Heidi Hamilton, disability services director for the Minnesota Department of Human Services, and Michael Gamel-McCormick, disability policy director for the U.S. Senate Special Committee on Aging, will join researchers at the Institute on Community Integration and others at an Oct. 3 online public forum exploring how disparities in funding for services affects people with disabilities.
The policy forum, InstitutionalBias in Long-Term Services and Supports for People with IDD, will be a live discussion of issues raised in a recent ICI Policy Research Brief. The brief recommends policymakers eliminate the funding advantage that intermediate care facilities have as Medicaid entitlements, placing home- and community-based (HCBS) services on equal footing. The brief also calls for enforcing all provisions of the 2014 Medicaid HCBS Rule to promote person-centered services and individual choice, among other recommendations.
“With recent developments in HCBS funding and workforce shortages, it is especially important now not to lose sight of the gains made as people with disabilities moved out of institutions and into community settings where they have much more control over their daily lives,” said Julie Bershadsky, director of ICI’s community living and employment focus area. “This brief explains the roots of the bias toward institutional care, and we are excited for the discussion with key stakeholders it will generate in the policy forum.”
“It struck us as odd that while people with disabilities have better outcomes and prefer home- and community-based services, only services performed in institutions and intermediate care facilities are federally mandated,” Begin said.
Cole, founder of the Disability Motivational Network , helped create the policy brief as part of her MNLEND fellowship at ICI. She said she was moved to work on this particular project after seeing the large number of people on waiting lists to have their services delivered at home.
“We need to allow family members to take care of their loved ones, and many are not even aware of their options,” she said.
The research data comes from ICI’s Residential Information Systems Project (RISP), a longitudinal study of living arrangements for people with intellectual or developmental disabilities who get long-term supports and services. The project tracks detailed information about the places people with disabilities live, including large institutions, intermediate care facilities, and group homes.
“While states are not allowed to have waiting lists for services provided in Medicaid institutions, most states have waiting lists for home or community-based supports and services. In some states those waiting lists are very long,” said Larson, who directs the long-running project. “With more than 900,000 people getting Home and Community Based Services compared to fewer than 70,000 people in Medicaid-funded institutions, HCBS services are clearly preferred.”
Register here for the forum on Oct. 3, 1 p.m. – 2:30 p.m. Central Time.
Higher expectations for the inclusion of people with disabilities in the social fabric of their communities are today being driven in large part by people with disabilities themselves, who are participating directly in disability research, a new review by Institute on Community Integration researchers shows.
The authors review participation in mainstream community activities across the lifespan of people with disabilities. Various settings and types of social relationships, including LGBTQ+ relationships and online dating are discussed. Aging, end-of-life issues, and retirement relationships are also included.
“The understanding and conceptualization of social inclusion has become richer in recent years, largely thanks to the involvement of people with disabilities in the research,” said Stancliffe, who is also professor emeritus at the University of Sydney. “We’re getting away from superficial participation headcounts and measuring time spent in certain environments, and we’re paying more attention to the subjective experience and whether people with disabilities actually feel connected, welcome, and safe enough to develop relationships in these settings. It’s no longer just about wandering through a shopping mall and passing a parade of strangers.”
Hall has devoted much of her career to studying and developing solutions to improve family and other relationships important to people with disabilities.
“We’re often so siloed in our disability topic areas of employment, education, transition, and others,” she said. “This project allowed us to group the different aspects of community life and show social inclusion as one, all-encompassing issue.”
Hall, who has an older brother with disabilities, focused on relationships from the very beginning of her research career.
“What I thought was important to my brother was having relationships and being part of the community, the church, volunteer efforts; to be seen as someone who is worthy of being a companion. Community participation is important, but it’s the reciprocal relationships that make the participation meaningful and lead to true belonging.”
Many schools, churches, and community organizations are adopting more progressive attitudes about inclusion, Hall and Stancliffe said, but it is not universal.
“Different organizations are at different places on this, and there are some that still find it difficult to embrace change,” Hall said. “For some, accommodations are a cost issue, others just don’t like change. We know a lot of churches believe they are very welcoming, and they don’t even know how some of their practices can be off-putting to people with disabilities.”
The review includes a section on virtual relationships and online safety.
“One study participant said she knew about the risks of meeting an online friend for the first time in person, but the risk of being lonely was even worse, so she was willing to take the risk,” Hall said.
Another critical area of life where social inclusion is often overlooked is in employment, Stancliffe said.
“Getting proper jobs and keeping them are very difficult tasks for people with disabilities, so all the attention is on that issue. Social experiences at work get surprisingly little attention, but are a really important part of our work lives, as many of us learned through the pandemic. It’s a real blind spot in the research.”
Even brief, congenial social encounters can play an important role in boosting an individual’s sense of social inclusion, the researchers noted.
“Quick interactions with a bus driver, shopkeeper, or someone you come across in the park can be quite important,” Stancliffe said. “If a person is supported to interact with people in these situations, once thought to be too minor to bother with, it can really help.”
And those quick encounters don’t have to turn into anything more, Hall said.
“It’s OK to just want an occasional hello and a brief chat,” she said.
To develop the deeper relationships that most people want as well, providing access to mainstream community groups with shared interests is critical, the research showed.
Thinking about funerals and end-of-life issues is also important for understanding social inclusion for people with disabilities, Stancliffe said.
“Even though people with intellectual and developmental disabilities are surrounded by death and will experience the death of friends and loved ones likely many times, sadly many are not told their loved ones are sick, or they are even kept from funerals with no opportunity to say goodbye. It’s one of life’s most important social events, and keeping the grieving and the memory-sharing from people with disabilities is a profound form of social exclusion.”
However well-intentioned the people are who keep their family members with disabilities away from these situations, they are really hurting them, Hall said.
“In all of these social situations, the one thing that sticks out to me as a family member of someone with disabilities is the fear for our loved ones,” she said. “I understand that fear, but we need to learn that by trying to forbid relationships or hide information, we are making our loved ones less safe because they won’t be equipped to develop good relationships.”
Aubyn Stahmer (left) and Amy Hewitt (right) at the University of California Davis. Stahmer is Director of the University Center on Developmental Disabilities (UCEDD) at the UC Davis MIND Institute. Hewitt delivered the keynote address on inclusion at the 2023 MIND Summer Institute on Neurodevelopmental Disabilities on July 28. Hewitt is Director of the Institute on Community Integration, which is the Minnesota UCEDD.
In a July keynote address at the UC Davis MIND Institute, ICI Director Amy Hewitt urged disparate segments of the disability community to work urgently, and holistically, for the inclusion of people with intellectual and developmental disabilities (IDD) in communities.
Decades after the passage of federal and state laws and regulations mandating accommodations to put people with disabilities on more equal footing in housing, education, and the workplace, the number of people with IDD who live in their own homes, attend school in fully integrated classrooms, and work in competitive employment remains stubbornly low, Hewitt said. The event was the annual MIND Summer Institute on Neurodevelopmental Disabilities in Sacramento, California.
The event created an opportunity for participants to engage in important discussions about how we can learn more about inclusion from one another and work together to create positive change, said Amber Fitzgerald, a program manager at the UC Davis MIND Institute.
“The keynote presentation by Amy provided an important look at inclusion across the lifespan and ignited conversations among participants that carried on throughout the day,” Fitzgerald said.
Hewitt pointed to persistent, significant stagnation for students with extensive support needs, about 97 percent of whom are still placed in separate schools or in self-contained spaces instead of in general educational settings. Fewer than a quarter of people with IDD work in competitive, integrated employment. Nearly half of adults with IDD said in surveys that they have been excluded from religious activities.
“We just haven’t gotten it right,” Hewitt said following the event. “We’ve had grand ideas, but we really haven’t figured out true inclusion, and that’s on all of us, because we created these systems. The silos we’ve built in the disability service community underscore the importance of us working together and learning from each other.” A mix of educators, health care providers, caregivers, individuals, and families attended the meeting.
Hewitt said she was struck by the number of people approaching her after the session who felt similarly.
“Many of them said these ideas really resonated with them. We’re all so focused on our niches, and if you’re a parent or a clinician or a teacher, you’re locked in on what’s happening right now for a child,” she said. “You really have to think about supporting people in every stage of life. If you’re working with an adult and have no context of their childhood and what came before, you’re missing out on a lot. And if you’re working with an infant and you don’t have expectations that higher education and a career will, one day, be an option for them, it has an effect.”
Fitzgerald said the comments in written feedback after Hewitt’s session echoed these thoughts. Combining empirical evidence from across the disability field with her experience as a family member of someone with disabilities was powerful, several attendees said.
It also reflects ICI’s breadth of research and training in educational policy, global disability rights, community living and employment, and early intervention. Several times a year, ICI’s full staff convenes to exchange ideas across those focus areas.
What’s needed now, Hewitt said, is to take that unified message into the broader community.
“We’ve built this disability support system for people with disabilities, but then we don’t have expectations of the wider community to be part of that. Whether it’s a faith group, schools, or just communities in general, everyone needs to play a role.”
U.S. Senator Tina Smith (left), who was represented at the event by a health policy staffer, spoke about the importance of disability advocates.
The Institute and partners from The Arc Minnesota recently met with staff members supporting Minnesota’s Congressional delegation as part of the annual Disability Policy Seminar, a virtual forum for advocating for high-priority issues that affect people with intellectual and developmental disabilities.
Participants included several fellows from the Minnesota Leadership Education in Neurodevelopmental and Related Disorders (MNLEND) program, Institute staff members, and several self-advocates.
“The people closest to the problem know it best and understand how to find solutions, so I’m grateful whenever my staff and I have the opportunity to speak with disability advocates and talk about ways we can make life better for those living with disabilities,” said U.S. Senator Tina Smith, who was represented at the event by a health policy staffer. “I look forward to continuing our work together and appreciate all their important advocacy.”
Macdonald Metzger, ICI’s director of outreach, said the annual event is a reminder to policymakers that the Institute is an important resource for them in understanding and advocating for issues important to people with disabilities.
“I highly appreciated having the opportunity to speak at the event as a constituent of U.S. Representative Dean Phillips,” said Milena Bates (MNLEND 2021-22), co-founder of the Minnesota Autistic Alliance. “I talked about the Transformation to Competitive Integrated Employment Act, which is a bipartisan bill that would create grants for states to aid in transitioning from subminimum wage to competitive employment by creating technical assistance centers and establishing reporting requirements. Minnesota is among the states with the highest number of employees working for subminimum wage, so inclusive employment and workplace training are extremely important here.”
The sessions were also an opportunity for legislative staff members “to hear directly from people with disabilities, their families, and other supporters about how policies affect their day-to-day lives,” said Barbara Kleist, program director for entrepreneurial and development programs at the Institute.
Kleist, the sibling of a person with disabilities, shared details about the current workforce crisis in Minnesota, as well as how the crisis is affecting her own ability to balance work while filling in gaps in staffing support her sibling receives.
“The visit was a great event and useful for anyone, but especially those engaging in academic or theoretical work because it encourages us to think through the pragmatic applications to people’s lives these issues have,” said Akeem Anderson (MNLEND 2022-23), a University of Minnesota J.D./Ph.D. student who is also enrolled in the Institute’s Disability Policy and Services Certificate program. “I was able to discuss disability funding and the economic disenfranchisement of people with disabilities. Our representatives are often very responsive and supportive of these issues, so I tried to think through the arguments and give them tools to advocate on our behalf.”
Amy Hewitt, PhD, is Director of the Institute on Community Integration at the University of Minnesota.
President Biden’s recent, wide-ranging executive order to improve our nation’s care system represents the most comprehensive step any president has taken to support care workers and family caregivers and to make care more accessible to working families.
We applaud this commitment to the direct care workforce, which includes childcare workers, personal care assistants, caregivers in nursing facilities, family caregivers, and direct support professionals. DSPs support individuals with intellectual and developmental disabilities in living full lives in their communities. Their complex work includes many tasks performed by caregivers, nurses, teachers, therapists, and more. And yet, this role is not well understood and has been overlooked in some of the recent news coverage surrounding the executive order. Efforts made to strengthen and professionalize the direct support workforce – evidence-based training, credentialing, mentoring, career lattices – can help raise the status of everyone working in direct care and will make a tangible improvement in the lives of people with disabilities. The April 27 reintroduction of legislation to create a standard occupational code for DSPs was welcome news and would create better understanding and measurement of the workforce. It would also help states determine more accurate reimbursement rates for support services.
Over the last three decades, through persistent advocacy, services for people with intellectual and developmental disabilities (IDD) have largely moved from segregated care in large institutions to a robust and highly varied network of community supports. Federal legislation codified the values of inclusion and access and the disability services field created a body of research and evidence-based practices that have resulted in meaningful advances in the self-determination and quality of life of people with IDD. Today, due to labor shortages and high turnover rates that pre-dated but grew far worse during the COVID-19 pandemic, many community programs for people with IDD across the country have started closing – some permanently. People in smaller residences are being moved to larger congregate facilities or back home to live with elderly parents. Waiting lists are growing. Most importantly, people with IDD, as well as their families, are experiencing dangerous service disruptions that put them at risk of losing their hard-won lives in the community. The gains made over decades are being reversed.
Meanwhile, the work of DSPs has become substantially more complex. They now support people with disabilities in a range of settings, including family homes, local businesses, intermediate care facilities, small group homes, vocational and day training programs. They work with people across the lifespan, helping them make informed decisions and seek competitive integrated employment, keeping them healthy and safe, dispensing medication, implementing medical intervention protocols, communicating with medical and other professionals, and identifying emerging signs of illness or disease. They provide assistance with daily living skills, encourage healthy lifestyles, and foster connections with family and friends. Their work requires skilled judgment and decision-making, teaching, counseling, creativity, and much more.
For all of this, DSPs earn about $14.50 per hour and their inflation-adjusted wages continue to decline. It is little surprise that the annual DSP turnover rate exceeds 43 percent.
The Institute on Community Integration at the University of Minnesota and other University Centers for Excellence in Developmental Disabilities have played an important role in training the support workforce and helping disability service providers respond to these challenges.
Our Direct Support Workforce Solutions group recently partnered with officials in Tennessee and Rhode Island to create tools and strategies for improving DSP recruitment and retention rates, for example. We’ve created realistic job previews that help explain the work to prospective DSPs, and stressed the importance of advocacy in the work. We also led a national effort to develop and validate the National Frontline Supervisor Competency Set, an important task in professionalizing the direct support workforce. We look forward to expanding these initiatives to recruit and retain workers as called for under the President’s executive order.
The President included disability in the conversation about our country’s dire caregiver shortage, and it is important to underscore the distinct roles played by professionals in this field. The solutions aren’t the same for a nurse or a direct support professional or an early childhood teacher, and it will be important to ensure that the training, education, and innovative funding opportunities created through this order address each of those fields.
As the President said, it will be up to Congress to make the additional, urgently needed investments in the care workforce, which will then need to be matched by state legislative bodies. The executive order opens a window of opportunity, however. If you have a loved one with a disability, or an aging parent, or young children, we urge you to let your representatives know how critical this workforce is to you and your family.
The Boston family are the cover story in the current issue of Impact, which is about engaging communities underrepresented in disability research.
The new issue of Impact highlights critical disability research questions derived from the recent State of the Science meeting at ICI’s Research and Training Center on Community Living (RTC-CL). The issue is also available in Spanish.
What, exactly, is cultural competence in a research context? How do people with disabilities from historically marginalized communities learn about job opportunities and how can we get information to them faster? What are the strengths of families in marginalized communities in relation to family support? How can we better engage people with intellectual and developmental disabilities (IDD) in all aspects of research into social inclusion and belonging and other important aspects of community life?
Engaging Communities Underrepresented in Disability Research spells out a long-overdue research agenda and includes a cultural framework for IDD research written by issue editor Tawara Goode, director of the Georgetown University National Center on Cultural Competence. Julie Bershadsky, director of ICI’s Community Living and Employment focus area; and Teresa Nguyen, director of the Community Living Equity Center at Brandeis University’s Institute for Disability Policy, also served as issue editors.
“It was refreshing to see this Impact issue come together, with a wide range of stakeholders contributing their personal stories,” Nguyen said. “The focus on improving research equity by increasing engagement in the disability community, especially those from minoritized groups, is a critical step in addressing disability equity.”
The cover story features the Boston family of Kalamazoo, Michigan. Leonard Boston is a board member of Parent to Parent USA, an organization for parents of children with disabilities. His article shares his family’s experiences becoming involved in research in the Angelman syndrome community.
Noting he and his wife, Latrieva, were often the only people of color at fundraising events for disability research, Boston shares what getting involved in research and advocacy has done for his family.
Another State of the Science attendee, Anjali Forber-Pratt, shares her personal history as a noted athlete and now director of the National Institute of Disability, Independent Living, and Rehabilitation Research.
“At my school, the Black students were bused in from the city and there was me and a Korean adoptee, who were essentially the students of color in the school,” Forber-Pratt writes. “We can’t be afraid to talk about that, to dissect it, and study it. The layers and systemic forces of oppression that I experienced are at the heart of what we mean by intersectional research.”
Other articles in the issue address the dynamics of race, culture, language and other factors on employment, families, social lives, criminal justice, and living arrangements of people with disabilities.
“The issue takes necessary and bold steps calling for equity, immediately, in the disability research community,” Goode said. “Persons who experience disabilities and their families from minoritized racial, ethnic, linguistic, and cultural groups share compelling stories that must drive the questions and approaches for a collaborative research agenda that has meaning in their lives and improves policy and practice in their communities.”
Bershadsky, one of the leaders of the State of the Science meeting, said the meeting and the Impact issue bring long-overdue attention to communities historically left behind.
“I am so glad to see this issue come together,” she said. “It brings forth voices that need to be heard, and thus far have not been heard from nearly enough. I am hopeful this is a harbinger of better things to come.”
Nao, a socially assistive robot, is the subject of an ICI research poster being displayed at CEHD Research and Innovation Day 2023 on March 23. The poster summarizes ICI’s collaboration with the University’s College of Science and Engineering that is exploring the use of robots equipped with artificial intelligence to interact with people who are aging and encourage them to be physically active. It is one of seven research posters that ICI is displaying at this year’s event.
“When we were talking about putting together our poster, I realized that three of the people who are working on the research grant with me are people with disabilities themselves, and I was just curious to know from them how they have experienced research poster sessions in the past,” said Tichá, a senior research associate at the Institute. “Do these events even matter to them?”
One of her colleagues, Roqayah Ajaj, who is blind, shared that she rarely attends these events anymore, in part because she doesn’t have consistent access to aides who can attend the event and accurately describe the posters.
That led to conversations about trying a few things for this year’s event to learn what accessibility measures worked or didn’t work. They created a braille version of their handouts, which were also made accessible for people who use screen readers. Another colleague reviewed the content for plain-language accessibility and helped create a glossary of terms that would make the research clear to a non-scientific visitor or someone with intellectual disability, among other ideas.
“Many times, speakers will point to their posters without describing the visuals, and if I have someone with me, they will try to describe them, but the information often gets lost, so my colleague, Emily Unholz-Bowden, and I are making sure that we not only have visuals but we are confident in engaging with people to describe them,” along with the technical accessibility features, she said.
The group’s work focuses on improving programs for youth with disabilities who are transitioning from high school to adult life, part of a five-year initiative with Minnesota’s Departments of Employment and Economic Security, Education, and Human Services; local education agencies, and other organizations.
“Through a landscape analysis we are trying to highlight the challenges of youth with disabilities who are roughly 16 to 23 years old,” Tichá said. “We’re finding that these programs can be quite segregated, but by having the state leadership on this project, we are hopeful that the transition tools being built will be used in conjunction with real opportunities to connect to competitive employment and integrated post-secondary education.”
Tichá also will lead a poster summarizing ICI’s collaboration with the University’s College of Science and Engineering that is exploring the use of robots equipped with artificial intelligence to interact with people who are aging and encourage them to be physically active. Enhancing Physical Activity Among Older Adults Using Nao, a Socially Assistive Robot (SAR) is funded through a CEHD Jump Start seed grant.
Nao can dance, ask questions, tell jokes, move around, and complete many other tasks, said Maryam Mahmoudi, an ICI researcher. Programmed to provide access to objects for individuals with physical disabilities and aging adults, Nao can also engage in reciprocal conversations with a high level of accuracy, and even understand a variety of accents.
“Right now, the applications are for encouraging physical activity and decreasing loneliness, but in the future, we hope it will be used for people with disabilities who want to live independently,” she said.
Unlike robots that speak from a list of programmed possible responses, Nao can engage in spontaneous conversation, Tichá said.
“It’s really exciting, despite some apprehension from service providers about having this robot interact with clients,” she said. “I understand family members who might be concerned about the implications of ChatGPT, but as a researcher I know we need to try this given the caregiver staffing shortage.”
Another Research Day poster, Exploring Post-school Goal Expectations of Students with Disabilities, is led by former ICI Director David R. Johnson and colleagues Yi-Chen Wu and Martha Thurlow. Particularly among students with significant cognitive disabilities who take alternative assessments and English learners with disabilities, Johnson said, there is still much work to be done to boost participation in planning for post-school transitions.
“This work centers around the long-term aspirations of students and how they think about achieving goals after high school,” Johnson said. “There are still a lot of gaps when it comes to whether families are receiving the information they need about opportunities, including how to finance postsecondary education opportunities, for example.”
Disparities in Service Access and Waitlists for People with Intellectual and Developmental Disabilities will highlight differences in service availability, and in the reporting of services, among states. These differences can mask important trends that highlight critical areas of need, said Jon Neidorf, an ICI researcher.
“Knowing about these differences matters in terms of understanding the urgency of services needed in a state,” he said. “States may report that they don’t even have a waiting list, but our poster will push back on that idea and show that doesn’t mean that people are actually getting a sufficient level of services.”
Understanding how states report this data can offer perspective on issues such as the staffing crisis, said Brian Begin, who works on the Institute’s Residential Information Systems Project, a longitudinal study of long-term supports and services.
“If states don’t have a sufficient number of direct support professionals, they won’t be able to support people with disabilities to come off the waitlist,” he said.
Another poster, The Self-Determined Career Development Model Supporting People with Disabilities: A Systematic Synthesis, will highlight the many barriers that people with disabilities encounter in seeking employment, said ICI’s Julie Kramme.
“A persistent approach with the appropriate level of support, along with opportunities for people to practice self-determination, will help people meet their goals,” Kramme said.
“Educators need fresh, actionable strategies to help them better understand the unique needs of students and their families,” Funfe Tatah Mentan said. “Particularly for families participating in individualized education plans (IEPs), language and cultural barriers and a lack of empathy from educators can lead to lack of access to educational resources or inequities in services.”
And Yue Wu, a post-doctoral fellow at ICI, will present her work with Light in the Well, an original music production promoting inclusion for individuals with disabilities.
Addressing self-injury among adolescents with intellectual and developmental disabilities (IDD) is typically quite different from the way it is addressed among those without IDD. A University of Minnesota graduate student is exploring the notion that, perhaps, it shouldn’t be.
Bringing together focus groups from across the mental health and disability fields, and across the world, Caroline Roberts (MNLEND 2020-21) is pursuing an interdisciplinary fellowship at the Masonic Institute for the Developing Brain’s TeleOutreach Center that bridges the fields of special education and adolescent psychiatry. The academic year-long project is helping inform her doctoral studies in educational psychology.
“The way we talk about and study and treat self-injury in people who do not have IDD is very different, and so I’m working on knowledge translation that I think could really benefit special education,” she said. “I’ve had incredible support on this from the self-injurious behavior (SIB) workgroup in the TeleOutreach Center and from my research team in the Department of Educational Psychology.”
The SIB workgroup creates interdisciplinary approaches drawn from the fields of disability, educational psychology, psychiatry, pediatrics, and rare disease.
“Caroline’s fellowship and emerging line of research cross over these disciplines using qualitative methodology, which is a novel approach,” said Jessica Simacek, director of the TeleOutreach Center.
It also brings an important voice and perspective to a complex problem, noted Adele Dimian, research associate with the TeleOutreach Center.
“We know that there are a lot of families struggling to find care and supports for SIB,” Dimian said. “Caroline’s work directly examines what providers are doing to address these issues and it is critical to facilitate our understanding of where the gaps are that are specific to SIB.”
Originally a little concerned that she might not be able to convince busy psychiatrists and behavioral therapists to participate in research, Roberts said professionals from both fields have been eager to join the virtual groups, which are specifically cultivated based on expertise and have already led to insights related to how self-injury is defined, studied, and treated.
“Everyone has been really excited to have these interdisciplinary conversations,” she said. She asks clinicians and researchers to discuss how they think about what is defined as self-injury and what treatments are appropriate. In the disability field, there is a tendency toward diagnostic overshadowing, or attributing all behaviors to a diagnosis of autism, for example, she said.
She hopes the facilitated discussions will inform her doctoral work, but they may also spur practical and research recommendations. She has already completed four focus groups and hopes to complete a half dozen more. She will perform a thematic analysis from the transcripts, and potentially publish the findings. She is recruiting early, mid-, and senior-level researchers and clinicians and has had both U.S. and non-U.S. participants.
“I’m getting the sense there is an urgency to this,” she said. “There are a lot of people who need help now, so I’m thinking about what I can get to clinicians who are actively supporting people, particularly people with IDD who have less available support.”
The work also holds personal urgency for Roberts, who has a brother with IDD who has struggled with SIB since early childhood.
“It is very much an ongoing journey for my family,” she said. “One of the ways I’ve learned to cope with it is doing work I find meaningful, which is exactly what this is. Being able to take my lived experiences and make something of it that feels like it has the potential to help others is really the best way I know how to cope.”
Jails and prisons are now the biggest source of incoming residents to large state-run institutions for people with intellectual and developmental disabilities (IDD). So, what does that mean for people with IDD?
Nearly 3 in 10 people moving into large, state-run institutions for people with intellectual and/or developmental disabilities (IDD) come from the criminal justice system. And 17 percent of people leaving those institutions go to criminal justice system settings.
Overall, it’s important to understand that in 2019, just 7 percent of people in large state-run IDD institutions had prior involvement with the criminal justice system. Acknowledging these findings and creating more opportunities for people with IDD to thrive outside of large facilities is the focus of a Feb. 14 Policy Forum.
The online event is from 11:30 to 1 p.m. on Feb. 14 and is free and open to the public.
Policy recommendations to be discussed include stabilizing the direct support workforce as a way to better support people with significant needs living in community settings, and studying how historically marginalized racial and ethnic populations with IDD fare in the criminal justice system.
“People with IDD experience tremendous harm at multiple points in the legal process, from wrongful arrests and convictions based on coerced confessions, to periods of legal limbo when they are found incompetent to stand trial due to their disability,” said Pamila Lew, senior counsel at Disability Rights California, one of the invited forum speakers. “Once incarcerated, people with IDD can be targets of violence, and they frequently experience isolation due to being placed in solitary confinement, supposedly for their own protection or as punishment for perceived non-compliance. I’m looking forward to the forum to discuss how we can work toward creating better options.”
The policy research brief draws on decades of research conducted at the Institute’s Research and Training Center on Community Living that tracks the living arrangements of people with IDD who receive long-term Medicaid or state-funded support services. The Residential Information Systems Project (RISP) annually surveys state IDD agencies and the remaining large state-run IDD institutions about the types and sizes of the places people with IDD receiving services live. The RISP has, over the last several decades, charted the dramatic decline in institutionalization of people with IDD as more people get the support they need while living with family members or in other community homes.
As the number of people living in state-run IDD institutions declined from 194,600 in 1967 to 16,200 in 2019, the proportion of people entering those facilities from jails and prisons increased to 29 percent, now the largest source of incoming residents. While 61 percent of people leaving state-run IDD institutions move to group homes, their own home, the home of a family member or a host or foster family home, the rest moved to another institution, most commonly a correctional facility.
“This movement to and from the corrections system deserves attention,” said Sheryl Larson, RISP director and an ICI principal investigator who has charted the deinstitutionalization movement since the late 1980s. “It would be even more helpful to have a clearer picture of the number and characteristics of all people with IDD in the criminal justice system.”
The percentage increase in people moving between institutions and the correctional system doesn’t reveal how prevalent IDD is in the overall corrections population, for example, Larson said. Except for some data tracking of juveniles in the corrections system, surveys also don’t capture comprehensive data on race, ethnicity, and other characteristics, she said.
“Movement of people with IDD between state-run IDD institutions and the correctional system is only a small part of the picture,” Larson said. “We know almost nothing about people with IDD in jails and prisons.”
Beyond the numbers, the policy brief lays out for discussion critical community needs for addressing the implications of the trends in institutional living.
“It comes down to what we can do in the policy world to advance community living for everyone,” Neidorf said. “If we firmly believe that community integration is of value to everyone with IDD, what are the key system changes that need to happen? These are a few things that need to be a lot stronger to support people who do have high levels of need but still deserve to be living in the community.”
Supporting people with intellectual and/or developmental disabilities (IDD) to move from large, state-run institutions to individualized community settings has been a foundational aim of the Institute on Community Integration for more than 30 years. With the end game in sight, what is left to be done?
A public forum on June 23, 2022 discussed stark differences among states in their approaches to ending institutional care, challenges threatening the progress of deinstitutionalization, research documenting how the lives of people with IDD changed after moving into community settings, and policy recommendations for supporting all individuals with IDD in home and community settings.
ICI’s Sheryl Larson presented her recent Policy Research Brief,Are Large Institutions for People with Intellectual and Developmental Disabilities a Thing of the Past?
“A lot of states have already figured this out, including 17 that have completely closed their institutions,” said Larson. “So, what do we have to do now so we don’t forget the people who still live in institutions? How do we make sure we aren’t forgetting them?”
Families play a critical role, Larson said, but also face daunting challenges today because of the shortage of caregiving and direct support professionals, made worse by the global pandemic.
“Since 1998, we’ve more than doubled the number of people receiving publicly funded supports while living with a family member,” Larson said. “Very few people have entered large, state-run institutions since then, but we must shore up the workforce supporting those who are living in the community.”
Mary Sowers, executive director of the National Association of State Directors of Developmental Disabilities Services, and Celia Feinstein, former executive director of Temple University’s Institute on Disabilities, discussed the implications of the research for the field at the event.
Larson, director of the Residential Information Systems Project (RISP), is continuing a line of research on residential services and deinstitutionalization for people with IDD that was started in the 1970s by founding ICI Director Robert Bruininks and Charlie Lakin, former director of the Research and Training Center on Community Living (RTC/CL). The RTC/CL provides research, training, and technical assistance focused on supporting people with IDD to fully participate in their communities of choice.
RISP is a federally designated Longitudinal Data Project of National Significance for the Administration on Community Living, part of the U.S. Department of Health and Human Services. Earlier this year, ICI published a RISP report examining the living arrangements of people with IDD from 1977 to 2018, which projected the number of people with IDD living in large, state-run institutions could approach zero by 2025.
“ICI has partnered with the disability community for decades and many institutions are now gone, so it’s a little bit of a celebration, but we are not done,” said Larson. “We cannot forget the people who are still living in congregate settings. We’ve got 30 years of research backing up the assertion that people have better lives when they live in settings where they can make choices about how they live.”
Cow Tipping Press founder Bryan Boyce (MNLEND, 2020-21) recently wrapped another series of the organization’s writing courses for adults with intellectual and developmental disabilities (IDD), bringing the cumulative number of students served to nearly 600.
Through networking conversations with fellow MNLEND alumni, Boyce has begun offering courses beyond Minnesota’s borders, a result of the surge in interest for online learning due to the pandemic. Most of the coursework can be completed online, but the Cow Tipping team goes on location at the end to present published books featuring students’ work and celebrate the experience.
The five-week classes are still offered three times a year in Minnesota, Cow Tipping’s home, as well. Some individuals take the courses, but organizations typically fill most of the available slots.
“We teach and publish writing by people with disabilities and see that as a new or different way of thinking about, valuing, and uplifting the voices of this diverse population,” Boyce said recently from Cow Tipping’s loft office in Northeast Minneapolis. “It’s exponential the amount of writing that is done about people with IDD versus by people with IDD.”
With a name derived from one of its first author’s literary works, Cow Tipping earns revenue from donations as well as contracting with partner organizations to deliver classes. It is sponsored by a nonprofit organization, Springboard for the Arts.
Partnering with larger service organizations looking to provide meaningful inclusive experiences for adults with disabilities is critical to keeping the presses rolling, said Boyce, who was inspired to start the organization after noticing the creativity of his brother Jay, who lives with IDD. After students take the Cow Tipping course twice, they can become paid teachers of the writing courses, so the organization staff itself is a mix of people with and without disabilities.
“The people we work with often have more creative talent than their neurotypical peers,” he said. “And why is that? Well, what’s valued in creativity? It’s using language in a different way or being spontaneous or quirky.”
Beyond the networking opportunities, Boyce said the MNLEND experience is still serving him today as he navigates different attitudes and perspectives on neurodiversity.
“Something I really valued was the wide diversity of perspectives in LEND, even the ones that were a little tough to listen to sometimes,” Boyce said. “At Cow Tipping, we are rooted in the social model of disability, and to be able to run an effective organization we have to collaborate with organizations that may have a different model. Connecting across differences has really helped me in the work we do.”
Those non-linear connections and partnerships, not unlike a cow path, are critical for the organization’s growth, he said.
“Not being a fully grant-funded program, we can be nimble and really creative in how we accomplish inclusion, but the tradeoff is that we have to hustle a lot harder to sustain the business model,” he said. “There are many more people who could be telling their stories.”
The Institute on Community Integration will lead a Project of National Significance from the Administration on Community Living designed to increase independence of Minnesota’s youth and create pathways to post-secondary education and employment.
Under the five-year, $1.4 million award, the Institute will collaborate with Minnesota’s Departments of Employment and Economic Security, Education, and Human Services; three local education agencies; several community-based employment and self-advocacy organizations; the Minnesota Inclusive Higher Education Consortium, and Utah State University.
The project—A Community-Based Collaborative Transition Model for Minnesota Youth with Intellectual and Developmental Disabilities (IDD) —will use a number of collaborative approaches to engage diverse community stakeholders. The team will develop a tiered framework for youth with disabilities transitioning from high school to careers, higher education, and independent community living. The person-centered, inclusive, culturally responsive framework will be designed to address the economic and educational needs of Minnesota communities. The framework will be piloted in three transition programs, in the Minneapolis, Stearns-Benton, and Rosemount-Apple Valley-Eagan public school districts.
“Interest in this work from state, educational, and community agencies was quite high and exceeded our expectations,” said Renáta Tichá, principal investigator of the project. “The work will support the self-determination and empowerment of youth with IDD to pursue their life goals.”
Worker shortages in many areas of the economy, along with an increasing portion of jobs requiring post-secondary education, bring urgency to the project, said Brian Abery, co-principal investigator.
“This project provides us with the opportunity to replace one-size-fits-all transition services with an individualized, person-centered approach that increases the quality of life of young Minnesota adults with IDD.”
Under a new grant from the U.S. Embassy in Tokyo, ICI‘s Global Disability Rights and Inclusion Program area will explore the use of robotics to support people with intellectual and developmental disabilities (IDD) in employment and other aspects of community life in the United States and Japan.
ICI’s Renáta Tichá, Brian Abery (pictured), and Matt Schuelka will collaborate with partners from Ory Laboratories in Japan, The University of Tokyo, and the University of Wisconsin-River Falls to adapt the use of Ory’s “avatar” robot, OriHime. OriHime initially was created to perform tasks that were controlled remotely by people with physical disabilities who were working from home. A café in Tokyo, which opened this summer for a few days of trial operations, used the robots to serve customers and run the store.
The partners will now explore how to use the robots to foster the employment, self-determination, and community inclusion of people with IDD, joined by students and professors from the University of Minnesota’s Department of Computer Science and Engineering.
“Our colleagues around the world have made it very clear that work is what makes people with and without disabilities feel useful and connected to the community,” said Abery. “At the same time, we are desperate for job coaches, who support people with IDD in the workplace. So, we thought, ‘What if a job coach with a physical disability could be offsite, and be in charge of several of these robots that would be supporting workers with IDD?’ It could open up a lot of potential job coaches if they didn’t physically have to be at the workplace.”
The University of Tokyo’s Shinichiro Kumagaya, a pediatrician and associate professor at the Research Center for Advanced Science and Technology, is among the global partners on the project. As a person with cerebral palsy who uses a wheelchair for mobility and who also directs the University’s disability services office, Kumagaya contributes lived experience to the initiative, along with his technical expertise.
The collaboration is an exploratory step, but will also include a visit to Japan by the U.S. partners to learn about other potential uses of robotics to foster the inclusion of people with IDD in the workplace and to enhance employers’ capacity to hire workers with disabilities.
“We’re excited to work with the engineering department and with the delegation from Japan and to have a robust exchange of ideas that will lead to new technologies that are useful to people with disabilities,” Tichá said.
Exclusive research data on COVID-19 mortality rates among people with disabilities, insight from leaders in the disability field on the effect of multiple crises, and practical tips on maintaining education and well-being in the face of disaster are all available now in the just-launched issue of Impact.
“The last year has tested us in previously unimagined ways,” said Laura Stough, a professor of educational psychology and assistant director of the Center on Disability and Development at Texas A&M University. “This edition provides unique perspectives about people with disabilities experiencing emergencies and crises and represents remarkable additions to the disability literature.”
Stough served as an issue editor for the Impact Special Issue on Crisis Management for People with Intellectual and Developmental Disabilities, along with Mary Sowers, executive director of the National Association of State Directors of Developmental Disabilities Services, and Renáta Tichá, co-director of the Global Resource Center for Inclusive Education at the Institute on Community Integration. Impact is published by ICI and the Research and Training Center on Community Living and Employment, in part under grants from the U.S. Department of Health and Human Services. Each issue is dedicated to a topic of importance to the disability community. This issue’s editors also wrote a feature article on the inequities people with disabilities face during and in the aftermath of disasters and crises, from the pandemic to natural disasters to social unrest.
Other articles include new research on the COVID-19 case-fatality rate for people with IDD, written by Margaret A. Turk, a professor at SUNY Upstate Medical University, and Scott Landes, associate professor at Syracuse University. Longtime disability community leader Kim Keprios contributes a deeply personal story about the death of her brother Mike during the pandemic. Inclusion International’s Sue Swenson contributes an introduction to a series of articles about the lessons learned from historical disasters. Georgetown University’s Tawara Goode delves into the intersection of disability, race, and ethnicity during the pandemic. Authors in the field of special education write about distance learning during the pandemic, and a group of nurses who specialize in caring for patients with disabilities share their personal frustrations with the medical community’s response to the pandemic. Several self-advocates offer their own stories of living through crises, among other articles.
“The voices of the disability community are diverse, and yet reveal interrelated experiences. The contributions in this edition provide a multi-layered and intersectional portrait,” Stough said.
“My hope is that we borrow from the learnings represented in this edition to further strengthen the disability community, and find new methods of providing inclusive and accessible services in emergency and crisis management.”
Siblings of people with intellectual and developmental disabilities (IDD) are frequently involved in their brother’s or sister’s life longer than anyone else in their family, but they are often overlooked by service providers, family members, and others. The new Impact issue from the College’s Institute on Community Integration (ICI) delves into these important and dynamic relationships over the life course.
Led by guest editors from across the country who are leading voices in the sibling community, the issue explores what we know about siblings’ roles and needs across the lifespan, their feelings about themselves and their siblings, and how to support them. It includes their personal stories, profiles of organizations around the world that are giving them a place to connect with one another, strategies and resources for addressing their concerns, and research findings about them. Guest editors from outside ICI were Katie Arnold, executive director of the Sibling Leadership Network and community education director for the Institute on Disability and Human Development at University of Illinois at Chicago; Emily Holl, director of the Sibling Support Project, Bellevue, Washington; and Emily Shea Tanis, co-director for policy and advocacy at the Coleman Institute for Cognitive Disabilities at the University of Colorado, Boulder.
“As a sibling of a brother with multiple disabilities, I have often felt my situation was too different for others to understand. This issue reminds me that I am connected to a larger group of siblings who really understand my experiences,” said Sarah Hall, an ICI research associate who served as a guest editor for the issue. “This issue is also essential for helping parents and professionals to understand the sibling experience and support siblings throughout their lives.” Another guest editor from within ICI, Jerry Smith, contributed a personal essay about his sister Gayle and her influence on his career.
Published by ICI and the Research and Training Center on Community Living and Employment,Impact is supported in part by grants from the U.S. Department of Health and Human Services and the National Institute on Disability, Independent Living, and Rehabilitation Research.
Articles in the issue range from an academic look at how sibling roles and needs change over the course of their lives, to very personal stories of family experiences, to important public policy issues and advice on handling grief and loss issues. Both print and online versions of the issue point readers to multiple sources of further information on sibling issues.
The issue also pays tribute to Vicki Gaylord,Impact’s managing editor, who is retiring from ICI after nearly 32 years of service. Under her leadership, more than 70 issues of the magazine have been produced, in addition to her other responsibilities.
“This magazine has without question moved us toward greater inclusion, self-determination, and empowerment of people with disabilities,” Smith said in the tribute. “For this, we owe Vicki a tremendous debt of gratitude.”
Check & Connect staff from the College’s Institute on Community Integration partner with Micronesian school officials and social workers to promote school engagement.
Returning home after a six-week U.S. State Department fellowship to study techniques for making education more inclusive for people with disabilities, a group of seven Ukrainian professionals built a network of more than 2,000 educators, administrators, parents and people with disabilities that is lifting the visibility of the disability community in Ukraine.
In the Federated States of Micronesia, local school officials and social workers are learning how to connect with parents of students at risk of dropping out, adapting a popular U.S. intervention program called Check & Connect to their own culture.
An entrepreneurial tailor in Kenya is adding a new $75 sewing machine that will allow him to employ another worker with disabilities to create school uniforms, demonstrating the economic ripple effect of even small dollars invested in job-skills training.
Woven deep in a global tapestry of conflict, protectionism, and uneven funding in 2020 are threads of cultural understanding—fostered by ICI staff members and their international partners—that are sustaining progress in the quest for the full inclusion of people with disabilities in their communities.
“Part of our responsibility in working at ICI is to support and build capacity for inclusion and participation, not just in the United States but all over the world,” Tichá said. “If you’re not building relationships, discovering unmet needs and developing creative and culturally appropriate means to meet them, you’re not fully utilizing your skills.”
The new issue of Impact magazine from the College’s Institute on Community Integration (ICI) explores how people with disabilities are experiencing self-determination today, including how they are using Supported Decision-Making (SDM) and other strategies to replace court-appointed guardianship, improve their education, and design lives that better reflect their values.
“The whole concept of self-determination has changed dramatically in the 30 years we’ve been researching it,” said Brian Abery, co-director of ICI’s Research and Training Center on HCBS Outcome Measurement. “Today it is much more complex and includes supporting people with the most significant disabilities to have the amount of control they want over their lives.”
Abery and Renáta Tichá, co-director of ICI’s Global Resource Center for Inclusive Education, served as guest editors for the issue, along with Jonathan Martinis, senior director for law and policy at the Burton Blatt Institute, Syracuse University; and Karrie Shogren, director of Kansas University’s Center on Developmental Disabilities.
Articles include an update on state legislation and trends in using SDM to advance self-determination and other favorable outcomes in the lives of people with disabilities, visions of future directions from leaders in the disability community, and compelling personal stories of both self-determination and self-advocacy.
“I was told in high school that I could not continue my education because it was a waste of my time and my teachers’ time,” wrote Roqayah Ajaj, originally from Saudi Arabia and now a PhD student at the University of Minnesota. Despite several obstacles, including the challenges associated with blindness, Ajaj is pursuing her dream of improving education for people with disabilities.
The issue’s cover story highlights Ryan King and his family, who fought a lengthy legal battle to end Ryan’s court-appointed guardianship, replacing it with SDM.
Global perspectives on self-determination also are addressed.
“People with disabilities in countries such as Armenia, Russian Federation, Kazakhstan, Tanzania, and Kenya have begun to exercise self-determination in their lives,” writes Tichá, citing influences from the adoption of the 2006 United Nations Convention on the Rights of Persons with Disabilities.
In many areas of the world, however, self-determination and SDM in particular still are fledgling concepts, Tichá said.
“Given their different cultures and histories, you cannot expect self-determination to look the same in every country,” she said. “For many, the focus is still on the physical inclusion of people, and they haven’t moved to the point of advocacy. It’s not going to happen overnight.”
Renáta Tichá and Brian Abery at the College’s Institute on Community Integration (ICI), in collaboration with principal investigator Satomi Shinde from the University of Wisconsin—River Falls, have received $96,000 in funding from the Tommy G. Thompson Center on Public Leadership for a one-year grant entitled, Improving the Self-Determination of Students with Intellectual and Developmental Disabilities in Wisconsin. Tichá and Abery, who are the project’s subaward principal investigator and subaward co-principal investigator, respectively, will work with Shinde to develop an education and technical assistance program for middle and high school teachers in 10 schools (five middle schools and five high schools) in Wisconsin, providing them with strategies to support self-determination among their students with intellectual and developmental disabilities (IDD). “This project offers us the opportunity to apply what we have learned about self-determination over the last 15 years of working with adults with IDD to a younger group in the hopes of supporting their transition from school to work and inclusive community living,” says Abery. Tichá and Shinde were fellow PhD students in the Special Education program at the University of Minnesota a decade ago. “This presents an opportunity to reconnect in an area of common interest of supporting special and general education teachers to incorporate self-determination into their daily inclusive teaching practice,” says Tichá. The University of Wisconsin—River Falls is the lead institution on this project.
David R. Johnson (right) receives award from George Jesien at AUCD conference.
On November 13, ICI’s David R. Johnson received the George S. Jesien Distinguished Achievement Award at the Association of University Centers on Disabilities (AUCD) Annual Meeting in Washington, DC. This national award recognizes an executive, faculty or staff member from a University Center for Excellence in Developmental Disabilities (UCEDD), Leadership Education in Neurodevelopmental and Related Disabilities (LEND) program, or Intellectual and Developmental Disability Research Center (IDDRC) who has demonstrated a distinguished career of excellence and leadership in support of AUCD’s mission to advance policy and practice for and with people living with developmental and other disabilities, their families, and communities.
Johnson, who directed ICI from 1997 until June 2018, was nominated by the current director, Amy Hewitt,and David O’Hara of the Westchester Institute. “Dr. Johnson has a lifetime of leadership, service, scholarship, published authorship, as professor and mentor,” they wrote in their letter to the AUCD Award Committee. “For nearly 40 years, Dr. Johnson has devoted his career to improving education and transition services for people with intellectual and developmental disabilities through research, demonstration, teaching, and education. Without question, Dr. Johnson has made significant contributions to dissemination of knowledge in the field of intellectual and developmental disabilities that have made an impact at a national and international level. His resume could come in chapters but has a simple theme: equality, access, and opportunity for all persons with disabilities.”
“David is the iconic scholar and gentleperson who has always been ready to help, to listen, and to offer support to friends, colleagues, and students alike,” said George Jesien, the former AUCD Executive Director for whom the award is named and who presented the award to Johnson. “His engagement in any discussion invariably raises the level of discourse, bringing new information, relevant historical facts, along with the rare ability to focus in on details while maintaining a thorough recognition of the big picture. David Johnson is an accomplished researcher, effective teacher and mentor, a highly respected administrator, and incredibly productive professor who is eminently qualified to be recognized for his commitment and contribution to the field of disabilities and to the AUCD network of centers.”
“I have enjoyed a wonderful, fulfilling career,” said Johnson (pictured at right with George Jesien) as he accepted the award. “And I have come to fully recognize that my work with the members of this organization influenced my conviction that our great universities are essential partners in advancing the public good through our interdisciplinary research and education, and sustained community engagement. It is important for us all to recognize that the work we do makes a difference in people’s lives.”
Johnson continues to work on ICI research and development projects focused on the transition of youth with disabilities from school to further education, employment, and community living. He is also professor and coordinator of graduate programs in evaluation studies at the College’s Department of Organizational Leadership, Policy, and Development.
The College’s Institute on Community Integration (ICI) has begun its 33rd year of operation with the appointment of a new director, and the award of renewed five-year funding. On July 1, Dr. Amy Hewitt became ICI’s director, the fourth to hold that position since ICI was established in 1985. The Institute also received renewed federal funding from the Administration for Community Living, U.S. Department of Health and Human Services, which continues ICI’s designation as a University Center for Excellence in Developmental Disabilities (UCEDD).
A national leader in the disability field, Hewitt is president-elect of the Association of University Centers on Disabilities (AUCD) and a past president of the American Association on Intellectual and Developmental Disabilities (AAIDD). In Minnesota, she has served on the board of The Arc Minnesota, and several state level advisory and work groups, where she emphasizes community collaboration. She currently serves on the statewide advisory committee of the Minnesota Disability Law Center.
“I am honored, humbled, and looking forward to the opportunities and challenges to continue our mission-based work to improve policies and practices to ensure that all children, youth and adults with disabilities are valued by, and contribute to, their communities of choice,” Hewitt says. ICI’s renewed core funding as a UCEDD will support the Institute’s continued engagement in collaborative research, training, and outreach in partnership with service providers, policymakers, educators, advocacy and self-advocacy organizations, researchers, families, and individuals with disabilities around the world. The first year’s funding award is $547,000 in federal funds, with a $200,000 match from the University of Minnesota’s College of Education and Human Development.
