pp. 9–10), the field acknowledged the heterogeneity of these children and the failure of general “one size fits all” interventions. As a result, the 1980 DSM-III formally separated academic skill disorders from ADHD. The 1994 DSM-IV differentiated reading, mathematics, and written expression SLD. The DSM-5 reversed that, merging these categories into one overarching category of SLD (nosologically distinct from although comorbid with ADHD), keeping the notion of specificity by stating that SLD can manifest in three major academic domains (reading, mathematics, and writing).

The third strand originated from the development of effective interventions based on cognitive and linguistic models of observed academic difficulties. This strand, endorsed in the 1960s by Samuel Kirk and associates, viewed SLD as an overarching category of spoken and written language difficulties that manifested as disabilities in reading (dyslexia), mathematics (dyscalculia), and writing (dysgraphia). Advances have been made in understanding the psychological and cognitive texture of SLD, developing interventions aimed at overcoming or managing them, and differentiating these disorders from each other, from other developmental disorders, and from other forms of disadvantage. This work became the foundation of the 1968 advisory committee definition of SLD, which linked this definition with that of minimal brain dysfunction via the same “unexpected” exclusionary criteria (i.e., not attributable primarily to intellectual difficulties, sensory disorders, emotional disturbance, or economic/cultural diversity).

Although its exclusionary criteria were well specified, the definition of SLD did not provide clear inclusionary criteria. Thus, the US Department of Education’s 1977 regulatory definition of SLD included a cognitive discrepancy between higher IQ and lower achievement as an inclusionary criterion. This discrepancy was viewed as a marker for unexpected underachievement and penetrated the policy and practice of SLD in the US and abroad. In many settings, the measurement of such a discrepancy is still considered key to identification. Yet, IDEA 2004 and the DSM-5 moved away from this requirement due to a lack of evidence that SLD varies with IQ and numerous philosophical and technical challenges to the notion of discrepancy (Fletcher, Lyon, Fuchs, & Barnes, 2019). IDEA 2004 also permitted an alternative inclusion criterion based on Response-to-Intervention (RTI), in which SLD reflects inadequate response to effective instruction, while the DSM-5 focuses on evidence of persistence of learning difficulties despite treatment efforts.

These three stands of inquiry into SLD use a variety of concepts (e.g., word blindness, strephosymbolia, dyslexia and alexia, dyscalculia and acalculia, dysgraphia and agraphia), which are sometimes differentiated and sometimes used synonymously, generating confusion in the literature. Given the heterogeneity of their manifestation and these diverse historical influences, it has been difficult to agree on the best way to identify SLD, although there is consensus that their core is unexpected underachievement. A source of active research and controversy is whether “unexpectedness” is best identified by applying solely exclusionary criteria (i.e., simple low achievement), inclusionary criteria based on uneven cognitive development (e.g., academic skills lower than IQ or another aptitude measure, such as listening comprehension), or evidence of persisting difficulties (DSM-5) despite effective instruction (IDEA 2004).

Manifestation, Definition, and Etiology

That the academic deficits in SLD relate to other cognitive skills has always been recognized, but the diagnostic and treatment relevance of this connection has remained unclear. A rich literature on cognitive models of SLD ( Elliott & Grigorenko, 2014 ; Fletcher et al., 2019) provides the basis for five central ideas. First, SLD are componential ( Melby-Lervåg, Lyster, & Hulme, 2012 ; Peng & Fuchs, 2016 ): Their academic manifestations arise on a landscape of peaks, valleys, and canyons in various cognitive processes, such that individuals with SLD have weaknesses in specific processes, rather than global intellectual disability ( Morris et al., 1998 ). Second, the cognitive components associated with SLD, just like academic skills and instructional response, are dimensional and normally distributed in the general population ( Ellis, 1984 ), such that understanding typical acquisition should provide insight into SLD and vice versa ( Rayner, Foorman, Perfetti, Pesetsky, & Seidenberg, 2001 ). Third, each academic and cognitive component may have a distinct signature in the brain ( Figure 3 ) and genome ( Figure 4 ). These signatures and etiologies likely overlap because they are correlated, but are not interchangeable, as their unique features substantiate the distinctness of various SLD ( Vandermosten, Hoeft, & Norton, 2016 ). Fourth, the overlap at least partially explains their rates of comorbidity ( Berninger & Abbott, 2010 ; Szucs, 2016 ; Willcutt et al., 2013 ). Fifth, deficiencies in these cognitive and academic processes appear to last throughout the lifespan, especially in the absence of intervention ( Klassen, Tze, & Hannok, 2013 ).

Results of meta-analyses of functional neuroimaging studies that exemplify the distribution of activation patterns in different reading- ( A ) and mathematics- ( B ) related networks, corresponding to componential models of the skills. A (Left panel, light blue): A lexical network in the basal occipito-temporal regions and in the left inferior parietal cortex. A (Middle panel, dark blue): A sublexical network, primarily involving regions of the left temporo-parietal lobe extending from the left anterior fusiform region. A (Right panel): Activation likelihood estimation map of foci from the word>pseudowords (light blue) and pseudowords>words (dark blue) contrasts. The semantic processing cluster is shown in green. B (Left panel): A number-processing network, primarily involving a region of the parietal lobe. B (Middle panel): An arithmetic-processing network, primarily involving regions of the frontal and parietal lobes. B (Right panel): Children (red) and adult (pink) meta-analyses of brain areas associated with numbers and calculations. Figure by Janet Croog.

A schematic representation of the genetic regions and gene-candidates linked to or associated with SRD and reading-related processes (shown in blue), and SMD and mathematics-related processes (shown in red). Dark blue signifies more studied loci and genes. Blue highlighted in red indicate the genes implicated in both SRD and SMD. Figure by Janet Croog.

The DSM-5 and IDEA 2004 reflect agreement that SLD can occur in word reading and spelling (Specific Word Reading Disability; SWRD) and in specific reading comprehension disability (SRCD). SWRD represents difficulties with beginning reading skills due at least in part to phonological processing deficits, while other language indicators (e.g., vocabulary) may be preserved ( Pennington, 2009 ). In contrast, SRCD ( Cutting et al., 2013 ), which is more apparent later in development, is associated with non-phonological language weaknesses ( Scarborough, 2005 ). The magnitude of SRCD is greater than that of vocabulary or language comprehension difficulties, suggesting that other problems, such as weaknesses in executive function or background knowledge, also contribute to SRCD ( Spencer, Wagner, & Petscher, 2018 ).

Math SLDs are differentiated as calculations (SMD) versus problem solving (word problems) SLD, which are associated with distinct cognitive deficits ( L. S. Fuchs et al., 2010 ) and require different forms of intervention ( L. S. Fuchs et al., 2014 ). Calculation is more linked to attention and phonological processing, while problem solving is more linked to language comprehension and reasoning; working memory has been associated with both. Specific written expression disability, SWED ( Berninger, 2004 ; Graham, Collins, & Rigby-Wills, 2017 ) occurs in the mechanical act of writing (i.e., handwriting, keyboarding, spelling), associated with fine motor-perceptual skills, or in composing text (i.e., planning and revising, understanding genre), associated with oral language skills, executive functions, and the automaticity of transcription skills. Although each domain varies in its cognitive correlates, treatment, and neurobiology, there is overlap. By carefully specifying the domain of academic impairment, considerable progress has been made in the treatment and understanding of the factors that lead to SLD.

Identification methods have searched for other markers of unexpected underachievement beyond low achievement, but always include exclusionary factors. Diagnosis solely by exclusion has been criticized due to the heterogeneity of the resultant groups ( Rutter, 1982 ); thus, the introduction of a discrepancy paradigm. One approach relies on the aptitude-achievement discrepancy, commonly operationalized as a discrepancy between measures of IQ and achievement in a specific academic domain. IQ-discrepancy was the central feature of federal regulations for identification from 1977 until 2004, although the approaches used to qualify and quantify the discrepancy varied in the 50 states. Lack of validity evidence ( Stuebing et al., 2015 ; Stuebing et al., 2002 ) resulted in its de-emphasis in IDEA 2004 and elimination from DSM-5.

A second approach focuses on identifying uneven patterns of strengths and weaknesses (PSW) profiles of cognitive functioning to explain observed unevenness in achievement across academic domains ( Flanagan, Alfonso, & Mascolo, 2011 ; Hale et al., 2008 ; Naglieri & Das, 1997 ). According to these methods, a student with SLD demonstrates a weakness in achievement (e.g., word reading), which correlates with an uneven profile of cognitive weaknesses and strengths (e.g., phonological processing deficits with advanced visual-spatial skills). Proponents suggest that understanding these patterns is informative for individualizing interventions that capitalize on student strengths (i.e., maintain and enhance academic motivation) and compensate for weaknesses (i.e., enhance the phonological processing needed for the acquisition and automatization of reading), but little supporting empirical evidence is available ( Miciak, Fletcher, Stuebing, Vaughn, & Tolar, 2014 ; Taylor, Miciak, Fletcher, & Francis, 2017 ). Meta-analytic research suggests an absence of cognitive aptitude by treatment interactions ( Burns et al., 2016 ), and limited improvement in academic skills based on training cognitive deficits such as working memory ( Melby-Lervåg, Redick, & Hulme, 2016 ).

Newer methods of SLD identification are linked to the development of the third historical strand, based on RTI. With RTI, schools screen for early indicators of academic and behavior problems and then progress monitor potentially at-risk children using brief, frequent probes of academic performance. When data indicate inadequate progress in response to adequate classroom instruction (Tier 1), the school delivers supplemental intervention (Tier 2), usually in the form of small-group instruction.

A child who continues to struggle requires more intensive, individualized intervention (Tier 3), which may include special education. An advantage of RTI is that intervention is provided prior to the determination of eligibility for special education placement. RTI juxtaposes the core concept of underachievement with the concept of inadequate response to instruction, that is, intractability to intervention. It prioritizes the presence of functional difficulty and only then considers SLD as a possible source of this difficulty ( Grigorenko, 2009 ). Still, concerns about the RTI approach to identification remain. One concern is that RTI approaches may not identify “high-potential” children who struggle to develop appropriate academic skills ( Reynolds & Shaywitz, 2009 ). Other concerns involve low agreement across different methods for defining inadequate RTI ( D. Fuchs, Compton, Fuchs, Bryant, & Davis, 2008 ; L. S. Fuchs, 2003 ) and challenges schools face in adequately implementing RTI frameworks ( Balu et al., 2015 ; D. Fuchs & Fuchs, 2017 ; Schatschneider, Wagner, Hart, & Tighe, 2016 ).

Prevalence and Incidence

Because the attributes of SLD are dimensional and depend on the thresholds used to subdivide normal distributions ( Hulme & Snowling, 2013 ), estimates of prevalence and incidence vary. SWRD’s prevalence estimates range from 5 to 17% ( Katusic, Colligan, Barbaresi, Schaid, & Jacobsen, 2001 ; Moll, Kunze, Neuhoff, Bruder, & Schulte-Körne, 2014 ). SRCD is less frequent ( Etmanskie, Partanen, & Siegel, 2016 ), but still represents about 42% of all children ever identified with SLD in reading at any grade ( Catts, Compton, Tomblin, & Bridges, 2012 ). Estimates of incidence and prevalence of SMD vary as well: from 4 to 8% ( Moll et al., 2014 ). Cumulative incidence rates by the age of 19 years range from 5.9% to 13.8%. Similar to SWRD, SMD can be differentiated in terms of lower- and higher-order skills and by time of onset. Computation-based SMD manifests earlier; problem-solving SMD later, sometimes in the absence of computation-based SMD ( L. S. Fuchs, D. Fuchs, C. L. Hamlett, et al., 2008 ). SWED is the least studied SLD. Its prevalence estimates range from 6% to 22% ( P. L. Morgan, Farkas, Hillemeier, & Maczuga, 2016 ) and cumulative incidence ranges from 6.9% to 14.7% ( Katusic, Colligan, Weaver, & Barbaresi, 2009 ).

Comorbidity and Co-Occurrence

One reason SLD can be difficult to define and identify is that different SLDs often co-occur in the same child. Comorbidity involving SWRD ranges from 30% ( National Center for Learning Disabilities, 2014 ) to 60% ( Willcutt et al., 2007 ). The most frequently observed co-occurrences are between (1) SWRD and SMD ( Moll et al., 2014 ; Willcutt et al., 2013 ), with 30–50% of children who experience a deficit in one academic domain demonstrating a deficit in the other ( Moll et al., 2014 ); (2) SWRD and early language impairments ( Dickinson, Golinkoff, & Hirsh-Pasek, 2010 ; Hulme & Snowling, 2013 ; Pennington, 2009 ) with 55% of individuals with SWRD exhibiting significant speech and language impairment ( McArthur, Hogben, Edwards, Heath, & Mengler, 2000 ); and (3) SWRD and internalizing and externalizing behavior problems, with 25–50% of children with SWRD meeting criteria for ADHD ( Pennington, 2009 ) and for generalized anxiety disorder and specific test anxiety, depression, and conduct problems ( Cederlof, Maughan, Larsson, D’Onofrio, & Plomin, 2017 ), although comorbid conduct problems are largely restricted to the subset of individuals with both SWRD and ADHD ( Willcutt et al., 2007 ).

The co-occurrence of SMD is less studied, but there are some consistently replicated observations: (1) individuals with SMD exhibit higher rates of ADHD, and math difficulties are observed in individuals with ADHD more frequently than in the general population ( Willcutt et al., 2013 ); (2) math difficulties are associated with elevated anxiety and depression even after reading difficulties are controlled ( Willcutt et al., 2013 ); and (3) SMD are associated with other developmental conditions such as epilepsy ( Fastenau, Shen, Dunn, & Austin, 2008 ) and schizophrenia ( Crow, Done, & Sacker, 1995 ).

SLD is clearly associated with difficulties in adaptation, in school and in larger spheres of life associated with work and overall adjustment. Longitudinal research reports poorer vocational outcomes, lower graduation rates, higher rates of psychiatric difficulties, and more involvement with the justice system for individuals with SWRD ( Willcutt et al., 2007 ). Importantly, there is evidence of increased comorbidity across forms of SLD with age, with accumulated cognitive burden ( Costa, Edwards, & Hooper, 2016 ). Individuals with comorbid SLDs have poorer emotional adjustment and school functioning than those identified with a single impairment ( Martinez & Semrud-Clikeman, 2004 ).

Identification (Diagnosis)

Comorbidity indicates that approaches to assessment should be broad and comprehensive. For SLD, the choice of a classification model directly influences the selection of assessments for diagnostic purposes. Although all three models are used, the literature (Fletcher et al., 2019) demonstrates that a single indicator model, based either on cut-off scores, other formulae, or assessment of instructional response, does not lead to reliable identification regardless of the method employed. SLD can be identified reliably only in the context of multiple indicators. A step in this direction is a hybrid method that includes three sets of criteria, two inclusionary and one exclusionary, recommended by a consensus group of researchers (Bradley, Danielson, & Hallahan, 2002). The two inclusionary criteria are evidence of low achievement (captured by standardized tests of academic achievement) and evidence of inadequate RTI (captured by curriculum-based progress-monitoring measures or other education records). The exclusionary criterion should demonstrate that the documented low achievement is not primarily attributable to “other” (than SLD) putative causes such as (a) other disorders (e.g., intellectual disability, sensory or motor disorders) or (b) contextual factors (e.g., disadvantaged social, religious, economic, linguistic, or family environment). In the future, it is likely that multi-indicator methods will be extended, with improved identification accuracy, by the addition of other indicators, neurobiological, genetic, or behavioral. It is also possible that assessment of specific cognitive processes beyond academic achievement will improve identification, but presently there is little evidence that such testing adds value to identification ( Elliott & Grigorenko, 2014 ; Fletcher et al., 2019). All identification methods for SLD assume that children referred for assessment are in good health or are being treated and that their physical health, including hearing and vision, is monitored. Currently, there are no laboratory tests (i.e., DNA or brain structure/activity) for SLD. There are also no tests that can be administered by an optometrist, audiologist, or physical therapist to diagnose or treat SLD.

Etiological Factors

Neural structure and function.

Since the earliest reports of reading difficulties, it has been assumed that the loss of function (i.e., acquired reading disability) or challenges in the acquisition of function (i.e., congenital reading disability) are associated with the brain. Functional patterns of activation in response to cognitive stimuli show reliable differences in degrees of activation between typically developing children and those identified with SWRD, and reveal different spatial distributions in relation to children identified with SMD and ADHD ( Dehaene, 2009 ; Seidenberg, 2017 ). In SWRD, there are reduced gray matter volumes, reduced integrity of white matter pathways, and atypical sulcal patterns/curvatures in the left-hemispheric frontal, occipito-temporal, and temporo-parietal regions that overlap with areas of reduced brain activation during reading.

These findings together indicate the presence of atypicalities in the structures (i.e., grey matter) that form the neural system for reading and their connecting pathways (i.e., white matter). These structural atypicalities challenge the emergence of the cognitive—phonological, orthographic, and semantic—representations required for the assembly and automatization of the reading system. Although some have interpreted the atypicalities as a product of reading instruction ( Krafnick, Flowers, Luetje, Napoliello, & Eden, 2014 ), there is also evidence that atypicalities can be observed in pre-reading children at risk for SWRD due to family history or speech and language difficulties ( Raschle et al., 2015 ), sometimes as early as a few days after birth with electrophysiological measures ( Molfese, 2000 ). What emerges in a beginning reader, if not properly instructed at developmentally important periods, is a suboptimal brain system that is inefficient in acquiring and practicing reading. This system is complex, representing multiple networks aligned with different reading-related processes ( Figure 3 ). The system engages cooperative and competitive brain mechanisms at the sublexical (phonological) and lexical levels, in which the phonological, orthographic, and semantic representations are utilized to rapidly form representations of a written stimulus. Proficient readers process words on sight with immediate access to meaning ( Dehaene, 2009 ). In addition to malleability in development, there is strong evidence of malleability through instruction in SWRD, such that the neural processes largely normalize if the intervention is successful ( Barquero, Davis, & Cutting, 2014 ).

The functional neural networks for SMD also vary depending on the mathematical operation being performed, just as the neural correlates of SWRD and SRCD do ( Cutting et al., 2013 ). Neuroimaging studies on the a(typical) acquisition of numeracy posit SMD ( Arsalidou, Pawliw-Levac, Sadeghi, & Pascual-Leone, 2017 ) as a brain disorder engaging multiple functional systems that together substantiate numeracy and its componential processes ( Figure 3 ). First, the intraparietal sulcus, the posterior parietal cortex, and regions in the prefrontal cortex are important for representing and processing quantitative information. Second, mnemonic regions anchored in the medial temporal lobe and hippocampus are involved in the retrieval of math facts. Third, additional relevant regions include visual areas implicated in visual form judgement and symbolic processing. Fourth, prefrontal areas are involved in higher-level processes such as error monitoring, and maintaining and manipulating information. As mathematical processes become more automatic, reliance on the parietal network decreases and reliance on the frontal network increases. All these networks, assembled in a complex functional brain system, appear necessary for the acquisition and maintenance of numeracy, and various aberrations in the functional interactions between networks have been described. Thus, SMD can arise as a result of disturbances in one or multiple relevant networks, or interactions among them ( Arsalidou et al., 2017 ; Ashkenazi, Black, Abrams, Hoeft, & Menon, 2013 ). There is also evidence of malleability and the normalization of neural networks with successful intervention in SMD ( Iuculano et al., 2015 ).

Genetic and environmental factors

Early case studies of reading difficulties identified their familial nature, which has been confirmed in numerous studies utilizing genetically-sensitive designs with various combinations of relatives—identical and fraternal twins, non-twin siblings, parent-offspring pairs and trios, and nuclear and extended families. The relative risk of having SWRD if at least one family member has SWRD is higher for relatives of individuals with the condition, compared to the risk to unrelated individuals; higher for children in families where at least one relative has SWRD; even higher for families where a first-degree relative (i.e., a parent or a sibling) has SWRD; and higher still for children in families where both parents have SWRD ( Snowling & Melby-Lervåg, 2016 ). Quantitative-genetic studies estimate that 30–80% of the variance in reading, math or spelling outcomes is explained by heritable factors ( Willcutt et al., 2010 ).

Since the 1980s, there have been systematic efforts to identify the sources of structural variation in the genome, i.e., genetic susceptibility loci that can account for the strong heritability and familiality of SWRD ( Figure 4 ). These efforts have yielded the identification of nine regions of the genome thought to harbor genes, or other genetic material, whose variation is associated with the presence of SWRD and individual differences in reading-related processes. Within these regions, a number of candidate genes have been tapped, but no single candidate has been unequivocally replicated as a causal gene for SWRD, and observed effects are small. In addition, multiple other genes located outside of the nine linked regions have been observed to be relevant to the manifestation of SWRD and related difficulties. Currently there are ongoing efforts to interrogate candidate genes for SWRD and connect their structural variation to individual differences in the brain system underlying the acquisition and practice of reading.

There are only a few molecular-genetic studies of SMD and its related processes ( Figure 4 ). Unlike SWRD, no “regions of interest” have been identified. Only one study investigated the associations between known single-nuclear polymorphisms (SNP) and a composite measure of mathematics performance derived from various assessments of SMD-related componential processes and teacher ratings. The study generated a set of SNPs that, when combined, accounted for 2.9% of the phenotypic variance ( Figure 4 shows the genes in which the three most statistically significant SNPs from this set are located). Importantly, when this SNP set was used to study whether the association between the 10-SNP set and mathematical ability differs as a function of characteristics of the home and school, the association was stronger for indicators of mathematical performance in chaotic homes and in the context of negative parenting.

Finally, studies have investigated the pleiotropic (i.e., impacting multiple phenotypes) effects of SWRD candidate genes on SMD, ADHD, and related processes. These effects are seemingly in line with the “generalist genes” hypothesis, asserting the pleiotropic influences of some genes to multiple SLD ( Plomin & Kovas, 2005 ).

Environmental factors are strong predictors of SLD. These factors penetrate all levels of a child’s ecosystem: culture, demonstrated in different literacy and numeracy rates around the world; social strata, captured by social-economic indicators across different cultures; characteristics of schooling, reflected by pedagogies and instructional practices; family literacy environments through the availability of printed materials and the importance ascribed to reading at home; and neighborhood and peer influences. Interactive effects suggest that reading difficulties are magnified when certain genetic and environmental factors co-occur, but there is evidence of neural malleability even in SWDE ( Overvelde & Hulstijn, 2011 ). Neural and genetic factors are best understood as risk factors that variably manifest depending on the home and school environment and child attributes like motivation.

Intervention

Although the content of instruction varies depending on whether reading, math, and/or writing are impaired, general principles of effective intervention apply across SLD i . First, intervention for SLD is explicit ( Seidenberg, 2017 ): Teachers formally present new knowledge and concepts with clear explanations, model skills and strategies, and teach to mastery with cumulative practice with ongoing guidance and feedback. Second, intervention is individualized: Instruction is formatively adjusted in response to systematic progress-monitoring data ( Stecker, Fuchs, & Fuchs, 2005 ). Third, intervention is comprehensive and differentiated, addressing the multiple components underlying proficient skill as well as comorbidity. Comprehensive approaches address the multifaceted nature of SLD and provide more complex interventions that are generally more effective than isolated skills training in reading ( Mathes et al., 2005 ) and math ( L. S. Fuchs et al., 2014 ). For example, children with SLD and ADHD may need educational and pharmacological interventions ( Tamm et al., 2017 ). Anxiety can develop early in children who struggle in school, and internalizing problems must be treated ( Grills, Fletcher, Vaughn, Denton, & Taylor, 2013 ). Differentiation through individualization in the context of a comprehensive intervention also permits adjustments of the focus of an intervention on specific weaknesses.

Fourth, intervention adjusts intensity as needed to ensure success, by increasing instructional time, decreasing group size, and increasing individualization ( L. S. Fuchs, Fuchs, & Malone, 2017 ). Such specialized intervention is typically necessary for students with SLD ( L. S. Fuchs et al., 2015 ). Yet, effective instruction for SLD begins with differentiated general education classroom instruction ( Connor & Morrison, 2016 ), in which intervention is coordinated with rather than supplanting core instruction ( L. S. Fuchs, D. Fuchs, C. Craddock, et al., 2008 ).

In addition, intervention is more effective when provided early in development. For example, intervention for SWRD was twice as effective if delivered in grades 1 or 2 than if started in grade 3 ( Lovett et al., 2017 ). This is underscored by neuroimaging research ( Barquero et al., 2014 ) showing that experience with words and numbers is needed to develop the neural systems that mediate reading and math proficiency. A child with or at risk for SWRD who cannot access print because of a phonological processing problem will not get the reading experience needed to develop the lexical system for whole word processing and immediate access to word meanings. This may be why remedial programs are less effective after second grade; with early intervention, the child at risk for SLD develops automaticity because they have gained the experience with print or numbers essential for fluency. Even with high quality intensive intervention, some children with SLD do not respond adequately, and students with persistent SLD may profit from assistive technology (e.g., computer programs that convert text-to-speech; Wood, Moxley, Tighe, & Wagner, 2018 ).

Finally, interventions for SLD must occur in the context of the academic skill itself. Cognitive interventions that do not involve print or numbers, such as isolated phonological awareness training or working memory training without application to mathematical operations do not improve reading or math skill ( Melby-Lervåg et al., 2016 ). Physical exercises (e.g., cerebellar training), optometric training, special lenses or overlays, and other proposed interventions that do not involve teaching reading or math are ineffective ( Pennington, 2009 ). Pharmacological interventions are effective largely due to their impact on comorbid symptoms, with little evidence of a direct effect on the academic skill ( Tamm et al., 2017 ).

No evaluations of recovery rate from SLD have been performed. Intervention success has been evaluated as closing the age-grade discrepancy, placing children with SLD at an age-appropriate grade level, and maintaining their progress at a rate commensurate with typical development. Meta-analytic studies estimate effect sizes of academic interventions at 0.49 for reading ( Scammacca, Roberts, Vaughn, & Stuebing, 2015 ), 0.53 for math ( Dennis et al., 2016 ), and 0.74 for writing ( Gillespie & Graham, 2014 ).

Implications for Practice and Research

Practitioners should recognize that the psychological and educational scientific evidence base supports specific approaches to the identification and treatment of SLD. In designing SLD evaluations, assessments must be timely to avoid delays in intervention; they must consider comorbidities as well as contextual factors, and data collected in the context of previous efforts to instruct the child. Practitioners should use the resulting assessment data to ensure that intervention programs are evidence-based and reflect explicitness, comprehensiveness, individualization, and intensity. There is little evidence that children with SLD benefit from discovery, exposure, or constructivist instructional approaches.

With respect to research, the most pressing issue is understanding individual differences in development and intervention from neurological, genetic, cognitive, and environmental perspectives. This research will ultimately lead to earlier and more precise identification of children with SLD, and to better interventions and long-term accommodations for the 2–6% of the general population who receive but do not respond to early prevention efforts. More generally, other human conditions may benefit from the examples of progress exemplified by the integrated, interdisciplinary approaches that underlie the progress of the past 50 years in the scientific understanding of SLD.

Acknowledgments

The authors are the Principal Investigators of the currently funded Learning Disabilities Research Centers ( https://www.nichd.nih.gov/research/supported/ldrc ) and Innovation Hubs ( https://www.nichd.nih.gov/research/supported/ldhubs ), the two key NICHD programs supporting research on Specific Learning Disabilities. The preparation of this articles was supported by P20 HD090103 (PI: Compton), P50 HD052117 (PI: Fletcher), P20 HD075443 (PI: Fuchs), P20 HD091005 (PI: Grigorenko), P50 HD052120 (PI: Wagner), and P50 HD27802 (PI: Willcutt). Grantees undertaking such projects are encouraged to express their professional judgment. Therefore, this article does not necessarily reflect the position or policies of the abovementioned agencies, and no official endorsement should be inferred.

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People with learning disabilities, creativity and inclusion in research

By Ruth Northway, Professor of Learning Disability Nursing, University of South Wales @NorthwayRuth

This year’s Learning Disability Awareness Week theme 1 was  ‘creativity’ and I want to reflect on the need for creativity to promote the inclusion of people with learning disabilities in research. Historically the relationship between people with learning disabilities and research has not always been an easy one and at times they have been vulnerable to exploitation and harm in the name of research. One such example is the (in)famous case of the Willowbrook State School in America where children with learning disabilities were deliberately infected with hepatitis as part of ‘research’ to develop a vaccine 2 . As well as the harm caused by such an intervention, concerns were raised as to whether parents who gave ‘consent’ for their children to participate in this experiment actually gave valid consent.

Of course, everyone, including people with learning disabilities, needs to be protected from harm arising from research but additional safeguards may be required due to potential challenges regarding capacity and consent 3 . However, this can mean that all people with learning disabilities risk being labelled as ‘vulnerable’ research participants and hence excluded from participation. This also raises ethical concerns and gives rise to harm.

Not being actively included in research that focuses on your life means your voice and experience are not reflected in that research. It means that the findings and how/ if they are translated into practice may have little or no impact thus bringing into question the value of such research. Not being included in wider research such as (for example) that which focuses on the management of long-term health conditions amongst the wider population, may mean that the challenges you face in managing day-to-day life with that condition are not reflected and the findings may not therefore be generalisable. Unfortunately, both scenarios have all too often been the research experience of people with learning disabilities.

So, as researchers we need to develop ways that we can work in partnership with people with learning disabilities to support their inclusion in both learning disability specific research and in wider research regarding health and well-being whilst also safeguarding against exploitation and other harm 4,5 . This is where the need for creativity comes in.

The concept of reasonable adjustments set out in the Equality Act (2010) 6 requires adjustments to be made to the way in which services are delivered to ensure equality of access for disabled people. This concept is, however, transferable across to the research context and should challenge us to adjust the ways in which we conduct research to promote inclusion. This may, for example, mean considering changing approaches to data collection. In a recent project undertaken with colleagues, we used an on-line survey to gain data from health professionals, families and carers 7 . However, we recognised this approach would not facilitate the involvement of people with learning disabilities and therefore adapted our approach. We conducted focus groups with people with learning disabilities and instead of asking participants to rank items on a scale in terms of importance (as we did in the survey), we used a card sorting exercise and discussion to identify those items of most importance to them.

Capacity to consent (a concern for many researchers considering research with people with learning disabilities) can be influenced by how the information is presented to potential participants. A very detailed participant information sheet using complex language and healthcare ‘jargon’ is unlikely to be understood by those with limited literacy skills. However, presenting the information in an easy read format, supported by relevant pictorial images, and taking time to read through the information sheet with participants may support people with learning disabilities to provide valid consent. (For guidance see ‘How to make information accessible’ 8 ).

A further point to consider is that the term ‘learning disabilities’ applies to people with a wide range of strengths, abilities and needs. Those with what are termed ‘mild learning disabilities’ are often not known to specialist learning disability services and therefore all researchers are likely to encounter such participants when recruiting without realising this. In the context of the Equality Act (2010) the duty, to make reasonable adjustments is an anticipatory duty. In other words, services are proactively required to ensure they are in place rather than just reacting to individual requests. Perhaps we should, therefore, be taking a similar approach in the context of research and develop easy read materials as a matter of course – this would also assist many other groups of people who may have challenges in terms of literacy and comprehension.

Many people with learning disabilities want to participate in research and with the right support and adjustments can do so. Working in creative ways in partnership with people with learning disabilities at all stages of the research process can make this happen. I have learnt (and continue to learn) so much from working in partnership with people with learning disabilities about how I can develop as a better researcher. My challenge to you is to do likewise if you are not already doing so.

• Mencap (2021) Learning Disability Week 2021 #LDWeek2021 | Mencap
• Asylum Projects – Willowbrook State School https://www.asylumprojects.org/index.php/Willowbrook_State_School
• https://www.hra.nhs.uk/planning-and-improving-research/policies-standards-legislation/mental-capacity-act/
• Frankena, T., Naaldenberg, J., Cardol, M., Garcia-Iriarte, E., Buchner, T., Brooker, K., Embregts, P., Joosa, E., Crowther, F., Fudge Schormans, S., Schippers, A., Walmsley, J., O’Brien, P., Linehan, C., Northway, R., van Schrojenstein Lantman-de Walk, H., Leusink, G. (2019) A consensus statement on how to conduct inclusive health research, Journal of Intellectual Disability Research, 63 (1) 1 – 11
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• Equality Act (2010) Equality Act 2010 | Equality and Human Rights Commission (equalityhumanrights.com)
• Improvement CYMRU – Health Profile https://padlet.com/ImprovementCymru/healthprofile
• Change (2016) How to make information accessible – a guide to producing easy read documents https://www.changepeople.org/getmedia/923a6399-c13f-418c-bb29-051413f7e3a3/How-to-make-info-accessible-guide-2016-Final )

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Home > Faculty of Health, Science, Social Care and Education

Learning Disabilities Research Group

About the group.

The Learning Disability Research Group* conducts research related to the health and social care needs of people with learning disabilities (or intellectual disabilities, as it is known outside the UK).

The group, also known as the Yellow Tulip Group, is chaired jointly by faculty members Irene Tuffrey-Wijne (Professor of Intellectual Disability and Palliative Care) and Richard Keagan-Bull (Researcher) who has learning disabilities.

*  Outside the UK, learning disabilities is known as intellectual disabilities.

Irene Tuffrey-Wijne [email protected]

Twitter: @TuffreyWijne

Research that matters

We are interested in doing research that matters to people with learning disabilities, related to health and social care needs. We think that research should include people with learning disabilities.

The Learning Disability Research Group shares experiences and ideas about:

• Research we have done
• Research we want to do
• How we can do research together with people with learning disabilities.

The purpose of this group is to share ideas, learn from each other, and support each other in doing inclusive research with people with learning disabilities. We do this during regular lunchtime meetings (usually the fourth Tuesday of the month at 1pm), where we help and encourage everyone to share academic work and ideas in an accessible format, so group members with learning disabilities can join in with the discussions.

Our research interests are wide-ranging, but we have particular expertise in research around dying, death and bereavement; life transitions; and communication.

We believe that research concerned with the lives of people with learning disabilities must be relevant to them and to their families and carers. The group includes highly experienced senior researchers as well as junior researchers and students. Crucially, it also includes researchers and research advisers who have learning disabilities themselves.

Public and Patient Involvement (PPI) is fundamental to the work of this group, and we hold considerable expertise in this area. Along with the Mental Health Research Group, our group is closely aligned with the Centre for Public Engagement, which supports and champions meaningful involvement in research of people with disabilities, mental health problems, patients and carers.

We have collaborative links with local, national and international organisations including service providers, other academic institutions, and professional networks. One example is the close collaboration with the Palliative Care for People With Learning Disabilities (PCPLD) Network, whose popular webinar and podcast series are hosted by our Faculty.

We want to nurture the future generation of researchers, and welcome inquiries and applications from prospective PhD students.

What we offer

The Learning Disability Research Group offers:

• High quality research projects of national and international relevance
• Access to expertise in conducting learning disability research, both at the Faculty and through collaboration with other universities
• Access to expertise in conducting inclusive research with people with learning disabilities
• Sharing of research ideas, questions and experience
• Monthly meetings
• Occasional research webinars
• PhD supervision
• Support for the Learning Disability Nursing course at Kingston University
• Research training for people with learning disabilities
• Professor Irene Tuffrey-Wijne (CHAIR)
• Richard Keagan-Bull (CO-CHAIR)
• Dr Becky Anderson , Research Associate, Centre for Health and Social Care Research
• Richard Keagan, Bull, Research Assistant, HSSCE
• Jonathon Ding, Research Assistant, HSSCE
• Amanda Cresswell, Research Assistant, HSSCE
• Leon Jordan, Research Assistant, HSSCE
• Sarah Gibson, Research Associate, HSSCE
• Andrea Bruun, Research Associate, HSSCE
• Jo Giles, Research Assistant, HSSCE
• Tasha Marsland, Research Assistant, HSSC
• Sarah Helton , PhD student

Mencap London Research Team

• Bernie Conway
• Carla Barrett

Explore the Palliative Care for People with Learning Disabilities webinars , produced in collaboration with the PCPLD Network.

Research students

Sarah helton.

• Project title: How to ‘talk' about death, bereavement and grief with children/young people with intellectual disabilities - with particular reference to those who are non and pre-verbal
• Supervisors: Professors Irene Tuffrey-Wijne and Jayne Price

Anyone with an interest in learning disabilities research is invited to join our meetings.

Please email Irene at [email protected]  for more information.

The following are especially welcome and encouraged to join:

• Researchers and research advisors with learning disabilities (and their support workers)
• Kingston University students – including all learning disability nursing students
• Tuesdays, 12.00 – 13.00

Meetings are an informal mixture of presentations, questions and answers (led by the chairs), and discussion.

Meetings will be held on Zoom. Everyone is encouraged to keep their camera on and contribute.

The Victoria and Stuart Project: Co-designing a toolkit of approaches and resources for end-of-life care planning (EOLCP) with people with learning disabilities within social care settings

• Chief investigators: Professor Irene Tuffrey-Wijne and Dr Becky Anderson (Kingston University)
• Lead organisations: Kingston University
• Collaborators: MacIntyre, Dimensions, Open University, Voluntary Organisations Disability Group (VODG), The Mary Stevens Hospice
• Topic: End of life care planning with people with learning disabilities
• Dates: 2022-2024
• Funder: NIHR-RfSC (NIHR202963
• Website:   victoriaandstuart.com
• Value of award: £401,993

The Victoria and Stuart Project is about finding the best ways to help people with learning disabilities plan for the end of their life. We want to make sure that people with learning disabilities get the right care and support when they are ill and going to die. We are working with a wide range of people and organisations to try and get this right.

The study includes a literature reviews, focus group discussions, a co-design group (using Experience Based Co-Design) to produce a toolkit of guidance and resources, and a period of trialling the toolkit within learning disability services. There is a strong emphasis on engagement with people with learning disabilities, families, learning disability services, palliative care services and policy makers, with regular blogs, webinar and social media outputs (see our project website).

Staying Alive and Well: Learning from lives and deaths of people with learning disabilities and autistic people (LeDeR)

• Chief investigator: Professor Andre Strydom (King's College London)
• Lead organisation: King's College London
• Principal Investigators at KU: Professor Irene Tuffrey-Wijne and Richard Keagan-Bull
• Collaborators: University of Central Lancaster, Foundations for People with Learning Disabilities, Pathway Associates, Estia Centre
• Topic: Reviewing deaths of people with learning disabilities in England
• Dates: 2022–ongoing
• Funder: NHS England and NHS Improvement
• Website: kcl.ac.uk/research/lederU
• Value of award at KU: £10,200 per year

LeDeR summarises the lives and deaths of people with learning disabilities and autistic people in annual reports, produced by King's College London (3,000+ deaths per years). The Staying Alive and Well Group is the co-production group for this project. It is a group of people with learning disabilities, their supporter and the project leads at KU. Their task is to make the annual reports accessible for people with learning disabilities and contributes to "deep dives" for the LeDeR programme.

Growing Older, Planning Ahead: Improving the support for older people with learning disabilities and behaviours that challenge, family and professional carers, and end of life care planning for carers. Work Package 4: co-producing a family-based support programme

• Chief investigators: Professor Sara Ryan (University of Oxford) and Professor Louise Wallace (Open University).
• Lead organisation: University of Oxford
• PI at KU: Professor Irene Tuffrey-Wijne
• Collaborators: Oxford University, Open University, University of Manchester, Lancaster University, British Association of Social Workers, My Life My Choice, Oxford Family Support Network, Future Directions CIC
• Topic: Transition, challenging behaviour, end-of-life care planning, older people with learning disabilities, families.
• Dates: 2020-2023
• Funder: NIHR-HSDR (NIHR129491)
• Website:   wels.open.ac.uk/research/growing-older-planning-ahead
• Value of award at KU: £233,710

This study aims to improve support for family and professional carers and older people with learning disabilities with behaviours that challenge others. The study will involve rapid scoping reviews, ethnographic case studies, and the development and qualitative evaluation of decision aid tools to support future planning and end of life care discussions. It will co-produce actionable recommendations for commissioners and providers; resources and decision-aids for family carers and people with learning disabilities with behaviours that challenge others; and free online training materials about caring in later life for the public and for professionals.

More about the project:   Improving the support for older people with learning disabilities and behaviours that challenge, family and professional carers, and supporting end of life care planning for carers .

Research Training Skills Course for People with Learning Disabilities

• PI: Professor Irene Tuffrey-Wijne
• Lead organisation: Kingston University and St George's University
• Topic: Research, training, learning disabilities
• Dates: 2019 (6 months)
• Funder: NIHR Innovations Small Grants Scheme
• Value of award at KU: £2,990

A hugely successful project which involved developing and delivering an 8-week research training course for 10 people with learning (intellectual) disabilities.

More about the project:

• Research training course for people with intellectual disabilities
• Our hypothesis was wrong: How people with learning disabilities can become great researchers

Shared decision-making in the palliative phase with people with intellectual disabilities

• Chief investigator: Dr I.J. Korfage
• Lead organisation: Erasmus MC (University Medical Centre Rotterdam, Netherlands)
• Collaborators: Erasmus MC (University Medical Centre Rotterdam, Netherlands), Kingston University and St George's University,
• Topic: Shared decision making, end of life care, learning disabilities
• Dates: 2018-2021
• Funder: ZonMW
• Value of award at KU: £8,164

This study is an evaluation of an existing collaborative decision-making tool that was adapted for use with people with learning disabilities. The evaluation was conducted in 20 residential facilities and 128 relatives of participating clients. The project is also developing training for healthcare workers who will be working with this tool.

More about the project: Gezamenlijke besluitvorming in de palliatieve fase met mensen met een verstandelijke beperking

Pay more attention: A national mixed methods study to identify the barriers and facilitators to ensuring equal access to high quality hospital care and services for children and young people with learning disability and their families

• Chief investigator: Dr Kate Oulton
• Lead: organisation Great Ormond Street Hospital
• Collaborators: Great Ormond Street Hospital, Kingston & St George's University, University College London
• Topic: Patient safety, acute hospitals, children with learning disabilities
• Dates: 2015-2019 (30 months)
• Funder: NIHR-HSDR
• Value of award at KU: £8,395

This mixed methods study aimed to identify the barriers and facilitators to ensuring equal access to high quality hospital care and services for children and young people with and without learning disability and their families. Prioritising the voices of children and young people and their parents in specialist and non-specialist hospitals in England, the project seeks to help drive support for change.

More about the project:  Pay More Attention: A national mixed methods study to identify the barriers and facilitators to ensuring equal access to high quality hospital care and services for children and young people with and without learning disability and their families

The Talking About Dying Survey

• Chief investigator: Professor Irene Tuffrey-Wijne
• Collaborators: University of South Wales, University of Ulster, Glasgow Caledonian University
• Topic: Communication, breaking bad news, death & dying, learning disability
• Dates: 2016-2017 (18 months)
• Funder: Baily Thomas Charitable Fund
• Value of award at KU: £61,064

This study was a UK-wide survey investigating the experiences of staff talking to people with learning disabilities about death, dying and bereavement. Around 700 staff working with people with learning disabilities in residential and supported living services in the UK took part in the survey during 2017 and 2018.

More about the project:   What is the Talking About Dying Survey?

Investigating the factors that affect the communication of death-related bad news to people with learning disabilities by social and health care staff

• Topic: Communication, breaking bad news, learning disability
• Funder: South West London Academic, Health and Social Care System
• Dates: 2015 (6 months)
• Value of award at KU: £9,983

The aims of this qualitative study were twofold: first, to gain further insight into the individual, organisational and contextual factors that affect the communication of death-related bad news to people with intellectual disabilities by intellectual disability staff; and secondly, to develop guidelines for services to enable appropriate communication with clients about death and dying. Data was collected through semi-structured interviews with 20 social care staff working in intellectual disability residential or supported living services in London, and who had supported a client affected by death-related bad news in the previous 6 months.

More about the project:  Investigating the factors that affect the communication of death-related bad news to people with intellectual disabilities by staff in residential and supported living services: An interview study

Publications and books

For publications by members of the Learning Disabilities Research Group please see each member's KU profile .

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Report on Learning Disabilities Research

The psychological, social, and economic consequences of reading failure are legion. It is for this reason that the NICHD considers reading failure to reflect not only an educational problem, but a significant public health problem as well. Within this context, a large, well coordinated network consisting of 18 NICHD-supported research sites across the country has been working extremely hard to understand: (1) the critical environmental, experiential, cognitive, genetic neurobiological, and instructional conditions that foster strong reading development; (2) the risk factors that predispose youngsters to reading failure; and (3) the instructional procedures that can be applied to ameliorate reading deficits at the earliest possible time. In some cases, these NICHD studies have been continuously ongoing since 1965. The majority, however, were initiated in the early and mid-1980 s with youngsters at five years of age and have studied these children longitudinally over the succeeding years. At one NICHD research site, the children are now young adults (21 years of age), with other sites following cohorts that span from elementary grade age through middle and high school.

Some children learn to read and write with ease. Even before they enter school, they have developed an understanding that the letters on a page can be sounded out to make words and some preschool children can even read words correctly that they have never seen before and comprehend what they have read. Research has shown that some of these children, before school, and without any great effort or pressure on the part of their parents, pick up books, pencils, and paper, and they are on their way, almost as though by magic.

However, the magic of this effortless journey into the world of reading is available to only a relatively small percentage of our Nation’s children. It is suggested in the research literature that about 50 percent learn to read relatively easily once exposed to formal instruction, and it seems that youngsters in this group learn to read in any classroom, with any instructional emphasis.

Unfortunately, it appears that for about half of our nation’s children, learning to read is a much more formidable challenge, and for at least 20 to 30 percent of these youngsters, reading is one of the most difficult tasks that they will have to master throughout their life. This is very unfortunate because if you do not learn to read and you live in America, you are not likely to make it in life. Reading skill serves as the major avenue to learning about other people, about history and social studies, the language arts, science, mathematics, and the other content subjects that must be mastered in school. When children do not learn to read, their general knowledge, their spelling and writing abilities, and their vocabulary development suffers in kind. Within this context, reading skill serves as the major foundational skill for all school-based learning, and without it, the chances for academic and occupational success are limited indeed. Because of its importance and visibility, particularly during the primary grades, difficulty learning to read squashes the excitement and love for learning that many youngsters have when they enter school. It is embarrassing and even devastating to read slowly and laboriously and to demonstrate this weakness in front of peers on a daily basis. It is clear from our NICHD-supported longitudinal studies that follow good and poor readers from kindergarten into young adulthood that our young poor readers are largely doomed to such failure from the beginning. By the end of the first grade, we begin to notice substantial decreases in the children’s self-esteem, self-concept, and motivation to learn to read if they have not been able to master reading skills and keep up with their age-mates. As we follow the children through elementary and middle school grades, these problems compound, and, in many cases, very bright youngsters are unable to learn about the wonders of science, mathematics, literature and the like because they can not read the grade-level textbooks. By high school, these children’s potential for entering college has decreased to almost nil, with few choices available to them with respect to occupational and vocational opportunities. These individuals constantly tell us that they hate to read, primarily because it is such hard work, and their reading is so slow and laborious. As an adolescent in one of our longitudinal studies remarked recently, “I would rather have a root canal than read.”

While failure to learn to read adequately is much more likely among poor children, among nonwhite children, and among nonnative speakers of English, recent data derived from the 1994 National Assessment of Educational Progress (NAEP) reveals an alarming trend. In the State of California, 59 percent of fourth grade children had little or no mastery of the knowledge and skills necessary to perform reading activities at the fourth grade level, compared to a national average of 44 percent below basic reading levels. Even more alarming is that this evidence of serious reading failure cuts across all ethnic and socioeconomic strata. For example, the 1994 NAEP data summarizing national trends showed that 32 percent of Whites, 72 percent of African-Americans, 67 percent of Hispanics, 23 percent of Asians, 36 percent of Pacific Islanders, and 55 percent of American Indians were reading below basic levels in the fourth grade. Moreover, 32 percent of the fourth grade children across the Nation who were reading below the basic levels were from homes where the parents had graduated from college. These data underscore the fact that reading failure is a serious national problem and can not simply be attributed to poverty, immigration, or the learning of English as a second language .

How do children learn to read?

Understanding how sounds are connected to print.

In general, learning to read the English language is not as easy as conventional wisdom would suggest. Every type of writing system, whether it be a morphosyllabic system as used by the Chinese (where a written symbol represents a whole word) or an alphabetic system that is used in English, Spanish, and Scandinavian languages (to name a few), presents challenges to the beginning reader. In an English alphabetic system, the individual letters on the page are abstract and meaningless, in and of themselves. They must eventually be linked to equally abstract sounds called phonemes, blended together and pronounced as words, where meaning is finally realized. To learn to read English, the child must figure out the relationship between sounds and letters. Thus, the beginning reader must learn the connections between the approximately 44 sounds of spoken English (the phonemes), and the 26 letters of the alphabet. What our NICHD research has taught us is that in order for a beginning reader to learn how to connect or translate printed symbols (letters and letter patterns) into sound, the would be reader must understand that our speech can be segmented or broken into small sounds ( phoneme awareness) and that the segmented units of speech can be represented by printed forms ( phonics ). This understanding that written spellings systematically represent the phonemes of spoken words (termed the alphabetic principle ) is absolutely necessary for the development of accurate and rapid word reading skills. Unfortunately, children are not born with this insight, nor does it develop naturally without instruction. Hence, the existence of illiterate cultures and of illiteracy within literate cultures. Some children will discover the alphabetic principle prior to formal instruction by having parents or preschool teachers draw their attention to the connections between letters and sounds. Many children, however, are not afforded such opportunities to learn outside of formal schooling, and, for them, NICHD researchers have found that classroom instruction that explicitly addresses the connections between letters and sounds within a literature-rich classroom environment can make a difference between reading failure and reading success.

Why are phoneme awareness and the development of the alphabetic principle so critical for the beginning reader? Because if children cannot perceive the sounds in spoken words — for example, if they cannot “hear” the “at” sound in “fat” and “cat” and perceive that the difference lies in the first sound, they will have difficulty decoding or “sounding out” words in a rapid and accurate fashion. This awareness of the sound structure of our language seems so easy and commonplace that we take it for granted. But many children do not develop phoneme awareness, and for some interesting reasons that we are now beginning to understand. Unlike writing, the speech we use to communicate orally does not consist of separate sounds in words. For example, while a written word like “cat” has three letter-sound units, the ear hears only one sound, not three, when the word “cat” is spoken aloud. This merging and overlapping of sounds into a sound “bundle” makes oral communication much more efficient. Consider how long it would take to have a conversation if each of the words that we uttered were segmented or “chopped” into their sound structure. In essence we would be spelling aloud the words that we were speaking. From the NICHD studies that were initiated in 1965 to understand how the reading process develops, we now have strong evidence that it is not the ear that understands that a spoken word like “cat” is divided into three sounds and that these discrete sounds can be linked to the letters CAT. Rather, we know it is the language systems in the brain that performs this function. In some youngsters, the brain seems to have an easy time processing this type of information. However, in many children that skill is only learned with difficulty, and thus must be taught directly, explicitly, and by a well-prepared and informed teacher. It also has become clear that the development of these critical early reading-related skills, such as phoneme awareness and phonics, are fostered when children are read to at home during the preschool years, when they learn their letter and number names, and when they are introduced at very early ages to concepts of print and literacy activities.

Does this mean that children who have a difficulty understanding that spoken words are composed of discrete individual sounds that can be linked to letters suffer from brain dysfunction or damage? Not at all. It simply means that the neural systems that perceive the phonemes in our language are less efficient in these children than in other children. Other difference in neural efficiency can also be hypothesized to underlie the individual differences that we see every day if we observe people as they attempt to learn any skill such as singing, playing an instrument, constructing a house, painting a portrait, and the like. In some cases, our NICHD studies have taught us that the phonological differences we see in good and poor readers have a genetic basis, although it is important to note that genetic influences in reading can be modified significantly by environmental factors. In other children, the differences seem to be attributable to a lack of exposure to language patterns and literacy-based materials during the critical preschool years. In most cases however, the majority of children can be taught to read with appropriate and timely instruction, if the instruction is presented by properly trained teachers.

The development of phoneme awareness, the development of an understanding of the alphabetic principle, and the translation of these skills to the application of phonics in reading and spelling words are non-negotiable beginning reading skills that all children must master in order to understand what they read and to learn from their reading sessions. Printed letters and words are the basic data on which reading depends, and the emerging reader must be able to recognize with accuracy spelling patterns and their mappings to speech. These skills are supported nicely when children receive an abundance of early literacy experiences in the home and in preschool. But the development of phoneme awareness and phonics, while necessary, are not sufficient for learning to read the English language so that meaning can be derived from print. In addition to learning how to “sound out” new and/or unfamiliar words, the beginning reader must eventually become proficient in r eading at a fast pace larger units of print such as syllable patterns, meaningful roots, suffixes, and whole words.

The development of reading fluency

While the ability to read words accurately is a necessary skill in learning to read, the speed at which this is done becomes a critical factor in ensuring that children understand what they read. As one child recently remarked, “If you don’t ride a bike fast enough, you fall off.” Likewise, if the reader does not recognize words quickly enough, the meaning will be lost. Although the initial stages of reading for many students require the sequential learning of phoneme awareness and phonics principles, substantial practice and continual application of those skills, fluency and automaticity in decoding and word recognition must be acquired as well. Consider that a young reader (and even an older reader for that matter) has only so much attentional capacity and cognitive energy to devote to a particular task. If the reading of the words on the page is slow and labored, the reader simply cannot remember what he or she has read, much less relate the ideas they have read about to their own background knowledge. Children vary in the amount of practice that is required for fluency and automaticity in reading to occur. Some youngsters can read a word only once to recognize it again with greater speed; others need 20 or more exposures. The average child needs between four and 14 exposures to automatize the recognition of a new word. Therefore, in learning to read, it is vital that children read a large amount of text at their independent read ing level (with 95 percent accuracy), and that the text provide specific practice in the skills being learned. It is also important to note that spelling instruction fosters the development of reading fluency. Through spelling instruction, youngsters receive many examples of how letters represent the sounds of speech and also alert the young reader to the fact that written words are made up of larger units of print (like syllables). This insight lets the developing reader know that word recognition can be accomplished by reading words in larger “chunks” rather than letter-by-letter.

Constructing meaning from print

The ultimate goal of reading instruction is to enable children to understand what they read. Again, the development of phoneme awareness, phonics skills, and the ability to read words fluently and automatically are necessary, but not sufficient, for the construction of meaning from text. The ability to understand what is read appears to be based on several factors. Children who comprehend well, seem to be able to activate their relevant background knowledge when reading — that is, they can relate what is on the page to what they already know. Good comprehenders also must have good vocabularies, since it is extremely difficult to understand something you can not define. Good comprehenders also have a knack for summarizing, predicting, and clarifying what they have read, and they frequently use questions to guide their understanding. Good comprehenders are also facile in employing the sentence structure within the text to enhance their comprehension.

In general, if children can read the words on a page accurately and fluently, they will be able to construct meaning at two levels. At the first level, literal understanding is achieved. However, constructing meaning requires far more than literal comprehension. The children must eventually actively guide themselves through text by asking questions like, “Why am I reading this and how does this information relate to my reasons for doing so?,” “What is the author’ s point of view? ,” ” Do I understand what the author is saying and why?,” “Is the text internally consistent?,” and so on. It is this second level of comprehension that leads readers to reflective, purposeful understanding of the meaning of what they have read.

The development of reading comprehension skills, like the development of phoneme awareness, phonics, and reading fluency, needs to be fostered by highly trained teachers. Recent research shows that the teacher must arrange for opportunities for students to discuss the highlights of what they have read and any difficulties they have had when reading. Because the grammatical structures of written text are more varied and complex than those of casual, oral language (speaking to one another), regular exploration and explicit instruction on formal syntax is warranted. Children’s reflections on what they have read can also be directly fostered through instruction in comprehension strategies . These sorts of discussions and activities should be conducted throughout a range of literacy genres, both fiction and nonfiction, and should be a regular component of the language arts curriculum throughout the children’s school years.

Other factors that influence learning to read

Our research continues to converge on the following findings. Good readers are phonemically aware, understand the alphabetic principle, can apply these skills to the development and application of phonics skills when reading and spelling words, and can accomplish these applications in a fluent and accurate manner. Given the ability to rapidly and automatically decode and recognize words, good readers bring strong vocabularies and good syntactic and grammatical skills to the reading comprehension process, and actively relate what is being read to their own background knowledge via a variety of strategies. But what factors can provide a firm foundation for these skills to develop?

It is clear from research on emerging literacy that learning to read is a relatively lengthy process that begins very early in development and clearly before children enter formal schooling. Children who receive stimulating literacy experiences from birth onward appear to have an edge when it comes to vocabulary development, understanding the goals of reading, and developing an awareness of print and literacy concepts. Children who are read to frequently at very young ages become exposed in interesting and exciting ways to the sounds of our language, to the concept of rhyming, and to other word and language play activities that serve to provide the foundation for the development of phoneme awareness. As children are exposed to literacy activities at young ages, they begin to recognize and discriminate letters. Without a doubt, children who have learned to recognize and print most letters as preschoolers will have less to learn upon school entry. The learning of letter names is also important because the names of many letters contain the sounds they most often represent, thus orienting youngsters early to the alphabetic principle or how letters and sounds connect. Ultimately, children’s ability to understand what they are reading is inextricably linked to their background knowledge. Very young children who are provided opportunities to learn, think, and talk about new areas of knowledge will gain much from the reading process. With understanding comes the clear desire to read more and to read frequently, ensuring that reading practice takes place.

Why are so many children having difficulty learning to read?

Difficulties learning to read result from a combination of factors. In general, children who are most at-risk for reading failure are those who enter school with limited exposure to language and thus less prior knowledge of concepts related to phonemic sensitivity, letter knowledge, print awareness , the purposes of reading, and general verbal skills, including vocabulary. Children raised in poverty, youngsters with limited proficiency in English, children with speech and hearing impairments, and children from homes where the parent’s reading levels are low are clearly at increased risk of reading failure. Likewise, youngsters with subaverage intellectual capabilities have difficulties learning to read. However, it is very important to note that a substantial number of children from highly literate households and who have been read to by their parents since very early in life also have difficulties learning to read.

Given this general background, recent research has been able to identify and replicate findings which point to at least four factors that hinder reading development among children irrespective of their environmental, socioeconomic, ethnic, and biological factors. These four factors include

• deficits in phoneme awareness and developing the alphabetic principle
• deficits in acquiring reading comprehension strategies and applying them to the reading of text
• deficits in developing and maintaining the motivation to learn to read
• limitations in effectively preparing teachers

Deficits in phoneme awareness and developing the alphabetic principle

Invariably, it is difficulty linking letters with sounds that is the source of reading problems and children who have difficulties learning to read can be readily observed. The signs of such difficulty are a labored approach to decoding or “sounding” unknown or unfamiliar words and repeated misidentification of known words. Reading is hesitant and characterized by frequent starts and stops and multiple mispronunciations. If asked about the meaning of what has been read, the child frequently has little to say. Not because he or she is not smart enough; in fact, many youngsters who have difficulty learning to read are bright and motivated to learn to read — at least initially. Their poor comprehension occurs because they take far too long to read the words, taxing their memory and leaving little energy for remembering and understanding what they have read.

Unfortunately, there is no way to bypass this decoding and word recognition stage of reading. A deficiency in these skills cannot be appreciably offset by using context to figure out the pronunciation of unknown words. In essence, while one learns to read for the fundamental purpose of deriving meaning from print, the key to comprehension starts with the immediate and accurate reading of words. In fact, difficulties in decoding and word recognition are at the core of most reading difficulties. To be sure, there are some children who can read words accurately and quickly yet do have difficulties comprehending, but they constitute a very small portion of those with reading problems.

If the ability to gain meaning from print is dependent upon fast, accurate, and automatic decoding and word recognition, what factors hinder the acquisition of these basic reading skills? As mentioned above, young children who have a limited exposure to both oral language and print before they enter school are at-risk for reading failure. However, many children with robust oral language experience, average to above intelligence, and frequent interactions with books since infancy show surprising difficulties learning to read. Why?

In contrast to good readers who understand that segmented units of speech can be linked to letters and letter patterns, poor readers have substantial difficulty in developing this “alphabetic principle.” The culprit appears to be a deficit in phoneme awareness — the understanding that words are made up of sound segments called phonemes. Difficulties in developing phoneme awareness can have genetic and neurobiological origins or can be attributable to a lack of exposure to language patterns and usage during infancy and the preschool years. The end result is the same, however. Children who lack phoneme awareness have difficulties linking speech sounds to letters — their decoding skills are labored and weak, resulting in extremely slow reading. As mentioned, this labored access to print renders comprehension nearly impossible. Thus, the purpose for reading is nullified because the children are often too dysfluent to make sense out of what they read.

In studying approximately 10,000 children over the past 15 years, NICHD research has documented the following with respect to the role that phonemic awareness plays in the development of phonics skills and fluent and automatic word reading:

• Phonemic awareness skills assessed in kindergarten and first grade serve as potent predictors of difficulties learning to read. With a test that takes only 15 minutes to administer, we have learned how to measure phonemic awareness skills as early as the beginning of kindergarten, and over the past decade we have refined these tasks so that we can predict with approximately 92 percent accuracy who will have difficulties learning to read.
• We have learned that the average cost of assessing each child during kindergarten or first grade with the predictive measures is approximately $10 to $15. This cost estimate includes the costs of the assessment materials.
• We have learned that the development of phonemic awareness is a necessary, but not sufficient, condition for learning to read. A child must integrate phonemic skills into the learning of phonics principles, must practice reading so that word recognition is rapid and accurate, and must learn how to actively use comprehension strategies to enhance meaning.
• We have begun to understand how neurobiological factors influence how we learn to read. For example, we have learned genetics are involved in learning to read, and this knowledge may ultimately contribute to early identification efforts through the assessment of family reading histories. We have also learned that the environment plays a major role in learning to read and that environmental and genetic factors interact in complex ways yet to be fully understood.
• We have begun to learn how the brain itself carries out the different steps of the reading process. With new imaging technology, we can now “see” the actual neural systems used when both good and poor readers try to sound out novel words. Differences between neural patterns in these groups of readers may provide new insights into more precise and effective intervention strategies. While these new discoveries are indeed exciting, much research remains to be done in order to interpret the findings appropriately.
• We are entering very exciting frontiers in understanding how early brain development can provide a window on the reading process. Our studies are helping us understand how specific teaching methods change reading behavior and how the brain changes as reading develops. As we continue to conduct this type of research we are hopeful that this information may help us understand how to best tailor specific teaching strategies to individual children.
• We have learned that just as many girls as boys have difficulties learning to read. The conventional wisdom has been that many more boys than girls had such difficulties. Now females should have equal access to screening and intervention programs.
• We have learned that for 85 to 90 percent of poor readers, prevention and early intervention programs that combine instruction in phoneme awareness, phonics, spelling, reading fluency, and reading comprehension strategies provided by well-trained teachers can increase reading skills to average reading levels. However, we have also learned that if we delay early intervention until nine-years-of-age, (the time that most children with reading difficulties first receive services), approximately 75 percent of these children will continue to have difficulties learning to read throughout high school and their adult years. To be clear, while older children and adults can be taught to read, the time and expense of doing so is enormous compared to what is required to teach them when they are five or six years old.
• We have learned that no single method, approach, or philosophy for teaching reading is equally effective for all children. Rather the key to ensuring that all children reach their potential in learning to read rests with the formal training and experiences that teachers receive in assessing individual differences in learning to read during preschool, kindergarten, and primary grade years; in developing in-depth knowledge about reading development and difficulties; in having a clear understanding of the skills that are critical for learning to read and reading to learn; and having a depth and breadth of knowledge that will allow each teacher to develop tailored reading programs for those children who are having difficulty learning to read. In short, teacher preparation is the key to teaching our Nation’ s children to read, to learn from reading, and to enjoy reading.

Deficits in acquiring reading comprehension strategies

Some children encounter obstacles in learning to read because they do not derive meaning from the material that they read. In the upper grades, higher order comprehension skills become paramount for learning. Reading comprehension places significant demands on language comprehension and general verbal abilities. Constraints in these areas will typically limit comprehension. Specifically, deficits in reading comprehension are related to:

• inadequate background knowledge about the domains represented in the text;
• a lack of familiarity with the semantic and syntactic structures that can help to predict the relationships between words
• a lack of knowledge about different writing conventions that are used to achieve different purposes via text (humor, explanation, dialogue, etc.)
• a deficit in the verbal reasoning ability which would enable the reader to “read between the lines;” and
• a lack of the ability to remember verbal information.

If children are not provided early and consistent experiences that are explicitly designed to foster vocabulary development, background knowledge, the ability to detect and comprehend relationships among verbal concepts, and the ability to actively employ strategies to ensure understanding and retention of material, reading failure will occur no matter how robust word recognition skills are.

Our current understanding of how to develop many of these critical language and reasoning capabilities related to reading comprehension is not as well developed as the information related to phoneme awareness, phonics, and reading fluency. We have not yet obtained clear answers with respect to why some children have a difficult time learning vocabulary and how to improve vocabulary skills. Our knowledge about the causes and consequences of deficits in syntactical development is sparse. A good deal of excellent research has been conducted on the application of reading comprehension strategies, but our knowledge of how to help children use these strategies in an independent manner and across contexts is just emerging.

Deficits in developing and maintaining the motivation to learn to read

A major factor that limits the amount of improvement that a child may make in reading is related to the motivation to continue the learning process. Very little is known with respect to the exact timing and course of motivational problems in the learning to read process, but it is clear that difficulties in learning to read are very demoralizing to children. In the primary grades, reading constitutes the major portion of academic activities undertaken in classrooms, and children who struggle with reading are quickly noticed by peers and teachers. Although most children enter formal schooling with positive attitudes and expectations for success, those who encounter difficulties learning to read clearly attempt to avoid engaging in reading behavior as early as the middle of the first grade year. It is known that successful reading development is predicated on practice reading, and obviously the less a child practices, the less developed the various reading skills will become. To counter these highly predictable declines in the motivation to learn to read, prevention and early intervention programs are critical. Over time, there will be an inverse relationship between the ease of learning to read and the effort required to learn to read — clearly, the need to exert enormous amounts of effort will take its toll on many would-be, but now discouraged, readers.

Deficits in effectively preparing teachers

As evidence mounts that reading difficulties originate in large part from difficulties in developing phoneme awareness, phonics, spelling skills, reading fluency, and reading comprehension strategies, the need for informed instruction for the millions of children with insufficient reading skills is an increasingly urgent problem. Unfortunately, several recent studies and surveys of teacher knowledge about reading development and difficulties indicate that many teachers are under prepared to teach reading. Most teachers receive little formal instruction in reading development and disorders during either undergraduate and/or graduate studies, with the average teacher completing only two reading courses. Surveys of teachers taking these courses indicate consistently that very few of them have ever observed professors demonstrating instructional reading methods with children; teachers also report that their course work is largely unrelated to actual teaching practices, that the theories they learn are rarely linked to the actual instruction of children, and that the supervision of student teaching and practicum experiences is frequently lacking in consistency and depth. At present, motivated teachers are often left on their own to obtain specific skills in teaching phonemic awareness, phonics, spelling, reading fluency, and comprehension by seeking out workshops or specialized instructional manuals. As we survey teachers perceptions of their preparation, we find consistently that they are “method-driven” rather than conceptually prepared to teach the range of skills required to learn to read.

Clearly teachers instructing youngsters who display reading difficulties should be well versed in understanding the conditions that must be present for children to develop robust reading skills, and be thoroughly trained to assess and identify problem readers at early ages. Unfortunately, many teachers and administrators have been caught between conflicting schools of thought about how to teach reading and how to help students who are not progressing easily. In their reading education, teachers are frequently presented with a “one size fits all” philosophy that emphasizes either a “whole language” or “phonics” orientation to instruction. No doubt, this parochial type of preparation places many children at continued risk for reading failure since it is well established that no reading program should be without all the major components of reading instruction (phoneme awareness, phonics, spelling, fluency, and reading comprehension) and the real question is which children need what, when, for how long, with what type of instruction, and in what type of setting.

It is hard to find disagreement in the educational community that the direction and fabric of teacher education programs in language arts and reading must change. However, bringing about such change will be difficult. In addition, if teacher preparation in the area of language and reading is expected to become more thoughtful and systematic, it is a must that changes be made in how teaching competencies and certification requirements are developed and implemented. Currently in many states, the certification offices within state departments of education do not maintain formal and collaborative relationships with academic departments within colleges of education. Thus, the requirements that a student may be expected to satisfy for a college degree may bear little relationship to the requirements for a teaching certificate, and even more alarming is the fact that many of the requirements are not based upon the best research related to reading development and disorders.

How can we help children learn to read?

Learning to read is a lengthy and difficult process for many children, and success in learning to read is based in large part on developing language and literacy-related skills very early in life. A massive effort needs to be undertaken to inform parents, and the educational and medical communities of the need to involve children in reading from the first days of life; to engage children in playing with language through nursery rhymes, storybooks, and writing activities; and, as early as possible, to bring to children experiences that help them understand the purposes of reading, and the wonder and joy that can be derived from it. Parents must become intimately aware of the importance of vocabulary development and the use of verbal interactions with their youngsters to enhance grammar, syntax, and verbal reasoning.

Young preschool children should be encouraged to learn the letters of the alphabet, to discriminate letters from one another, to print letters, and to attempt to spell words that they hear. By introducing young children to print, their exposure to the purposes of reading and writing will increase and their knowledge of the conventions of print and their awareness of print concepts will increase.

Reading out loud to children is a proven activity for developing vocabulary growth and language expansion, and plays a causal role in developing both receptive and expressive language capabilities. Reading out loud can also be used to enhance children’s background knowledge of new concepts that may appear in both oral and written language. However, we must have a clear understanding that reading aloud to children is a necessary, but not sufficient means to teaching reading skills. Again, the ability to read requires a number of skills that, in most children, must be developed via direct and informed instruction provided by properly prepared teachers.

Our NICHD prevention and early intervention studies in Houston, Texas, Tallahassee, Florida, and Albany, New York, as well as other NIH supported research programs, all speak to the importance of early identification and intervention with children at-risk for reading failure. Procedures now exist to identify such children with good accuracy. This information needs to be widely disseminated to schools, teachers, and parents.

Kindergarten programs should be designed so that all children will develop the prerequisite phonological, vocabulary, and early reading skills necessary for success in the first grade. All children should acquire the ability to recognize and print both upper and lowercase letters with reasonable ease and accuracy, develop familiarity with the basic purposes and mechanisms of reading and writing, and develop age-appropriate language comprehension skills.

Beginning reading programs should be constructed to ensure that adequate instructional time be allotted to the teaching of phonemic awareness skills, phonics skills, the development of spelling and orthographic skills, the development of reading fluency and automaticity, and the development of reading comprehension strategies. All of these components of reading are necessary, but not sufficient, in, and of, themselves. For children demonstrating difficulty in learning to read, it is imperative that each of these components be taught in an integrated context and that ample practice in reading familiar material be afforded.

A major impediment to serving the needs of children demonstrating difficulties learning to read is current teacher preparation practices. Many teachers lack basic knowledge and understanding of reading development and the nature of reading difficulties. Major efforts should be undertaken to ensure that colleges of education possess the expertise and commitment to foster expertise in teachers at both preservice and inservice levels. Strong competency-based training programs with formal board certification for teachers of reading should be developed.

We need to develop a formal procedure to assess the current status of scientific research-based knowledge relevant to reading development, reading disorders, and the effectiveness of various approaches to teaching children to read. We also need to develop strategies for rapid dissemination of this information to facilitate teacher preparation and effective reading instruction in our Nation’s schools. The NICHD is collaborating with the U.S. Department of Education and other agencies to develop a reading research assessment initiative to meet this need. In addition to the assessment and dissemination activities, if warranted, the initiative would recommend a plan for needed additional research regarding early reading development and instruction.

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Research priorities, page content, what is a priority setting partnership, research priorities for dysphagia, research priorities for developmental language disorder, research priorities for learning disabilities, what do the research priorities mean for me, next steps and support from the rcslt research team.

The RCSLT has embarked on a project to develop the top priorities for new research in speech and language therapy, using a priority setting partnership (PSP). PSPs enable clinicians, patients and carers to work together to identify and prioritise evidence uncertainties, in particular areas of health and care, that could be answered by research.

It is anticipated that the research priorities identified will be used by researchers, higher education institutes and research funders, to guide future research.

How has the RCSLT addressed setting research priorities?

The RCSLT has used a Research Priorities Working Group to agree the scope and approach to the projects and to oversee the delivery.

In 2015, RCSLT members completed a questionnaire that asked for SLTs’ thoughts on gaps in the evidence base that impact on their delivery of quality care.

Five key clinical areas were identified as those that required a PSP first:

• Learning disabilities
• Developmental language disorders (DLD)

For the first three of these areas, SLTs, patients/service users and other professionals, worked together to use the evidence gaps to develop a list of research questions.

The long list was then prioritised to develop a ‘top 10’ list of questions for each area. This was done via a second online questionnaire involving SLTs, service users and other professionals.

The RCSLT has developed top 10 priorities for research in dysphagia, learning disabilities and developmental language disorders (DLD).

Download resources to learn about the research priorities in dysphagia for the speech and language therapy profession:

• Setting collaborative research priorities in dysphagia poster (PDF)
• Dysphagia: Top 10 adult research priorities (PDF)
• Dysphagia: Top 10 paediatric research priorities (PDF)
• Dysphagia: Top 10 general/non age group specific priorities (PDF)
• Long list of dysphagia research priorities (PDF)
• The methods used in the dysphagia research priorities project have been published in  BMJ Open 2022

Since the priorities were published, there have been annual campaigns to document what research has been conducted in relation to them.

• See projects carried out in the  first 12 months related to the dysphagia research priorities (PDF)  and  download infographics of the project profiles (PDF)
• See projects carried out (PDF)  in the second year since publication, related to the dysphagia research priorities and  download infographics of the project profiles (PDF)

RCSLT is revisiting and extending the original developmental language disorder (DLD) project, to translate the research priority areas into fundable research questions that we can submit to funding bodies. This will complete in early 2025.

We have appointed a researcher to lead this project, but if you are interested in contributing to this second phase of the project, either as a clinician or as a researcher, please contact [email protected] .

DLD priorities resources

Download resources to learn about the research priorities in DLD for the speech and language therapy profession:

• Top 10 list of DLD research priorities (PDF)
• Full information about the  DLD research priority setting partnership project (PDF)  is detailed in a report, featuring a foreword from Dorothy Bishop and Courtenay Norbury
• The Top 10 have been presented as an editorial perspective piece in  The Journal of Child Psychology and Psychiatry  (2022)
• Methods for setting collaborative research priorities in DLD (PDF)
• The methods used in this project have been published in the JoVE journal as a paper (2020) and as a video (2023)
• Long list of developmental language disorder research priorities (PDF)

Since these priorities were published, there has been a campaign to document what research has been conducted in relation to the top 10 priorities.

• See RCSLT members’ current projects relating to the  DLD research priorities (PDF) .

Download resources to learn about the learning disabilities (LD) research priorities for the speech and language therapy profession:

• We revisited and extended the LD PSP project to translate the research priorities into fundable research questions. Information about phase one and two of the project can be found in our updated learning disabilities PSP report (PDF) . An easy read document (PDF) and video version of the report are also available.
• Top 10 list of learning disabilities research priorities (PDF)
• Long list of learning disabilities research priorities (PDF)
• The methods and results of this project have been published in  Tizard learning disability review (2022) .
• A commentary paper which presents reflections from a team of speech and language therapists and the impact that the LD research priorities have had on their work.

Since these priorities were published, there have been two annual campaigns to document what research has been conducted in relation to the top 10 priorities.

• See RCSLT members’  current projects related to the learning disabilities research priorities (PDF)

View the supplementary material to our article published in Tizard Learning Disability Review ‘ Learning disabilities: PSP process, data and documentation’ (PDF) .

There are lots of ways you can use the priorities to support your work.

If you’re a speech and language therapist: 

• Share the priorities with your networks, including service users and families.
• Ask service users and families what they think about the priorities.
• Use the priorities to inform a journal club meeting.
• Discuss the priorities at a team meeting, clinical excellence network (CEN) event.
• Review an article in relation to a priority area for the ‘in the journals’ column in Bulletin ( Email Bulletin for details).
• Carry out a clinical audit or quality improvement project related to a priority area.

If you’re a researcher conducting research in the field of speech and language therapy:

• Let us know about any existing/potential work you know is happening in relation to a priority area.
• Tell us about relevant funding bodies, stakeholders and funding opportunities, particularly local ones.
• Use a priority area to inform your student dissertation project or to develop your research proposal/National Institute for Health Research fellowship application.
• The working group met in 2020 to discuss next steps for the RCSLT priority setting partnership (PSP) project and decided that autism and aphasia clinical areas were no longer priority areas, as Autistica and the  Stroke Association  have already begun their own PSPs in this area.
• Further work is required to ensure full impact of the current top 10 priorities for research, before addressing further clinical areas.
• The methods and findings for translating research priorities to fundable research questions for learning disabilities has been published. Work will begin on developing a translation phase for research priorities relating to DLD in 2024.
• There will be ongoing activities promoting the RCSLT research priorities and translated questions and collating emerging research relating to the priorities.

How can the RCSLT research team support me?

The research team are happy to support your activities in relation to any of the research priorities. We can provide advice about your project, a letter of support and relevant resources to support your activity. We can also help you to share information on the research/activities that you are carrying out.

Get in touch by:

• Starting a conversation on Twitter and tagging  @RCSLTResearch
• Emailing  [email protected]

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Current research topics in learning disabilities

Research output : Contribution to journal › Article › peer-review

To determine the critical research priorities in learning disabilities and the way in which current research activities address these issues, a survey of leading professionals and an analysis of two leading LD journals were conducted. Survey results pointed to treatment maintenance, generalization, and assessment and remediation of academic problems as the highest ranked priorities. Present publication topics were found to address some of the more frequently mentioned issues including academic assessment and remediation, while ignoring generalization and maintenance of treatment effects as well as early identification and prevention of learning disabilities. Implications of survey and journal-analysis results are drawn.

ASJC Scopus subject areas

• General Health Professions
• Behavioral Neuroscience

Access to Document

• 10.2307/1510749

Other files and links

• Link to publication in Scopus
• Link to the citations in Scopus

Fingerprint

• Learning Disabilities Medicine & Life Sciences 100%
• learning disability Social Sciences 76%
• present Social Sciences 14%

T1 - Current research topics in learning disabilities

AU - Bursuck, William D.

AU - Epstein, Michael H.

PY - 1987/2

Y1 - 1987/2

N2 - To determine the critical research priorities in learning disabilities and the way in which current research activities address these issues, a survey of leading professionals and an analysis of two leading LD journals were conducted. Survey results pointed to treatment maintenance, generalization, and assessment and remediation of academic problems as the highest ranked priorities. Present publication topics were found to address some of the more frequently mentioned issues including academic assessment and remediation, while ignoring generalization and maintenance of treatment effects as well as early identification and prevention of learning disabilities. Implications of survey and journal-analysis results are drawn.

AB - To determine the critical research priorities in learning disabilities and the way in which current research activities address these issues, a survey of leading professionals and an analysis of two leading LD journals were conducted. Survey results pointed to treatment maintenance, generalization, and assessment and remediation of academic problems as the highest ranked priorities. Present publication topics were found to address some of the more frequently mentioned issues including academic assessment and remediation, while ignoring generalization and maintenance of treatment effects as well as early identification and prevention of learning disabilities. Implications of survey and journal-analysis results are drawn.

UR - http://www.scopus.com/inward/record.url?scp=84924875434&partnerID=8YFLogxK

UR - http://www.scopus.com/inward/citedby.url?scp=84924875434&partnerID=8YFLogxK

U2 - 10.2307/1510749

DO - 10.2307/1510749

M3 - Article

AN - SCOPUS:84924875434

SN - 0731-9487

JO - Learning Disability Quarterly

JF - Learning Disability Quarterly

160 Disabilities Topics for Research Papers & Essays

Looking for interesting disability topics for a research paper or project? This field is hot, controversial, and definitely worth studying!

🏆 Best Disability Topics for Research Papers

👍 disability essay topics, 📑 research questions about disabilities, 🎓 good research topics about disabilities.

The disability study field includes the issues of physical, mental, and learning disabilities, as well as the problem of discrimination. In this article, we’ve gathered great disability essay topics & research questions, as well as disability topics to talk about. We hope that our collection will inspire you.

• Case Study of a Child with Intellectual Disability It is crucial to integrate the input of a learning coach into the school curriculum to encourage the participation of Meagan’s parents in his educational endeavors.
• Students With Disabilities in Higher Education Institutions Accommodations for students depend on the disability type that the student has, and whether the disability allows the student to get an accommodation in the institution.
• Poems with Disabilities by Jim Ferris This is good evidence for the argument of the need to eliminate the issue of ableism. Language evolves gradually, and countering the issue of ableism is a long-term goal.
• Government Grants for People With Disabilities The paper will be based on the conditions of disabled people and the federal or state grants that they could receive in order to facilitate changes in their health and work.
• Managing Students With Disabilities Instructional issues that are encountered in education are those arising due to the inability of the students to acquire, maintain, and relate the skills that are learned in class to other settings within and outside […]
• Women, Development and Disabilities The mission of the organization is to enhance the voice of women in society and influence other organizations that advocate for women rights.
• Sociocultural Barriers for People With Disabilities On the other hand, stigmatization, stereotyping and prejudice have been highlighted as the barriers to social inclusion of people with disabilities in society.
• The Problems of Children With Disabilities and Possible Ways of Solution It is very important for disabled people to be on the same level with others in the conditions that compensate the deviations in the development and constraints of the abilities in learning.
• Learning Disabilities: Differentiating ADHD and EBD As for the most appropriate setting, it is possible to seat the child near the teacher. It is possible to provide instructions with the help of visual aids.
• Children With Disabilities in Education By the end of the experiment the student will demonstrate his ability to understand the information, to discuss it, and to reflect his ideas in writing.
• Computer-Based Technologies That Assist People With Disabilities The visually impaired To assist the visually impaired to use computers, there are Braille computer keyboards and Braille display to enable them to enter information and read it. Most of these devices are very expensive […]
• Children With Learning Disabilities The following research questions will be used in achieving the objectives: What is the role of learning disabilities in affecting the ability of the students to learn?
• Ableism: Bias Against People With Disabilities People concerned with rights advocacy ought to ensure a facilitated awareness of the distressing impacts of ableism through the inclusion of the subject in private and public discussions.
• Employees With Disabilities and Their Workplace Behavior In H3, the authors found that employees with disabilities remained loyal and committed to work and were satisfied with their job.
• Mental Disabilities: Characteristics and Causes TBIs are caused by an impact of the head against a blunt object or from its penetration by a sharp object; it often results from vehicle accidents. Autism is a developmental disorder that influences the […]
• Adaptive Behavior Skills and Intellectual Disabilities Four assessment tools are important for identifying adaptive behavior and skills: the Adaptive Behavior Scale, the Scale of Independent Behavior, and the Vineland Adaptive Behavior Scale.
• Grandparents Raising Grandchildren With Disabilities In the case of their absence, these grandparents worry about the well-being of their disabled grandchildren and the influence they have on other children.
• Autism and Educational Process Owing to these adverse effects that can stem from autism and the shear prevalence of the condition in the country’s population, a lot of research effort has been dedicated to the early diagnosis and treatment […]
• Lawsuits Regarding College Students With Disabilities Abuse is one of the factors considered to have discouraged physically challenged students from pursuing their academic careers.
• Living with Disabilities from an Insider’s Perspective Additionally, Armendariz was able to use a prosthetic arm to assist with her disability which she recalled as being helpful before it led to severe negativity from her peers at the time.
• People With Disabilities in the Frida Movie After the accident, her father bought her a canvas that she would use for painting because she loved art and was an artist, helping her cope with her disability.
• Safety Evacuation for People with Disabilities First, before a disaster occurs, the government should be aware of the number of individuals in the scenario and keep track of them to verify the figures are correct.
• Individuals with Disabilities: Social Misconceptions One of the misconceptions I noticed is the community’s attitudes to people with disability. Community views about individuals with disabilities can also be impacted by features of the person with a disability unrelated to the […]
• Individuals With Disabilities: Prejudice and Discrimination I researched that people with persistent medical or physical disorders, such as cerebral palsy or multiple sclerosis, who have speech, articulation, or communication impairments, for example, are sometimes seen as having an intellectual deficiency. Corey […]
• Special Olympics and Profound Intellectual and Multiple Disabilities Together with partners, the Special Olympics aspires to improve the health outcomes for people with physical and mental disabilities to close the gap with the healthy population who are more advantaged in terms of access […]
• The Ohio Department of Developmental Disabilities Policy The paper outlines the proper policy and procedure of incident reporting and investigation and thus, provides how to become an agent for the Ohio Department of Developmental Disabilities and satisfy individuals receiving services.
• Ohio Department of Developmental Disabilities’ Staff Training Specifically, the introduction of the assessment modules for the evaluation of the staff members’ compliance with the set requirements will be enacted.
• The Quality of the Working Environment for Persons With Disabilities The progressive introduction of new practices more tolerant of the disabled will be carried out at every stage of the work cycle and in every segment of the corporation as a connected infrastructure.
• Developmental Disabilities: Best Practice and Support Family therapy and the creation of support groups seem to be an effective method for children with disabilities and their environment.
• Bronx Developmental Disabilities Council: Organization Assessment During events, council, and committee meetings, the organization provides printed materials with information on disability and the prevention of social distancing of people with disabilities.
• Assistive Technologies for Individuals with Disabilities A rehabilitation consultant will be able to recommend this equipment to people who are acutely worried about the inability to use a computer and the Internet to ensure a comfortable life.
• Smart Farms Hiring People with Disabilities Although Smart Farms is a non-profit organization and benefits from donations, the workers play their role in income generation by working on the farms and sales.
• Americans with Disabilities Act and Nursing Practice Acts such as the Americans with Disabilities Act affect not only the political and legal environment in a country but also the rights and responsibilities of nurses.
• Life of Individuals Dealing with Disabilities The child’s image hitting the t-ball also showcased a powerful issue, that disabled individuals should be treated similarly to other people and given equal opportunities to give them the chance to perform optimally.
• Partnership for People with Disabilities’ Mission The mission of this organization is to partner with stakeholders both in the intellectual and developmental disability community and other interested groups at Virginia Commonwealth University. The organization was founded in 1985 to better people’s […]
• The Experience of Parents of Children With Disabilities Enhancing support for the mental well-being of parents of children with a disability: developing a resource based on the perspectives of parents and professionals.
• Healthcare Disparities in People With Disabilities In addition to health care disparities, such as poor access to care, including preventive one, and dependency, people with disabilities also face higher morbidity and lack of insurance.
• Employment for People With Disabilities Accommodation is also considered to be a restructuring of work and the attraction of other personnel to help in adaptation – as it should have happened with Adele.
• Laws Protecting the Rights of People With Disabilities The aim of this essay is to research the law that protects the rights of people with disabilities in the context of sporting events.
• People With Disabilities in Society I think that these people are powerful and inspiring, as they prove to the world that it is possible to live life to the fullest with a disability.
• People With Disabilities and Social Work Moreover, there is a tendency towards the rise in the number of such people because of the deterioration of the situation and the growing number of environmental concerns.
• Alternate Assessments for Students With Learning Disabilities The problem is that many school districts experience difficulties with proposing adequate formative and summative assessments for those students who require special attention.
• People with Disabilities’ Problem of Employment Although truck driving can be a stressful job, it is not evident if it is true, and thus, it is important for John to experience the job-related himself and determine whether he can handle it. […]
• Living with Disabilities in the Nondisabled World A variety of laws, initiatives, and regulations are currently implemented to ensure simpler and less costly access to information resources and the functionality of a device.
• United Arab Emirates Schools: Students With Learning Disabilities The current UAE public school environment does not allow for the provision of the necessary skills due to the lack of a proper teaching strategy.
• Workplace and People With Disabilities The purpose of the research is to make coherent and accurate observations in regards to the usefulness of the given method in improving the overall attitudes of people and organizations toward people with disabilities.
• Career Counseling for People With Disabilities To sufficiently research, the issue of career counseling for individuals with disabilities in the academic press, a list of journals that offer such information was developed.
• Genetic Modification and Implicit Bias Against People With Disabilities There is also a factor of disabilities that are life-threatening to a child, or illnesses that may be able to be fatal within the first few years of life.
• Impact of Social Darwinism on the Perception of Human Disabilities In addition, connecting behavior such as the likeliness of criminality to genetics is incorrect and damaging not only to the individual but to a community and society as a whole.
• Music Therapy for Children With Learning Disabilities This review includes the evidence supporting music therapy as an effective strategy for promoting auditory, communication, and socio-emotional progression in children with ASD.
• Healthcare Professionals: Individuals With Developmental Disabilities The presentation provide an overview of relevant health related issues in individuals with developmental disabilities and how it relates to the group of professionals assigned.
• Protection for Persons With Disabilities and Their Service Animals Additionally, it must be trained to give assistance to a person with disability. Service animals that can be selected to assist persons with disability must be either a dog or a miniature horse.
• Death Penalty: Juveniles and Mental Disabilities Consequently, the Eight Amendment should dismiss the death penalty for this category and state laws must implement recommendations of the National Alliance on Mental Illness, the American Psychological Association, and the American Bar Association that […]
• The Prevalence, Effects and Challenges of Developmental Disabilities While the increase in the number of people with developmental disabilities is attributed to the rising numbers of the aging population, disabilities may arise in childhood and affect the entire lives of people.
• Community Disability Awareness Program: Elderly Women With Disabilities A measurable outcome in the program’s success will be a decline in the rate of crime related to elderly women with disabilities.
• The Understanding of Needs of People With Learning Disabilities Despite several problems in the overall design of the strategy that can be used to improve the nursing services for PLD, Drozd and Clinch make a very valid point by stressing the significance of a […]
• Addressing the Needs of People With Learning Disabilities As a student aiming at becoming a Nurse Practitioner, I am currently focusing on the exploration of the options for managing the work of the nursing staff, as well as seeking the opportunities for improving […]
• Discrimination Against Customers With Disabilities The role of the law is to regulate such cases and to provide necessary tools for both sides to prove their point of view.
• Elderly Women with Disabilities: Problems and Needs Despite the economic crisis, the cost of medical care has also increased due to the rise in the number of lawsuits filed against the physicians of the state.
• Relationship Satisfaction and Psychological Well-Being Among Greek People With Physical Disabilities In the light of this lack of knowledge, the present study attempts to explore the degree of relationship satisfaction in connection with the way handicapped people deal with the challenges of romantic involvement, as well […]
• Communication and People With Disabilities The bathrooms were close to the food court; moreover, there were special handle bars which helped to transfer to the commode and, at this, the height of the commode was almost the same as the […]
• Music Therapy as a Related Service for Students With Disabilities From a neuroscientific perspective, how would music intervention improve classroom behaviors and academic outcomes of students with ADHD as a way to inform policy-makers of the importance of music therapy as a related service?
• Problem Behaviors in Intellectual Disabilities Community The proposed quality designed study will evaluate the behavior of people with intellectual disabilities over a certain period of time and consequently conclude the primary triggers that influence ID people to demonstrate behavioral issues, including […]
• Law for People With Disabilities in California The family, the immediate environment of a person with disabilities, is the main link in the system of his or her care, socialization, the satisfaction of needs, support, and career guidance.
• The Resilience Experiences of People With Disabilities The focus of the study was on the participants’ lived experiences, as well as their attitudes towards certain aspects, so the use of interviews as a data collection method is justified.
• Literature Circles for Students With Learning Disabilities On the other hand, the affected individuals contend that the categorization should be removed to pave the way for the integration of assistances where all needs are attended without classification regardless of the student’s physical […]
• Students With Disabilities: Research Analysis In the process of undertaking this research and practical alignment, there is a misalignment in the inclusion of students with disabilities in the GE class.
• School Counselors for Students With Disabilities When the goals are set out, and the professional sphere is chosen, the counselor becomes responsible for the student’s preparation and reception of essential job skills as well as for the communication with the post-school […]
• The Specific Needs of Students With Physical Disabilities The research problem that will be the focus of the planned paper relates to the specific needs of students with physical disabilities or behavioral issues in general classrooms.
• Assistive Technology for Students with Disabilities The United Nations Convention on the Rights of people with disabilities proposes a raft of measures to be undertaken by states to promote the wellbeing of individuals with disabilities.
• Job for Individuals With Physical Disabilities For instance, when a new technology is about to be installed, it will be rational for a number of workers based on departments to be selected and taken through how to use the innovation, such […]
• Therapeutic Vests for Children With Disabilities The purpose of this review is to examine the available literature on the effectiveness of using therapeutic vests, weighted vests, and pressure vests on children with Autism spectrum disorders, Attention deficit disorder, Pervasive Development Disorder, […]
• An Audit of the Accessibility of the College of the North Atlantic-Qatar to Individuals With Physical Disabilities It should be noted that structural presentation of the paper is considered to be one of the most important elements of the paper because it allows following the logical thought of the research paper.
• Learning Disabilities and Communication Disorders The students are also being taken through research-based and special education programs and the determination of these disorders is done cooperatively between teachers and specialists like psychologists.
• Children With Disabilities: Supporting Student Behavior The comfortable atmosphere will help the children to attend the class and also provide a good way to mingle with the children with disabilities.
• Americans With Disabilities and Act Amendments Act to the ADA: The Main Issues and Comparison Moreover, the essence of the major amendments to the ADA is disclosed in the article using comparison and implications of those changes for the public use in the spheres of employment and human resources management […]
• Teaching Character Education to Students With Behavioral and Learning Disabilities The purpose of the study was to determine the effectiveness of character education programs implemented in schools on students with behavioral and learning disabilities.
• Plan of the Kickball Game That Involves the Students With the Disabilities While simulating the situation where one is in charge of the PE class, one needs to remember that disability is never inability, thus the students with the disabilities can participate in any games as well […]
• American With Disabilities Amendment Act The main intention of the Act is that civilians receiving benefits or services through the measures of local and state governments may not be differentiated on the fundamentals of the individual’s physical disabilities.
• Genetic Testing Under Americans With Disabilities Act There is nothing surprising in the fact that the genetically tested employees counted the testing as a violation of their human rights, and The Americans with Disabilities Act was adopted in 1990.
• Americans With Disabilities Act for Employers However, in practice, an employer could still legally discriminate against those with disabilities An employer is obligated to make reasonable accommodations for an employee or applicant if they are ‘otherwise qualified’ to perform the responsibilities […]
• Teaching Language to Students With Severe Disabilities The objective of this study is to find the different approaches that can be used in teaching phonics and the whole language to students with varied severe disabilities.
• Program Improvement: Developmental and Intellectual Disabilities The government has been keen to present specific resources and support systems that can support the educational and career goals of these individuals.
• Daily Living Skills Training for Individuals With Learning Disabilities Teaching individuals with physical and mental disabilities the life skills needed to compensate for their disadvantages are considered to be the key factor to ensuring a relatively safe, functional, and happy life for those individuals.
• Teaching Adaptive Behavior Skills to Children Suffering From Intellectual Disabilities in the Kingdom of Saudi Arabia This theoretical framework will contribute to the validation of the perspectives used by the teachers to construct their system of beliefs regarding the process of teaching ABS to students with ID.
• Life Stages of People with Learning Disabilities In order to proceed with the observation, it is necessary to identify the normal issues likely to be encountered by the representatives of both groups.
• Individuals With Intellectual Disabilities in the Workplace Intellectual disability puts a strain on an individual’s ability to have a social life and communicate with other human beings due to the fact that their capability of adapting is limited to a certain extent.
• Lifespan Development and Learning Disabilities in Childhood Parents in this situation would most likely select the authoritative parenting style to manage children because they are left to make their own choices under a guided framework.
• Natural Supports for Individuals With Disabilities Natural supports can be defined as personal connections and associations that improve the quality of a person’s life; these primarily include family relationships and friendships and constitute “the first line of supports, followed by informal […]
• Ican Bike for Individuals With Disabilities I think iCan Bike is a very good initiative that targets a vulnerable population with a plethora of special needs and relies on the community in order to deliver the results.
• Children With Disabilities and Parental Mistreatment The information in the article is helpful for parents of children with disabilities and other parents since it assists them in appreciating the significance of each parent’s education in lessening the incidence of child disability.
• School Counselor Job for People With Disabilities A school counselor that faces the risk of having a cardiovascular incident is challenged by the possible implications of the disease that could have an adverse impact on the overall practice and well being. Therefore, […]
• Americans With Disabilities in Criminal Justice Agencies Since the legislation is relatively new, the process of the change requires such guidelines given the lack of an appropriate number of the best practices for the time being.
• Rights of Parents of Students With Disabilities Trying to fix the problem, parents should understand that the only way they are to behave is the move in the direction of a correct education of their child.
• Strategies for Teaching Students With Mild Disabilities The good thing about having a child with a disability in the family is that it teaches everyone in the household to be patient. The greatest problem I have encountered in having a child with […]
• Learning Disabilities and Memory Disorders Large amounts of phenylalanine in the blood will result in complications of the neurons in the central nervous system referred to as myelinization of the cerebral hemispheres.
• Students With Mild and Moderate Disabilities Sometimes students with disabilities are not able to understand what they are to do if the instruction is not explicit and systematic. It is difficult for students with mild and moderate disabilities to generalize the […]
• Teaching Children With Multiple Disabilities The teacher should also assist such a child in maintaining a perceptual continuum than learners who are not handicapped. On the same note, the teacher should not give the amount of work similar to children […]
• Constructivism Theory for Adolescents with Disabilities The key component of the theory is people’s interaction with the environment. Therefore, Vygotsky’s theory is effective in developing the social and academic skills of an adolescent with learning and behavior disabilities.
• Veterans With Disabilities: Integration and Employment In this paper, the researcher looks at the main barriers to employment and integration back to the society that the veterans face, and the manner in which the existing policies can be amended to help […]
• Intellectual Disabilities and Higher Education The access to higher education for individuals with ID and the attitude of their parents towards their performance can be analyzed with the help of equity theory.
• Students With Intellectual Disabilities and Their Independence Some of these programs in the US include the Individuals with Disabilities Education Improvement Act, which provides grants for research, technology, and training for disabled individuals, as well as the Secondary Education Act of 2002, […]
• Independence of Students With Intellectual Disabilities In a humane and highly functional society, students with physical and intellectual disabilities should be allowed to function independently and enjoy their personal and academic life to the fullest.
• School Event Supporting Students With Disabilities Because of the vast opportunities for vulnerable groups to share their experiences and create a bond with the rest of the learners in a non-threatening environment, significant progress in encouraging disability awareness and the promotion […]
• Intellectual Disabilities and Limitations for Human Life The recognition of the lack of such skills can contribute to future opportunities for an independent life with effective interdependence and inclusion in the life of a society.
• Psychological Testing of Intellectual Disabilities Speaking of its psychometric properties, the PCL-5 is a valid and reliable self-report measure for the assessment and quantifying symptoms of PTSD.
• Young Adult Children With Intellectual Disabilities Like in the study, I would also use pilot testing of the questionnaire to ascertain its validity and reliability in measuring the intended variables. The descriptions of the concepts and terms in this study are […]
• Effective Teaching of Students with Disabilities To support the information that was posted in three blog entries, the author of this submission reviewed other literature on the subject to be able to support their point of view.
• Parenting Children With Learning Disabilities A number of parents also feel worthless since they get an impression that the respective learning disabilities portrayed in their children are due to their own genetic malformations.
• Caregivers’ Perceptions of People With Intellectual Disabilities The proposed study will present new approaches and practices that can be used to support the health needs of many patients with mental disabilities.
• People With Disabilities and Their Employment Issues The major similarity between the perceptions of older people and individuals with disabilities is based on the belief that they are slow and could slow down the other workers and the idea that the managers […]
• Students With Learning Disabilities and Assessment The education of students with learning disabilities poses great difficulty for the majority of parents and educators. It may not be self-evident that the learning problems of students are attributable to learning disabilities.
• Patients With Learning Disabilities: Quality Care Although the current study is not aimed at detecting the differences in the efficacy of the intervention based on the gender of the participants, the outcomes of the research may create prerequisites for a follow-up […]
• Talent-Oriented Therapy: Patients With Learning Disabilities Although the tool to be designed in the course of the research will have to experience a range of tests, it will serve as the impetus for the further development of the framework.
• Emotional and Behavioural Disabilities in Schools Furthermore, there is equal doubt about whether the professionals in the sphere of education give no significance to the term of emotional and behavioural disability itself.
• Employment Equity Act: Aboriginals and Disabilities Persons If the Employment Equity Act is applied appropriately, the Act will guarantee that people in the labour force are given the opportunity of the equivalent admission to job openings along with identical management in the […]
• People With Disabilities: Local and a Federal Law’ Regulation To be more exact, the current standards need to be shaped so that the policy in question should not affect the social perception of people with physical or mental disabilities.
• Students With Learning Disabilities: Needs and Problems According to Chloe, there are three aspects associated with this complex issue, and they are the problem of appropriate parents and professionals’ intervention, the problem of identifying resources, and the problem of government’s funding.
• Students With Disabilities: Characteristics and Strategies Disability Categories Example Strategy English Learner Students 1 Autism is the developmental disability which influences the aspects of social interaction and different types of communication. The child with this disability can demonstrate various restricted and stereotypic patterns of behavior. The student with autism cannot focus attention on the teacher’s words, demonstrates the unusual gestures and […]
• Instructional Plan in Writing for Learners With Disabilities The purpose of this essay is to provide an instructional plan for learners with disabilities in writing. Writing skills require learners to account for the task, the aim of writing and audience.
• People with Disabilities: The Systemic Ableism Whereas the absence of disability in the fashion world is based on the dominant view of what is considered beautiful, the absence of disabled in politics can be explained with the lack of access to […]
• Writing Disabilities Management in Children Learning disorder is among the defects, which interferes with the writing abilities of a person or a child. The first way to identify children with writing disabilities is through observation of their behaviour.
• Developmental Disabilities and Lifelong Learning Some of the common transitional programs for children with developmental disabilities would include things such as books, learning manuals, and software programs intended to assist the children in adjusting to the new programs or settings.
• Action Plan for Patrons With Disabilities For instance, the writer of the essay suggests that in terms of facility planning, it is vital for the library to invest in wiring its facilities with audio induction loop.
• Remediation in Students with Disabilities Since this strategy is essentially crucial to the curriculum, this proposal will portray the importance of conducting a profound research that seeks to determine the effectiveness of remediation in reading.
• Improving Reading Performance of Students With Learning Disabilities The purpose of the present research is to assess the efficiency of utilizing Reading Racetracks to improve the reading of words found on the K-2 list key phrases adopted in the school district.
• Americans With Disabilities Act With all due respect to the efforts of the U.S.government to come up with a framework, which would allow for a faster and a more efficient integration of the disabled into the society, the fact […]
• GM’s Committal to People With Disabilities The company aims to create awareness about PWDs by providing support and information to employees with disabilities and other PWDs outside the GM community.
• Supporting Students with Speech Impairment This assistive technology uses appropriate symbols and techniques to support the needs of different learners. These technologies will support the needs of many learners.
• Physical Disabilities and Assistive Technology For example, learners with visual impairments can use text-to-speech programs. Learners with physical disabilities can be gathered for with the help of assistive technology devices such as adaptive keyboard and screen reading software for learners […]
• Sensory Disabilities and Age of Onset This can happen, for instance, when learning the subject that call for lots of diagrams, figures and illustrations to be applied, which may also give a challenge to the visually impaired students.
• High Incidence Disabilities and Pedagogical Strategies for Learning Disabilities In the context of disability, it is important to mention that this model is beneficial to students with learning disabilities as it involves teaching them how to approach tasks and use knowledge to complete learning […]
• Families With Members Who Experience Disabilities Early childhood services which offer professionalized care services to parents help them meet the needs of the special children so that parents are able to balance their strengths, resources and challenges in the family.
• Recreational Activities for People with Disabilities Even the number of customized recreational equipments should be increased so as to enable the people with disabilities to choose from.
• Support Inclusion and Effective Practices for Students With Disabilities The purpose of this article is positioning that the ambition towards support inclusion and effective practices for students with disabilities have to be the groundwork for inclusive postsecondary education.
• Peer Buddy Program: Students with Disabilities in High School This research paper seeks to establish the purpose, importance, and rationale of the study of peer buddy program on students with disabilities in high school, in both social and academic grounds.
• An Action Plan for Serving Individuals With Disabilities – Library and Information Science First is the total cost of the whole project, the architectural design of the library building and whether it can accommodate the new developments and the current issues affecting accessibility with regards to the disabled.
• Internal Campaign Planning for Inclusion of Persons With Disabilities The key mandate of the act was to protect the employment rights of persons with disabilities. Secondly, newsletters can be developed so as to raise awareness on the importance of diversity and inclusion.
• Human Rights of People With Intellectual Disabilities Since disability is not inability, human rights’ advocates argue that perception of people with disabilities as disabled is discriminative and therefore call for their recognition as a minority people with unique abilities that do not […]
• Adolescents with Learning and Behaviour Disabilities: Graduation and Employment Difficulties One of the causes of high school dropout of this group of students is the feeling of being out of place.
• The Problem of Reading of Children With Learning Disabilities The difference in phonological awareness and reading between groups of children with SSDs and a language matched comparison group Reading fluency is a key tool of assessment the reading disability among children.
• People With Disabilities The code consists of sixteen articles that define the terms associated with disability in Saudi Arabia, the role of the government in the welfare of disabled children, administration of the bodies concerned with disabled person, […]
• Classroom Design for Children With Disabilities Furthermore, children with disabilities require individual attention from the teacher just like the other children, and if the classroom is congested it would be difficult for the teacher to reach such learners.
• Culturally Responsive Teaching of Students With Disabilities Cultural Responsive teaching is a teaching technique used to identify and address cognitive, social, emotional, and cultural and language needs of students with developmental needs as a way of providing them with assistance in all […]
• People With Disabilities and Abuse of People With Disabilities and Criminal Justice In addition, there is need to train police, lawyers and other persons in the criminal justice system on how to interact with persons with disabilities.
• Americans With Disabilities Act (ADA) There is a commission in the US that fights for the rights of people with disabilities when it comes to employment.
• Terminology and Etiquette Discussion Regarding Persons With Disabilities The media refer to people with disability as to persons with special needs, which reveals the inappropriate use of terminologies to refer to them.
• People With Disabilities and the Hotel Industry According to this act, the needs of people with disabilities should be satisfied in relation to the fixed rules in order to provide the necessary conditions for these persons and follow the principle of the […]
• Post Education for Adults With Disabilities Recommendations for further research and practice that refer to the disability problems are presented at the end of the paper with the purpose of enabling the interaction of services.
• The Right Attitude Towards Disabled People First, it can be questioned whether any form of physical or mental disability can be referred to as something that deserves to be ‘celebrated’, as the promoters of political correctness want us to believe.
• Assistive Technology for Kids with Learning Disabilities An increasing number of educators are incorporating frame routines to the web platform, in which a constant touch with both students and parents is maintained.
• Inclusion for Students With Severe Disabilities Modification and accommodation are the methods used to manipulate education system to make it favourable for these students. Modification and Accommodation are the methods used to manipulate the system to make it favourable for students […]
• The Impact of a Fitness Intervention on People with Developmental and Intellectual Disabilities This is one of the issues that should be singled out. This is one of the issues that should be considered.
• Current Trends and Issues in Educating Students With Disabilities Following the existence of cases of racial and ethnic bias across the United States educational system, the government has seen the importance to intervene in improving education in the U.S.
• General Curriculum for Intellectual and Developmental Disabilities Learners The purpose of the study was to examine the extent to which learners with intellectual and developmental disabilities have access to the general education curriculum and the extent to which such access is related to […]
• US Should Ratify the UN Convention on the Rights of People with Disabilities The UN has recognized the importance of the disabled person’s rights and freedoms and has come up with the UN convention on the Rights of People with disabilities, CRPD and has urged member states to […]
• The Individuals With Disabilities Education Improvement Act However, the gradual increase in the number of individuals with learning disabilities led to the disapproval of this method. As a result of this separation and early identification school performances tend to improve and the […]
• Defining Disabilities in Modern World Defining disability has not been easy due to the various opinions related to the understanding of the concept. Disability has significant impact on the society due to the relationships that exists between the individual and […]
• Peer Buddy Programs for Students With Disabilities In the essay, the author will provide recommendations with regard to how the peer buddy program can be successfully implemented in schools in the future. The aim is to enhance the success of the peer […]
• Preschool Teachers’ Actions for Integrating Children With Disabilities Of special interest was whether the gravity of a child’s educational requirements and the teacher’s knowledge about the disability condition were linked to teacher’s responses towards incorporating such children in their classrooms.
• Chicago (A-D)
• Chicago (N-B)

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Community-based participatory-research through co-design: supporting collaboration from all sides of disability

• Cloe Benz   ORCID: orcid.org/0000-0001-6950-8855 1 ,
• Will Scott-Jeffs 2 ,
• K. A. McKercher   ORCID: orcid.org/0000-0003-4417-585X 3 ,
• Mai Welsh   ORCID: orcid.org/0000-0002-7818-0115 2 , 4 ,
• Richard Norman   ORCID: orcid.org/0000-0002-3112-3893 1 ,
• Delia Hendrie   ORCID: orcid.org/0000-0001-5022-5281 1 ,
• Matthew Locantro 2 &
• Suzanne Robinson   ORCID: orcid.org/0000-0001-5703-6475 1 , 5  

Research Involvement and Engagement volume  10 , Article number:  47 ( 2024 ) Cite this article

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Metrics details

As co-design and community-based participatory research gain traction in health and disability, the challenges and benefits of collaboratively conducting research need to be considered. Current literature supports using co-design to improve service quality and create more satisfactory services. However, while the ‘why’ of using co-design is well understood, there is limited literature on ‘ how ’ to co-design. We aimed to describe the application of co-design from start to finish within a specific case study and to reflect on the challenges and benefits created by specific process design choices.

A telepractice re-design project has been a case study example of co-design. The co-design was co-facilitated by an embedded researcher and a peer researcher with lived experience of disability. Embedded in a Western Australian disability organisation, the co-design process included five workshops and a reflection session with a team of 10 lived experience and staff participants (referred to as co-designers) to produce a prototype telepractice model for testing.

The findings are divided into two components. The first describes the process design choices made throughout the co-design implementation case study. This is followed by a reflection on the benefits and challenges resulting from specific process design choices. The reflective process describes the co-designers’ perspective and the researcher’s and organisational experiences. Reflections of the co-designers include balancing idealism and realism, the value of small groups, ensuring accessibility and choice, and learning new skills and gaining new insights. The organisational and research-focused reflections included challenges between time for building relationships and the schedules of academic and organisational decision-making, the messiness of co-design juxtaposed with the processes of ethics applications, and the need for inclusive dissemination of findings.

Conclusions

The authors advocate that co-design is a useful and outcome-generating methodology that proactively enables the inclusion of people with disability and service providers through community-based participatory research and action. Through our experiences, we recommend community-based participatory research, specifically co-design, to generate creative thinking and service design.

Plain language summary

Making better services with communities (called co-design) and doing research with communities (e.g. community-based participatory research) are ways to include people with lived experience in developing and improving the services they use. Academic evidence shows why co-design is valuable, and co-design is increasing in popularity. However, there needs to be more information on how to do co-design. This article describes the process of doing co-design to make telepractice better with a group of lived experience experts and staff at a disability organisation. The co-design process was co-facilitated by two researchers – one with a health background and one with lived experience of disability. Telepractice provides clinical services (such as physiotherapy or nursing) using video calls and other digital technology. The co-design team did five workshops and then reflected on the success of those workshops. Based on the groups’ feedback, the article describes what worked and what was hard according to the co-designers and from the perspective of the researchers and the disability organisation. Topics discussed include the challenge of balancing ideas with realistic expectations, the value of small groups, accessibility and choice opportunities and learning new skills and insights. The research and organisational topics include the need to take time and how that doesn’t fit neatly with academic and business schedules, how the messiness of co-design can clash with approval processes, and different ways of telling people about the project that are more inclusive than traditional research. The authors conclude that co-design and community-based participatory research go well together in including people with lived experience in re-designing services they use.

Peer Review reports

Introduction

Co-design has the potential to positively impact co-designers and their community, researchers, and organisations. Co-design is defined as designing with, not for, people [ 1 ] and can reinvigorate business-as-usual processes, leading to new ideas in industry, community and academia. As co-design and community-based participatory research gain traction, the challenges and benefits of collaborative research between people with lived experience and organisations must be considered [ 2 ].

Disability and healthcare providers previously made decisions for individuals as passive targets of an intervention [ 3 ]. By contrast, the involvement of consumers in their care [ 4 ] has been included as part of accreditation processes [ 4 ] and shown to improve outcomes and satisfaction. For research to sufficiently translate into practice, consumers and providers should be involved actively, not passively [ 4 , 5 ].

Approaches such as community-based participatory research promote “a collaborative approach that equitably involves community members, organisational representatives and researchers in all aspects of the research process” [ 6 ] (page 1). This approach originated in public health research and claims to empower all participants to have a stake in project success, facilitating a more active integration of research into practice and decreasing the knowledge to practice gap 6 . Patient and public involvement (PPI) increases the probability that research focus, community priorities and clinical problems align, which is increasingly demanded by research funders and health systems [ 7 ].

As community-based participatory research is an overarching approach to conducting research, it requires a complementary method, such as co-production, to achieve its aims. Co-production has been attributed to the work of Ostrom et al. [ 8 ], with the term co-design falling under the co-production umbrella. However, co-design can be traced back to the participatory design movement [ 9 ]. The term co-production in the context of this article includes co-planning, co-discovery, co-design, co-delivery, and co-evaluation [ 10 ]. Within this framework, the concept of co-design delineates the collaborative process of discovery, creating, ideating and prototyping to design or redesign an output [ 11 ]. The four principles of co-design, as per McKercher [ 1 ], are sharing power, prioritising relationships, using participatory means and building capacity [ 1 ]. This specific method of co-design [ 1 ] has been used across multiple social and healthcare publications [ 10 , 12 , 13 , 14 ].

A systematic review by Ramos et al. [ 15 ] describes the benefits of co-design in a community-based participatory-research approach, including improved quality and more satisfactory services. However, as identified by Rahman et al. [ 16 ], the ‘ why ’ is well known, but there is limited knowledge of ‘ how ’ to co-design. Multiple articles provide high-level descriptions of workshops or briefly mention the co-design process [ 13 , 17 , 18 , 19 ]. Pearce et al. [ 5 ] include an in-depth table of activities across an entire co-creation process, however within each part i.e., co-design, limited descriptions were included. A recent publication by Marwaa et al. [ 20 ] provides an in-depth description of two workshops focused on product development, and Tariq et al. [ 21 ] provides details of the process of co-designing a research agenda. Davis et al. [ 11 ] discuss co-design workshop delivery strategies summarised across multiple studies without articulating the process from start to finish. Finally, Abimbola et al. [ 22 ] provided the most comprehensive description of a co-design process, including a timeline of events and activities; however, this project only involved clinical staff and did not include community-based participation.

As “We know the why, but we need to know the how-to” [ 16 ] (page 2), of co-design, our primary aim was to describe the application of co-design from start to finish within a specific case study. Our secondary aim was to reflect on the challenges and benefits created by specific process design choices and to provide recommendations for future applications of co-design.

Overview of telepractice project

The case study, a telepractice redesign project, was based at Rocky Bay, a disability support service provider in Perth, Australia [ 23 ]. The project aimed to understand the strengths and pain points of telepractice within Rocky Bay. We expanded this to include telepractice in the wider Australian disability sector. The project also aimed to establish potential improvements to increase the uptake and sustainability of Rocky Bay’s telepractice service into the future. Rocky Bay predominantly serves people under the Australian National Disability Insurance Scheme (NDIS) [ 24 ] by providing a variety of services, including allied health (e.g. physiotherapy, dietetics, speech pathology, etc.), nursing care (including continence and wound care), behaviour support and support coordination [ 23 ]—Rocky Bay services metropolitan Perth and regional Western Australia [ 23 ].

The first author, CB, predominantly conducted this research through an embedded researcher model [ 25 ] between Curtin University and Rocky Bay. An embedded researcher has been defined as “those who work inside host organisations as members of staff while also maintaining an affiliation with an academic institution” [ 25 ] (page 1). They had some prior contextual understanding which stemmed from being a physiotherapist who had previously delivered telehealth in an acute health setting. A peer researcher, WSJ, with lived experience of disability, worked alongside CB. They had no previous experience in research or co-design, this was their first paid employment and they had an interest in digital technology. Peer Researcher is a broad term describing the inclusion of a priority group or social network member as part of the research team to enhance the depth of understanding of the communities to which they belong [ 26 ]. Including a peer researcher in the team promoted equity, collective ownership, and better framing of the research findings to assist with connecting with people with lived experience. These outcomes align with key components of community-based participatory research and co-design [ 27 , 28 , 29 , 30 ].

Person-first language was used as the preference of experts with lived experience who contributed to this research to respect and affirm their identity. However, we respect the right to choose and the potential for others to prefer identity-first language [ 31 ].

A summary of the structure of the phases completed before co-design workshops are represented in Fig.  1 below. Ethical approval for the project was received iteratively before each phase on the timeline (Fig.  1 ) from the Curtin Human Research Ethics Committee (HRE2021-0731). The reporting of this article has been completed in line with the Guidance for Reporting Involvement of Patients and the Public (GRIPP2) checklist [ 7 ].

Summary of telepractice co-design project structure [ 1 ]

Here, we present an outline of the chosen research methods with descriptions of each process design choice and supporting reasons and examples specific to the study. The format is in chronological order, with further details of each step provided in Appendix 1 (Supplementary Material 1).

Methods and results

Process of co-production and preparation for co-design.

Co-production was chosen as the planning method for the study, as the inclusion of community members (Rocky Bay Lived experience experts and Staff) in each step of the research process would increase buy-in and make the research more likely to meet their needs [ 5 ]. An example of co-planning (part of co-production) includes the study steering committee, with a lived experience expert, clinician and project sponsor representatives collaborating on the selection of study aim, methods and recruitment processes. Another example of co-planning, co-design, and co-delivery was recruiting a peer researcher with disability, who worked with the embedded researcher throughout the study design and delivery.

The second process design choice was to attempt to build safe enough conditions for community participation, as people who feel unsafe or unwelcome are less likely to be able to participate fully in the research [ 1 ]. Building conditions for safety was applied by repeatedly acknowledging power imbalances, holding space for community input, and anticipating and offering accessibility adjustments without judgment.

Getting started

Understanding and synthesising what is already known about telepractice experiences and learning from lived experience was prioritised as the first step in the process. We paired a scoping review of the literature with scoping the lived experiences of the community [ 32 ]. Our reasoning was to understand whether the findings aligned and, secondly, to learn what had already been done and to ask what was next, rather than starting from the beginning [ 1 ]. Examples of strategies used in this step included interviewing clinicians and service provider Managers across Australia to establish how they implemented telepractice during the pandemic and understand their views of what worked and what did not. The second learning process occurred onsite at Rocky Bay, with people with lived experience, clinicians and other support staff, whom the embedded researcher and peer researcher interviewed to understand experiences of telepractice at Rocky Bay.

The authors presented the interview findings during focus groups with Rocky Bay participants to share the learnings and confirm we had understood them correctly. The groups were divided into staff and lived experience cohorts, allowing for peer discussions and sharing of common experiences. This helped build relationships and a sense of familiarity moving into the workshop series.

Co-design workshops

This section outlines specific components of the co-design workshop preparation before describing each of the five workshops and the final reflection session.

Staff and community co-designers

Two process design choices were implemented to form the co-design group. The first was to prioritise lived experience input as there are generally fewer opportunities for lived experience leadership in service design [ 16 ], and because the disability community have demanded they be included where the focus impacts them [ 33 ]. To acknowledge the asymmetry of power between community members, people with lived experience of disability and professionals, we ensured the co-design group had at least the same number of lived experience experts as staff.

The second priority for the co-design group was to include people for whom involvement can be difficult to access (e.g. people who are isolated for health reasons and cannot attend in-person sessions, people who live in supported accommodation, part-time staff, and people navigating the dual-role of staff member while disclosing lived experience). It was important to learn from perspectives not commonly heard from and support equity of access for participants [ 4 ].

Workshop series structure

When structuring the workshop series, lived experience co-designers nominated meeting times outside standard work hours to reduce the impact of co-design on work commitments and loss of income while participating. The workshops were designed to be delivered as a hybrid of in-person and online to give co-designers a choice on how they wanted to interact. The workshops were designed as a series of five sequential 90-minute workshops, where co-designers voted for the first workshop to be predominantly in-person and the remainder of the workshops online. Some co-designers chose to attend the initial session in person to build rapport. However, the virtual option remained available. The subsequent online sessions reduced the travel burden on co-designers, which the co-designers prioritised over further face-to-face meetings.

Workshop facilitators

To maintain familiarity and ensure predictability for co-designers, the workshops were co-facilitated by the embedded researcher and peer researcher. The co-facilitators built on relationships formed through previous interactions (interviews and focus groups), and each facilitator represented part of the co-designer group as a clinician or a person with disability. An extra support person was tasked with supporting the co-designers with disability to break down tasks and increase the accessibility of activities. The reason for selecting the support person was that they could contribute their skills as a school teacher to support the communication and completion of activities, and they had no previous experience with disability services to influence the co-designers opinions. This role was adapted from the provocateur role described by McKercher [ 1 ].

Pre-workshop preparations

To prepare for the workshops, each co-designer was asked to complete a brief survey to ensure the co-facilitators understood co-designers collect preferences and needs ahead of the session to enable preparation and make accommodations. The survey included pronouns, accessibility needs and refreshment preferences. Following the survey, the co-facilitators distributed a welcome video; the peer researcher, a familiar person, was videoed explaining what to expect, what not to expect and expected behaviours for the group to support a safe environment [ 1 ]. This process design choice was made to allow co-designers to alleviate any potential anxieties due to not having enough information and to increase predictability.

Workshop resources and supports

As the first workshop was in-person, specific process choices were made to ensure co-designers felt welcome and to uphold the dignity of co-designers with lived experience [ 34 ]. Examples of process design choices include facilitating transport and parking requests, providing easy access to the building and room, making a sensory breakout room available and having the peer researcher waiting at the entrance to welcome and guide people to the workshop room.

After reaching the workshop room, all co-designers received an individualised resource pack to equalise access to workshop materials, aiming again to balance power in a non-discriminatory way [ 11 ]. The resource pack included name tags with pronouns, individualised refreshments, a fidget toy [ 35 ] whiteboard markers and a human bingo activity described in a later section. An easy-to-apply name tag design was selected after consulting a co-designer with an upper limb difference. Further details on the resource packs are included in Appendix 1 (Supplementary Material 1).

Enabling different kinds of participation

We provided non-verbal response cards to each co-designer as communication preferences vary significantly within the disability community. The cards were intended to benefit any co-designer who struggled to use the response buttons on MS teams. The co-facilitators co-created the Yes, No, and In-the-middle response cards (Fig.  2 ) and were guided by recommendations by Schwartz and Kramer [ 29 ]. They found that people with intellectual disability were more likely to respond “yes” if the negative option included a frowning face or red-coloured images, as choosing these types of alternatives was perceived as being negative or would cause offence [ 29 ].

Non-verbal response cards

A summary of the structure and purpose of each of the five workshops is shown in Fig.  3 , followed by a more in-depth discussion of the strategies employed in each workshop.

Outline of workshop and group structures

Workshop 1: the beginning

Human Bingo was the first workshop activity, as it aimed to support relationship building in an inclusive way for both in-person and online attendees. The activity asked each co-designer to place a name in each worksheet box of someone who fit the described characteristic of that square(for example, someone who likes cooking). To include the two online attendees, laptops were set up with individual videocall streams and noise cancelling headphones enabling the online co-designers to interact one-on-one with others during the activities.

The second activity used The Real Deal cards by Peak Learning [ 36 ] to ask the co-designers to sort cards to prioritise the top five experiences and feelings they would want in a future version of telepractice. This activity aimed to set initial priorities for the redesign of telepractice [ 1 ]. Small groups with a mix of lived experience experts and staff were tasked with negotiating and collaborating to produce their top five desired experiences and feelings for future service success.

A follow-up email was sent after the session to thank co-designers, provide closure, invite feedback and let co-designers know what to expect from the next session.

Workshop 2: mapping the journey

In the second workshop, held online, the co-facilitators explained the journey mapping process and showed a draft of how the visual representation would likely look (Fig.  4 ). As the first step, co-designers were tasked with completing a series of activities to analyse lived experience interview data on the current experience of telepractice for lived experience experts. Small mixed groups were created, prioritising the needs of the lived experience experts to have staff who would be the best fit in supporting them to work through the task [ 1 ]. The small groups were allocated interview quotes corresponding to the steps of a customer journey through telepractice and asked to identify strengths, challenges and emotions associated with the current Telepractice service journey at Rocky Bay [ 1 ]. Further details on the journey map analysis are described in Appendix 1 (Supplementary Material 1) and in a published article co-authored by the co-designers (Benz et al. [ 37 ]).

Draft journey map visualisation

After workshop two, the embedded researcher drafted a journey map by compiling the co-designer group responses to the analysis activity, which was then circulated for feedback and confirmation. The completed journey map is published with further details on the process in an article co-authored with the co-designers, Benz et al. [ 37 ].

Workshop 3: ideas for addressing pain points

For the third workshop, the co-facilitators selected activities to be completed separately by lived experience and staff co-designers. The lived experience expert activity involved exploring preferences for improving pain points identified through the journey map. The lived experience expert activity was facilitated by the peer researcher and support person and included questions such as, how would it be best to learn how to use telepractice? Visual prompt cards were shared to support idea creation, where lived experience expert co-designers could choose any option or suggest an alternative (Fig.  5 ).

Option cards for Lived experience expert co-designer workshop activity

Simultaneously, the staff co-designers completed a parallel activity to address pain points from a service delivery point of view. These pain points were identified in the clinical and non-clinical staff interviews and from the journey map summary of lived experience expert interviews (analysed in Workshop 2). Staff co-designers completed a mind map based on service blueprinting guidelines by Flowers and Miller [ 38 ]. The activity used service blueprinting to identify a list of opportunities for improvement, with four prompts for co-designers to commence planning the actions required to implement these improvements. The foci of the four prompts were roles, policies, technology and value proposition [ 38 ] (described further in Appendix 1 (Supplementary Material 1)). Each of the four prompts were completed for the ten proposed opportunities for improvement to draft plans for future telepractice service delivery.

Workshop 4: story telling and generation of future state solutions

In the fourth workshop, we introduced the concept of prototyping [ 39 ] as a designerly way to test co-designers’ ideas for improving telepractice according to desirability, feasibility and viability with a wider audience of lived experience experts and staff. The co-designers helped to plan the prototyping, and accessibility was a key consideration in selecting a prototype, as the group were conscious of the target audience.

Creating the prototype was collaborative, allowing co-designers to produce an output representing their ideas. They selected a video storyboard prototype with a staff and customer version formatted similarly to a children’s book. It included cartoon animations completed on PowerPoint, voiceover narration, closed captioning and an introductory explanation from two co-designers.

After workshop four, the co-designers collaborated on the customer and staff prototypes during the two weeks between workshops four and five, with support and input from the facilitators. The prototype files were co-produced, with different co-designers working on the visual aspects, the script for the main audio narration and the introductory explanation.

Workshop 5: finishing the story

The co-design group reviewed the draft prototypes in the final workshop, with specific attention paid to the story’s cohesiveness.

The feedback questionnaire was then created to be completed by viewers outside of the co-design group after engaging with either the staff or the customer prototype. The survey allowed Rocky Bay customers and staff to contribute ideas. Following thoughtful discussions, consensus was reached by all co-designers on the final survey questions (Appendix 2 (Supplementary Material 1)).

A reflection activity concluded the final workshop, allowing co-designers to provide feedback on the co-design process, elements for improvement and aspects they valued in participating in the project. Their reflections on the benefits and challenges of co-design in this study are included in the section Co-designer’s perspectives of the workshop series , with the reflection questions included in Appendix 3 (Supplementary Material 1).

Post prototype reflection session

The prototype feedback responses were reviewed with co-designers in a final reflection session. The group then discussed adaptations to the implementation plan for proposal to Rocky Bay. Following the survey discussion, co-designers reviewed proposed service principles for the new telepractice implementation recommendations. These principles aim to align any future decisions in the implementation and service provision stages of the telepractice project with the intentions of the co-designers. An additional reflection activity was completed, specific to the telepractice proposal they had produced and the prototyping process. Feedback relevant to subsequent discussions of the challenges and benefits of co-design is included in the following section: Co-designer’s perspectives of the workshop series , with the reflection prompts in Appendix 3 (Supplementary Material 1).

Benefits and challenges

Learnings derived from completing a study of this kind are complex. However, it is necessary to reflect on which strategies used in the project were beneficial and which strategies created challenges - anticipated and unexpected. These reflections are discussed in two sections, the first being the challenges and benefits reflected upon by co-designers. The second set of reflections relates to organisational and research project-level benefits and challenges from the perspective of clinical department managers and researchers involved in the project.

Co-designer’s perspectives of the workshop series

Co-designers were positive overall about the workshop series. Responses to a prompt for one-word descriptors of their experience included “captivating, innovative, fulfilling, exciting, insightful, helpful, eye-opening and informative ” .

Co-designing as a team

A foundational strategy implemented in this project was the intentional collaboration of lived experience experts with staff; this linked to the co-design principle of prioritising relationships and sharing power. Multiple reflections commented on feeling like a team and that having diverse perspectives across the group was beneficial.

It was especially interesting to hear the perspective of clinicians (for us, the other side of Telepractice). [Lived experience expert Co-designer]

Additionally, the combination of facilitators, including an embedded researcher with an allied health clinical background, a peer researcher with lived experience and a support person with strengths in breaking down tasks, provided different facets of support and task modelling to the co-designers throughout the process.

Balancing idealism and realism

There is an inherent challenge in collaboration between lived experience experts and service providers, whereby co-designers formulate ideas for service improvement and then, in good faith, propose required changes to be implemented. Strategies to support imagination and idealism while being honest about the constraints of what can be delivered were implemented in the context of this project. This was essential to reinforce to co-designers that their contributions and ideas are valid while tempering their hopes with the truth that organisational change is challenging and funding for change is limited. Co-designers were encouraged to be cognisant of ideas that would require high investment (cost and time) and which ideas faced fewer barriers to implementation. This strategy did not prevent the ideation of changes and prioritising what mattered most to them, and co-designers felt it was beneficial in adding a level of consideration regarding what investments they deemed necessary versus those that would be nice to have. For example, having a person to call for help was viewed as necessary, while a nice to have was more advanced technological features.

I feel that the prototype is useful; however, I worry that nothing will be carried over to the Rocky Bay Service. I feel like more customers will want to access telepractice, and Rocky Bay now needs to start the implementation process to ensure that telepractice is utilised, including processes, education and training. [Clinician Co-designer]

The value of small groups

Working in small groups was another beneficial strategy, aiming to create a more hospitable environment for co-designers to voice their thoughts. The small groups varied across activities and workshops, with facilitators intentionally pairing groups that would best support the lived experience of expert co-designers completing activities. As described in the workshop sections, some activities suited mixed groups, whereas others suited lived experience expert and staff-specific groups. Two reflective comments demonstrated the benefit of the small groups, one from a clinician who reflected on supporting a fellow co-designer:

I found that in our group, all of us had a say; however, [Lived Experience Co-designer name] was a bit overwhelmed at times, so I tried to support her with that. [Clinician Co-designer]

And a lived experience expert co-designer additionally reflected:

The breakout rooms were a very good idea. It can be quite intimidating speaking in front of the main group. I found it much easier to participate in the smaller groups . [Lived experience expert Co-designer]

The second session included an unplanned whole group activity, which challenged co-designers. Co-designers reflections of this experience demonstrate the benefits of smaller groups:

I did feel that at the end when the whole group did the task, there wasn’t as much collaboration as there were quite a few more assertive participants, so the quieter ones just sat back. [Clinician Co-designer]

Accessibility and choice

A challenge navigated throughout the workshop series with a diverse group of co-designers was meeting their varying individual health and other needs. This required responding in sensitive, non-judgemental, and supportive ways to encourage co-designers to engage fully. Examples of support include the presence of a support person and adaption of resource packs for co-designers who have difficulty swallowing (re: refreshments), as well as the previously mentioned non-verbal response cards and accessible name tags.

Accessibility supports were also provided for the peer researcher during facilitation activities, including pre-written scripts to provide clarity when explaining tasks to the co-design group, written reminders and regular check-ins. A lived experience expert co-designer reflected that it was beneficial that they could tell the peer researcher was nervous but appreciated that he was brave and made them feel like they did not need to be perfect if the peer researcher was willing to give it a go.

When facilitating the sessions, the embedded researcher and peer researcher identified that the workshops were long and, at times, mentally strenuous. One co-designer requested “more breaks during each session” . Breaks were offered frequently; however, upon reflection, we would schedule regular breaks to remove the need for co-designers to accept the need for a break in front of the group. The instructions for each activity were visual, verbal and written and given at the start of a task. However, once the co-designers were allocated to breakout rooms, they could no longer review the instructions. Many co-designers suggested that having the instructions in each breakout room’s chat window would have been a valuable visual reminder.

One thing I think might of helped a little is having the instructions in the chat as I know I that I listened but couldn’t recall some of the instructions for the group task. [Lived experience expert Co-designer]

Learning new skills and gaining new insight

The co-designers considered that the benefits of working together included learning new skills and widening their understanding of research, the services they provide or use, and the differences between the priorities of lived experience experts and staff. Two lived experience experts commented that the opportunity to learn collaboration skills and create cartoons using PowerPoint were valuable skills for them to utilise in the future. One clinician reflected that the process of co-design had improved their clinical practice and increased their use of telepractice:

My practice is 100% better. I am more confident in using telepractice and more confident that, as a process, it doesn’t reduce the impact of the service- in some ways, it has enhanced it when customers are more relaxed in their own environments. I have not seen my stats, but my use of telepractice has increased significantly, too. [Clinician Co-designer]

The management co-designer acknowledged that although ideas across the group may be similar, prioritisation of their importance can vary dramatically:

Whilst all the feedback and potential improvements were very similar, some things that I viewed as not an issue, was very different to a customer’s perspective. [Management Co-designer]

Overall, the workshop series challenged co-designers. However, the provision of a supportive and accessible environment resulted in mutual benefits for the research, organisation, and co-designers themselves. The strategy for facilitating the workshops was to pose challenges, support the co-designers in rising to meet them, and take into account their capabilities if provided with the right opportunity. A lived experience expert co-designer summarised the effectiveness of this strategy:

I found the activities to be challenging without being too difficult. Each activity provided enough guidance and structure to encourage interesting group discussions and make collaboration easy. [Lived experience expert Co-designer]

Research and organisational reflections of benefits and challenges of co-design

A significant challenge in completing this project was that building foundational relationships and trust takes time. While the authors view this trust as the foundation on which community-based participatory research and co-design are built, they note the direct tension of the time needed to develop these foundational relationships with the timeline expectations of academic and organisational decision-making. The flexibility required to deliver a person-centred research experience for the co-designers resulted in regular instances when timeline extensions were required to prioritise co-designer needs over efficiency. The result of prioritising co-designer needs over research timeline efficiency was an extended timeline that was significantly longer than expected, which sometimes created a disconnect between the flexibility of co-design and the rigidity in traditional academic and organisational processes.

The impacts of a longer-than-expected timeline for completion of the co-design process included financial, project scope, and sponsorship challenges. The project’s initial scope included a co-implementation and co-evaluation phase; however, due to the three-year time constraint, this was modified to conclude following the prototyping process. Whilst the three-year period set expectations for project sponsors and other collaborators from Rocky Bay, the wider context for the project varied significantly and rapidly over this period. This included two changes in Rocky Bay supervisor and one change in Rocky Bay project sponsor. Additionally, one of the academic supervisors left Curtin. This challenge indicates that the project would benefit from key role succession planning.

The peer researcher role was beneficial in providing an opportunity for a person with lived experience to join the study in a strength-based role and experience academic and business processes. However, challenges arose with the timeline extensions, which required this part-time, casual role to be extended by seven months. While the contract extension posed budgetary challenges, the role was viewed as vital to the completion of the project.

While an essential component of research, particularly involving vulnerable populations, ethical approvals proved challenging due to the non-traditional research methods involved in co-design. It was evident to the authors that while the ethics committee staff adhered to their processes, they were bound by a system that did not have adequate flexibility to work with newer research methods, such as co-design. Multiple methods in this study were heavily integrated into the community, including embedded research, peer research and co-design.

The present ethics process provided a comprehensive review focusing on planned interactions within research sessions (e.g. interviews and workshops). Unfortunately, this failed to account for a wider view, including the initial co-production prior to ethical application and anecdotal interactions that occurred regularly in the organic co-design process. In addition to the repeated submissions required to approve the sequential study format, these interactions created a significant workload for the research team and ethics office. These challenges were compounded by the need to navigate Rocky Bay’s organisational processes and changing business needs within ethical approval commitments.

In the authors’ opinion, prioritising the inclusion of lived experience experts in co-creating outputs to disseminate findings was beneficial. The co-creation enabled an authentic representation of the study to audiences regarding community-based participatory research and co-design method implementation. For example, the presentation of a panel discussion at a conference in which the peer researcher could prerecord his responses to questions as his preferred method of participation. All posters presented by the project were formatted to be accessible to lay consumers and were collaboratively produced, with the additional benefit of the posters being displayed across Rocky Bay hubs for customers and staff to gain study insights.

Due to the co-design method’s dynamic nature, some budgetary uncertainty was challenging to navigate. However, financial and non-financial remuneration for all non-staff participants in the project was prioritised. As previously discussed, the position of peer researcher was a paid role; additionally, all lived experience expert participants were remunerated at a rate of AUD 30/hour in the form of gift cards. The carer representative on the steering committee recommended using gift cards to avoid income declaration requirements from government benefits people may receive. Non-financial remuneration for the valuable time and contribution of the co-designer group included co-authorship on an article written regarding the Journey Map they produced (Benz et al. [ 37 ]) and acknowledgement in any other appropriate outputs. The implementation proposal provided to Rocky Bay included recommendations for continued inclusion and remuneration of co-designers.

Setting a new bar for inclusion

Another benefit to reflect upon, which may be the most significant legacy of the project, was setting the precedence for the inclusion of people with disability in decision-making roles in future projects and research conducted by the University and Rocky Bay. After this project commenced, other Rocky Bay clinical projects have similarly elevated the voices of lived experience in planning and conducting subsequent quality improvement initiatives.

I’m lucky enough to have been part of a lot of projects. But I guess I probably haven’t been a part of continuous workshops, pulling in all perspectives of the organisation perfectly… So, collaboration and getting insight from others I haven’t usually was a very unique experience, and I definitely found value if this were to continue in other projects. [Manager Co-designer]

In summary, the findings from using a co-design method for the telepractice research study produced a series of benefits and presented the researchers with multiple challenges. The findings also addressed a literature gap, presenting in-depth descriptive methods to demonstrate how co-design can be applied to a specific case.

Drawn from these findings, the authors identified six main points which form the basis of this discussion. These include (1) the fact that the necessary time and resources required to commit to co-design process completion adequately were underestimated at the outset, (2) there is a need to support the health, well-being and dignity of lived experience expert participants, (3) academic ethical processes have yet to adapt to address more participatory and integrated research methods, (4) strategies used to foster strong collaborative relationships across a diverse group were valued by all participants, (5) better delineation between terminologies such as co-design and community-based participatory research or patient and public involvement would improve the clarity of research methods and author intent and, (6) broader non-traditional impacts that participatory research can create should be better quantified and valued in the context of research impact. Each point will now be discussed in further detail.

In underestimating the time and resources required to complete the telepractice study, a scope reduction was required. This scope reduction removed the study’s originally planned co-implementation and co-evaluation phases. While Harrison et al. [ 40 ] and Bodden and Elliott [ 41 ] advocate for more frequent and comprehensive evaluation of co-designed initiatives, the authors acknowledge that this became no longer feasible within the study constraints. A growing body of literature indicates expected timelines for completed co-production projects from co-planning to co-evaluation. An example by Pearce et al. [ 5 ] indicated that a timeline of five years was reasonable. In contrast, a more limited co-design process was completed with a shorter timeline by Tindall et al. [ 13 ]. Although neither of these articles were published when this study commenced, they are complementary in building an evidence base for future research to anticipate an adequate timeline.

While co-design and other co-production processes are resource and time-intensive, the investment is essential to prioritise the health and other needs of potentially vulnerable population groups in the context of an imbalance of power [ 42 ]. In exploring the concept of dignity for people with disability, Chapman et al. [ 34 ] indicated that recognising the right to make decisions and proactively eliminating or minimising barriers to inclusion are key to protecting dignity. Community participation in decision-making processes such as this study can result in messy and unpredictable outcomes. However, the onus must be placed on policymakers, organisations, and academia to acknowledge this sufficiently rather than demand conformity [ 15 ].

The authors posit that the study would have benefited from an alternative ethics pathway, which may provide additional required flexibility while upholding the rigour of the ethical review process. The increasing frequency of participatory research studies indicates that challenges experienced by the authors of this study are unlikely to be isolated. Lloyd [ 43 ] described challenges regarding information gathered in-between, before and after structured research sessions, reflecting that they relied on personal judgement of the intent to consent for research use. Similarly, Rowley [ 44 ] reflected on the ethical complexities of interacting with families and respecting their confidentiality within the context of being integrated within an organisation. While these studies were co-production in child protection and education, the ethical challenges of their reflections parallel those experienced in the telepractice study. The risks posed by inadequate ethical support in these contexts are that increased poor ethical outcomes will occur, especially in the in-between times of co-design. Therefore, an ethics pathway that involves more frequent brief liaisons with a designated ethics representative to update project progress and troubleshoot ethical considerations may better support researchers to safeguard study participants.

We believe the decision to complete a sequential workshop series with a consistent group of diverse co-designers, led by co-facilitators, was a strength of the co-design process implemented in the telepractice re-design project. The group worked together across a series of workshops, which enabled them to build solid working relationships. Pearce et al. [ 5 ], Rahman et al. [ 16 ] and Tindall et al. [ 13 ] also demonstrated a collaborative whole-team approach to co-design. By contrast, studies that involved separate workshops with different cohorts or multiple of the same workshop did not demonstrate strong collaboration between co-designers [ 18 , 19 , 20 ]. Nesbitt et al. [ 19 ] explicitly highlighted that they would improve their method by completing sequential workshops with a continuous cohort. Stephens et al. [ 45 ] found that small mixed groups were not sufficient to support the participation of people with disability, indicating that the choice to intentionally balance groups to meet the lived experience expert co-designer’s needs may have been an impacting factor on our success.

A lack of clarity in the terminology used in co-design and community-based participatory practice was identified during the completion of this study. We found that co-design frequently meant either a collaborative design process or good participatory practices [ 46 ]. When viewing the structure of the telepractice re-design project, the overarching research approach was community-based participatory-research, and the method was co-design [ 9 ]. The delineation between the overarching approach and methods clarifies the misappropriation of the term co-design with the intent of meaning public participation [ 46 ] rather than the joint process of creative thinking and doing to design an output [ 11 ]. The use of the two-level structure appears more prominent in the United Kingdom, whereas Fox et al. [ 47 ] systematic review assessing public or patient participants identified that 60% of studies originated from the United Kingdom, compared to the next highest 16% for Canada or 4% from Australia and the United States. To improve clarity and reduce confusion about the terminology used, the authors advocate for greater awareness and implementation of the delineation between the concepts of a community-based-participatory-research/patient or public involvement approach versus the co-design method.

An example of co-design being used where alternate terms such as community-based participatory processes (or research) may be more relevant was the most recent amendment to the act governing the NDIS under which this project resided [ 48 ]. The term co-design could be interpreted as an intent to collaborate with people with disability for equitable involvement in all aspects of the NDIS [ 48 ]. It is proposed that the differentiation of these terms would assist in clarifying the intent of the study and dissuade inaccurate expectations of community involvement or design processes.

Implementing community-based participatory research has demonstrated the potential to create an impact that expands further than the original aim of the study. The skills learned by co-designers, the learning of the research team in collaboration with people with disability, the engagement and skill-building of a peer researcher with lived experience, the organisations who engaged in the co-design process and the academic and lay people who engaged with research outputs, all carry a piece of the impact of the co-design process. Rahman et al. [ 16 ] contend that co-design processes positively impact communities. In the context of this study, the peer researcher was included in the National Disability Insurance Agency’s quarterly report as an example of strength-based employment opportunities, which significantly positively impacted his career prospects [ 49 ]. This project provided skills for people with disability that they value and improved the clinical practice of clinician co-designers, which echoes the conclusions of Ramos et al. [ 15 ], who described that participants felt valued and experienced improved self-esteem. There is additional intent from the authors to positively impact disability providers and academia, to advocate for greater collaboration, and to provide open-access publications to provide a stronger evidence base for co-design in clinical practice and service delivery.

Strengths and limitations

The study provides reflective evidence to support the challenges and benefits experienced during the implementation of the study. However, a limitation in the project’s design was the exclusion of outcome measures to assess the impact of process design choices directly. Stephens et al. [ 45 ] completed targeted outcome measures correlating to accessibility adaptations in co-design and conceded that the variability of findings and individual needs reduced the usefulness of these measures.

The reduction of project scope enabled the completion of the study within the limitations of budgeting and timeline restrictions. Although the scope of the project had some flexibility, there were limitations to how far this could be extended as resources were not infinite, and staffing changes meant that organisational priorities changed. Including implementation and evaluation would have improved the study’s rigour. However, Rocky Bay now has the opportunity to implement internally without potential research delays and restrictions.

The blended and flexible approach to the co-design process was a strength of the study as it met the co-designers needs and maximised the project’s potential inclusivity. This strength has the potential to positively impact other studies that can modify some of the process design choices to suit their context and increase inclusivity [ 11 ]. It is believed that the messiness of co-design is important in meeting the needs and context of each individual study; therefore, no two co-design processes should look the same.

The authors concede that the inclusion of a cohort of people with disability and clinical staff does not represent the entirety of their communities, and their proposed changes may cause some parts of the disability community to experience increased barriers [ 50 ]. It is important to note that while the co-designers who participated in this project provided initial design developments, future opportunities remain to iterate the proposed telepractice service and continue to advocate for equitable access for all.

Recommendations for future studies

Recommendations from this study fall into two categories: recommendations for those intending to utilise the described methods and recommendations for future avenues of research inquiry. For those intending to implement the methods, the primary recommendations are to build ample time buffers into the project schedule, implement key role succession planning and set remuneration agreements at the outset, and work together as partners with the mindset that all contributors are creative [ 51 ] with important expertise and invaluable insights if supported appropriately.

Regarding avenues for future inquiry, we recommend investigating a more dynamic and flexible ethics process that may utilise more frequent short consultations to respond to ethical considerations during the emergent co-design and participatory research.

In the authors’ opinion, supported by co-designers experiences, co-design is a useful and outcome-generating methodology that can proactively enable the inclusion of people with disability and service providers in a community-based participatory research approach. The process is both time and resource-intensive; however, in our opinion, the investment is justified through the delivery of direct research benefits and indirect wider community benefits. We advocate for using community-based participatory-research/processes paired with co-design to generate creative thinking within service design processes. Through co-design processes, we recommend collaborating with a single diverse group of co-designers who have the time and space to build trusting working relationships that enable outputs representative of the group consensus.

Data availability

The dataset supporting the conclusions of this article is predominantly included within the article (and its additional files). However, due to the small number of co-designers reflecting upon the research, despite deidentification, there is a reasonable assumption of identification; therefore, the reflection activity response supporting data is not available.

Abbreviations

Australian Dollar

Guidance for Reporting Involvement of Patients and the Public 2 Checklist

Human Research Ethics Committee

Doctor of Philosophy

Patient and Public Involvement

Microsoft Teams

National Disability Insurance Scheme

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Acknowledgements

The authors acknowledge the contribution of Rocky Bay as the industry partner of this project and would like to thank the Co-designers of this project, without whom none of this was possible. The research team would also like to thank Katie Harris for her time and support throughout the workshop series, which were invaluable to the completion of the project and the formation of the published study.

The article forms part of a PhD project funded by the first author, CB’s Australian Government Research Training Program (RTP) scholarship.

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Contributions

CB and MW liaised with the steering committee and conceived the study and structure. SR, DH and RN guided the protocol development and ethics approval. KAM provided methodological support to the project and subject matter expertise. CB and WJS completed participant recruitment, facilitation of workshops and data collection. KAM and CB ideated the format and content of the article. CB completed data analysis and wrote the first draft of the manuscript. All authors reviewed and edited the manuscript and approved of the final version of the manuscript.

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The study was approved by the Curtin University Human Research Ethics Committee (ID# HRE2021-0731), and all participants provided written informed consent before engaging in any research activity.

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Cloe Benz, Richard Norman, Delia Hendrie & Suzanne Robinson do not have any competing interests to declare. Will Scott-Jeffs, Matthew Locantro and Mai Welsh, for all or part of the study period were employed by Rocky Bay a Not-For-Profit Disability Service provider who function as the industry partner for the project. K.A. McKercher is the author of a co-design method book referenced in the article. McKercher also runs a business that helps people co-design.

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Benz, C., Scott-Jeffs, W., McKercher, K.A. et al. Community-based participatory-research through co-design: supporting collaboration from all sides of disability. Res Involv Engagem 10 , 47 (2024). https://doi.org/10.1186/s40900-024-00573-3

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And she jumped out of her chair, smiled ear to ear, screamed “YES!,” and did a move I’ve seen in sports celebrations many times—the signature victory arm pump. 

Wait, what? 

As it turns out, I had also tested her brother a few years before, and he had dyslexia, too. He had told her that knowing he had dyslexia made him not feel stupid, and that it really helped his teachers understand how his brain worked differently. Dawn told me, “So this means I’m not dumb!”

According to labeling theory , when you label a student with a learning disability, this creates a problem—they hold lower expectations for themselves and others hold lower expectations of them. In turn, the student may live up to these low expectations. However, the research supporting this claim is controversial. Although students with learning disabilities do tend to struggle with lower achievement and hold negative beliefs about their academic abilities , some researchers point out that it is difficult to disentangle what is causing these challenges. It gets murky—would Dawn be behind her classmates in reading because she has dyslexia, because she doesn’t have access to high-quality support programs, or because her teachers and parents now hold lower expectations for her?

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We don’t really know. But the reality is that, in our public schools, access to special services sometimes depends upon having a diagnosis or label—and it’s possible that the way we treat students with these labels is holding them back. Here are several research-backed tips for educators and parents to reduce the negative effects of labels and the stigma around them. 

1. Don’t focus on the labels

Language is powerful. Even a subtle shift in language can influence how students see themselves and how stigmatized they feel. A 2018 article by researcher Mark Weist and his colleagues offers a number of suggestions for reducing the stigma of labels:

• When a label is required, describe to the student why labels are used. For example, “Labels help us understand why reading is hard for you and what the research says about how to help. Labels can also give you more specific help that you might not be able to get without the label. But we are all going to focus on what we are going to do to help, not what we call it.”
• Use person-centered language. Instead of referring to a student as a “dyslexic student,” refer to them as “a student with dyslexia.” 
• When possible, especially with younger students, use less stigmatizing language in describing their challenges (e.g., “learning differences” versus “learning disorder” or “severe dyslexia”).

By using this language, we’re trying to prevent students from overidentifying with their challenges and weaknesses.

2. Focus on the “sea of strengths” around the “islands of weakness” 

What if you were defined only by your greatest weakness? Focusing on strengths isn’t just a nice thing to do; it’s essential for students with learning disabilities (and all students) to feel good about themselves as learners.

Get Support

Did you know that every public school has access to the services of a school psychologist, who can provide support for students with learning challenges? School psychologists are uniquely qualified members of school teams who support students’ ability to learn and teachers’ ability to teach. They can be reached by inquiring directly at the school or the district’s central office, or locating contact information on the school or district website.

Renowned dyslexia expert Sally Shaywitz of the The Yale Center for Dyslexia & Creativity coined this phrase: “Dyslexia is an island of weakness surrounded by a sea of strengths.” When students see their weaknesses as “islands,” their challenges become more specific and manageable (e.g., “I need help figuring out long words”) rather than global and difficult to tackle (e.g., “I am not good at reading”).

Using specific language can also foster a “growth mindset” more conducive to learning. Rather than thinking, “I don’t have a math brain because I have dyscalculia,” students might say, “I need to do brain pushups in math.” The same goes for adults when we talk about students; instead of saying, “He has a major reading and learning deficit,” we can make it more specific and manageable by saying, “He has areas of strength and weakness in learning to read that we can address through phonics instruction.” 

Research is also emerging on the sea of “hidden strengths” of students with dyslexia and other learning disabilities:

• Strong visual-spatial thinking and skill in figuring out patterns
• The ability to make unique associations between concepts
• Strengths in seeing the “big picture” and creative problem solving

As educators and parents, we can highlight these strengths with students like Dawn (who, incidentally, scored off the charts on tests of visual logic puzzles). Indeed, all students would profit from having a spotlight on their unique talents and skills and not just on their core weaknesses.

“Often times we focus on the difficulties, but they have these incredible superpowers,” says psychologist Tracy Alloway, whose new children’s book series turns children’s learning disabilities into superpowers. Bringing those “superpowers” to the front of the discussion is a tool for empowering those with learning disabilities and helping other children appreciate their classmates’ unique talents, as well.

3. Foster self-awareness and self-advocacy skills

Not only can we focus on the extraordinary strengths these students already have, but we can also help them cultivate other strengths they’ll need to be successful.

Being diagnosed with a learning disability does not have to resign students to a life of struggle, frustration, and poor achievement. In a 30-year study by the Frostig Center , students with learning disabilities did better in their academic and personal lives if they had these six skills and resources:


• Self-awareness: Recognizing their unique talents and accepting their challenges.
• Proactivity: Believing in the power to make changes, taking responsibility for their actions, making decisions and acting upon them. 
• Perseverance: Learning from hardships and not giving up when tasks get hard.
• Goal setting: Making realistic and attainable goals, taking into account strengths and areas of need.
• Support systems: Identifying people who can provide support and actively seeking out support.
• Emotional coping strategies: Recognizing stress triggers for learning difficulties and developing effective means of coping with them.

As parents and educators, we would be well-served to focus on cultivating these social-emotional and behavioral skills so that students with learning disabilities can emerge from their educational experience with success in school and life.

Several researchers offer practical ways to support these resilience skills, using brain-based research. In their book The Yes Brain: How to Cultivate Courage, Curiosity, and Resilience in Your Child , psychotherapists Dan Siegel and Tina Payne Bryson share how parents and educators can help students strengthen their sense of balance, resilience, insight, and empathy. This “balanced brain” helps students with different learning profiles think more flexibly, be more willing to take chances and make mistakes, and manage adversity and big feelings. All of these traits are essential for learners, especially those who have additional frustration due to the challenges of their learning differences. 

Tapping into our students’ potential

At home and in the classroom, educators and parents can easily get tripped up on the language to use with students with learning disabilities. Having a strength-based lens and a few scripts ready can make a big difference in how the students we interact with see themselves as learners.  

We could all take a lesson from my student, Dawn, on positive mindset. When I later shared Dawn’s reaction to being diagnosed with dyslexia with her mother, we both teared up a little. Dawn gave me hope that as educators and parents, we can cultivate that resilience and strength in all the students who come to us with diverse learning needs.

About the Author

Rebecca Branstetter

Rebecca Branstetter, Ph.D. , is a school psychologist, speaker, and author on a mission to help children be the best they can be in school and in life by supporting school psychologists, educators, and parents. She is the co-creator of the “Make It Stick Parenting” course, which provides parents tools to build their child’s social-emotional learning, and creator of the “Peace of Mind Parenting” course. She is also the founder of The Thriving School Psychologist Collective, an online community dedicated to improving mental health and learning supports in public schools. Learn more at  www.thrivingschoolpsych.com .

How to Help Kids Overcome Fear of Failure

Does Neurodiversity Have a Future?

How to Be a Strength-Based Parent

How to Bring SEL to Students with Disabilities

How to Help Students Develop Hope

How Teachers Can Help Students Who Fail in Class to Succeed at Life

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Learning Disabilities Research Centers (LDRC) Consortium

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More Information

Studies conducted by the consortium generated a critical part of the research cited in the  Report of the National Reading Panel: Teaching Children to Read . Consortium research also provided key data that was used in the Reauthorization of the Individuals with Disabilities Education Act (Public Law 108-446) in 2004, which allowed states to consider alternative approaches in the classification of learning disabilities.

The consortium is supported by NICHD’s  Child Development and Behavior Branch  and is complemented by the Learning Disabilities Innovation Hub initiative . The consortium presently includes three research centers that involve numerous research sites and a large cohort of investigators with expertise in diverse topics related to learning disabilities. Funding for the centers is through a Specialized Research Center Grant award mechanism (P50) that allows for highly synergistic group efforts to tackle thematic research topics and create career-enhancing, mentored opportunities for the next generation of learning disabilities scholars.

LDRC Consortium research includes basic and translational studies to elucidate the cognitive, linguistic, neurobiological, and genetic mechanisms of reading, writing, and mathematics.

Research investigations include:

• Identifying the genetic and neurobiological contributions and response-to-intervention characteristics of children, adolescents, and adults with learning disabilities
• Developing and validating classification and risk assessment approaches for learning disabilities that impact reading, writing, and mathematics
• Developing and refining comprehensive models of learning disabilities to inform screening and treatment
• Investigating the nature of individual differences in response to instruction for diverse learners

Current Sites

• Florida Center for Reading Research  
• University of Colorado, Boulder: Colorado Learning Disabilities Research Center  
• University of Houston: Texas Center for Learning Disabilities  
• National Reading Panel Publications
• NICHD Contact: Brett Miller

‘A Unique Challenge’: What English Learners With Disabilities Need

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Students with disabilities face a gamut of challenges when it comes to accessing high-quality K-12 education, including a shortage of specialized teachers. The nation’s growing English-learner population faces outsized needs as their English-language proficiency scores remain lower than pre-COVID-19-pandemic averages , and immigrant English learners in particular require more trauma-informed instruction.

English learners who also have disabilities face their own intersectional issues, researchers and advocates say. They range from schools locking students out of dual-language programs in favor of English-only special education programs, language barriers between schools and families, and teachers ill-equipped to serve their students’ needs.

“It’s a complex issue. If it was easy, we would have probably figured out a better way forward by now,” said Sarah Salinas, an assistant professor at Minnesota State University, Mankato’s department of special education. “[This group] includes students that are at the intersection potentially of cultural differences, linguistic differences, and disability differences.”

According to federal data from the school year 2020-21 , nearly 14 percent of all students ages 5 through 21 enrolled in public schools were served under IDEA Part B. Of those students, 11.7 percent were English learners.

As this dual-identified population continues to grow, researchers and advocates offer some potential systemic solutions to many of the prevailing challenges these students and their families face.

A lack of access to bilingual education

One of the top concerns researchers and parents alike shared in interviews with Education Week when it comes to English learners with disabilities is a lack of access to bilingual education or dual-language programs.

Parents are encouraged to speak only English with dual-identified students, in part because of a flawed assumption that bilingualism will confuse them or hinder their academic progress or language progress, said Nikkia Borowski, a Ph.D. candidate in inclusive education at Syracuse University who studies access to bilingualism among such students.

She added that there is also the idea that dual-language programs are enrichment programs designed for academically gifted students, locking dual-identified students out in the process.

This preference for English-only instruction for English learners with disabilities plays out in smaller contexts as well, such as speech-generating devices students use that are programmed only in English.

“As a result, the students are missing access to a bilingual identity and missing access to really important cultural aspects as well,” Borowski said.

There is also the matter of how federal policy works for these dual-identified students.

Both the Equal Education Act of 1968 and the Individuals with Disabilities Education Act apply to this student population.

The IDEA, in its 2004 reauthorization, defines a least restrictive environment as the premise of providing services to a student with the greatest access to the general education curriculum, without any explicit mention of what these services look like for multilingual students, Salinas said. The Bilingual Education Act of 1968 focuses on language access for students whose first language is not English without explicit mention of education access for students with disabilities.

So while dual-identified students stand at the intersection of distinct federal policies and laws, the policies and laws are not intersectional themselves.

And even though an English-learner tool kit from the U.S. Department of Education’s office of English-language acquisition reminds educators that a student’s English learner and disability-related educational needs must be met, what ultimately ends up happening is special education and IDEA are consistently prioritized over bilingual education services, Salinas said.

Policymakers have talked about reauthorizing IDEA with more explicit mentions of the needs of dual-identified students, though such a move remains hypothetical, Salinas added.

But even before policies and practices can better align to the linguistic, cultural, and disability-related needs of students, another challenge is at play that presents a quicker potential solution.

The need to reassess communication between schools and families

Navigating IDEA and individual education programs, or IEPs, can already be a daunting task for families. Doing so while English is not the family’s home language is all the more complicated.

Under IDEA, districts must ensure that a student’s parents understand the proceedings of the IEP team meeting, including taking steps such as providing a translator.

In an April survey by the EdWeek Research Center, 65 percent of participating district and school leaders said they offered translation services for special education programming for students whose first language is not English. 37 percent said they did so for all relevant languages spoken by students and families.

Meanwhile, 6 percent of leaders said they do not offer such a service although they have special education students with that need.

Even when considering that 37 percent said their school or districts covered all relevant languages in translation needs, there’s a question of whether the translators involved were trained professionals who understand things like IEPs, or if Spanish-language teachers and bilingual receptionists were called in instead, said Christy Moreno, the chief community advocacy and impact officer of the Missouri-based family-advocacy group Revolucion Educativa.

Moreno, a trained interpreter and translator herself, said offering translation services is the minimum schools and districts must offer families. High-quality translation is key to ensuring families are fully informed of their rights, she added.

“I’ve seen IEPs that are done by Google Translate,” Moreno said.

In addition to investing in proper translation and interpretation, Moreno said educators need to proactively ensure that parents understand how to ask questions about their children’s education. That includes taking into account cultural barriers at play such as stigma within the Latino community over the experiences of students in special education.

Lizdelia Piñón, an emergent bilingual education associate for the Texas-based advocacy nonprofit Intercultural Development Research Association, or IDRA, knows all too well how important it is for families to advocate for their children. Her Spanish-speaking 11-year-old triplets require several accommodations for their autism, cerebral palsy, ADHD, and more.

On several occasions, Piñón said she had to file formal complaints against her local school district to ensure her children’s linguistic and special education needs were met—including pushing back against an attempt to reduce the time her triplets spent with their special education teacher.

However, one systemic issue she sees is a lack of proper training among educators on how to best work with dual-identified students.

The need for better teacher preparation

Piñón worked as a bilingual teacher for about 10 years. She knows that existing bilingual teachers can get their certification in special education as well. But there is a gap of information in both programs, she said, leaving teachers without full context on how to best work with dual-identified students.

“I think that educating English learners with disabilities is a unique challenge for our teachers,” Piñón said.

Overall, there aren’t many teacher-preparation programs that train teachers on what to do in bilingual special education classrooms, said Salinas of Minnesota State University.

Recognizing that knowledge gap, Piñón worked on legislation signed into law in 2021 in Texas to create a bilingual special education certification. However, approval of the new certificate program remains stalled within the state board of education.

Yet, a temporary solution to such knowledge gaps in teacher preparation lies in strategic collaboration among educators, Salinas said.

Such work isn’t always possible between special education and bilingual education teachers on account of tight school schedules and other barriers, she added.

Still, it’s a strategy researchers focusing on English learners say can mitigate not only a lack of bilingual and special education teachers but also address how little training general education teachers have when it comes to working with English learners and special education students overall.

Coverage of students with learning differences and issues of race, opportunity, and equity is supported in part by a grant from the Oak Foundation, at www.oakfnd.org . Education Week retains sole editorial control over the content of this coverage. A version of this article appeared in the May 22, 2024 edition of Education Week as ‘A Unique Challenge’: What English Learners With Disabilities Need

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183 Learning Disability Research Topics & Essay Examples

📝 learning disability research papers examples, 🎓 simple research topics about learning disability, 👍 good learning disability essay topics to write about, ⭐ interesting topics to write about learning disability, 🏆 best learning disability essay titles, ❓ learning disability research questions.

• Learning Disabilities and Communication Disorders This report illustrates that teaching children with a learning disability is a collaborative task, which needs the active participation of teachers, parents, and other support workers.
• How Inclusion Impacts Autistic Children? Autism is a neural disorder identified through the problems in socialization, communication and typecasting characters. Autism poses threats and challenges to the learning of children.
• Special Education Disability Categories The present study aimed to analyze how special education impacts development in children born with different categories of disability.
• Learning Disabilities: Causes, Signs and Types Learning disabilities are defined as human disorders related to the nervous system that makes it hard for people to acquire educational and social skills.
• Alternate Assessments for Learning Disabled Students Alternate assessment methods are actively proposed for evaluating the progress of different student populations, including students with disabilities.
• Alternate Assessments for Students with Learning Disabilities The purpose of this paper is to discuss the topic of alternative assessment methods for students with learning disabilities in relation to Marion County School District.
• Assessments for Students With Learning Disabilities Alternate assessment methods are actively proposed for evaluating the progress of different student populations, including students with disabilities.
• Theory of the Inclusive Education The interventional and educational programs for the individuals with special needs only started to be developed and implemented during the 1960s.
• New Brookhaven School and Disabled Students This paper looks into how New Brookhaven School’s English language learners with disabilities can be handled and how they can cope with the institution’s education environment.
• Reading Disability and Learning Difficulty Program The paper identifies the learning disabilities of a fifth-grade student, highlights the targeted learning outcomes, describes achieving the learning outcomes.
• Individuals with Disabilities Education Act (IDEA) IDEA is a federal law in the United States that governs the way states and public agencies provide special education related services to children with disabilities.
• Teachers’ Perceptions of Learning Disabilities The study investigates the teachers’ perception of students with learning disabilities in the United Arab Emirates schools.
• Learning Difficulties in Australia This paper explores learning difficulties to identify issues, theories, and support models and describes how the understanding of learning difficulties in Australia has changed.
• Learning Disabled Students: Teaching and Parenting This paper discusses types of learning disabilities, perspectives, strategies for teaching students who struggle with learning deficiencies, and parent engagement.
• Co-Teaching for Children with Disabilities This paper focuses on evaluating co-teaching as a means for the successful inclusion of students with disabilities in a rural district, by reviewing articles.
• Reading Performance of Learning Disabled Students Consistent with the research literature, there are many successful and valuable teaching methodologies to enhance reading performance and word acquisition.
• Intervention for Young Children with Learning Disabilities This paper discusses strategies that teachers could use to educate children with learning disabilities and how the Response to Intervention could support their educational outcomes.
• Identification of Learning Difficulties in Australia The process of identifying and responding to the needs of students with learning difficulties is challenging for administrators and teachers in the Australian mainstream schools.
• The Requirements of Students with Disabilities The purpose of the current paper is to identify how the requirements of students with disabilities are met within an educational context.
• Assistive Technology Plan for a Disabled Learner This paper presents a creating an assistive technology plan for a learner with a physical impairment, reading, and learning disability.
• Analyzing of the PLOP for a Student By analyzing the PLOP for a student with a specific learning disability, it is possible to get a clear understanding of him as a student.
• Models of Teaching: Learning Disability and Mathematics Both knowledge and skills in mathematics are necessary for childhood and adulthood due to their practical implementation.
• Speech and Language Disorders of American Children There are different types of speech and language disorders, and for most of them, there is a special treatment that needs to be done to help the person.
• Effects of Service Interruption on ADA Students with Learning Disabilities The education system is among the key areas where systems must be designed with a particular focus on ADA (Americans with Disabilities Act) learners' needs.
• Field Experience Report and Reflection: Special Education Throughout this field experience, the author has learned more about the current practical approaches to education for children with special needs.
• Special Education for Children of Kindergarten and Third-Grade Levels Special education is designed to address the needs of students with specific disabilities in a very individual manner.
• Teaching Strategies for Pupils With Special Educational Needs The authors of the article claim that mainstream teachers show little concern for learners with disabilities who are integrated into their classrooms.
• Learning Disability: Response-to-Intervention (RTI) and Hybrid Models The RTI model implies determining the extent to which children are able to meet valid instructions, instead of focusing on IQ-testing or a discrepancy model.
• The Inclusion of Learners With Special Educational Needs Many societies and countries lack a proper model for empowering pupils with special needs and taking them through the learning process.
• The Analysis of Different Learning Theories This paper aims to analyze different learning theories and how these theories make positive and negative impacts on the success and lack of success of children.
• Head Start and Special Needs Teachers The two professions deal with learners who are delicate and need special attention and care. A head start teacher supervises and organizes pre-K students in classrooms.
• Identification of Learning Disability and RTI Model The purpose of LD identification is to determine whether a student needs special education and services or not, while diagnosis implies the clarification of causes and treatment.
• Learning and Speech Disorders in Children Learning and speech disorders affect language development and learning in children. Main causes include hearing impairments, traumatic brain injuries, cognitive development delays.
• Learning Disability: Special Education Strategies The aim of this project implies examining special education and learning disabilities through the lenses of social science and humanities to analyze the problem from two perspectives.
• Societal Impact of Learning Disabilities In the articles by Cortella & Horowitz and Bizier, Marshall, & Fawcell, they provide an overview of the prevalence rates of learning disabilities in the US. and Canada.
• Students With Disabilities: Strategies and Teaching Methods Students with disabilities require significantly different educational practices, and applying these unique conditions can be challenging for a teacher.
• Theoretical Approaches to Caring for People with Learning Disabilities This essay discusses factors influencing the elderly with learning disabilities, nursing care for this client group, and the Roper-Logan-Tierney Model.
• Learning Disabilities in Canadian Context: British Columbia and Ontario The policies of BC and Ontario identify students with LD as those who have one or several disorders that affect their learning, resulting from impairment to perceive information.
• Case Study of Learning Disabilities: Autism It can be articulated from the report that Autism is a problem that needs to be focused on especially in the educational system.
• Technology Integration in Special Education The Fairfax County Public Schools recommend alternative methods of instruction for students with an impaired ability to comprehend and process information.
• The Effect of Training Employees to Work With Special Education Children The paper assesses the effect of training employees to work with special education children and test their improvement in knowledge after completing a training program.
• Learning Disabilities: The Role of an Slp The paper states that the role of an SLP cannot be overlooked or underestimated because of the need to address the speech-language disorder promptly.
• Children With Exceptionalities: Intellectual Disability TED Institute offers Emilie Weight’s presentation about living with a son who has an intellectual disability. This short talk was impressive because and caused several reactions.
• Individualized Education Program Meeting Analysis The given paper will present the overview of an individualized education program meeting for a third-grade male student of Chinese origin.
• Interventions Dealing with Special Need Children This paper discusses the role of the knowledge of child development in assisting professionals in providing effective learning interventions.
• Characteristics of Children With Learning Disabilities Problems with Word Recognition stipulate that a student has some challenges with identifying words and pronouncing them correctly.
• Services for Students With Intellectual Disabilities Inclusive education is beneficial not only for students with disabilities but also for learners who do not require special educational needs.
• Inclusion of Students With Intellectual Disabilities Limitations and delays in mental functioning characterize ID in terms of skills lagging. Children may have difficulties in adjusting to social rules, as well.
• Adaptive Assessments of Intellectual Disabilities Adaptive assessments evaluate the so-called “life skills,” falling under the three categories: conceptual, social, and practical.
• Characteristic of Intellectual Disability Intellectual disabilities are often the result of a person’s genetics or the conditions surrounding their birth. As such, they can develop before the person is even born.
• Assessment Tools in Special Needs Education Among the listed assessment tools, my school system primarily uses standardized tests, dynamic assessments, and criterion referenced tools.
• Instructional Techniques for Students With Intellectual Disabilities Explicit instruction and scaffolding are more advanced techniques and present a next step to the direct instruction.
• The Definition and Needs of Special Education The term of SPED traditionally includes travel training, vocational education, and speech-language pathology services.
• Disproportionality in Special Education In the United States, minority students with learning disabilities form the highest percentage in comparison with those from other ethnicities.
• Critical Incident in Education Experience This paper aims to analyze a critical incident involving a pupil with autism and discuss lessons and policy recommendations garnered from experience.
• Children with Attention Deficit Hyperactivity Disorder The main challenges of the Attention deficit hyperactivity disorder include inattention, inability to concentrate, memory deficits, time management, and emotional control.
• Individual Education Plan in Case of Disabilities The paper discusses an individual educational plan. It is necessary when working with children with disabilities or developmental delays.
• Teaching Children With ADHD The teaching method used by an instructor should cater to the student's needs. It is essential to understand what works for them and then model one’s teaching to suit this.
• Inclusive Education and Effective Practices The purpose of this paper is to ascertain the most effective practices for educating students in inclusive classes.
• Accessibility for Students With Autism in Education in K-12 The general picture of accessibility for students with autism in education in K-12 appears to be somewhat optimistic.
• Special Educational Needs in Europe This paper shall address the issue of modern language in special education. A literature review shall be conducted on modern foreign languages and special education inclusion.
• Accommodating Students With Disabilities in the Classroom The individualized approach may be better at accommodating specific students in the classroom, though they may be uncomfortable with disclosing their conditions in detail.
• Pupils with Special Education Needs and Disabilities Effective support is possible through interactions and collaboration between teachers and the parents of students with special education needs and disabilities.
• Examination of Elementary Teachers' Perceived Barriers Regarding the Inclusive Setting The research examines New Jersey elementary school teachers' preparedness for and perceived barriers to meeting the academic needs of SWDs in the inclusion setting.
• Students' Language Disorder The language disorder problem is a complex phenomenon that necessitates an extraordinary approach. Its definition, main characteristics, and causing factors were discussed.
• Creating a Collaborative Service Delivery Transition for Children With Disabilities This paper discusses what is to be done during the child change from one age to the next and specifically from in-house-based care to school-based care.
• Education for the Disabled: The Individuals with Disabilities Education Act The paper focuses on assessing how education environments have been made suitable for students with any form of disability.
• The Challenging Cases Faced by Teachers It is proven to be effective in encouraging a student to displace problematic behavior and aggression with favorable actions and respect for others.
• "A Comparison of Saudi and Canadian Children’s Knowledge..." by Felimban With a qualitative approach, this comparative research analyzed the beliefs of students from Canada and Saudi Arabia regarding the factors associated with learning disabilities.
• Supporting Children with Disabilities Through Embedded Learning Opportunities Infants and toddlers require specialized trained professionals or extremely experienced individuals to understand their learning process.
• The IDEA Act and 504 Plan Implementation at School The Individuals with Disability Education Act of 1990 outlines provisions that a school must use to ensure children with disabilities are well catered for to compete with others.
• Georgia’s Segregation of Students With Disabilities The paper describes what might be the state of Georgia’s rationale for the practice of segregation of students with disabilities.
• Teaching Play Skills for Children with Disabilities This article delves into teaching play to enhance learning outcomes and improve the quality of life of children with disabilities.
• Big Ideas in Special Education This article discusses specialized approaches implemented in the educational system to demonstrate their beneficial applications to the learning process.
• Teacher Leadership Practices in Special Education It is paramount for teachers in special education to utilize the most advanced strategies in supporting learners and encouraging them to build the required skill set.
• Educational Law: Individuals With Disabilities Education Act Individuals With Disabilities Education Act (IDEA) prepares disabled children not solely for further education but for employment and living separately as well.
• Students' Study Goals in Inclusive Education One of the goals for future development is concerned with expanding knowledge of children's disabilities to have an improved understanding of students' needs.
• Inclusive Classes vs. Special Education The education of children with special needs is one of the primary responsibilities. It is a necessary condition for creating an equal society where everyone can feel needed.
• Learners With Mild Intellectual Disabilities One of the strategies in helping children with mild intellectual disabilities is a focus on greater home based methods of learning and teaching.
• Analysis of Individualized Education Program Individualized Education Program is one of the most effective ways to adjust the lessons according to the needs of the child and the expectations of parents and teachers.
• Strategies to Reach Children With Disabilities The paper talks about strategies that can use to reach children of all disability levels and describes the system in detail, where the plan came from, and how it is effective.
• Special Education Curriculum Issues and Their Solutions in the USA There are many potential improvements that can transform the special education programs across the US to become more efficient, inclusive, and appropriate for the stakeholders.
• Approaches to Teach Children With Developmental or Intellectual Disabilities The activity-based approach is a method of teaching in which children do not receive knowledge in a ready-made form.
• Autism Spectrum Disorder and Special Education Issues It is typical for a child with an Autism Spectrum Disorder to struggle with social interactions and to have difficulties communicating with teachers and other students.
• Special Education Services and Intervention Intensity Special education services are essential to children with disabilities and also to those that have slow learning skills.
• Attendance and Performance in Non- and Disabled Secondary Students This literature review paper identifies what is known about the effect of poor attendance on academic performance in disabled secondary students and their non-disabled peers.
• Government Policies on Educating People With Disabilities Only with the right policy from the government, the people would understand the importance of teaching people with disabilities.
• Students With Special Needs and Educational Processes The paper states that is vital to cater to student's needs and find the right approach to establish productive communication with them in classes.
• Students With Hearing Disabilities: Educational Plan Due to the success of educational services provided to individuals with hearing disabilities, integration classes concerned with providing services at all levels have spread.
• How to Create an Inclusive Environment for Students with Language Disabilities The teacher should create an inclusive environment in class to ensure that all the students are active participants in the education process.
• Response to Intervention and Registering Progress in Learning Response to Intervention (RTI) is a multi-tier system of support (MTSS) that aims at supporting all children to register progress in their learning.
• The Retention Rates of Twice-Exceptional Students With Autism In the middle of the twentieth century, the idea of twice-exceptionality was further operationalized and became a topic of detailed inquiry.
• Inclusive Education for Children With Autism The paper determines the evolution of the development of inclusive education, the terminology, and the characteristics of what makes a system inclusive.
• Life After High School: Autism in Post-Secondary Schools The paper studies the impact of a transition process on post-secondary students with autism and discovers supporting institutional practices.
• The Needs of Students With Disabilities The paper states that the situation must be changed to address the needs of students with disabilities and represent them in the specified legislation.
• Disability in Education: A Juridical Perspective The purpose of this essay is to consider the problem of teaching children with disabilities in educational institutions of various levels.
• Inclusive Education: The Individuals with Disabilities Act The Individuals with Disabilities Act provides good opportunities for inclusive education in theory, however there are problems in practice.
• Social Interaction Interventions for Students with Autism in School Autism spectrum disorders represent a whole spectrum of developmental disorders characterized by various manifestations of the uniqueness of the various spheres.
• Personality, and Life Quality Impact of Children With Dyslexia Children with dyslexia have an unstable mentality and unpredictable behavior, they are experiencing difficulties in the perception and the inability to express thoughts.
• Dyslexia in Young Children: Developmental Language Disorder ADHD, autism spectrum disorder, depression, anorexia, Tourette's, and bipolar are among those conditions that have various symptoms.
• Plans for Students with Learning Differences Students with learning differences like emotional and behavioral disorders, autism spectrum disorder, and dyscalculia have a right to be included in the curriculum.
• The Oppositional Defiant Disorder in a Child The case study features a ten-year-old boy whose parents complain of his constant anger and irritability, accompanied by outbreaks of psychomotor activities.
• Bullying of Disabled Children in School The purpose of this study is to evaluate the level of bullying of students with disabilities and special education needs.
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Predicting and detecting abuse in supported living for people with a learning disability and autistic people

by King's College London

The abuse of people with a learning disability and autistic people sadly features in several health and care services across the years. Researchers have consistently reported that people with a learning disability and autistic people are more at risk of abuse than other groups, especially when living in residential services (as compared to older people more generally, or those people with mental health needs).

In England, care homes and supported living providers who provide personal care must be registered, meet set standards, and are inspected by the regulator, the Care Quality Commission (CQC). Its role is to register health and care providers as well as monitor, inspect and regulate health and adult social care services. The CQC collects information from and about these services and visits them to see evidence and to talk to residents, their families and staff through its regulatory role and inspection process.

A new report presents findings of an independent study exploring the potential for using data to predict and detect abuse in care homes and supported living services for people with a learning disability and autistic people . It builds on suggestions that there may be scope to use Artificial Intelligence (AI) to interrogate the CQC's data efficiently and effectively and reflects wider debates about the potential for using AI to serve the needs of society.

This research demonstrated the feasibility of researchers accessing CQC data for analysis and the considerable amount of information potentially useful in the prediction and detection of abuse in care homes and some supported living settings. It also revealed that the analytic potential of these data would be enhanced through its greater digitization and that having this information in analyzable form at service level could be helpful in developing risk indicators and identifying trends in abuse across services.

The study also highlighted known gaps in information relating to supported living services.

Natural Language Processing (NLP) gives the opportunity to harness the potential of some of CQC's data. However, when using such methods, this research identified that it is important not to lose the 'human perspective' and that the contribution of public contributors and other stakeholders in research using NLP and in the CQC's work more widely is essential.

The report identifies six recommendations for future research and concludes the following:

"There is appetite for enabling regulatory and inspection systems and processes to benefit from advances in information processing, such as AI, and, thereby, potentially to prevent or respond to the abuse and neglect of people living in care homes and supported living services.

"Our focus is on services in England for adults with a learning disability and autistic adults within the context of the regulatory regime of the Care Quality Commission (CQC), but our observations may be more widely applicable. Our study took place at a time of change of activities within the CQC and the passing of a new law related to supported living services; such times can provide opportunities to do things differently."

The research revealed the complexities of using data to help predict and detect abuse in care homes and supported living services. It argues "while some of these complexities could be addressed within the existing regulatory and legislative context, many of the issues underlying this require an urgent wider multi-departmental central government policy response." This includes the oversight of supported living arrangements.

See also the accompanying "Easy Read Summary Report" .

Helen Chester et al, A study about making the most of Care Quality Commission data (Predicting and detecting abuse in registered care homes and supported living for people with a learning disability and autistic people): Easy Read Summary Report, King's College London (2024). DOI: 10.18742/pub01-168

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New advances in technology are upending education, from the recent debut of new artificial intelligence (AI) chatbots like ChatGPT to the growing accessibility of virtual-reality tools that expand the boundaries of the classroom. For educators, at the heart of it all is the hope that every learner gets an equal chance to develop the skills they need to succeed. But that promise is not without its pitfalls.

“Technology is a game-changer for education – it offers the prospect of universal access to high-quality learning experiences, and it creates fundamentally new ways of teaching,” said Dan Schwartz, dean of Stanford Graduate School of Education (GSE), who is also a professor of educational technology at the GSE and faculty director of the Stanford Accelerator for Learning . “But there are a lot of ways we teach that aren’t great, and a big fear with AI in particular is that we just get more efficient at teaching badly. This is a moment to pay attention, to do things differently.”

For K-12 schools, this year also marks the end of the Elementary and Secondary School Emergency Relief (ESSER) funding program, which has provided pandemic recovery funds that many districts used to invest in educational software and systems. With these funds running out in September 2024, schools are trying to determine their best use of technology as they face the prospect of diminishing resources.

Here, Schwartz and other Stanford education scholars weigh in on some of the technology trends taking center stage in the classroom this year.

AI in the classroom

In 2023, the big story in technology and education was generative AI, following the introduction of ChatGPT and other chatbots that produce text seemingly written by a human in response to a question or prompt. Educators immediately worried that students would use the chatbot to cheat by trying to pass its writing off as their own. As schools move to adopt policies around students’ use of the tool, many are also beginning to explore potential opportunities – for example, to generate reading assignments or coach students during the writing process.

AI can also help automate tasks like grading and lesson planning, freeing teachers to do the human work that drew them into the profession in the first place, said Victor Lee, an associate professor at the GSE and faculty lead for the AI + Education initiative at the Stanford Accelerator for Learning. “I’m heartened to see some movement toward creating AI tools that make teachers’ lives better – not to replace them, but to give them the time to do the work that only teachers are able to do,” he said. “I hope to see more on that front.”

He also emphasized the need to teach students now to begin questioning and critiquing the development and use of AI. “AI is not going away,” said Lee, who is also director of CRAFT (Classroom-Ready Resources about AI for Teaching), which provides free resources to help teach AI literacy to high school students across subject areas. “We need to teach students how to understand and think critically about this technology.”

Immersive environments

The use of immersive technologies like augmented reality, virtual reality, and mixed reality is also expected to surge in the classroom, especially as new high-profile devices integrating these realities hit the marketplace in 2024.

The educational possibilities now go beyond putting on a headset and experiencing life in a distant location. With new technologies, students can create their own local interactive 360-degree scenarios, using just a cell phone or inexpensive camera and simple online tools.

“This is an area that’s really going to explode over the next couple of years,” said Kristen Pilner Blair, director of research for the Digital Learning initiative at the Stanford Accelerator for Learning, which runs a program exploring the use of virtual field trips to promote learning. “Students can learn about the effects of climate change, say, by virtually experiencing the impact on a particular environment. But they can also become creators, documenting and sharing immersive media that shows the effects where they live.”

Integrating AI into virtual simulations could also soon take the experience to another level, Schwartz said. “If your VR experience brings me to a redwood tree, you could have a window pop up that allows me to ask questions about the tree, and AI can deliver the answers.”

Gamification

Another trend expected to intensify this year is the gamification of learning activities, often featuring dynamic videos with interactive elements to engage and hold students’ attention.

“Gamification is a good motivator, because one key aspect is reward, which is very powerful,” said Schwartz. The downside? Rewards are specific to the activity at hand, which may not extend to learning more generally. “If I get rewarded for doing math in a space-age video game, it doesn’t mean I’m going to be motivated to do math anywhere else.”

Gamification sometimes tries to make “chocolate-covered broccoli,” Schwartz said, by adding art and rewards to make speeded response tasks involving single-answer, factual questions more fun. He hopes to see more creative play patterns that give students points for rethinking an approach or adapting their strategy, rather than only rewarding them for quickly producing a correct response.

Data-gathering and analysis

The growing use of technology in schools is producing massive amounts of data on students’ activities in the classroom and online. “We’re now able to capture moment-to-moment data, every keystroke a kid makes,” said Schwartz – data that can reveal areas of struggle and different learning opportunities, from solving a math problem to approaching a writing assignment.

But outside of research settings, he said, that type of granular data – now owned by tech companies – is more likely used to refine the design of the software than to provide teachers with actionable information.

The promise of personalized learning is being able to generate content aligned with students’ interests and skill levels, and making lessons more accessible for multilingual learners and students with disabilities. Realizing that promise requires that educators can make sense of the data that’s being collected, said Schwartz – and while advances in AI are making it easier to identify patterns and findings, the data also needs to be in a system and form educators can access and analyze for decision-making. Developing a usable infrastructure for that data, Schwartz said, is an important next step.

With the accumulation of student data comes privacy concerns: How is the data being collected? Are there regulations or guidelines around its use in decision-making? What steps are being taken to prevent unauthorized access? In 2023 K-12 schools experienced a rise in cyberattacks, underscoring the need to implement strong systems to safeguard student data.

Technology is “requiring people to check their assumptions about education,” said Schwartz, noting that AI in particular is very efficient at replicating biases and automating the way things have been done in the past, including poor models of instruction. “But it’s also opening up new possibilities for students producing material, and for being able to identify children who are not average so we can customize toward them. It’s an opportunity to think of entirely new ways of teaching – this is the path I hope to see.”

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How to Weigh the Risks of Disclosing a Disability

• Ludmila N. Praslova

Disclosing a challenging health condition at work can be risky. You may get the accommodations you need, but you may also be met with suspicion, resentment, and accusations of making it all up. Research shows that most disabled employees experience some form of workplace discrimination, including hiring biases, pay gaps, bullying, and mistreatment. In addition, when people with nonapparent conditions disclose them, they often get a “You look fine” response, adding to their reluctance to disclose. In this article, the author discusses why disclosure is challenging, how to decide whether the risk is worth taking, and how a network can support you.

A guide to help you decide — and find support.

Whether to disclose your long Covid, or any other nonapparent condition or disability, to your employer is a deeply personal and consequential decision. While disclosing may help you access accommodations, it carries risks stemming from stigma and ableism. You might get support, but you might also be met with suspicion, resentment, and accusations of making it all up.

And what their employers are — and aren’t — doing to support them.

• Ludmila N. Praslova , PhD, SHRM-SCP, uses her extensive experience with neurodiversity and global and cultural inclusion to help create talent-rich workplaces. The author of The Canary Code , she is a professor of graduate industrial-organizational psychology and the accreditation liaison officer at Vanguard University of Southern California. Follow Ludmila on LinkedIn .

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Developmental Disabilities

At a glance.

In the United States, about 1 in 6 children have a developmental disability. Developmental disabilities are a diverse group of severe chronic conditions that are due to mental and/or physical impairments. The specific cause of most developmental disabilities is unknown. They may result from an interaction between genetic, environmental, and social factors.

We Track That

The Tracking Network has data for seven developmental disabilities. Causes of specific developmental disabilities are often not known. However, these disabilities were chosen because some scientific evidence suggests environmental exposures may play a role in developing these conditions.

The Tracking Network has data on the following developmental disabilities.

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The Tracking Network has data for two developmental disability indicators.

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