case study about individual with cognitive disability

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.

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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.

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 – 4.8MB] ,” an emergency preparedness training program developed through the Oregon Office of Disability and Health .

“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 for sharing this personal story.

Learn about emergency preparedness for people with disabilities »

Jerry’s Story

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 – 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 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 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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Cognitive Behaviour Therapy for People with Intellectual Disabilities—How Far Have We Come?

• Published: 20 October 2020
• Volume 14 , pages 114–132, ( 2021 )

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• Anastasia Hronis 1  

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This review paper reflects on the existing literature on cognitive behaviour therapy for adults, adolescents and children with intellectual disabilities. People with intellectual disabilities have high rates of comorbid mental health disorders, but low rates of accessing treatments with limited treatment options available to them. Historically, they have been excluded from cognitive-based therapies such as cognitive behaviour therapy. However, recent research has shown that people with mild to moderate intellectual disabilities do have the capacity to engage in cognitive-based interventions. The review highlights the progress that has been made in the field of adapting CBT for people with intellectual disabilities, as well as the current gaps in the literature and suggestions for future research.

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Coping Skills Training in Individuals with an Intellectual Disability

Cognitive Behavioural Therapy for children and adolescents with intellectual disability and anxiety: a therapist manual

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The author acknowledges Professor Ian Kneebone and Professor Rachel Roberts for their ongoing supervision and support.

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Hronis, A. Cognitive Behaviour Therapy for People with Intellectual Disabilities—How Far Have We Come?. J Cogn Ther 14 , 114–132 (2021). https://doi.org/10.1007/s41811-020-00091-6

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Case 2: An 11-year-old girl with aggressive behaviour and intellectual impairment

An 11-year-old Caucasian girl was referred for evaluation of aggressive behaviour that had worsened over the past two years. She experienced frequent outbursts of anger and would scream or bite when she became upset. She was cognitively delayed and could not independently perform activities of daily living such as bathing and eating. Attempts at toilet training were unsuccessful. She exhibited repetitive mannerisms such as hand flapping, eye blinking, repeated hand washing and running in circles. Socialization skills were restricted and eye contact was poor. Family history was significant for four brothers with developmental delay, a maternal aunt with premature menopause, and history of gait instability and tremors in her maternal grandfather since 40 years of age. There was no history of consanguinity. No complications were reported during pregnancy or birth. Her motor milestones were normal. Although she exhibited language delay, she could engage in a conversation with diminished vocabulary.

On physical examination, vital signs were normal. Subtle facial dysmorphism was present ( Figure 1 ). Her head was normocephalic, and cardiac and pulmonary examinations were unremarkable. The patient was noted to be intellectually impaired, hyperactive, had poor eye contact and displayed repetitive behaviour. The remainder of the neurological examination (cranial nerves, motor, sensory and reflexes) was normal.

Patient’s photograph demonstrating subtle dysmorphic features including a long face, thin upper lip and long philtrum

CASE 2 DIAGNOSIS: FRAGILE X SYNDROME

This case is a classic presentation of fragile X syndrome (FXS). FXS is caused by a mutation of the fragile X mental retardation 1 ( FMR1 ) gene on Xq27.3. The vast majority of cases occur as a result of unstable expansion of the CGG repeat in the FMR1 gene. The presence of >200 repeats is associated with hypermethylation, leading to transcriptional silencing and a decrease or absence of the gene product, fragile X mental retardation protein ( 1 ). The diagnosis of FXS is made by assessing the number of CGG repeats using polymerase chain reaction analysis, usually in conjunction with Southern blot analysis, which evaluates the methylation status of the gene. The patient in the present case was genetically confirmed to have the full mutation (667 repeats of CGG), along with four of her brothers.

FXS is the most common cause of inherited intellectual disability and is strongly associated with autism ( 1 ). It may present with features of pervasive developmental disorder including language delay, stereotypic behaviours and social impairment. Children with FXS often experience scholastic problems due to autism in addition to the underlying intellectual disability, and are frequently placed in special education classes or are homeschooled. Other features include attention deficit hyperactivity disorder, hyperextensible joints, mitral valve prolapse, flat feet, hypersensitivity to sensory stimuli and hypotonia ( 1 ). Many patients with FXS, particularly boys, develop seizures in early childhood ( 1 ). Individuals with FXS often have a characteristic physical appearance including macrocephaly, a long face with a prominent forehead and large ears. Postpubertal males can develop macro-orchidism. Similar to our patient, females affected with FXS may exhibit subtle dysmorphic features. As a result of random X inactivation and presence of FMR1 from the normal X chromosome, females with FXS may develop an attenuated phenotype ( 1 ). It may, thus, be challenging to suspect FXS in a girl solely based on clinical presentation.

Family history may provide important clues to the diagnosis of FXS. While the presence of >200 CGG repeats leads to FXS, patients with 55 to 200 repeats (‘premutation’) have a different clinical phenotype. Premutation carrier males often have mild cognitive deficits and may develop fragile X-associated tremor/ataxia syndrome (FXTAS), which is a Parkinson’s-like condition that presents with gait instability and postural tremors. Premutation carrier females may develop premature ovarian failure, anxiety and depression ( 2 ). The symptoms reported in the patient’s maternal grandfather and aunt were suspicious for FXTAS and premature ovarian failure, respectively. Taking a thorough history is vital to obtain these important clues, which may assist in evaluation and diagnosis.

Interventions, such as early developmental stimulation, physical therapy, occupational therapy, and speech and language therapy, are key to the management of children with FXS. Stimulants and anti-depressants can be prescribed for behavioural symptoms including hyperactivity, inattention and mood disturbances. Children with seizures should be treated with anticonvulsants. Targeted therapeutic options are currently being evaluated, including R-baclofen, which may have a role in decreasing seizures, improving autistic behaviours and decreasing social impairment ( 2 ). Families should be offered genetic counselling to determine the extent of the mutation and risk of transmission because there are implications for the diagnosis on seemingly unaffected family members.

In summary, FXS remains the most common cause of inherited intellectual disability and should be a part of the evaluation of any child with unexplained developmental delay. Our patient exhibited some of the physical characteristics of FXS, but the presence of pervasive features along with the intellectual disability and a strong family history favoured a diagnosis of FXS. It is important to consider FXS in girls presenting with intellectual disability because the clinical features may be more subtle compared with boys.

CLINICAL PEARLS

• FXS is the most common inherited cause of intellectual disability.
• Characteristic features of FXS include physical characteristics such as a long face, large ears and macro-orchidism (in postpubertal males), as well as autism, seizures and attention deficit hyperactivity disorder. Premutation carriers can present with FXTAS (males) and premature ovarian failure (females).
• FXS should be considered as a potential diagnosis in girls presenting with unexplained intellectual disability because other features of the disease may be less conspicuous.

• Palo Alto University

The fight to remain silent: Individuals with intellectual disability and their involvement in the legal system and custodial interrogations

Summary of the Research

Translating research into practice, other interesting tidbits for researchers and clinicians, join the discussion.

Information regarding intelligence may be used to predict an individual’s Miranda abilities and emphasized concerns that people with intellectual disability are at a significant risk to make uninformed waivers of their rights. This is the bottom line of a recently published article in Law and Human Behavior . Below is a summary of the research and findings as well as a translation of this research into practice.

Featured Article | Law and Human Behavior | 2020, Vol. 44, No. 1, 60-70

The predictive power of intelligence: miranda abilities of individuals with intellectual disability.

Sydnee L. Erickson,  University of Alabama Karen L. Salekin,  University of Alabama Lauren N. Johnson,  University of Alabama Stephanie C. Doran,  University of Alabama

Objective: The Miranda v. Arizona (1966) decision was intended to protect individuals’ rights in custodial situations. The purpose of this article was to evaluate Miranda abilities of individuals with intellectual disability and evaluate the utility of intelligence in predicting these abilities. Additionally, we aimed to provide an updated resource for forensic examiners regarding the performance of individuals with intellectual disability on the Standardized Assessment of Miranda Abilities (SAMA). Hypotheses: We hypothesized that IQ, particularly verbal intelligence and working memory, would significantly predict abilities related to recall, vocabulary, knowledge, and acquiescence in a sample with intellectual disability. Method: Sixty-two individuals diagnosed with intellectual disability completed the Wechsler Adult Intelligence Scale– 4th ed. (WAIS-IV), the SAMA, and a background questionnaire. Results: Participants demonstrated significantly worse Miranda abilities when compared to the normative sample of the SAMA apart from acquiescence, which they demonstrated at significantly higher rates. Participants exhibited limited existing knowledge of Miranda rights and showed minimal improvement following exposure to a Miranda warning. Verbal abilities were a significant predictor of recall and vocabulary abilities with large effect sizes on average (i.e., ds > 1). IQ was not predictive of misconceptions about Miranda or acquiescence. Conclusions: Verbal intelligence was an important contributor to understanding Miranda. This study provided data related to performance on the SAMA by a sample of individuals with intellectual disability. It may serve as a reference for evaluators, legal professionals, and law enforcement officers when working with justice-involved persons with suspected intellectual disability.

Miranda rights, intellectual disability, Standard Assessment of Miranda Abilities, intelligence, Miranda comprehension

“In 1966, the Supreme Court of the United States made a land- mark decision regarding constitutional rights in custodial situations. In the case of Miranda v. Arizona (1966), the Justices ruled that safeguards must be put in place to ‘secure the privilege against self-incrimination’ (p. 444) and to provide the individual with access to an attorney to protect Sixth Amendment rights. The Miranda decision mandated that individuals in custodial settings must be informed of these protections, rather than relying on the assumption that individuals would preemptively know their rights. As per Miranda, defendants must be provided the following information, which may vary in wording by jurisdiction: 1. You have the right to remain silent.

2. Anything you say can and will be used against you.

3. You have the right to an attorney.

4. If you cannot afford an attorney, one will be appointed to you.

5. You can assert these rights at any time” (p. 60).

“The Miranda rights are afforded to all persons and can be waived by an individual provided that the waiver is made in a knowing, voluntary, and intelligent manner. However, the Miranda decision did not specify a standardized procedure for determining the validity of a waiver. Instead, decisions regarding the acceptableness of a waiver are often left to the discretion of law enforcement officers presiding over the custodial situation. Existing studies regarding the comprehension of police warnings have repeatedly demonstrated that various members of the general adult population have difficulties understanding these constitutional rights. A paucity of understanding can lead to individuals executing uninformed decisions regarding their Miranda rights” (p. 61)

“Due to the popularity of crime-related media (e.g., TV, cinema, podcasts, etc.), people in the United States have increased exposure to the Miranda warning as portrayed by these outlets. Rogers (2008) noted this prevalence of partial exposure can lead to an inaccurate understanding of Miranda rights and cause misplaced confidence in one’s own understanding of these rights. Prior studies demonstrated that despite an increased prevalence of Miranda in the media, people still exhibit difficulties with recalling the Miranda rights” (p. 61).

“Beyond struggles with recall, existing research elucidates the problematic language of the Miranda warning. One such factor is that a 10th grade reading level, or higher, has been shown to be necessary to understand over 60 words commonly found in Miranda warnings” (p. 61).

“Apart from possible difficulties with the advanced reading levels, the general population does not understand the rights that are protected by the Miranda warnings. In both community samples (e.g., jury pools and college students) and samples of pretrial defendants, Rogers and colleagues, found that many participants did not know the right to remain silent was a protection afforded by the Constitution. The participants also reported that they believed remaining silent would have negative repercussions because it would appear as a portrayal of guilt. Approximately one third to over one half of both samples incorrectly assumed that statements could be made off the record and would not be used as evidence against them” (p. 61).

“In addition to misconceptions regarding the protections of Miranda, individuals evidence a lack of understanding of the consequences related to waiving Miranda” (p. 61).

“Intellectual disability is a neurodevelopmental disorder defined as the presence of intellectual deficits and adaptive behavior deficits, which manifest during the developmental period. Individuals with intellectual disability consistently demonstrate significantly lower abilities in various cognitive skills, such as working memory and vocabulary retention, when compared to typically developed (TD) peers. As tasks require increasing levels of control of active processing, differences in working memory performance between individuals with intellectual disability and TD individuals become more pronounced. Deficits in working memory are problematic as working memory is necessary for utilizing prior social knowledge to consider current interactions and make choices. Individuals with intellectual disability are likely to experience difficulty remembering relevant knowledge and making informed decisions when interacting with police officers” (p. 62).

“Few studies to date have examined the level of knowledge of Miranda in individuals with intellectual disability and have not exclusively utilized the Standard Assessment of Miranda Abilities in a sample of individuals diagnosed with intellectual disability. Due to differences in functioning and capabilities, it cannot be assumed that research conducted with individuals without intellectual disability is applicable or representative of individuals with intellectual disability. It is likely that deficits identified in these samples would be magnified when evaluating individuals with intellectual disability. The purpose of this study was twofold, (a) to determine levels of recall, vocabulary comprehension, misconceptions, and acquiescence relevant to Miranda rights in a sample of individuals with intellectual disability, and (b) to determine the ability of IQ, and its components, to predict Miranda abilities. We investigated the predictive utility of IQ related to interrogation rights to provide forensic evaluators with a resource that could be used to estimate an individual’s level of Miranda comprehension based on available intelligence scores” (p. 63).

“The current results indicated that verbal ability is the strongest predictor of Miranda recall and vocabulary knowledge of individuals with intellectual disability as measured by the SAMA. Contrary to what we expected, working memory did not demonstrate a significant relationship with Miranda abilities. These findings contribute to the growing body of knowledge about the impact of intellectual ability on psycholegal functioning and elucidate numerous considerations for assessing individuals with intellectual disability who interact with the legal system. Perhaps the most important finding from the current study is that individuals with intellectual disability display remarkably low abilities relevant to comprehending Miranda rights. This suggests that this population is at significant risk to execute Miranda waivers without the prerequisite proficiency to do so in a knowing, voluntary, and intelligent manner” (p. 66-67).

“Overall, the current study demonstrated that individuals with intellectual disability perform poorly on measures of Miranda knowledge and are significantly disadvantaged in the legal system. These individuals’ cognitive limitations, coupled with high Miranda waiver rates among justice-involved individuals, may cause individuals with intellectual disability to become involved in a system that is incapable of safeguarding their rights. Additionally, it further strengthens the emphasis on the need for competency evaluations regarding Miranda waivers for individuals suspected of presenting with intellectual disability. The utility of intelligence in predicting Miranda abilities may be a useful reference for forensic evaluators or legal professionals in determining a defendant’s probable level of comprehension. Evidence of impaired verbal abilities may be indicative of impaired Miranda understanding and reasoning” (p. 69).

“The findings of this study point to the need for future research devoted to improving comprehension of Miranda rights for individuals with intellectual disability. Training programs could be developed for individuals with intellectual disability to prepare them for potential interactions in custodial situations. Information from this study may be used to inform and train law enforcement regarding the characteristics associated with intellectual disability, and how best to interact with these individuals to ensure the necessary safeguards of Miranda remain in place. Although the identification of individuals with intellectual disability is time-consuming and requires expertise, it may be possible to develop a checklist from which officers can determine if the individual might require special consideration when undergoing the arrest process. Modifications such as simplified language, decreased speed of the administration of the warning, and open-ended clarifying questions may be useful when interacting with individuals with cognitive limitations. These adjustments may prove fruitful in ensuring the individual understands their rights, how to invoke their rights, and that any waivers are carried out in a knowing, voluntary, and intelligent manner” (p. 69).

As always, please join the discussion below if you have thoughts or comments to add!

Amanda Reed

Amanda L. Reed is a first year student in John Jay College of Criminal Justice’s clinical psychology doctoral program. She is the Lab Coordinator for the Forensic Training Academy. Amanda received her Bachelor’s degree in psychology from Wellesley College and a Master’s degree in Forensic Psychology from John Jay College of Criminal Justice. Her research interests include evaluator bias and training in forensic evaluation.

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Case Study of a Child with Intellectual Disability

In this intellectual disability case study, the author looks at designing an education curriculum for Meagan, a 14-year-old student.

Introduction

There are numerous interventions that have been designed to enable students with intellectual disability better cope with their condition. Most of these interventions have been hinged on the principle that respective educational programs should be tailored to complement the students’ strengths, and to supplement their weaknesses.

This is the same principle underlying the functioning of the K12 educational principle because it is centered on meeting individual student needs (K12 Inc. 2011, p. 1). The K12 educational paradigm mostly works through online communication but it has been seen to offer a lot of advantages to students with unique disabilities.

For instance, the educational methodology is known to provide rich, challenging and engaging content; an individualized learning plan; a learning coach; and cutting-edge technology in the provision of the best learning outcomes for intellectually disabled students (K12 Inc. 2011, p. 1).

When educating students with intellectual disabilities, it should be understood that, students are bound to have trouble in learning, retaining information and understanding information (Pearson Education Inc. 2011, p. 2).

Educators have often experienced such challenges, but comprehensively, there is a consensus among most stakeholders that it is vital to make accommodations for certain groups of students, and it is also crucial to make curriculum modifications for other students. In this regard, there seems to be a lack of consensus in coming up with one formula for handling students with intellectual disability.

This is the main framework for the advancement of this paper because this paper focuses on developing curriculum adjustments for a young man, Meagan. Meagan is 14 years old and has had a history of intellectual disability. This paper analyzes various dynamics of Meagan’s life, with the intention of making curriculum adjustments to provide an effective framework for learning.

To provide a good backdrop for the development of a good framework for learning, several aspects of Meagan’s life will be analyzed. These aspects include his family background, personal history, personal skills and personal abilities.

These factors will be analyzed systematically. Comprehensively, this analysis will be done with the aim of identifying one long-term aim or objective of the learning outcome and two short-term aims or objectives of the learning outcome.

Family Background

Meagan is the eldest child in a family of three children. His younger sibling is a girl, Sophia, aged nine years old. The youngest child is also a girl and she is three years old. Among his siblings, Meagan is deemed to be the child who has experienced most difficulty in learning. Meagan’s family hails from a middle-class society in Melbourne, Australia. His father works as a retired engineer in a local factory.

The mother works as a librarian in a local university. There has been no vivid or confirmed reports of intellectual disability among any of Meagan’s family members, though there have been unconfirmed reports of mental illness among some of Meagan’s relatives hailing from his father’s side of the family.

His aunt is said to experience occasional episodes of mental instability. However, there have been no confirmed reports of mental illnesses or cognitive disability from any of the family members of Megan’s mother.

Megan’s family professes the Christian faith, though they are not committed in their religion. However, Christianity has had an influence on Meagan’s life because he strongly identifies with his Christian faith. In the past couple of months, Meagan was baptized and currently devotes most of his time to his religious duties. None of Meagan’s family members pay much attention to religion.

His family also hails from a background of child neglect, with many of Meagan’s relatives having been abandoned by their parents at an early age. Meagan’s parents are no exception. The degree of attention they give Meagan is inadequate because little attention is paid to Meagan’s slow intellectual development. This has been going on since his parents confirmed that he was suffering from intellectual disability.

There is also an almost non-existent family support structure for Meagan to cope with his condition. Moreover, there is very little evidence of family cohesion among Megan’s family members, starting from his parents to his siblings. In this regard, Meagan is left to live with his condition, alone.

Personal History

Meagan hails from the aboriginal community of Australia. He was prematurely born because he was birthed at only seven months into his mother’s pregnancy. During his infant life, Meagan was abandoned by his mother, even before he was completely weaned from her. This forced his father to look for a baby sitter.

Nonetheless, despite these challenges, Meagan lived to have a vibrant childhood, with no signs of failing to cope with his playmates or friends. To a large extent, Meagan has been deemed a “normal” child. In his teen years, he used to participate in church activities (for the young) and also took part in school activities including extracurricular games.

He was a vibrant member of the school choir and an active member of the school soccer club. However, Meagan’s repeated the seventh grade level (twice) because he failed to meet the minimum threshold for admission into the eighth grade.

For a long time, he experienced a lot of difficulty trying to meet the minimum threshold for admission into sequential class grades because he always trailed among the last five candidates in any class. This was witnessed from his admission into the first grade.

However, Meagan’s academic background was characterized by exemplary performance in various academic writing competitions. His teachers termed him as a very creative writer and he never disappointed in his English creative writing assignments.

However, this was as far as his academic excellence stretched. Currently, Meagan undertakes blue collar jobs on minimum wage but there is increasing pressure among his peers for him to continue with his studies.

Personal Skills and Abilities

Meagan has a creative mind. He has shown interest in creative writing from his younger years but as he grew older, his interest changed. However, as explained in earlier sections of this study, in his young years, Meagan used to write exemplary creative works. His interest however shifted into music when he grew a little older.

So far, he has been able to record music in a local music company but his talents have never been fully exploited because of the lack of adequate finances to bankroll his musical ambitions. Moreover, there has been limited support from most of his family members in his quest to pursue music. However, due to his strong religious background, Meagan hopes to produce music for his local church.

The main aim of undertaking a curriculum adjustment for Meagan is to enable him to earnest his abilities and use them to the optimum benefit of his talents.

To enable Meagan to be independent and able to communicate his needs in effective and acceptable ways.

To assist Meagan to excel in personal growth and compete with other students in varying levels of excellence.

Curriculum Adjustments

Making the best curriculum adjustments for Meagan entirely depends on the nature of his disability. From previous sections of this paper, we have affirmed that Meagan suffers from a slow comprehension of academic disciplines, but he has a stronger grasp on creative works.

Here, there are several curriculum adjustments that can be done to ensure Meagan lives to his full potential. In this regard, this paper proposes several curriculum adjustments, based on the K12 teaching model which aims to provide individualized learning for students with intellectual disability. They are outlined below:

Interest and Student Ability

To ensure Meagan lives to his full potential, it is crucial to make curriculum adjustments to suit individual needs, abilities and preferences. A uniform curriculum which is meant to work for the majority student population is bound to fail for Meagan because it will not be specific to Meagan’s abilities and potential.

In this regard, it is therefore crucial for the curriculum to be designed to emphasize on creative works, as opposed to academic excellence, to enable Meagan to succeed in arts (Queensland Government 2011). Emphasis should be further made to ensure the school grading criteria focuses the same level of attention it gives to sciences (and other disciplines) as it does with art subjects.

Such a grading criterion would ensure students are assessed on all fronts, and not just academic. When adjusting the learning curriculum, it is also crucial for teachers to structure the curriculum in a manner that guarantees the grouping of students into different ability groups.

Not all students have the same type of abilities and therefore, it would be beneficial for teachers to group Meagan into the “creative works” group, so that he can share his creative ideas with his peers (Foreman 2009, p. 170).

Adjusting the Learning Outcomes

Adjusting the learning outcomes is an important adjustment to the learning curriculum if the school grading process is to be fair. Here, “fair” means to accommodate intellectually disabled students (Snowman 2011).

Accommodation of Diverse learning Styles

Intellectually disabled students are normally faced with the challenge of failing to comprehend learning instructions as fast as other students do. However, research studies affirm that some of these students prefer certain learning styles in place of others (Queensland Government 2011). Moreover, educationists have shown that certain learning styles are more effective for intellectually disabled students, while others are not.

Such dynamics withstanding, it is crucial to make curriculum adjustments that allow for the accommodation of diverse learning styles for improved efficacy in learning. For instance, conventional or online lessons can be administered using various learning materials such as DVDs, CDs, Books, videos and such materials (Browder 2011, p. 332).

The inclusion of such diverse strategies is set to improve the level of interaction between the students and the teachers because an appropriate learning style would motivate the students to pay more interest in the learning process. This improves the students’ level of engagement. Moreover, such curriculum changes ensure the learning process is rich in its contents.

Integrating a Learning Coach (Parent Involvement)

It is crucial to integrate the input of a learning coach into the school curriculum to encourage the participation of Meagan’s parents in his educational endeavors. The parents will be the learning support team.

Already, we have established that Meagan hails from a family that pays little attention to his educational needs. Here, there is a strong need to integrate the parents’ input into Meagan’s educational projects to ensure he enjoys a support structure, aside from the traditional teacher-student framework.

Though an integration of the role of the learning coach into the school curriculum may not necessarily be confined in the parent-student framework, it is crucial for this integration to be developed in this framework, if Meagan has to develop better learning skills (National Parent Teacher Association 2009, p. 1 ) .

This is because a great degree of the deterioration of his intellectual ability comes from a lack of effective support structure that enables him to improve his learning skills (Queensland Government 2011).

For long, this need has been ignored, and as a result, Meagan has continually performed poorly in his academic endeavors. Nonetheless, the learning coach framework can be designed in various ways. For instance, the school curriculum can be designed to include the participation of parents in the student’s projects, at least once or twice a semester.

Parents may be required to give consent, provide counsel or similar activities on the student’s tasks, thereby encouraging him to better develop with his learning activities. The inclusion of this principle into the school curriculum may be indirectly beneficial to Meagan because it is bound to have a motivating effect on him. This is the first strategy that can be adopted in encouraging parent participation.

The second strategy that can be adopted by the school is implementing a family-school partnership policy where parents and teachers agree on a common framework where parental involvement is assessed, and the parents’ progress is measured (Westwood 2011, p. 15).

This recommendation emanates from research studies which have shown that schools which have an efficient family-school partnership perform better than schools which lack this policy (Queensland Government 2011).

Finally, the school should make adjustments to the curriculum to ensure that parents take part in the decision making process of activities affecting student achievement. Here, parents should be allowed to be part of advisory committees which affect student achievement.

This paper proposes that, adjustments in the school curriculum which have to be made to accommodate Meagan’s skills and abilities have to be done within the confines of earnesting his skills and abilities (to use them for the benefit of his personal growth). In this regard, this paper proposes that the school curriculum should be tailored to accommodate Meagan’s artistic skills.

Moreover, the learning outcome should be adjusted to accommodate the same skills and abilities. From a holistic perspective, this paper also proposes that diverse learning styles should be accommodated into the learning curriculum to ensure students with intellectual disability learn in an efficient way.

These recommendations are carved from the K12program. Nonetheless, this paper also puts a lot of emphasis on the importance of incorporating parent input in the school curriculum. Integrating these principles will go a long way in enabling Meagan to earnest his strengths and use them to the optimum benefit of his talents.

Browder, D. (2011) Teaching Students with Moderate and Severe Disabilities . New York, Guilford Press.

Foreman, P. (2009) Education of Students with an Intellectual Disability: Research and Practice (PB). New York, IAP.

K12 Inc. (2011) How a K12 Education Works . Web.

National Parent Teacher Association. (2009 ) Enhancing Parent Involvement. Web.

Pearson Education Inc. (2011) Teaching Students with Special Needs . Web.

Queensland Government. (2011) Intellectual Impairment – Educational Adjustments. Web.

Snowman, J. (2011) Psychology Applied to Teaching . London, Cengage Learning.

Westwood, P. (2011) Commonsense Methods for Children with Special Educational Needs . London, Taylor & Francis.

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• Published: 13 May 2024

FBXO11 variants are associated with intellectual disability and variable clinical manifestation in Chinese affected individuals

• Xin Pan 1 ,
• Xu Zhang 1 ,
• Xianglan Tang 1 ,
• Guanhua Qian 1 ,
• Hao Qiu   ORCID: orcid.org/0000-0002-6826-3734 2 ,
• Shuhong Lin 2 ,
• Hong Yao 1 ,
• Xiaojing Dong 1 &

Journal of Human Genetics ( 2024 ) Cite this article

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• Disease genetics
• Next-generation sequencing

F-box protein 11 ( FBXO11 ) is a member of F-Box protein family, which has recently been proved to be associated with intellectual developmental disorder with dysmorphic facies and behavioral abnormalities (IDDFBA, OMIM: 618089). In this study, 12 intellectual disability individuals from 5 Chinese ID families were collected, and whole exome sequencing (WES), sanger sequencing, and RNA sequencing (RNA-seq) were conducted. Almost all the affected individuals presented with mild to severe intellectual disability (12/12), global developmental delay (10/12), speech and language development delay (8/12) associated with a range of alternate features including increased body weight (7/12), short stature (6/12), seizures (3/12), reduced visual acuity (4/12), hypotonia (1/12), and auditory hallucinations and hallucinations (1/12). Distinguishingly, malformation was not observed in all the affected individuals. WES analysis showed 5 novel FBXO11 variants, which include an inframe deletion variant, a missense variant, two frameshift variants, and a partial deletion of FBXO11 (exon 22–23). RNA-seq indicated that exon 22–23 deletion of FBXO11 results in a new mRNA structure. Conservation and protein structure prediction demonstrated deleterious effect of these variants. The DEGs analysis revealed 148 differentially expressed genes shared among 6 affected individuals, which were mainly associated with genes of muscle and immune system. Our research is the first report of FBXO11 -associated IDDFBA in Chinese individuals, which expands the genetic and clinical spectrum of this newly identified NDD/ID syndrome.

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Data availability.

The datasets used and/or analyzed during the current study available from the corresponding author (BT), on reasonable request.

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Acknowledgements

The author would like to thank all the affected individuals and their families for participating in the study.

This work was supported by the Scientific and Technological Research Program of Chongqing Municipal Education Commission (Grant No. KJQN202200420) and Program for Youth Innovation in Future Medicine, Chongqing Medical University (W0122).

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Department of Gynecology and Obstetrics, The Second Affiliated Hospital of Chongqing Medical University, Chongqing, 400000, China

Xin Pan, Li Liu, Xu Zhang, Xianglan Tang, Guanhua Qian, Hong Yao, Xiaojing Dong & Bo Tan

Center for Clinical Genetics and Genomics, DIAN Diagnostics, Hangzhou, 310058, Zhejiang, China

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Contributions

Conceptualization: XP and BT; Data curation: XP, LL, XZ and GQ; Formal Analysis: HQ and SHL; Funding acquisition: HY, XD and BT; Investigation: HQ and LL; Project administration: HY, XD and BT, Supervision: HY, XD and BT; Visualization: HQ and SHL; Writing – original draft: HQ; Writing – review & editing: HY, XD, XT and BT.

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Correspondence to Bo Tan .

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Pan, X., Liu, L., Zhang, X. et al. FBXO11 variants are associated with intellectual disability and variable clinical manifestation in Chinese affected individuals. J Hum Genet (2024). https://doi.org/10.1038/s10038-024-01255-4

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• Published: 10 May 2024

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

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

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

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Metrics details

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

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

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

Conclusions

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

Plain language summary

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

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Introduction

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

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

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

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

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

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

Overview of telepractice project

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

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

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

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

Summary of telepractice co-design project structure [ 1 ]

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

Methods and results

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

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

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

Getting started

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

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

Co-design workshops

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

Staff and community co-designers

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

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

Workshop series structure

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

Workshop facilitators

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

Pre-workshop preparations

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

Workshop resources and supports

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

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

Enabling different kinds of participation

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

Non-verbal response cards

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

Outline of workshop and group structures

Workshop 1: the beginning

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

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

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

Workshop 2: mapping the journey

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

Draft journey map visualisation

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

Workshop 3: ideas for addressing pain points

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

Option cards for Lived experience expert co-designer workshop activity

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

Workshop 4: story telling and generation of future state solutions

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

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

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

Workshop 5: finishing the story

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

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

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

Post prototype reflection session

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

Benefits and challenges

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

Co-designer’s perspectives of the workshop series

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

Co-designing as a team

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

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

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

Balancing idealism and realism

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

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

The value of small groups

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

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

And a lived experience expert co-designer additionally reflected:

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

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

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

Accessibility and choice

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

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

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

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

Learning new skills and gaining new insight

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Setting a new bar for inclusion

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

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

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

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

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

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

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

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

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

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

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

Strengths and limitations

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

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

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

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

Recommendations for future studies

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

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

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

Data availability

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

Abbreviations

Australian Dollar

Guidance for Reporting Involvement of Patients and the Public 2 Checklist

Human Research Ethics Committee

Doctor of Philosophy

Patient and Public Involvement

Microsoft Teams

National Disability Insurance Scheme

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Acknowledgements

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

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

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Contributions

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

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

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

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

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• Telepractice
• Lived experience
• Embedded researcher
• Digital health
• Patient and public involvement

Research Involvement and Engagement

ISSN: 2056-7529

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