Disability and Health Stories from People Living with a Disability

  • Nickole's Story
  • Jerry's Story
  • Justin's Story
  • Suhana's Story

Real Stories from People living with a Disability

Nickole cheron’s story.

Photo: Nickole Chevron

In 2008, a rare winter storm buried Portland, Oregon under more than a foot of snow. The city was gridlocked. Nickole Cheron was stuck in her home for eight days. Many people would consider that an inconvenience. For Nickole, whose muscles are too weak to support her body, those eight days were potentially life-threatening.

Born with spinal muscular atrophy, a genetic disease that progressively weakens the body’s muscles, Nickole is fully reliant on a wheelchair and full-time caregivers for most routine tasks. Being alone for eight days was not an option. So Nickole signed up for “ Ready Now! pdf icon [PDF – 4.8MB] external icon ,” an emergency preparedness training program developed through the Oregon Office of Disability and Health external icon .

“The most important thing I learned from ‘Ready Now!’ was to have a back-up plan in case of an emergency situation ,” she said. “When I heard the snow storm was coming, I emailed all my caregivers to find out who lived close by and would be available. I made sure I had a generator, batteries for my wheelchair, and at least a week’s supply of food, water and prescription medication.”

Nickole said the training was empowering, and reinforced her ability to live independently with a disability. She felt better informed about the potential risks people with disabilities could encounter during a disaster. For example, clinics might close, streets and sidewalks might be impassable, or caregivers might be unable to travel.

Among the tips Nickole learned from Oregon’s “Ready Now!” training are:

  • Develop a back-up plan. Inform caregivers, friends, family, neighbors or others who might be able to help during an emergency.
  • Stock up on food, water, and any necessary prescription medications, medical supplies or equipment. Have enough to last at least a week.
  • Make a list of emergency contact information and keep it handy.
  • Keep a charged car battery at home. It can power electric wheelchairs and other motorized medical equipment if there is an electricity outage.
  • Learn about alternate transportation and routes.
  • Understand the responsibilities and limitations of a “first responder” (for example, members of your local fire department of law enforcement office) during a disaster.

“This training shows people with disabilities that they can do more to triage their situation in a crisis than anyone else can,” she said. “‘Ready Now!’ encourages people with disabilities to take ownership of their own care.”

CDC would like to thank Nikole and the Oregon Office of Disability and Health external icon for sharing this personal story.

Learn about emergency preparedness for people with disabilities »

Jerry’s Story

Photo: Jerry talking with his doctor

Jerry is a 53 year old father of four children. He’s independent, has a house, raised a family and his adult kids still look to him for support. Jerry recently retired as a computer programmer in 2009, and competes and coaches in several sports. This “healthy, everyday Joe, living a normal life” has even participated in the Boston Marathon. Jerry also has had a disability for over 35 y ears. In 1976 on December 3 (the same day that International Persons with Disabilities Day is recognized) Jerry was hit by a drunk driver. The accident left him as a partial paraplegic.

Jerry’s life is not defined by his disability. He lives life just like anyone else without a disability would live their life. “There’s lots I can do, and there are some things that I can’t do,” said Jerry. “I drive, I invest money. I’m not rich, but I’m not poor. I enjoy being healthy, and being independent.”

As a person with a disability, however, Jerry has experienced many barriers. Recovering from recent rotator cuff surgery, his rehabilitation specialists “couldn’t see past his disability”, administering tests and delivering additional rehabilitation visits that a person without a disability wouldn’t receive. He once was being prepared for surgery when a nurse proclaimed “he doesn’t need an epidural, he’s a paraplegic.” Jerry had to inform the nurse that he was only a partial paraplegic and that he would indeed need an epidural.

Jerry was in line at an Alabama court house to renew his parking permit and also renew his son’s registration. He watched a worker walk down the line and ask people “what do you need?” When she got to Jerry and saw his wheelchair, he was asked “who are you here with?” And Jerry finds it difficult to go to concerts and baseball games with a large family or friends gathering, because rarely are handicap-accessible tickets available for more than two people.

Jerry has seen a lot in over 35 years as someone living with a disability. He’s seen many of the barriers and attitudes towards people with disabilities persist. But he’s also seen many positive changes to get people with disabilities physically active through recreational opportunities such as golf, fishing and even snow-skiing. There are now organizations such as Lakeshore Foundation external icon – where Jerry works part-time coaching youth basketball and track – that provide recreational opportunities.

Jerry states: “I don’t expect the world to revolve around us. I will adapt – just make it so I can adapt.”

Justin’s Story

Justin meeting with colleague in his office

Justin was first diagnosed with a disability in the form of ADD (attention deficit disorder, now known as ADHD, or attention-deficit/hyperactivity disorder) at the age of 5 years. The diagnosis resulted in his removal from a regular classroom environment to special education courses. Justin’s parents were informed by Justin’s educators that he probably wouldn’t graduate high school, much less college.

Years later, as a young adult, Justin developed Meniere disease (an inner ear disorder), which affected his hearing and balance. The onset of the disorder left Justin with the scary reality that he could permanently lose his hearing at any time. Justin recalled a former supervisor taking advantage of this knowledge with an inappropriate prank: While speaking in a one-on-one meeting, the sound from the supervisor’s mouth abruptly halted, while his lips continued to move. Justin thought he had gone deaf – until the supervisor started laughing – which Justin could hear. Behaviors like the above took its toll on Justin’s confidence – yet, he knew he could contribute in society.

Spurred in part by adversity, Justin went back to school, earned a business degree, and shortly after, entered the commercial marketing industry. However, despite his education and experience, Justin was still regularly subject to the same stigma. Many of Justin’s work experiences over the course of his career left him feeling ashamed, guilty, offended, and sometimes, even intimidated. Rather than instilling confidence, it left him demoralized – simply because he was differently abled.

In July of 2013, everything changed for Justin. He joined the Centers for Disease Control and Prevention working as a contractor in the Division of Human Development and Disability at the National Center on Birth Defects and Developmental Disabilities. Justin’s colleagues put an emphasis on making him feel comfortable and respected as a member of a diverse and productive workforce. They welcomed Justin’s diversity, positively contributing to his overall health.

The mission of the Division of Human Development and Disability is to lead public health in preventing disease and promoting equity in health and development of children and adults with or at risk for disabilities. One in two adults with disabilities does not get enough aerobic physical activity 1 , and for Justin, regular physical activity is important to help him combat potentially lethal blood clots due to a genetic blood clotting disorder that he has. Every working hour, Justin walks for a few minutes, stretches, or uses his desk cycle. Justin also participates in walking meetings, which he believes leads to more creative and productive meetings.

Stories such as Justin’s are reminders that employment and health are connected. CDC is proud to support National Disability Employment Awareness Month every October. The awareness month aims to educate about disability employment issues and celebrate the many and varied contributions of America’s workers with disabilities.

Suhana’s Story

Suhana Alam & Shahrine Khaled (sisters)

Suhana has a sister, Shahrine, who is older by 18 months. While Shahrine’s mother was pregnant with Suhana, their uncle came to town for a visit. During the visit, their uncle was quick to notice that Shahrine did not seem to be talking at an age appropriate level or respond when called upon. Shahrine would also turn up the volume on the television and radio when others could hear it without difficulty. Shahrine’s parents thought that her speech development and behavior were normal for a toddler, but thanks to the uncle expressing his concerns, the family soon took action. A hearing test found that Shahrine was hard of hearing.

Due to Shahrine’s diagnosis, Suhana received a hearing screening at birth and was found to be hard of hearing, as well. Had it not been for the concerns raised by the children’s uncle, not only would Shahrine’s hearing loss have possibly gone on longer without being detected, but Suhana would most likely not have had a hearing screening at birth.

As a result of their early diagnoses, Suhana and Shahrine’s parents were able to gain the knowledge they needed to make sure both of their children could reach their full potential in life. They had access to early services from a team of physicians, speech therapists, counselors, and teachers.

Suhana credits her parents for her own successes, saying that she couldn’t have made it as far as she has without their support and patience. Today, Suhana is employed at the Centers for Disease Control and Prevention (CDC) as an epidemiologist with the agency’s Early Hearing Detection and Intervention (EHDI) program. All children who are deaf or hard of hearing receive critical services they need as a result of the EHDI program, which funds the development of data systems and provides technical assistance to help improve screening, diagnosis and early intervention for these infants. When children who are deaf or hard of hearing receive services early, they are more likely to reach their full potential and live a healthy, productive adult life.

CDC is proud to support National Disability Employment Awareness Month every October. The goals of the awareness month are to educate the public about disability employment issues and celebrate the many and varied contributions of America’s workers with disabilities.

  • Centers for Disease Control and Prevention. Vital Signs. [updated 2014 May 6; cited 2014 October 10] Available from: https://www.cdc.gov/vitalsigns/disabilities/

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Case study on the effects of a disability inclusive mindset in a large biotechnology company

Journal of Work-Applied Management

ISSN : 2205-2062

Article publication date: 3 September 2021

Issue publication date: 5 April 2022

Employers increasingly seek a competitive advantage through inclusive hiring practices and recruitment of persons with disabilities. Early research indicates when employers consider individuals for their strengths rather than solely for their needs, the organization prospers. However, details about how companies pursue a disability inclusive workplace and the effect of those efforts are poorly understood.

Design/methodology/approach

An inductive qualitative case study approach was utilized to understand one biotechnology corporation and their approach to recruiting, hiring, and retaining employees with disabilities. Individual and focus group interviews were conducted.

Results suggest that when the company lives its mission around wellness and inclusivity, they benefit from working with and learning from a range of perspectives, furthering their growth. Placing equal emphasis on hiring a diverse workforce and prioritizing supports and wellness practices lead to greater productivity and innovation.

Practical implications

This study illustrates how one company successfully recruits and hires persons with disabilities, resulting in benefits to their financial bottom line and to the organizational culture.

Originality/value

This paper offers insights for other companies intentionally hiring persons with disabilities, providing accommodations in the workplace, and creating an organizational culture where all employees feel valued and supported. These steps have a direct impact on employee engagement, productivity, and retention.

  • Diversity initiative
  • Inclusivity
  • Recruitment
  • Employees with disabilities

Ochrach, C. , Thomas, K. , Phillips, B. , Mpofu, N. , Tansey, T. and Castillo, S. (2022), "Case study on the effects of a disability inclusive mindset in a large biotechnology company", Journal of Work-Applied Management , Vol. 14 No. 1, pp. 113-125. https://doi.org/10.1108/JWAM-06-2021-0045

Emerald Publishing Limited

Copyright © 2021, Chase Ochrach, Kathryn Thomas, Brian Phillips, Ngonidzashe Mpofu, Tim Tansey and Stacie Castillo

Published in Journal of Work-Applied Management . Published by Emerald Publishing Limited. This article is published under the Creative Commons Attribution (CC BY 4.0) licence. Anyone may reproduce, distribute, translate and create derivative works of this article (for both commercial and non-commercial purposes), subject to full attribution to the original publication and authors. The full terms of this licence may be seen at http://creativecommons.org/licences/by/4.0/legalcode

Introduction

Employers increasingly recognize the benefits to productivity and organizational culture resulting from hiring persons with disabilities (PWDs) ( Lindsay et al. , 2018 ). Approximately 26% of people in the United States live with one or more of six functional types of disability, including cognitive, hearing, mobility, vision, self-care or independent living-related ( Centers for Disease Control and Prevention, 2018 ). Representing just over 25% of the US population, PWDs compose a large and valuable pool of current and potential members of the US workforce. However, PWDs continue to face challenges finding gainful employment in the United States, such that PWDs have an unemployment rate more than twice that of people without a disability ( US Bureau of Labor Statistics, 2020 ).

This lack of representation signals a significant problem of missed opportunity, as disability-inclusive hiring practices have been associated with improved productivity at the employee and organizational level ( Tompa et al. , 2021 ). One potential method of increasing rates of employment for PWDs is by increasing companies' awareness of the how much PWDs can contribute to the workforce, particularly in companies that maintain a disability-inclusive mindset ( Lindsay et al. , 2018 ). Companies with a disability-inclusive mindset go beyond maintaining the minimum legal requirement of anti-discrimination laws to create a disability-inclusive culture in all their thinking, policies, and operations. Such companies proactively focus on making the necessary changes needed to identify and remove barriers to full workplace participation for PWDs, including the removal of physical, communication, and attitudinal barriers ( CDC, 2020 ). This kind of mindset is represented by the concept of customized employment, which encourages organizations to customize the relationship between employee and employer based on the individual strengths and needs of both parties ( Inge, 2006 ). Despite several studies demonstrating the benefits of an inclusive culture and workforce at the individual, organizational, and societal level ( Tompa et al. , 2021 ) a specific roadmap for implementing this type of corporate culture remains elusive.

According to Weick's (1979 ) organizational information theory, people in organizations play active roles as creators of their environment through interpretation of information on a systemic level. Specifically, Weick (1979) emphasized the importance a company engaging in ongoing sensemaking, which is the process of rendering meaning from experience and constructing order out of disorder ( Patriotta, 2016 ). Within a company, sensemaking is a reciprocal relationship, such that individuals both create and are influenced by their organizational environment ( Weick, 1979 ). By focusing on communication from both top-down and bottom-up perspectives within a company, sensemaking provides a method of promoting disability-inclusive mindsets through centralized communication and information processing within a company ( Glynn and Watkiss, 2020 ; Weick, 1979 ). Weick conceptualizes sensemaking as central to organizing around a common mission and goal ( Weick, 2005 ). This theory is utilized in the current study by highlighting how a common organizational mission can allow employees across departments to make sense of their role in the company and of the company's role in the community. By engaging in the sensemaking process, leaders of companies can create a disability-inclusive mindset that influences the company culture on all levels to remove barriers and promote inclusive policy and culture for the hiring and retention of PWDs. Weick's theory applies to this case in that the way the organization and its members make sense and meaning of their work through identifying with the organization's inclusive mission and commitment to diversity. Previous studies have applied Weick's theory to various aspects of organization and management ( Tsoukas et al. , 2020 ), including process research ( Langley et al. , 2013 ) and organizational cognition ( Eden and Spender, 1998 ), among others. We extend findings from these and other previous studies to understand how sensemaking as a process furthers mission-based practices centered on diversity and inclusion.

Companies are increasingly moving to appreciate disability inclusion as a valuable contributor to diversity in the workplace ( Gilbride, et al. , 2003 ; Padkapayeva et al. , 2017 ). Research has revealed that companies identify several benefits to employing PWDs, including an expanded hiring pool, positive psychosocial impacts of retention of PWDs on employees with or without disabilities, and increased diversity of the workplace ( CDC, 2020 ; Lindsay et al. , 2018 ). By modifying recruitment and retention strategies, developing disability inclusion mediations, personalizing workplace and workspace modifications for PWDs, and matching the needs and skills of PWDs with the needs of the company, company leadership and human resources (HR) professionals can create disability inclusive mindsets by creating positive social attitudes regarding hiring PWDs ( Gilbride et al. , 2003 ; Padkapayeva et al. , 2017 ).

Research has also suggested that employee job fit, company culture, and previous employer experience with hiring PWDs all increase recruitment and retention of PWDs, which in turn shapes future HR hiring practices and the assumption of inclusive attitudes and perspectives company-wide ( Gilbride et al. , 2003 ). This aligns with findings that companies that reflect on their own practices, learn from their past organizational choices, and adapt to the internal and external environment are more sustainable in the long-term ( Fam et al. , 2017 ; Fergusson et al. , 2020 ). Additionally, HR employees with a higher degree of social awareness can increase the pace at which PWDs are recruited as well as the pace at which exposure-based disability-inclusive mindsets are encouraged in the workplace ( Chan et al. , 2010 ). This is especially important considering the growing centrality of social consciousness in what attracts new employees to work for organizations, underscoring the overall sustainability of that organization ( Brockhaus et al. , 2017 ; Rimanoczy and Pearson, 2010 ). Employing PWDs tends to decrease employer misconceptions, such as the idea that PWDs are not seeking work or are not qualified for company positions ( Bonaccio et al., 2020 ). Employing PWDs has been shown to increase future hiring and retention of job applicants with disabilities resulting in increased integration of workers with disabilities, development of disability-inclusive workplaces, and more sustainable futures for employees and organizations ( Bonaccio et al. , 2020 ; Fergusson et al. , 2020 ). These and other recent studies illustrate the unique benefits to hiring persons with disabilities, yet few offer a specific roadmap for how to actively recruit and hire PWDs and provide individualized accommodations to allow them, and the organization as a whole, to be successful. The current paper attempts to offer tangible suggestions through the illustration of one mid-sized company's successful implementation of a disability-inclusive mission and practices.

This paper is structured as follows. The first section outlines the methods used in this study, which is an inductive case study of one company's approach to hiring and retainment of PWDs. The organization and its specific subdivisions involved in the recruitment, hiring, and retainment of PWDs are described. The results of the study are then outlined, highlighting the company's mission and values, the actual inclusivity practices employed, and the impacts of these practices. The next section of the paper discusses the main findings of the study and connects those findings to existing research on PWDs in the workplace and general organizational culture. In this study, it was found that recruiting, hiring, and supporting PWDs in the workplace resulted in more workplace diversity, a willingness to provide accommodations for all employees, positive corporate climate, and increased productivity. Thus, this paper contributes evidence in support of the positive impacts of initiatives for hiring PWDs on employees, including PWDs, as well as the organization as a whole.

The purpose of this study was to implement an in-depth case study of a biotechnology company that has expressed commitment to inclusive hiring and retainment and a clear recognition of the company-wide benefits of hiring PWDs. We hoped to understand more about the company's mission and values and how these values translate into policy and action that supports hiring, retaining, and supporting all employees, including PWDs. This study was guided by the following questions: (1) What are the overarching attitudes, values, and approaches taken by this company in their efforts to be inclusive and diverse? And, (2) How does this company extend their message of wellbeing and support throughout all levels and departments of the company?

Given the formative nature of this investigation, we used a qualitative case study design that allowed for exploration of events or phenomena from multiple sources, with the purpose of looking into the unique experience of the people's lives and interactions with the environment ( Corbin and Strauss, 2015 ). This inductive qualitative design allowed for an open evaluation of the complexities and considerations involved in recruiting, hiring, supporting and retaining PWDs through in-depth interviews with multiple staff members at different levels within the company ( Maxwell, 1996 ). Interviews and focus groups were utilized to gain an open, in-depth understanding of employees' beliefs and experiences which was essential to informing our qualitative inquiry ( Gill et al. , 2008 ). As this investigation is exploratory in nature and our aim is to place greatest emphasis on the voices of our participants, a qualitative approach was necessary ( Miles and Huberman, 1994 ). The research team involved in data collection and analysis was comprised of six rehabilitation psychology faculty and doctoral students across three universities in the United States. Team members discussed potential biases prior to engaging in data collection and again before completing the analysis to reduce the potential for biases to influence the results.

Organization

The subject of this study is a large biotechnology company centralized in the Midwest. This company has been recognized as a Great Place to Work-Certified™ company, meaning they have been independently evaluated by the third party and recognized for having a positive workplace culture.

Organizational structure

This biotechnology company was described as using a Matrix Organization style where managerial teams spanned different units within the company ( Galbraith, 1971 ). The HR director noted this as key to maintaining priority on employee retention across all units. Part of the company's success in supporting and accommodating their employees was attributed to the division of responsibility within the company. Rather than processing all accommodations requests through a general HR team, their approach involved multiple specialized teams working together to recruit and retain employees. These included teams focused on (1) Recruitment, (2) Wellness, (3) Leaves and Accommodations, (4) Business Partners, and until recently (5) Security, which aligned under another unit in the organization.

The Leaves and Accommodations team has a lead role in processing accommodation requests while also ensuring that all employees and teams are aware of the potential for accommodations and how to use them. As one employee described, “I did not know until I received that initial email that we do have the entire accommodations team. They can reach out if you need anything.” The Business Partners act as the HR representatives across each unit in the company (e.g., the clinical lab). Business Partners were said by the HR director to play a key role in informing the HR team of needs within a particular unit while also ensuring that the company culture, priorities, and values extends to each unit. The Security team, although no longer part of HR, continue to fill several roles in the company, including acting as first responder for physical and mental health needs. These teams do not want the onus to always be on employees but seek to preemptively act in providing support by assessing potential problems within the company's various departments and teams.

Researchers worked with state employment agencies to identify companies with a reputation for inclusive disability hiring. Once identified as a company of interest, the research team worked closely with leadership from the biotechnology company to organize a site visit and to conduct interviews and focus groups. Prior to the site visit, the research team requested access to any written information, forms, or documents relevant to their disability efforts (e.g., company policies). Key personnel were also asked to provide a few written answers regarding the implementation of practices and policies related to their disability initiative. These were reviewed by the research team prior to the site visit in order to allow for better understanding of company activities prior to conducting interviews and focus groups. Researchers met on the day of the site visit to discuss potential biases and strategize how these biases could be minimized. The present study consisted of interviews with the director of human resources (HR) as well as members of the teams responsible for recruiting and for providing accommodations. A focus group was held with four direct-line supervisors and another with seven current employees, some of whom identified as having a disability that significantly impacted their work. All interviews were conducted in person at the company headquarters in the Midwest. Interviews and focus groups were complimented by information obtained through on-site observation, company policies and other written materials, the company website, and a climate survey described in the measures section below. A tour of the facility with an emphasis on any disability-related environmental adjustments, modifications, or supports helped inform data collection and analysis. The interviews and site tour led to the collection of more written policies and procedures that were added to the materials for analysis.

Focus groups and interviews ranged from 20 to 90 min in length. All interviews and focus groups were completed with two members of the research team present, serving to reduce to the possibility of interviewer bias while also enriching the data collection process with multiple perspectives. Audio recordings of all interviews and focus groups were later transcribed for analysis. Approval from the university's Institutional Review Board was also obtained to conduct this study with human subjects, and informed consent was obtained from all participants.

In addition to the on-site observations of the research team, a climate and policy checklist was used to assess the different disability-related aspects of the company during the post-site visit analysis of data. This checklist consisted of 70 disability-related policies or practices that were marked as being present or not present in the company. The semi-structured interviews and focus groups conducted on-site included primarily open-ended questions addressing the recruitment, hiring, integrating, and retaining workers with disabilities. The interviewees were asked to reflect on the company's practices and policies that were intended to create an inclusive environment for workers with disabilities and the results of these efforts.

Data analysis

All data sources were reviewed and coded by two coders before coming to consensus on the major themes and insights. Interview and focus group transcripts were read by each coder initially and data were categorized into practical and mindset themes. Further categories were determined by grouping data into subthemes, including a focus on inclusive practice, supportive climate, emphasis on retainment, and being mission driven. In the event of a disagreement between two coders, a third coder was included to discuss the item until an agreement was reached. Once created, the coding and narrative of the case study were brought to the larger research team for a community-based approach to refining and improving the accuracy of the case study.

This case study focuses on the inclusive hiring and retention practices of a large biotechnology company and the perceived impact of these efforts. In contrast to many other disability diversity case studies, this was not focused on a disability program but rather on capturing a company culture focused on seeking to make disability inclusivity part of all that they do. Results emerged from data collected over several months of 2019 and include analysis across individual and group interviews as well as on-site observation, the climate survey, and written policies (e.g. employee handbook, Autism Workforce guide). Results are broken down into the following categories: (1) Company Mission and Mindset, (2) Disability Inclusive Practices, which include both hiring and retention practices, and (3) Impact of Inclusive Practices. We proceed with a review of each category and their domains.

Company Mission and Mindset

An overarching theme noted throughout the interviews, whether senior management or recent hire to work in the lab, was the sense of the company's value-driven mission. An internal document describing the company Wellness program provided a Vision Statement that captures the ethos of their mission: “We believe our employees are our most valuable resource and through educating and encouraging the health and well-being of our employees, we in turn can achieve a higher level of patient care.” Throughout every interview and every evaluation of the company's organizational documentation and structure, this mission-driven focus emerged. As a member of the Leaves and Accommodations team stated, “We live our mission statement here, whereas other companies have a mission statement. And it's getting everyone on board from top down to have an environment of support.” Multiple members of the management team noted that this sense of mission did not happen by accident or stem from policy alone but was the result of embedding themselves within departments and consistently communicating those core values. Of their role, one manager stated, “We're out there being that kind of culture keeper.”

The first question a lot of companies will ask is, “Are we legally required to do this?” Which is a fine question. It's a valid question because you want to make sure that you're doing everything legally. But I feel like [company's] first question, because we already know we're in legal compliance across the board for Leaves and Accommodations is, “Why not?” and “What can we do?”
I think it starts with that commitment that we want to be an inclusive workforce, but you cannot always anticipate what that is going to mean for the next person who walks through your door. I think if you're coming at it with that yes mindset … You know if you start there, you can usually find a way to make it work.
You're not asking all of your employees to fit one exact requirement, once you're thinking, “What do they need?” and “How do they learn?” … just the mindset of how to help them be successful here, “What does that mean for them?” That's a real shift from, “I'm the boss, and this is how it works here.”

Disability Inclusive Practices

The mission and mindset of the company produced a number of inclusive practices that could be categorized into hiring, retention or some combination of the two.

Inclusive hiring practices

The director of HR spoke to the company's consideration of community in shaping their hiring practices and performance saying, “We look for partnerships with different organizations, both because we want to be a good partner and because of the organization's being really good conduits for people looking for work.” Another manager emphasized the importance they place on partnering with specific government and non-profit agencies aimed at improving the education and employment of diverse members of the local community and organizations in the area.

Speaking to the inclusive mindset that fuels this biotechnology company, an HR manager spoke of how they work with applicants saying, “whether there's a disability or not, our team approaches these interviews with the same level of fairness and equality. And I think that's become just part of the [company's] DNA.” Part of this DNA, or inclusive mindset, was noted to stem from their resources to work with a diverse workforce. The HR manager continued by saying applicants with disabilities “do not even phase our hiring team now because we are so used to the support we get from our Leaves and Accommodation team.”

Inclusive retention practices

The emphasis on retaining employees was consistent across all collected information. Multiple HR management spoke of viewing employees as being in long-term careers when hiring on with the company. Employees seem to get the message with one stating, “We heard management talk about wanting to create careers,” in contrast to what the employee described experiencing in other companies as being used for a couple of years. Two methods employed for fostering this career mentality were supporting employees in pursuit of upward movement and facilitating employee engagement within the company. Leadership emphasized providing employees with what they need to be successful, including a change in position or environment when needed. An HR director reported the mutual benefit of this approach by saying, “I am a firm believer that culture and engagement of employees has a very positive effect on revenue, on your total growth as an organization. If we were constantly replacing people, that would be a big time and money sinkhole.” He concluded that recruiting for diversity and then “giving them the tools and the support to really be successful” benefits all.

Inclusive retention practices were often very individually based. One frontline supervisor said, “I do not have any accommodation that's exactly like the other. The [Leaves and Accommodation Team] really tailor to the individual.” A member of the Recruitment team emphasized the importance of getting the employee's perspective when addressing accommodation needs stating, “It might not be something that our team is familiar with, but we get familiar with it really quickly.”

creating a welcoming environment and teaching people what it’s like to work here … The first step is really that inclusive culture of teaching and recognizing that people are coming from different places and at different levels of their readiness in order to actually hit the floor for their job.

Regarding supervisor training, an HR director described the Family and Medical Leave Act (FMLA) and ADA training they provide to supervisors, with the comment that “We do not ask [supervisors] to understand all of the intricacies of it. What we do want them to understand through the training is to be receptive.” Multiple supervisors described the trainings with appreciation for their thoroughness and for the support that was available to them, as captured by the supervisor who stated, “There's [a training] for the inclusive workplace, which is wonderful training.” This supervisor continued, “The fact that they even do that is impressive to me.” It was noted across interviews that providing the trainings in multiple formats (audio-video, written, etc.) was appreciated by supervisors and employees with disabilities alike.

The company was noted for taking a proactive approach to accommodations as part of their retention efforts. One employee shared his experience saying, “Because I identified with a disability through the onboarding process, probably within a week or two from hire, I got an email saying, “Hey, you identified with a disability. Are there any accommodations that we can provide?” Another employee described their supervisor's approach to accommodations after having already been with the company, reporting, “When I started in the lab, I never knew how physical that was. It was actually my supervisor that pulled me aside and said, ‘You know, we have accommodations and we can help you through this.’”

Inclusivity as organizational identity: impact of Inclusive Practices

I would absolutely say that it’s a benefit … By recruiting a diverse population and then giving them the tools and the support to really be successful, that goes a really long way towards engagement and culture, and that certainly has direct impact on the bottom line.

Another manager talked of how providing employee accommodations according to their need improved performance and retention. A front-line supervisor spoke of an employee who was about to be terminated for poor performance. In one of the final meetings before termination, the employee disclosed a hidden disability that had been affecting their work performance. Accommodations were put in place and the employee retained their position through strong performance.

Through working with [PWDs], we've found some of the things that we offer would actually be good to offer to a broader population as well. If we are looking at different ways of learning, different ways of training, for instance, even if somebody has not self-identified as having a disability, we all learn differently … Personally, I think that it gives you a more open mindset, things that I had not considered before.
I think there's an effect on morale … We get a lot of really positive feedback about the diversity of our team. A lot of people who choose to work at [company], I find that a big driver behind their decision to work here is because they have a personal connection to our mission. They feel good about working for a company that offers these accommodations for their colleagues and coworkers. They can see people of different abilities working in different ways towards the same mission.

These positive perceptions often connected directly to job satisfaction and a desire to stay with the company. A front-line supervisor said, “I think it helps us retain the employees who truly want to be here … and helps us keep really talented people.” One employee with a disability stated that she is quick to tell her friends and acquaintances to work at this company. She continued, “If you're looking to improve your life, apply.” More seriously, another employee with a disability described being made fun of at her previous company and how refreshing it was to be able to trust that she would be treated respectfully at this biotechnology company. One of the strongest statements on the retention efforts of the company came from an employee who talked of switching from his partner's health insurance for the first time in years because of the stability he felt in his work. He stated with a tone of pride, “I'm actually going to be taking over the insurance because I feel comfortable here.”

Workplace challenges faced by PWDs result from the intersection of individual needs, societal structures, and employer initiatives, policies, and procedures that influence company culture ( Chan et al. , 2010 ). One way to minimize workplace experiences of discrimination and invalidation for PWDs is for companies to actively value diversity and inclusivity in mission, mindset, and policies through organizational sensemaking. By engaging in ongoing sensemaking, companies can allow for individuals to promote disability-inclusive mindsets by both creating and influencing their organizational environment ( Weick, 1979 ; Glynn and Watkiss, 2020 ). The company at the center of this study specifically organizes their work around the central mission of disability-inclusivity and overarching support and accommodations for all—a common mission through which, as was shared in interviews, employees make meaning of their work. As meaning-making is a human-driven process, this study illuminates how Weick's theory of organizational information can explain the practical implications of organizing a corporate culture around a common goal ( Tsoukas et al. , 2020 ). This approach recognizes PWDs as assets as companies provide them with the supports needed to be successful. Such efforts uplift the individual employee and the company-wide productivity and culture ( Lindsay et al. , 2018 ). This company offers a useful model for other companies looking to implement a disability-inclusive approach that values the contributions of all employees.

Organizational culture as a reciprocal process

Interview participants made it clear that this company values a sense of connectedness and reciprocal respect among team members. Weick (1979) suggests that organizations and those belonging to them experience a reciprocal relationship—that is, individuals both create and are influenced by their organizational environment through the process of sensemaking. This proposition suggests that general organizational attitudes (such as prioritizing inclusivity and diversity in the workplace) must be fed through both top-down and bottom-up pathways. Weick further suggests that the way members of an organization make sense of experiences informs organizational action in a recursive process. This sensemaking process is often equally cognitive and emotional ( Mikkelsen et al. , 2020 ) and can stretch from broad, company-wide search for meaning to the minutiae of even the language used by an organization ( Bakken and Hernes, 2006 ).

Using this framework, the company at the center of this study appears to make opportunistic sense of diversity, seeing PWDs as introducing unique skills, perspectives and talents to the company. This sensemaking process is likely driven both by a recognition of the overall productivity and economic benefits as well as employees' emotional investment in the value of working alongside and learning from diverse team members. The development of an organizational culture and mission is more recursive than linear where both meaning and action influence sensemaking and contribute to the ultimate climate ( Glynn and Watkiss, 2020 ). The company as a whole and the individual employees reciprocally influence each other in terms of company values, productivity, and inclusive culture. This organization clearly benefits from such symbolic interactionism, as interviews with employees and management revealed an unequivocal emphasis placed on supporting and being supported by employees with disabilities.

Dedication to morale and community

Staff and leaders both reported a felt sense of community and a dedication to elevating morale throughout this company. It seems that promoting a sense of connectedness and support fosters positive attitudes, productivity, and customer service for this mid-sized organization. Some researchers suggest that leaders can improve productivity, employee relations, and talent development when they align their actions with valuing a diverse workforce ( Hughes, 2016 ). Thus, fostering acceptance, support, and growth for diverse employees is fundamental to prosperous relationships internally and externally for the organization.

Previous findings suggest that high levels of cohesion among members of a group may predict performance ( Gammage et al. , 2001 ). Additional research suggests when a group agrees on the same organizational goals, they subsequently experience higher rates of group drive, cohesion, and productivity ( Greene, 1989 ). This is apparent in the current case, as interview participants reported feeling the congruence with the company goals of commitment to customer service and valuing and supporting team members.

How to replicate elsewhere

It's deciding as a company, “Are you going to be willing to go that much further for the employee to go above and beyond what the federal government is asking you to do?” But it is completely replicable if you desire that for your company.
I think it starts with that commitment to be an inclusive workforce … But you cannot always anticipate what that is going to mean (The next person who walks through your door, what might they need to be successful?). It is not necessarily something that I think every organization wants to do.

The HR director also encouraged companies to think about their employees in terms of their unique value rather than their ability to fit the model of the organizations' values. Overall, this biotechnology company's employees and administrators seemed optimistic about the possibility of their model, philosophy, and approach to hiring and recruitment to be replicated elsewhere. This approach becomes possible through a stance of curiosity, a willingness to learn, and approaching each potential employee as having a unique skillset and worldview.

Conclusions and implications

Intentionally recruiting, hiring, and retaining PWDs in the workplace increases the diversity of perspectives in the workplace and positively impacts the company bottom line;

Successful outcomes from a company-wide diversity and inclusivity initiative results from both top-down and bottom-up implementational commitment; and

Increasing corporate diversity through this kind of initiative has a positive effect on employee attitudes and engagement and the overall corporate climate.

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Acknowledgements

Preparation of this manuscript was supported in part by the National Institute on Disability, Independent Living, and Rehabilitation Research through Grant # HHS-2016-ACL-NIDILRR-RT-0138 to Virginia Commonwealth University, Rehabilitation Research and Training Center on Employer Practices. The opinions expressed herein do not necessarily reflect the endorsement or position of the U.S. Department of Health and Human Services.

Corresponding author

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Coercive Control

case study on physical disability

Case study 4: Maria

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Download the whole case study as a PDF file (515KB)

Maria is 24. She had a diving accident when she was 20, and now uses a wheelchair due to a physical disability. She has a 15-month old daughter, Sophia, with her long term partner, Graham. Sophia was recently subject to a referral to children’s services, who have contacted Adult Social Care to see whether they might be able to provide support to Maria. Graham is reported to not be happy about this.

This case study considers issues around survivors with physical disabilities; multiagency working, adult safeguarding and child protection; and support to EU migrants.

When you have looked at the materials for the case study and considered these topics, you can use the critical reflection tool and the action planning tool to consider your own practice.

Case details

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Maria, 24, lives with her 15 month old daughter, Sophia, and Sophia’s biological father, Graham (34). Maria came to live in London from Greece at the age of 18. Maria’s teenage years were difficult as her father was emotionally and physically abusive towards her and her mother. Maria took a business studies course and was involved in the University Diving club. She met Graham at the club and they have been together ever since.

When she was 20 equipment failure during one of the dives caused Maria to sustain a spinal cord injury. Maria was rehabilitated from hospital. With professional support she was able to regain much of her independence although she suffers from chronic pain as a result of the injury, and anxiety and depression related to this. She uses a wheelchair and was allocated an accessible ground floor flat owned by a local housing association. Maria was advised that giving birth could further disable her but she was determined to have her baby.

Graham moved into Maria’s flat when she told him that she was pregnant. Shortly after this she cancelled her contract with the domiciliary care agency. She said that Graham was able to do everything that she and the baby would need. Graham took time off work to be present at every ante-natal class. He works full time at a race track. He sometimes has to work late and he doesn’t always know until he gets there how long the shift will be.

There has been a referral to adult services from children’s services. Children’s services have been alerted to concerns raised by health staff about Sophia’s lack of development, low weight and being frozen in her emotional responses. Maria is reported to seem tired, wary and dishevelled and potentially in need of social care support to be an effective parent. The housing association had had complaints from neighbours about the family’s dogs’ waste covering the shared ‘play’ area and that they seemed dangerous. Graham is reported to be offended at the idea that they are not coping as he now manages the household as well as working.

In this section are two downloadable PDFs – one is a partly completed assessment form related to this case study, and another is an example of what a completed form could look like.

Suggested exercise

Download the partly completed assessment as a PDF file (493KB)

Download the partly completed assessment as a PDF file (493KB)

Download the completed assessment as a PDF file (497KB)

Download the completed assessment as a PDF file (497KB)

Use the partly completed assessment form:

  • What actions would you discuss with Maria to ensure her immediate and longer term safety?
  • What precautions would you need to take to avoid putting her at higher risk of harm?
  • What is your analysis of the situation? Is coercive control occurring? What is the evidence of this?
  • What is your conclusion?

Download the resource as a PDF file (155KB)

Download the blank DASH_RIC as a Word .doc file (226KB)

The purpose of the DASH risk checklist is to give a consistent and simple tool for practitioners who work with adult victims of domestic abuse in order to help them identify those who are at high risk of harm and whose cases should be referred to a MARAC meeting in order to manage their risk. If you are concerned about risk to a child or children, Safe Lives recommend that you should make a referral to ensure that a full assessment of their safety and welfare is made.

There are two downloads on this page.

One shows a blank DASH risk checklist, with quick start guidance from Safe Lives. The key point is to remember that your professional judgement is key in making a decision about risk; a tool can help, but the score it comes out with is not definitive.

This is especially relevant when working with people with care and support needs, for whom some of the questions may not be relevant.

word icon

Download the case study DASH-RIC as a PDF file (206KB)

The other shows an example of a completed DASH relating to this case study, for you to critique and appraise.

Suggested exercise:

  • Read the case details and full assessment document for this case study.
  • Using the information contained, fill out a blank DASH risk assessment tool.
  • Discuss how you found it; did you have all the required information? Would you be able to get all the required information in practice? Would you make a referral to MARAC?

This section picks out three main topics from the case study featured. For Maria’s case study, the topics include:

Working with survivors with physical disabilities

Multi-agency working, adult safeguarding and child protection, support to eu migrants.

A selection of references, tools and further reading for each topic is below.

Studies focussing on domestic violence and the experiences of women with physical disabilities draw from survivors’ narratives that illustrate increased vulnerability to coercion and control:

‘ I mean, what normal wife would have all these professionals coming to the house and putting their hands all over her? All in the line of duty, but still—my body was for him alone . . .’ Bethany, a 36-year-old woman with multiple sclerosis, felt that her disability was an imposition on her husband; as a result, she felt obligated to sacrifice her home-based physical, speech, and occupational therapies … Bethany could not heal her disabled body; instead, she tried to limit its influence by surrendering her medical care. However, the abuse only escalated.’ (Rich, 2014:6) .

Findings from research:

People with care and support needs are at higher risk of domestic abuse and other forms of abuse:

  • Disabled women are twice as likely to experience violence as non-disabled women. (Hague et al, 2008)
  • Half of disabled women may have experienced domestic violence. The report criticises the ‘serious lack of research in this country on the experiences of disabled women survivors of domestic violence’ (Hague et al, 2007)

Less service provision:

  • Domestic abuse services – are few and far between, with scarce resources whilst awareness of disability is often inadequate
  • Disability services – domestic abuse is often not seen as an issue with a lack of training & information about domestic violence amongst staff compounded by a similar lack of resources. (Hague et al, 2008)

In conclusion, people with care and support needs are more vulnerable to domestic (& other forms of) abuse AND less likely to have access to the services and the protection that may be needed.

Violence and abuse – what can I do? Information for disabled or Deaf women : http://women-disabilities-violence.humanrights.at/sites/default/files/reports/gb_brochure_for_disabled_women_and_deaf_women.pdf

See tools, below:

  • Tool 1: Safety Planning checklist for professionals
  • Overarching tool on Making Safe Enquiries.  
  • Case study 4 Tool 2: Social Work Capabilities in Working with Disabled Women Survivors

Home Office Statutory Guidance highlights perpetrator behaviour which preys on the victim’s fear of losing their child and using such threats as a means of coercion and control:

‘A victim may be fearful of their children being taken away if they make a report and the perpetrator may have tried to convince them that this is the case ‘  (point 23: Home Office Guidance) .

Because of their condition mothers with physical disabilities and/or learning disabilities may be particularly fearful of losing their child to the abusing partner or of losing their child into the care of the local authority. In such instances the perpetrator, as carer of both the adult and child/children, can use coercion to heighten this fear. Communication between Children’s and Adult services is crucial when situations of coercion and control involve elements of both child and adult safeguarding, requiring both adult and child assessments. Here is one example of a joint policy on working with adults and children experiencing domestic abuse:

Working_Together_To_Safeguard_Adults_and_Children_from_Domestic_Abuse.pdf

In seeking to establish robust and regular channels of communication between agencies, Professor Marianne Hester devised the Three Planet Model which highlights the need to align the Domestic Violence planet (where the perpetrator’s behaviour is considered a crime and therefore involves criminal justice professionals), the Child Protection planet (which resides in the public and family law arena involving statutory child protection professionals and NSPCC), and the Child Contact planet (the private law arena involving CAFCASS professionals who consider the child’s right to contact with both parent/perpetrator and parent/DV survivor):

http://www.bris.ac.uk/news/2009/6703.html

Adding a further planet to the constellation – the ‘Adult Social Care’ planet – highlights the need for additional communication channels between Children’s and Adult services and Adult services and Adult safeguarding professionals:

  • Tool 3: The Four Planet model
  • Tool 4: Family Model for Assessment
  • See also: Topics and tools from Case study 5 (Betty) relating to using MARACs.

It is important to look at other structural issues that put people at risk alongside consideration of their care and support needs (see Intersectionality topic, case study 1 ). A number of reports signal a rise in hate crime towards EU migrants including attacks against their homes which, in their current situation, Maria and Sophia could find it difficult to escape from or to seek help:

Corcoran and Smith (2016) Hate Crime, England and Wales 2015/16

https://www.gov.uk/government/uploads/system/uploads/attachment_data/file/559319/hate-crime-1516-hosb1116.pdf

The increase in hate crime in England and Wales after the EU referendum vote was reported in figures published by the National Police Chiefs’ Council (Oct, 2016) showing a 49% rise in hate crime incidents to 1,863 in the last week in July 2016 when compared with the previous year. The week after saw a record 58% increase in recorded incidents whilst later data showed that the increase in hate crime continued, although the level of increase then dipped.

In September 2016 The Guardian reported:

‘Sir Bernard Hogan-Howe, the Metropolitan police commissioner, told a hearing at London’s City Hall in September 2016 that hate crime was showing signs of decreasing after the sharp rise in June and July, but it had still not returned to pre-referendum levels… He added: ‘The absolute numbers are low, but we think it is massively under-reported [crime]. Sadly, people don’t tell us about the harassment and the abuse that we know will go on out there.’

Sophie Linden, London’s deputy mayor for policing, who was hosting the hearing, said she was still getting daily reports about hate crime in the capital. ‘It is worrying that it does not appear to have gone back down to pre-referendum levels.’

A survey by the Guardian found that  European embassies in Britain had logged dozens of incidents of suspected hate crime  and abuse against their citizens since the referendum:

https://www.theguardian.com/society/2016/sep/28/hate-crime-horrible-spike-brexit-vote-metropolitan-police

  • Tool 1: Checklist – Developing safety plans with adults with care and support needs experiencing domestic abuse

Professionals advising adults with care and support needs (referred to here as ‘adults’) and managing safety plans should follow the checklist of actions.

Tool 2: Social work capabilities in working with disabled women survivors

This tool is based on the recommendations drawn from disabled women’s suggestions for improvement in practice in Hague et al’s paper ‘Making the Links’ (2014: 26).

We have mapped the women’s seven suggestions to the domains of the Professional Capabilities Framework, and added our own suggestions on domains 6 and 9.

Tool 3: The four planets model

Based on Marianne Hester’s Three Planets model; with the addition of a fourth ‘planet’, Adult Social Care.

Consider all the different agencies who might be involved in a case like Maria’s.

Tool 4: Family model for assessment

You can use this tool to help you consider the whole family in an assessment or review.

Tool 1: Checklist - Developing safety plans with adults with care and support needs experiencing domestic abuse

Download the whole case study as a PDF file

Download the tool as a PDF file

  Professionals advising adults with care and support needs (referred to here as ‘adults’) and managing safety plans should:

  • Establish how the survivor can be contacted safely and seek their permission to pass this information onto all professionals in contact with them
  • Establish the location of the perpetrator, if separated from the adult
  • Establish if the perpetrator is the adult’s carer.
  • Obtain the survivor’s views about the level of risk
  • Determine methods to facilitate any existing child contact arrangements safely
  • Ensure that the survivor has the means to summon help in an emergency
  • Identify where a survivor might go if they have to leave quickly and what they will take with them
  • Encourage victims to report all incidents to the police or other organisations that will record the incident and maintain accurate and detailed records
  • With their permission, refer the survivor to organisations that provide specialist support and advice
  • Refer the case and details of the safety plan to a Multi-Agency Risk Assessment Conference (MARAC) in cases identified as high risk
  • Encourage the victim to seek professional advice about legal and financial matters and child contact
  • Inform survivors of criminal or civil law provisions which may be applicable, e.g., restraining or non-molestation orders
  • Make survivors aware of the potential pitfalls of social media use, e.g. identifying current location through status updates/geo-location systems on smartphones which automatically update to publicly display current location
  • Consider that victims with insecure immigration status, from minority ethnic communities, victims with disabilities or from socially isolated communities may fear contact with the police
  • Where appropriate and safe to do so, involve the survivors’ friends, family or neighbours in the safety planning process where appropriate and safe to do so
  • With permission, involve others professionals in the plan such as support workers, GPs, drug and alcohol services, mental health workers, schools etc.
  • Encourage the survivor to keep a diary (where you have established it is safe to do so).
  • Assess whether the adult has the mental capacity to make informed choices about how to protect themselves.
  • Consider coercive control and the new law. Consider if there is evidence of this – i.e. isolation, control, intimidation, financial abuse.
  • If you are aware that the adult is accessing other support services, consider who is offering specialised support for domestic abuse.
  • Be aware of safety and confidentiality particularly around sensitive documentation for the survivor.
  • Where the perpetrator is a caregiver, discuss how the survivor could continue to maintain their independence if they were to cease contact with the perpetrator.

people with disabilities in partner relationships

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Download the whole case study as a PDF file (577KB)

Download the tool as a PDF file (577KB)

Domain 1        Take advice from, and consult with, disabled women.

Domain 2        Take disabled women seriously and avoid being patronising.

Domain 3        Develop accessible services.

Domain 4        Do not threaten disabled women with institutionalisation if no refuge space is available. Develop good accessible alternative accommodation, both temporary and permanent, plus support to use it.

Domain 5        Be informed about disabled women’s needs.

Domain 6        Critically reflect on power relationships and intersectionality.

Domain 7        Provide accessible well-publicised domestic violence services (including refuge accommodation) that disabled women know about.

Domain 8        Develop disability equality schemes and reviews with input from disabled women.

Domain 9        Contribute to the learning of others who are working with disabled women survivors.

Hague, G et al (2008) Making The Links; disabled women and domestic violence . Bristol: Women’s Aid.

Download the whole case study as a PDF file (490KB)

Download the tool as a PDF file (490KB)

Below is an illustration of Marianne Hester’s Three Planets model; with the addition of a fourth ‘planet’, Adult Social Care.

What different perspectives and priorities do they bring?

You can use this tool when working with someone with care and support needs to discuss with them the agencies that can most usefully contribute.

Remember to use the principles of safe enquiry, and remember the limits of confidentiality and your responsibilities relating to child protection.

The Four Planet Model - click to view the image full-size

The Four Planet Model - click to view the image full-size

Download the family model for assessment as a PDF file (490KB)

Download the family model for assessment as a PDF file (490KB)

Image: Family model for assessment - click to view full size

Family model for assessment - click to view full size

Hague, Gill; Thiara Ravi K; Magowan Pauline; Mullender, Audrey (2008) Making the Links: Disabled women and domestic violence: Summary of findings and recommendations for good practice. Women’s Aid

Hague G Thiara R and Magowan P (2007) Disabled women and domestic violence: Making the links. An interim report for the Women’s Aid Federation of England . Women’s Aid

Rich, Karen (2014) My body came between us: accounts of partner-abuser women with physical disabilities. Journal of Women and Social Work , 1-16.

Woodin S, Shah S, Tsitsou L (2014) Access to specialised victim support services for women with disabilities who have experienced violence. University of Leeds. Available online:  http://women-disabilities-violence.humanrights.at/sites/default/files/reports/empirical_report_uk.pdf

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Working in Partnership with the Department Health

Physical disability, rehabilitation, and health promotion: a case study in Brazil

Affiliations.

  • 1 Association for Psychological Science, Washington DC, U.S.A.
  • 2 Universidade Estadual de Campinas, Campinas, Brasil.
  • PMID: 33886706
  • DOI: 10.1590/0102-311X00056520

Reflecting on the health promotion for people with physical impairments implies considering the specificities and meanings attributed to the life experience of each subject throughout their careers. As such, this study was designed to investigate the experience of a man with an acquired physical disability after an accident that damaged his spine. This injury caused a permanent inability to move his legs. It is a case study that used the life history technique to capture its experience. The participant was born in a rural context, and since he was a child, he had to work to help his family. At the age of 16, he started working as a chainsaw operator, and at 24, a tree fell on his back, breaking his spine and leaving him without the movements and sensitivities of his legs. The trauma experienced by the participant caused profound changes in his life. The results demonstrated that the participant's experience does not align with the traditional experiences found in the literature in general, as the concept of biographical rupture. Sport was a vital collaboration mechanism in the rehabilitation process. Concerning health and illness, there are many spaces in the subject's experience that collaborate to expand the compression on health promotion paths. The need to depathologize the gaze on the subject's conditions is highlighted so that the understanding of health promotion processes can be amplified or reconsidered.

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Case studies on disability and inclusion.

A child with disabilities

To document UNICEF’s work on disability and inclusion in Europe and Central Asia region, UNICEF Regional Office for Europe and Central Asia has developed a set of five case studies.

UNICEF takes a comprehensive approach to inclusion, working to ensure that all children have access to vital services and opportunities. When UNICEF speaks about “inclusion” this encompasses children with and without disabilities, marginalized and vulnerable children, and children from minority and hard-to-reach groups.

The case studies have a specific focus on children with disabilities and their families. However, many of the highlighted initiatives are designed for broad inclusion and benefit all children. In particular, this case study, covers such topics as: Inclusive Preschool, Assistive Technologies (AT), Early Childhood intervention (ECI), Deinstitutionalisation (DI).

Case studies

Case study 1

Case study 1: “Open source AAC in the ECA Region”

Files available for download (1).

Case study 2

Case study 2: “Inclusive Preschool in Bulgaria”

Case study 3

Case study 3: “Assistive technology in Armenia"

Case study 4

Case study 4: “Early childhood intervention in the ECA region”

Case study 5

Case study 5: “Deinstitutionalization in the ECA region”

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With Severe and Multiple Disabilities in Inclusive Physical Education : A Multiple Case Study

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The purpose of this study was to determine the effect of peer-mediated and teacher – directed instructions on the activity engagement time of students with severe and multiple disabilities (SMD). The data were obtained during inclusive general physical education sessions under two kinds of instructional support conditions for three students with SMD: (a) teacher-directed, and (b) peer-mediated. Instructional behavior data showed that during peer-mediated support conditions the instructions provided by tutors were more frequent than instructions provided by teachers during teacher-directed conditions. Physical behavior data indicated that peer-mediated conditions resulted in similar levels of physical behaviors for all students with SMD when compared to teachersdirected conditions. Also, for all students with SMD the activity engagement time data was higher in conditions where peer tutors were involved.

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Maya

Maya is 22 years old and has a physical disability as a result of a spinal cord injury at birth. She uses a wheelchair and has used disability support services all her life.

Maya lives with her parents, but finds and chooses disability support services for herself. She would like to move into her own home in the future and will use the Disability Gateway to find the information she needs to make this transition.

“I’d like to move out of my family home soon, so information on housing, rights and equipment is what interests me at the moment,” says Maya.

“The Disability Gateway has dedicated areas of life where I can find information and connect to relevant services. It has links to practical services like equipment hire and wheelchair ramps, but also information about bigger issues like my rights as a tenant if I need to modify a rental property.”

Maya will soon graduate with a Bachelor of Social Work and is also looking at future job opportunities.

“Finding a job is the next big thing on my horizon so I’m interested in how the Disability Gateway can help me get a picture of what’s out there, the steps to employment and my rights as an employee.”

Describing her experience using the Disability Gateway website so far, accessibility and being able to find information on a broad range of topics are her favourite features.

“The accessibility of the Disability Gateway website stands out for me. There are different options for people with sight and hearing issues, and it’s easy to navigate. I don’t see that on many other websites,” she says.

“To me a gateway is something that gives you access to another place, and that’s what the Disability Gateway does: it’s an entry point to the world of disability services, for people with disability but also for people who support them and need to access services on their behalf – families, carers and guardians, and health professionals.

“A lot of this information is harder to find separately, so having links to all these different services in one place makes it much easier. If you want to find something, the Disability Gateway can take you to the right place.”

The Disability Gateway is an informative website where anybody can go to find disability services that are out there in Australia and more specifically you can go on to your state to find what’s there.

I would recommend the Disability Gateway to those that I know because the website has 10 different Areas of Life so I’m sure that they will be able to find something that might benefit them.

I think the Disability Gateway is beneficial to a whole lot of people. I know that family, friends, carers and even health care professionals would be able to find information and services that are out there.

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Maya’s story

An easy read case study.

  • Case Study - Maya DOCX [2.78 MB]
  • Case Study - Maya PDF [789.83 KB]

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What the data says about abortion in the U.S.

Pew Research Center has conducted many surveys about abortion over the years, providing a lens into Americans’ views on whether the procedure should be legal, among a host of other questions.

In a  Center survey  conducted nearly a year after the Supreme Court’s June 2022 decision that  ended the constitutional right to abortion , 62% of U.S. adults said the practice should be legal in all or most cases, while 36% said it should be illegal in all or most cases. Another survey conducted a few months before the decision showed that relatively few Americans take an absolutist view on the issue .

Find answers to common questions about abortion in America, based on data from the Centers for Disease Control and Prevention (CDC) and the Guttmacher Institute, which have tracked these patterns for several decades:

How many abortions are there in the U.S. each year?

How has the number of abortions in the u.s. changed over time, what is the abortion rate among women in the u.s. how has it changed over time, what are the most common types of abortion, how many abortion providers are there in the u.s., and how has that number changed, what percentage of abortions are for women who live in a different state from the abortion provider, what are the demographics of women who have had abortions, when during pregnancy do most abortions occur, how often are there medical complications from abortion.

This compilation of data on abortion in the United States draws mainly from two sources: the Centers for Disease Control and Prevention (CDC) and the Guttmacher Institute, both of which have regularly compiled national abortion data for approximately half a century, and which collect their data in different ways.

The CDC data that is highlighted in this post comes from the agency’s “abortion surveillance” reports, which have been published annually since 1974 (and which have included data from 1969). Its figures from 1973 through 1996 include data from all 50 states, the District of Columbia and New York City – 52 “reporting areas” in all. Since 1997, the CDC’s totals have lacked data from some states (most notably California) for the years that those states did not report data to the agency. The four reporting areas that did not submit data to the CDC in 2021 – California, Maryland, New Hampshire and New Jersey – accounted for approximately 25% of all legal induced abortions in the U.S. in 2020, according to Guttmacher’s data. Most states, though,  do  have data in the reports, and the figures for the vast majority of them came from each state’s central health agency, while for some states, the figures came from hospitals and other medical facilities.

Discussion of CDC abortion data involving women’s state of residence, marital status, race, ethnicity, age, abortion history and the number of previous live births excludes the low share of abortions where that information was not supplied. Read the methodology for the CDC’s latest abortion surveillance report , which includes data from 2021, for more details. Previous reports can be found at  stacks.cdc.gov  by entering “abortion surveillance” into the search box.

For the numbers of deaths caused by induced abortions in 1963 and 1965, this analysis looks at reports by the then-U.S. Department of Health, Education and Welfare, a precursor to the Department of Health and Human Services. In computing those figures, we excluded abortions listed in the report under the categories “spontaneous or unspecified” or as “other.” (“Spontaneous abortion” is another way of referring to miscarriages.)

Guttmacher data in this post comes from national surveys of abortion providers that Guttmacher has conducted 19 times since 1973. Guttmacher compiles its figures after contacting every known provider of abortions – clinics, hospitals and physicians’ offices – in the country. It uses questionnaires and health department data, and it provides estimates for abortion providers that don’t respond to its inquiries. (In 2020, the last year for which it has released data on the number of abortions in the U.S., it used estimates for 12% of abortions.) For most of the 2000s, Guttmacher has conducted these national surveys every three years, each time getting abortion data for the prior two years. For each interim year, Guttmacher has calculated estimates based on trends from its own figures and from other data.

The latest full summary of Guttmacher data came in the institute’s report titled “Abortion Incidence and Service Availability in the United States, 2020.” It includes figures for 2020 and 2019 and estimates for 2018. The report includes a methods section.

In addition, this post uses data from StatPearls, an online health care resource, on complications from abortion.

An exact answer is hard to come by. The CDC and the Guttmacher Institute have each tried to measure this for around half a century, but they use different methods and publish different figures.

The last year for which the CDC reported a yearly national total for abortions is 2021. It found there were 625,978 abortions in the District of Columbia and the 46 states with available data that year, up from 597,355 in those states and D.C. in 2020. The corresponding figure for 2019 was 607,720.

The last year for which Guttmacher reported a yearly national total was 2020. It said there were 930,160 abortions that year in all 50 states and the District of Columbia, compared with 916,460 in 2019.

  • How the CDC gets its data: It compiles figures that are voluntarily reported by states’ central health agencies, including separate figures for New York City and the District of Columbia. Its latest totals do not include figures from California, Maryland, New Hampshire or New Jersey, which did not report data to the CDC. ( Read the methodology from the latest CDC report .)
  • How Guttmacher gets its data: It compiles its figures after contacting every known abortion provider – clinics, hospitals and physicians’ offices – in the country. It uses questionnaires and health department data, then provides estimates for abortion providers that don’t respond. Guttmacher’s figures are higher than the CDC’s in part because they include data (and in some instances, estimates) from all 50 states. ( Read the institute’s latest full report and methodology .)

While the Guttmacher Institute supports abortion rights, its empirical data on abortions in the U.S. has been widely cited by  groups  and  publications  across the political spectrum, including by a  number of those  that  disagree with its positions .

These estimates from Guttmacher and the CDC are results of multiyear efforts to collect data on abortion across the U.S. Last year, Guttmacher also began publishing less precise estimates every few months , based on a much smaller sample of providers.

The figures reported by these organizations include only legal induced abortions conducted by clinics, hospitals or physicians’ offices, or those that make use of abortion pills dispensed from certified facilities such as clinics or physicians’ offices. They do not account for the use of abortion pills that were obtained  outside of clinical settings .

(Back to top)

A line chart showing the changing number of legal abortions in the U.S. since the 1970s.

The annual number of U.S. abortions rose for years after Roe v. Wade legalized the procedure in 1973, reaching its highest levels around the late 1980s and early 1990s, according to both the CDC and Guttmacher. Since then, abortions have generally decreased at what a CDC analysis called  “a slow yet steady pace.”

Guttmacher says the number of abortions occurring in the U.S. in 2020 was 40% lower than it was in 1991. According to the CDC, the number was 36% lower in 2021 than in 1991, looking just at the District of Columbia and the 46 states that reported both of those years.

(The corresponding line graph shows the long-term trend in the number of legal abortions reported by both organizations. To allow for consistent comparisons over time, the CDC figures in the chart have been adjusted to ensure that the same states are counted from one year to the next. Using that approach, the CDC figure for 2021 is 622,108 legal abortions.)

There have been occasional breaks in this long-term pattern of decline – during the middle of the first decade of the 2000s, and then again in the late 2010s. The CDC reported modest 1% and 2% increases in abortions in 2018 and 2019, and then, after a 2% decrease in 2020, a 5% increase in 2021. Guttmacher reported an 8% increase over the three-year period from 2017 to 2020.

As noted above, these figures do not include abortions that use pills obtained outside of clinical settings.

Guttmacher says that in 2020 there were 14.4 abortions in the U.S. per 1,000 women ages 15 to 44. Its data shows that the rate of abortions among women has generally been declining in the U.S. since 1981, when it reported there were 29.3 abortions per 1,000 women in that age range.

The CDC says that in 2021, there were 11.6 abortions in the U.S. per 1,000 women ages 15 to 44. (That figure excludes data from California, the District of Columbia, Maryland, New Hampshire and New Jersey.) Like Guttmacher’s data, the CDC’s figures also suggest a general decline in the abortion rate over time. In 1980, when the CDC reported on all 50 states and D.C., it said there were 25 abortions per 1,000 women ages 15 to 44.

That said, both Guttmacher and the CDC say there were slight increases in the rate of abortions during the late 2010s and early 2020s. Guttmacher says the abortion rate per 1,000 women ages 15 to 44 rose from 13.5 in 2017 to 14.4 in 2020. The CDC says it rose from 11.2 per 1,000 in 2017 to 11.4 in 2019, before falling back to 11.1 in 2020 and then rising again to 11.6 in 2021. (The CDC’s figures for those years exclude data from California, D.C., Maryland, New Hampshire and New Jersey.)

The CDC broadly divides abortions into two categories: surgical abortions and medication abortions, which involve pills. Since the Food and Drug Administration first approved abortion pills in 2000, their use has increased over time as a share of abortions nationally, according to both the CDC and Guttmacher.

The majority of abortions in the U.S. now involve pills, according to both the CDC and Guttmacher. The CDC says 56% of U.S. abortions in 2021 involved pills, up from 53% in 2020 and 44% in 2019. Its figures for 2021 include the District of Columbia and 44 states that provided this data; its figures for 2020 include D.C. and 44 states (though not all of the same states as in 2021), and its figures for 2019 include D.C. and 45 states.

Guttmacher, which measures this every three years, says 53% of U.S. abortions involved pills in 2020, up from 39% in 2017.

Two pills commonly used together for medication abortions are mifepristone, which, taken first, blocks hormones that support a pregnancy, and misoprostol, which then causes the uterus to empty. According to the FDA, medication abortions are safe  until 10 weeks into pregnancy.

Surgical abortions conducted  during the first trimester  of pregnancy typically use a suction process, while the relatively few surgical abortions that occur  during the second trimester  of a pregnancy typically use a process called dilation and evacuation, according to the UCLA School of Medicine.

In 2020, there were 1,603 facilities in the U.S. that provided abortions,  according to Guttmacher . This included 807 clinics, 530 hospitals and 266 physicians’ offices.

A horizontal stacked bar chart showing the total number of abortion providers down since 1982.

While clinics make up half of the facilities that provide abortions, they are the sites where the vast majority (96%) of abortions are administered, either through procedures or the distribution of pills, according to Guttmacher’s 2020 data. (This includes 54% of abortions that are administered at specialized abortion clinics and 43% at nonspecialized clinics.) Hospitals made up 33% of the facilities that provided abortions in 2020 but accounted for only 3% of abortions that year, while just 1% of abortions were conducted by physicians’ offices.

Looking just at clinics – that is, the total number of specialized abortion clinics and nonspecialized clinics in the U.S. – Guttmacher found the total virtually unchanged between 2017 (808 clinics) and 2020 (807 clinics). However, there were regional differences. In the Midwest, the number of clinics that provide abortions increased by 11% during those years, and in the West by 6%. The number of clinics  decreased  during those years by 9% in the Northeast and 3% in the South.

The total number of abortion providers has declined dramatically since the 1980s. In 1982, according to Guttmacher, there were 2,908 facilities providing abortions in the U.S., including 789 clinics, 1,405 hospitals and 714 physicians’ offices.

The CDC does not track the number of abortion providers.

In the District of Columbia and the 46 states that provided abortion and residency information to the CDC in 2021, 10.9% of all abortions were performed on women known to live outside the state where the abortion occurred – slightly higher than the percentage in 2020 (9.7%). That year, D.C. and 46 states (though not the same ones as in 2021) reported abortion and residency data. (The total number of abortions used in these calculations included figures for women with both known and unknown residential status.)

The share of reported abortions performed on women outside their state of residence was much higher before the 1973 Roe decision that stopped states from banning abortion. In 1972, 41% of all abortions in D.C. and the 20 states that provided this information to the CDC that year were performed on women outside their state of residence. In 1973, the corresponding figure was 21% in the District of Columbia and the 41 states that provided this information, and in 1974 it was 11% in D.C. and the 43 states that provided data.

In the District of Columbia and the 46 states that reported age data to  the CDC in 2021, the majority of women who had abortions (57%) were in their 20s, while about three-in-ten (31%) were in their 30s. Teens ages 13 to 19 accounted for 8% of those who had abortions, while women ages 40 to 44 accounted for about 4%.

The vast majority of women who had abortions in 2021 were unmarried (87%), while married women accounted for 13%, according to  the CDC , which had data on this from 37 states.

A pie chart showing that, in 2021, majority of abortions were for women who had never had one before.

In the District of Columbia, New York City (but not the rest of New York) and the 31 states that reported racial and ethnic data on abortion to  the CDC , 42% of all women who had abortions in 2021 were non-Hispanic Black, while 30% were non-Hispanic White, 22% were Hispanic and 6% were of other races.

Looking at abortion rates among those ages 15 to 44, there were 28.6 abortions per 1,000 non-Hispanic Black women in 2021; 12.3 abortions per 1,000 Hispanic women; 6.4 abortions per 1,000 non-Hispanic White women; and 9.2 abortions per 1,000 women of other races, the  CDC reported  from those same 31 states, D.C. and New York City.

For 57% of U.S. women who had induced abortions in 2021, it was the first time they had ever had one,  according to the CDC.  For nearly a quarter (24%), it was their second abortion. For 11% of women who had an abortion that year, it was their third, and for 8% it was their fourth or more. These CDC figures include data from 41 states and New York City, but not the rest of New York.

A bar chart showing that most U.S. abortions in 2021 were for women who had previously given birth.

Nearly four-in-ten women who had abortions in 2021 (39%) had no previous live births at the time they had an abortion,  according to the CDC . Almost a quarter (24%) of women who had abortions in 2021 had one previous live birth, 20% had two previous live births, 10% had three, and 7% had four or more previous live births. These CDC figures include data from 41 states and New York City, but not the rest of New York.

The vast majority of abortions occur during the first trimester of a pregnancy. In 2021, 93% of abortions occurred during the first trimester – that is, at or before 13 weeks of gestation,  according to the CDC . An additional 6% occurred between 14 and 20 weeks of pregnancy, and about 1% were performed at 21 weeks or more of gestation. These CDC figures include data from 40 states and New York City, but not the rest of New York.

About 2% of all abortions in the U.S. involve some type of complication for the woman , according to an article in StatPearls, an online health care resource. “Most complications are considered minor such as pain, bleeding, infection and post-anesthesia complications,” according to the article.

The CDC calculates  case-fatality rates for women from induced abortions – that is, how many women die from abortion-related complications, for every 100,000 legal abortions that occur in the U.S .  The rate was lowest during the most recent period examined by the agency (2013 to 2020), when there were 0.45 deaths to women per 100,000 legal induced abortions. The case-fatality rate reported by the CDC was highest during the first period examined by the agency (1973 to 1977), when it was 2.09 deaths to women per 100,000 legal induced abortions. During the five-year periods in between, the figure ranged from 0.52 (from 1993 to 1997) to 0.78 (from 1978 to 1982).

The CDC calculates death rates by five-year and seven-year periods because of year-to-year fluctuation in the numbers and due to the relatively low number of women who die from legal induced abortions.

In 2020, the last year for which the CDC has information , six women in the U.S. died due to complications from induced abortions. Four women died in this way in 2019, two in 2018, and three in 2017. (These deaths all followed legal abortions.) Since 1990, the annual number of deaths among women due to legal induced abortion has ranged from two to 12.

The annual number of reported deaths from induced abortions (legal and illegal) tended to be higher in the 1980s, when it ranged from nine to 16, and from 1972 to 1979, when it ranged from 13 to 63. One driver of the decline was the drop in deaths from illegal abortions. There were 39 deaths from illegal abortions in 1972, the last full year before Roe v. Wade. The total fell to 19 in 1973 and to single digits or zero every year after that. (The number of deaths from legal abortions has also declined since then, though with some slight variation over time.)

The number of deaths from induced abortions was considerably higher in the 1960s than afterward. For instance, there were 119 deaths from induced abortions in  1963  and 99 in  1965 , according to reports by the then-U.S. Department of Health, Education and Welfare, a precursor to the Department of Health and Human Services. The CDC is a division of Health and Human Services.

Note: This is an update of a post originally published May 27, 2022, and first updated June 24, 2022.

Support for legal abortion is widespread in many countries, especially in Europe

Nearly a year after roe’s demise, americans’ views of abortion access increasingly vary by where they live, by more than two-to-one, americans say medication abortion should be legal in their state, most latinos say democrats care about them and work hard for their vote, far fewer say so of gop, positive views of supreme court decline sharply following abortion ruling, most popular.

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Case Report: A Case of Intellectual Disability with Inappropriate and Challenging Sexual Behavior that was Treated with GNRH Analogues

Intellectual Disability starts within the course of developmental stages and covers both intellectual and adaptive deficiencies in conceptual, social and applied fields. Individuals with intellectual disability experience many difficulties in social life due to challenging and inappropriate sexual behaviour. Suchdifficulties need to be addressed, reduced or treated. Traditional treatments often fail to treat and improve suchbehavior. Alternative treatment options need to be explored with studies conducted in this field. With this paper, we aimed to show and touch on alternative treatments for challenging and inappropriate behaviors of a 15-year old boy with intellectual disability, who was treated with GNRH analogues.

Introduction

Intellectual Disability is defined in DSM-5 as a conceptual, socially defective disorder that covers both intellectual and adaptive deficiencies and starts during the developmental stage. 1 Aggressive and challenging behaviors are frequently seen in these individuals with limited coping skills. 2 These behaviors, which are considered as the most important factors in applying to psychiatry clinics and drug use, make it difficult for caregivers that provide care to and live with intellectually disabled individuals. 3 , 4 Individuals with intellectual disabilities may have difficulty interpreting behavioral cues within their social environment. That is an obstacle for them to express their sexual desire in socially acceptable ways. 5 However; aggressive and challenging behaviors as well as inappropriate behaviors can be seen frequently in these individuals. These inappropriate behavior might be listed as masturbation, genital exposure, inappropriate sexual touching and embracing others too close. 6 – 8 Challenging and inappropriate sexual behaviors in individuals with intellectual disability are significant problems that need to be addressed in clinical practice. Antipsychotics are frequently used in clinical practice to manage these behaviors. However, there is a discrepancy regarding reports of the efficiency of antipsychotics medication in studies conducted in this field. 9 , 10 So, these drugs may not be efficient in the management of such behavior in certain individuals with intellectual disability. Despite ethical concerns, drugs that reduce sexual desire are sometimes used to reduce inappropriate sexual behavior. There are case reports that report GnRH analogues might be beneficial in cases with inappropriate sexual behavior and aggression in individuals with autism. 11 – 14 The use of GnRH analogues has several risks including delayed pubertal development, decreased muscle mass and bone density. In this case report, we aimed to discuss the use and efficacy of leuprolide as a GnRH analogue in a patient diagnosed with Intellectual Disability with challenging and inappropriate sexual behaviors that could not be suppressed by antipsychotics or other drugs.

A 15-year-old boy was brought to our child psychiatry clinic due to his aggressive and inappropriate sexual behaviors such as completely stripping off his clothes, and inappropriately touching private parts of the individuals in the household and others. It was noted that the patient had difficulties in speaking and language skills, interpersonal relations, academic and self-care skills as a result of the psychiatric examination. It was learned from the medical history that he was diagnosed with intellectual disability at primary school and he attended a special education center and a school where individuals with special needs went. He was asked to perform Wechsler Intelligence Scale for Children-Revised (WISC-R), bu he could not cooperate. According to the clinical opinion and history of the clinician and psychologist, he was diagnosed with moderate intellectual disability. There was no comorbid psychiatric diagnosis in psychiatric examination and history. It was learned from his parents that aggressive and inappropriate sexual behavior started in adolescence and has been on the increase for the past year. Also, It was learned that despite behavioral interventions and psychopharmacological treatments recommended by child psychiatrists they have met so far, no improvement was observed. Hormonal therapy was planned because the aggressive and inappropriate sexual behaviors persisted against all treatment interventions, it was noted that these behaviors made it difficult to live with the patient. The family was informed about the hormone treatment and associated effects and side effects. The patient was referred to a pediatric clinic for endocrinological and neurological examination. As a result of the physical examination; he was diagnosed with obesity (BMI: 36,26). Total testosterone level was 225 ng/dl. The diagnosis of Prader Willi Syndrome was excluded via genetic analysis. Consequently; it was concluded that GNRH analogue might be a treatment option. This alternative treatment option was used for reducing inappropriate and challenging sexual behavior despite ethical concerns, according to previous case reports. 11 – 14

Parents wereinformed about the uncertainties including costs, treatment expectations and possible side effects related to off-label use and written consent was obtained from the parents. 3.75 mg leuprolide acetate was administered intramuscularly once in every 28 days. No other psychotropic drug was used simultaneously. The patient was examined once a month for possible side effects and puberty evaluation. Strength and Difficulties Questionnaire (SDQ) and Turkish version of Aberrant Behavior Checklist (ABC) were completed by parents at the onset of treatment and every following month. It was learned that the boy’s challenging and inappropriate sexual behaviors increased after the first and second doses of leuprolide. There were no decrease in SDQ ve ABC scores. Parents’ anxiety gradually increased due to worsening of the symptoms. After the third dose, he was admitted to the psychiatry inpatient unit for observation. No other medication was prescribed, other than lorazepam that was to be used whenever required. During his 2-week inpatient stay, his challenging and inappropriate sexual behaviors increased gradually. Therefore leuprolide treatment was stopped. Testoterone level was 270 ng/dl after the third dose. SDQ and ABC scores were presented in Table1 .

Challenging and inappropriate sexual behaviors in adolescents with intellectual disability may cause significant concerns for others and restrictions for the individual. There may also be more serious negative consequences for these individuals, such as forensic events. Despite ethical concerns, hormonal treatment options are sometimes considered especially in the management of inappropriate sexual behaviors.

Although there is limited literature on the use of GnRH analogue in management of challenging and inappropriate sexual behaviors, results from individuals diagnosed with autism spectrum disorder promise that this treatment option might be beneficial. 11 – 14 In some case reports; GnRH analogue therapy has been reported to reduce inappropriate sexual behavior. 11 , 13 , 14 Robin et al. (2016) reported that GnRH analogues were effective in managing such behavior in a male patient with autism, who had severe aggressive behavior since the onset of puberty. 12 A positive effect of combined long acting GNRH agonist treatment and heavy metal chelation therapy on aggressive behavior has been reported in 11 autistic children. 15 , 16 Based on these previously reported clinical experiences, we decided to use a GnRH analogue to manage and reduce challenging and inappropriate sexual behavior in this patient with Intellectual Disability. Another reason for this decision was that these problems did not decrease with behavioral methods, education and commonly used pharmacological drugs. 3.75 mg leuprolide acetate was administered intramuscularly and 3 doses every 28 days. Our aim was to reduce gonodal steroid levels to pre-pubertal levels. However, during the follow-up, we observed that the patient could not tolerate the treatment and there was an increase in both challenging and inappropriate sexual behaviors. There were no changes in SDQ scores and increases in ABC scores. Therefore, treatment with leuprolide acetate was stopped.

It is known that administration of leuprolide acetate in humans initially causes a temporary increase in gonadal steroid levels (testosterone and dihydrotestosterone in men). A mild increase in testosterone levels was observed in our patient after the administration of leuprolide acetate. Although there was a mild increase in testosterone levels, we thought there might be a difference in testosterone receptor sensitivity. The negative outcome of treatment in this case is different from the positive experiences mentioned in the literature. It should be noted that GnRH analogue therapy might not be beneficial and efficient in all patients. We believe that this case report will make a significant contribution to the limited literature on the use of GnRH analogues in challenging and inappropriate sexual behavior.

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