New Impact: Engaging diverse communities

March 22, 2023

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.”

7 ICI teams featured in CEHD Research Day

March 22, 2023

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.

Preparing with several colleagues for CEHD Research and Innovation Day 2023 on March 23, the Institute on Community Integration’s Renáta Tichá decided to step back and really think about how community members and fellow researchers experience these information-sharing events.

“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.

Innovative Tips: Engaging Parents/Caregivers who are Culturally and Linguistically Diverse will be presented by ICI’s Charity Funfe Tatah Mentan and Marianna Quanbeck.

“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.

Opening doors, and minds

February 16, 2023

A massive open online course (MOOC) designed by Wendy Looman, a faculty member for ICI’s Minnesota Leadership Education in Neurodevelopmental and Related Disabilities (MNLEND) program, focuses on families with young children, and how elements of their environment, such as housing or access to nutritious foods, influence their outcomes.

The course is part of a Coursera specialization created by Karen Monsen and Daniel Pesut, both of the University of Minnesota’s School of Nursing. The specialization was recently listed as one of the 25 most popular free university courses by Class Central, a provider of online course listings. Looman, who chairs the school’s Child and Family Health Cooperative, said the Coursera series focuses on how to use data to create action related to the social determinants of health.

“This course has been a great way to get this content out to a really wide readership, both internationally and among people who wouldn’t typically have access to college-level classes,” Looman said. Coursera is one of the largest online learning platforms, with about 92 million registered users as of 2021.

“All of these issues are ones that resonate with the principles of the LEND program,” Looman said. “It’s thinking systemically about children’s health. One example is public housing. A family can do all it can to keep a child healthy, but if the landlord doesn’t keep the building up to code or there isn’t a policy protecting air quality in that building, that family has very little ability to change that. If a family experiences racism, or lacks access to healthy food, or has challenges getting time off work to attend school functions, all of that affects a child’s health.”

And while the course is directed at all families, these factors are amplified for families of children with disabilities, Looman said.

It was no surprise to Rebecca Dosch Brown, ICI’s interdisciplinary education director, that the course is so popular.

“The MNLEND fellowship has been very fortunate to have Wendy as part of its core faculty,” Dosch Brown said. “She brings both thoughtfulness and cultural responsiveness to the forefront when teaching fellows the research-based approaches to improving systems of care for families and children with chronic health care needs. Her contributions create meaningful career opportunities for fellows that also make a real difference for families.”

Throughout her career, Looman has focused on health as something that goes far beyond a single individual.

“It’s about the role of professionals in helping families navigate the complex systems around them,” she said. “We have an obligation to understand this in the nursing field, and our students go out into family homes to learn what it’s like to raise a child. We help future providers be more aware of what goes into the family experience.”

Field inquiry, in fact, is what attracted Looman to MNLEND.

“Every time I talk with LEND students, I’m just so impressed by the good work they are already doing in the world and they just get this systems approach,” she said. “This is a collection of people who largely are already passionate family advocates. I wish more people could go through this program.”

Getting more attention for the ideas in the course couldn’t come at a better time, when health care professionals are dealing with nursing shortages, the lingering effects of the pandemic, and the expanding roles nurses are assuming.

“We become so specialized and fragmented that we can forget the voice of the people we are doing this work to help,” she said. “Our skills in listening and being present are so important. It’s the biggest message I try to give to all my students.”

Awareness raised in Congo

February 16, 2023

Promoting disability awareness in Congo.

Wrapping up work on a U.S. State Department grant to combat human rights abuses in the Democratic Republic of the Congo (DRC), a team led by the Institute on Community Integration recorded an uptick in positive attitudes toward disability in a random survey of 1,000 people in the DRC’s fifth-largest urban area.

Compared with attitudes in the region as the two-year project began, respondents reported more positive behaviors and awareness of the rights of people with disabilities, said ICI’s Lynda Lahti Anderson, who, along with Macdonald Metzger, led several initiatives to connect with local media and to support people with disabilities to tell their stories and learn media skills.

“We were actually quite surprised to see an increase after a relatively short time. It’s important to note that the second survey was a different group of respondents, but we did have a number of areas where there was a positive change in people’s attitudes about disability,” Anderson said.

One manager of a medical center who participated in the survey said he had heard about the advocacy trainings going on in the area, and it prompted him to make some accessibility improvements at the center.

With a partner, Jacques Yaetema, the team developed a how-to guide for advocates working to make polling places more accessible.

“A lot of projects we’ve seen in the past have helped young people with disabilities learn new skills, like shoe repair,” said John Ntonta, founder of the Kadiwaku Family Foundation, who partnered with ICI on the work. “In Kisangani, where we believe 80% of people with disabilities are left behind when accessing essential services and humanitarian aid, helping people with disabilities understand their human rights and how to advocate for them is crucial.”

During one of the ICI training events, Ntonta’s foundation formed a coalition, Kisangani Disability Rights Advocates, which promotes disability rights.

“We’re seeing a lot of organizations and movements step up for disability rights, demanding that the state be held accountable for ensuring that everyone has equal and meaningful access to essential services and employment opportunities,” Ntonta said. “Now, we need capacity-building programs so people with disabilities can acquire the skills they need.”

The organizations are doing laudable work with few resources, and most of them are aimed at a specific concern or disability, Anderson said.

“We shared with them that while they are all doing good work, they were doing it alone. If you get together, pretty soon you are a powerful force.” She also shared some of the history of disability advocacy in the United States.

“We did a short training at the right moment, and they really took it from there,” Anderson said. “What they’ve accomplished in the last year is astounding to me.”

Learning, not judging

February 16, 2023

More than 200 Minnesota professionals, mostly K-12 school personnel, learned the latest techniques to support children and families affected by the opioid epidemic through a recent training series facilitated by the Institute on Community Integration.

The training was part of Project SCOPE (Supporting Children of the OPioid Epidemic), a national initiative focused on supporting children born with neonatal abstinence syndrome (NAS) and/or neonatal opioid withdrawal syndrome (NOWS). The series aims to build a community of practice among early childhood providers, but also connects other professionals and family members to help promote understanding about the effects of opioids on child development and provide a wide array of support services. A large number of attendees were from greater Minnesota, outside of the Minneapolis metro area.

“It just brought to the forefront that I need to consider trauma and the experiences of parents and children prior to my meeting them,” one attendee said of the training.

Several participants said the series brought them new perspectives on the opioid epidemic, causing them to think differently about how best to reach families from diverse backgrounds, said Drake Bauer, project coordinator of ICI’s work on the SCOPE series.

The series includes sessions on how opioid exposure affects child development, and on strategies for better understanding trauma and healing in historically marginalized communities. It also explores recovery planning and positive support strategies for children experiencing behavioral challenges. The series used the ECHO™ virtual training model, or Extension for Community Health Outcomes. The model promotes health equity by building a community of practice to share expertise, reduce disparities, and increase access to care or services.

Jennifer Hall-Lande led ICI’s work on Project SCOPE and often references Sanjeev Arora, a liver disease specialist who developed the model in an effort to educate primary care physicians about the early signs of liver failure. His model, which prevented many deaths, incorporates technology, best practices, family story, and data to monitor outcomes.

“Knowledge needs to be shared. It shouldn’t just be in university settings or large cities. It is our role to share our knowledge and also to learn from the community,” Hall-Lande said. “The opioid crisis in America is a public health emergency, and it only increased during the pandemic. The long-term developmental effects that schools are seeing today are significant, but there are a lot of things we can do very early to intervene.”

That begins with recognizing signs of developmental delays, she said, pointing to a host of free materials at www.cdc.gov/actearly , including mobile apps and trackers to help professionals monitor developmental milestones.

“This work is about building knowledge and skills in working with families experiencing addiction. It is not about judging parents. Recovery is hard work and it goes day by day,” Hall-Lande said. “So, we try to recognize this and to bridge the worlds of healthcare and education.”

Northrup King: New art exhibition

February 16, 2023

Art Glow, an exhibition running Feb. 2 through March 30 at the Northrup King Building in Minneapolis, feels more like a street art fair than a traditional gallery show, and that’s by design.

The diverse mix of art by a diverse mix of artists with disabilities – from disability justice storytelling by Alison Bergblom Johnson to visual works by a variety of artists – come together in a space resembling a fair with individual booths and artists selling smaller projects rather than more formal, large-scale gallery hangings.

“Art isn’t always about selling, but when you sell a piece, it does tend to feel purposeful and validating,” said Nik Fernholz, program manager for ICI’s Art for All, the Stephanie Evelo Program for Art Inclusion. “We are very excited about the broad range of pieces in this exhibition and the broad range of experiences of the artists involved.”

On Feb. 16 at 6 p.m., Bergblom Johnson, a multidisciplinary artist, will discuss “Disability Justice Through the Lens of Art and Supporting Non-disability-focused Galleries Curating Art by Artists with Disabilities.”

And on March 2 from 7 p.m. to 9 p.m., Cow Tipping Press will host a book release and author reading. A closing reception and market is planned for 4 p.m. to 7 p.m. on March 30.

Featured artists include Emma Baldwin, a member of ICI’s Community Advisory Council and a former MNLEND fellow, who will perform a reading during the Cow Tipping event. That event will be the launch of Cow Tipping’s newest published books, with covers featuring artwork from Art for All’s permanent collection.

In addition to her Feb. 16 artist talk, Bergblom Johnson will display small line drawings depicting a series of encounters in early online dating that also informed her storytelling projects dealing with mental health, gender, disability, and joy.

“Disability can be a hard reality, and I’m going to talk about some of the practical things that art administrators can do to be inclusive of people with disabilities,” she said.

The 75-piece exhibition includes works on video, film, canvas, graphite, and fiber. Other featured artists include Sam St. John, Ryan Varley, Ray Pagenkopf, Nathaniel Quenzer, Mark Massch, David “Mack” McDonnell-Forney, Diane Weinerman, Chloe Geraty, Ansel Langmead, D.O Fox, Glendy Scaletta-Rocco, Jonah Anderson, and Loretta Bebeau.

The exhibition will feature some work that is not for sale, including pieces by David Bauman, a visual artist born with Down syndrome who was a close friend of Stephanie Evelo. Bauman died in 2019 from complications from Alzheimer’s disease at the age of 49. Stephanie was a gifted artist and an ICI employee whose parents, Sheryl and David, founded Art for All in partnership with ICI.

“David [Bauman] went through many phases with his art over the years, but in 2005 we went on a family vacation to Hawaii and he fell in love with everything he saw,” said Margaret Bauman, David’s mother. “He loved the ocean, the volcanoes, the color, everything.”

Returning home after the trip, Bauman created art with Hawaiian themes, and he eventually lived in Hawaii for several years.

“As a person, he had a wonderful sense of humor and really enjoyed people,” Margaret said. “He took inspiration from so much of what he saw, and it was reflected in his art. Even as a performer with Interact in Minnesota, he loved to imitate animals in any scene that called for that. He was the epitome of love, making anyone feel good just by being around him.”

“Respect is universal”: Olmsted County taps person-centered training

February 15, 2023

Sheriff’s deputies at the Olmsted County jail in Minnesota. DirectCourse is on the computer screen.

After decades working in law enforcement and years spent volunteering with Special Olympics, Capt. Macey Tesmer knew that if for some reason her young relative with Down syndrome ever got arrested or had to face police questioning, the relative would have a very difficult time answering in a way that many officers expect.

“Getting arrested is stressful for anyone, and for someone with disabilities it’s just that much more challenging,” said Tesmer, operations captain for the Olmsted County Sheriff’s Office. Tesmer also understands how officers can become frustrated when working with detainees who don’t seem to want to cooperate.

To improve officers’ understanding about disability, Olmsted’s Adult Detention Center has a dedicated team of 15 detention deputies trained in working with people with intellectual and/or developmental disabilities (IDD). Most of them have loved ones with disabilities or previous experience in the disability field. On just about every work shift, there is someone on the team available to respond to people with disabilities.

Sgt. Aaron Budensiek, who has a teenage son with autism, helps direct the team and assisted Capt. Tesmer to advocate last year for some additional training resources from the Institute on Community Integration that explain disability history and the social services system.

“I look at it as, the more tools and training we have, the better,” Budensiek said.

The training is part of DirectCourse , an online learning management system developed by ICI’s Research and Training Center on Community Living through a partnership with Elsevier that helps professionals and families support people with disabilities. DirectCourse is available to organizations and states across the country, and is currently available to Minnesota organizations through the Minnesota Department of Human Services .

ICI is providing support and technical assistance to the Olmsted County Sheriff’s Office to organize the content into training modules most useful to law enforcement personnel, including person-centered approaches, disability advocacy, and mental health support.

“Our work to build this team started four or five years ago when one of our employees, who had worked in the disability field, saw a booking officer grow frustrated when an arrestee wasn’t responding to questions,” said Tesmer. “We all had to learn that there just might be some information we’re not going to get right away, and that a typical 20-minute booking might take two hours to get through if we’re trying to do it with as little trauma as possible.”

ICI’s Claire Benway and Nicole Duchelle, a former Olmsted County staffer who was a trainer in person-centered practices there, curated the learning modules from the extensive offerings county employees can access through DirectCourse.

“When people with disabilities come into contact with law enforcement, they often come with a long history of being mistreated or not being seen as a person, and Olmsted County recognized this and wanted to better understand that perspective,” said Duchelle. “The County has always been innovative in using person-centered practices, so it is really nice to see this work taking root in law enforcement.”

While the content was initially designed for support professionals working with people with disabilities, law enforcement personnel can use it as a jumping-off point to discuss scenarios specific to the criminal justice process, Benway said.

“It’s really about developing relationships and treating all people well, including those with disabilities,” Duchelle said. “Respect is universal.”

Collaborating for mental health

January 24, 2023

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.”

Forum: Disrupting the prison pipeline

January 24, 2023

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.

“We wanted to see how deep this problem runs and explore policies to improve lives for the not insignificant number of people this affects,” said Jon Neidorf, a researcher at the Institute who led the creation of the Policy Research Brief: Overrepresentation of People with IDD Moving Between Large State-Run Institutions and the Criminal Legal System. “In essence, we want to use the data to help make the case for strengthening home and community-based services to better serve people who are often written off as being too difficult or unsafe to live in the community.”

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.”

Baker wins school board seat

December 16, 2022

Kim Baker (MNLEND 2019-20) was elected to the Lakeville (Minn.) Area School Board in November. Her four-year term begins January 1, 2023.

Baker is a special education supervisor for Owatonna Public Schools and is a parent of three children in the Lakeville district. She was a Minnesota Leadership Education in Neurodevelopmental Disabilities (MNLEND) fellow following completion of Partners in Policymaking, a program of the Minnesota Governor’s Council on Developmental Disabilities.

“Kim will be a strong advocate for students with disabilities,” said Rebecca Dosch Brown, interdisciplinary education director for the Institute on Community Integration, which coordinates the interdisciplinary program that reaches across several University of Minnesota colleges, centers, and departments. “As a MNLEND fellow, she proved herself to be both a passionate teacher advocate and parent advocate for children with neurodevelopmental disabilities. We are thrilled Kim’s voice will be heard on her local school board to ensure children’s rights are protected.”

As a parent of three students with disabilities, Baker’s passion for advocacy was already well stoked by the time she completed the fellowship, but she said the experience helped her frame disability in a larger context, which will serve her well as she serves on the board for the entire district.

“You have to get beyond just trying to draw people to a cause,” she said. “There is passion and empathy and emotion and all of that is great, but at a certain point you have to advocate from beyond your own front door. I can advocate all day long, but it’s not going to do anything unless I’m bringing more people in and bringing awareness to some of the issues.”

The multidisciplinary approach of MNLEND drew Baker’s interest as a special education professional because it provided opportunities to learn how to build relationships between the medical community and schools.

“There have been many times parents would go through the process of getting an outside diagnosis and then come to school and say they needed an individualized education plan, not understanding the process doesn’t automatically work that way,” she said. “So having the chance to work alongside these professionals allowed me to build some connections so they understand our process as well.”

Having a voice for students with disabilities will be critical as the board makes decisions about operating in anticipated tight budgets in the year ahead, she said.

“It’s important, too, just to have an educator’s voice on the board who understands what it’s like to be in a classroom, who knows how much money teachers spend out of pocket every year, who knows the time they devote, and how much they care about students,” she said. “I kind of felt like it was just time to do this.”

New web application to provide easy-to-use tools to improve direct support workforce recruitment and retention practices

December 16, 2022

Elevance Health is partnering with the University of Minnesota’s Institute on Community Integration to develop a web application that allows organizations supporting individuals with disabilities and older adults to track and assess key elements of their workforce, enabling them to more effectively recruit and retain staff who will support individuals to create lives of their own choosing.

The direct support workforce has been in a persistent and growing crisis for years. Increasing demand for services and high staff turnover and vacancy rates have created severe staff shortages that threaten the quality and availability of essential services for individuals with disabilities, people who are aging, and their families. This is also extremely costly to the human services system.

Elevance Health supports health at every life stage, offering health plans and clinical, behavioral, pharmacy, and complex-care solutions that promote whole health. Direct Support Workforce Solutions, a national consulting group within the Institute on Community Integration, is addressing the workforce needs of organizations providing community-based supports for individuals with disabilities.

A key element of the web app is a robust data portal that allows organizations to enter select workforce data and track their progress, with access to state and national benchmarks where available. Through a highly visual dashboard, they can generate current and period-over-period reports; calculate the rate and cost of turnover; export data for reporting purposes; calculate average tenure, vacancy rates, benefits utilization, and wages by job classification; and compare their progress with other organizations.

The data portal will help organizations identify who is staying on the job, for how long, and why, helping them recruit candidates with the best chance of performing well and supporting people with disabilities to live their best lives.

“What’s unique about this product is that it’s grounded at the organizational level,” said ICI Director Amy Hewitt. “This service will allow organizations to access their data, not just state-level data. And it will connect them to data-informed interventions that can help address some of their greatest workforce challenges.”

Organizations operating in multiple locations will have the ability to access data for a specific site or system-wide, displaying characteristics at a glance, such as wages, benefits, and overtime, and types of services provided. Custom in-app reports allow organizations to better understand the demographics of their workforce, including age group, gender identity, tenure, marital status, veteran status, and disability status.

Other elements of the web app will include dynamic job descriptions with structured behavioral interview questions, realistic job previews, customized targeted marketing materials, and other workforce interventions.

The data portal is being piloted externally and the web app will be available in early to mid-2023. Pricing to be determined.

“Managed Care Organizations play a critical role in supporting the workforce development efforts of providers in their network,” said Elevance Health’s Rachel Chinetti. “We are proud to partner with Direct Support Workforce Solutions to develop a tool that will increase access to data and workforce tools for providers across the country.”

Drawing on more than 30 years of research, training, outreach, and evaluation, Direct Support Workforce Solutions helps organizations develop and implement workforce strategies that reduce turnover; attract, recruit, and retain qualified talent; and engage and prepare their workforce to deliver high-quality services.

Tennessee tackles workforce challenges

December 16, 2022

Sheena (right), a woman receiving supports, in the arts supply store where she works in Nashville, Tennessee. On the left is her job coach/direct support professional, Chelsea Toombs, from the Progress, Inc. provider agency in Tennessee.

A multi-year collaboration between Tennessee’s managed Medicaid agency and the Institute on Community Integration is helping address dire shortages in professionals supporting people with disabilities. ICI’s partnership with TennCare, begun in 2018, created four annual workforce surveys and analytics, a workforce toolkit, realistic job previews employers can share with candidates, marketing materials, public service announcements, and training.

“We’re really proud that we didn’t start this work in 2021 in response to the pandemic, but proactively started surveying our workforce in 2018,” said Shannon Nehus, program director, intellectual and developmental disabilities, within TennCare’s Long-Term Services & Supports (LTSS) division. Tennessee Community Organizations (TNCO), a service provider association, also collaborated on the work. “We now have a workforce community of practice in Tennessee that, even through the public health emergency, has made changes that will result in higher staff satisfaction levels. Ultimately, that means people with disabilities will have more stable and higher quality services,” Nehus said.

While no one action will fix the shortage of direct support professionals (DSPs), coming together with service providers throughout the state to share information and create the tools designed through the partnership will produce long-lasting results going forward, said Anna Lea Cothron, TennCare’s LTSS system transformation director. In just one example, Cothron shared the story of a provider who previously would only consider hiring full-time DSPs. After multiple data-driven conversations, the provider agreed to hire part-time professionals.

“You really can’t make good decisions without the right data,” Cothron said. “It is so worth the effort. We can’t prove positive outcomes without it, and ICI was a dream partner to help make it happen. Their national reputation lends credibility, but day to day, the researchers were smart and competent without being lost in theory. They understood the practical side of how providers work.”

The four annual statewide surveys of the Tennessee support workforce generated data that can be analyzed on a state, regional, or individual provider level to pinpoint problem areas and illuminate where recruiting and retention dollars will best be spent, said Sandra Pettingell, research associate at ICI.

“TennCare is a great example of the types of consultation and support we’re able to provide organizations,” said Barbara Kleist, who led the ICI team that worked on the project. She also is a lead consultant for ICI’s Direct Support Workforce Solutions, a consulting group. “Using data to drive decision-making on recruitment, retention, and training can bring organizations some stability amid the devastating labor shortages that worsened during the pandemic.”

Those ideals helped propel Core Services of Northeast Tennessee to win the 2022 Moving Mountains Award, which recognizes organizations using leading practices in direct support workforce development. The National Alliance for Direct Support Professionals, along with ANCOR and ICI, bestow the awards.

“We’ve used the same person-centered concepts with our employees that we use with the people we support, and that has put us where we are today,” said Susan Arwood, Core Services’ executive director. “We design work schedules that fit their needs, we’ve given personal loans during hardship issues, given away vehicles and even had a school for some DSPs’ kids during the pandemic.”

Arwood praised Tennessee’s track record of innovations in supporting people with disabilities, including several technology initiatives in remote monitoring that allow people to live more independently.

Within the TennCare Workforce Initiative, Core Services participated in the Quality Improvement in Long-Term Services and Supports Initiative (QuILTSS) survey and took advantage of one-on-one consulting to supplement what the agency was already doing.

“We implemented several new things that just took us a step further,” she said, including redesigning a website to be more transparent and incorporating video storytelling to attract new hires. “We also started a mentor program for new hires and by the end of six months they usually had formed a relationship with the mentor. That’s helped us keep people who in years past would have just walked off the job. They felt comfortable now bringing up issues.”

In a realistic job preview video created during the TennCare project, Patti Killingsworth, retired chief of long-term services and supports for TennCare and a longtime family caregiver, says frankly that sometimes, walking away can be the right move for a new DSP, and the people they support. For others, finding work that matters can make all the difference.

“If you decide to embark on the journey of becoming a DSP, buckle up; it’s going to be an amazing journey,” she says in the video. “You’ll know that what you’re doing really matters and you’ll make such a difference in the lives of the people you support.”

The new Frontline Initiative: Supported employment

December 16, 2022

The cover of Frontline Initiative: DSPs Supporting People’s Employment, showing Allan Cole (left), who is a supermarket worker with a disability, and his job coach/direct support professional, Estel Williams (right).

As more organizations move away from providing sub-minimum wage jobs in sheltered workshops, direct support professionals (DSPs) are grappling with new demands for supporting people with disabilities to find and succeed in competitive jobs in the community. The new issue of Frontline Initiative delves into the history, challenges, and opportunities in supported employment.

“DSPs play an important role in creating positive expectations and in consistently supporting people to find a job that really fits them,” Chet Tschetter, co-editor of FI, said in a video announcing the new issue.

As of 2020, more than 140,000 people are receiving integrated employment services, and most states have now adopted employment-first policies, notes author John Butterworth, a researcher at the Institute for Community Inclusion at the University of Massachusetts Boston.

In another article, Christelle Auger, a DSP and job coach, talks about working with Ryan to identify his interest in the culinary field and then using an organizational networking relationship with Amos House in Providence, Rhode Island, to support him through an eight-week culinary and food-safety course there. The experience, Auger writes, gave Ryan the tools to make an informed choice about his career and it also deepened her own professional skills.

“Coming out of the pandemic, we wanted to hear what was going on for people,” said co-editor Julie Kramme. “Many people with disabilities experience barriers to getting the job that they want, and this can be so discouraging, but there are success stories,” Kramme said.

In a video interview with Tschetter for the issue, for example, Allan Cole and Estel Williams discuss Allan’s job as lead bagger at a grocery store, and how Estel’s support has lessened over time as Allan’s skills grew over the last several years.

There have been challenges, to be sure.

Some organizations that abruptly closed at the start of the pandemic began shifting entirely to competitive integrated employment support, requiring substantial new skills of DSPs, just at a time when they were reporting significant levels of anxiety and burnout, notes Joseph Macbeth, president of the National Alliance for Direct Support Professionals (NADSP).

“Things are clearly not OK,” he writes in the issue, discussing results of ICI’s 24-month direct support workforce survey. “My impression from the data is that direct support professionals are being stretched to the point where we have added another layer to this workforce crisis – a mental health crisis.”

There are, as well, examples of professionals who are thriving.

Nicole Opland shares her story of supporting Cameron Olson to find and succeed in property and environmental work in Duluth, Minnesota.

“Working with Cameron has reinforced for me that integrated employment is the preferred and most successful place for people to learn and thrive,” she writes. “Being in the community helped him advance his employment success more effectively and efficiently.”

Alumni Update: Kelly Nye-Lengerman

November 16, 2022

Getting ready for this week’s AUCD 2022 Conference, Kelly Nye-Lengerman (pictured at an earlier AUCD conference) beamed as she talked about joining several Institute on Disability (IOD) colleagues at the conference this year, half of whom are presenters, after a pandemic-related dip in travel.

“We have staff presenting on using statistics to understand the impact of COVID-19 on people with disabilities, including those from diverse racial and ethnic backgrounds,” said Nye-Lengerman, director of the IOD at the University of New Hampshire, part of the University Centers for Excellence in Developmental Disabilities (UCEDD) network. Previously, she was director of the Community Living and Employment focus area at the Institute on Community Integration (ICI). At the in-person and virtual conference of the Association of University Centers on Disabilities (AUCD), the IOD’s presentations will focus on including people with intellectual and developmental disabilities (IDD) in research, supporting integrated mental health practitioners working with people with IDD, and implementing Home and Community Based Services. Staff members will also participate, along with officials from the U.S. Department of Labor, in a panel discussion on apprenticeship programs and credentialing of paraprofessionals in behavioral health services.

Beginning her role leading the IOD during the pandemic was challenging, but she believes it provided an opportunity for growth.

“We came out of COVID-19 stronger, and that speaks a lot to the character of employees who were here as well as the relationships I’ve tried to cultivate,” she said. “UCEDDs are unique places for diverse research, evaluation, training, and interdisciplinary education. There are universal truths around our mission of inclusion, participation, and belonging. We’ve really pushed our thinking in the last couple of years to consider full inclusion in ways that are the most meaningful to the person.”

The organization also has provided expanded training and visibility to the broader UNH community around disability etiquette and strength in neurodiversity, helping to position disability as a critical component of UNH’s diversity, equity, and inclusion initiatives.

Under a grant from the Patient-Centered Outcomes Research Institute, IOD is evaluating the effectiveness of telehealth services on mental health outcomes for young people with IDD.

“The IOD has a strong national footprint in providing technical assistance and training in mental health for people with IDD, and a deep focus on children’s behavioral health in our state,” Nye-Lengerman said.

Danielle Mahoehney, a community living and employment specialist at ICI, said Nye-Lengerman played a tremendous role in advancing employment research, policies, and practices in Minnesota during her time at ICI.

“In addition to being a brilliant researcher and national expert on employment for people with disabilities, I think one of her greatest strengths is her ability to build relationships and make connections between people and ideas,” said Mahoehney, who Nye-Lengerman recruited. “She helped lay the groundwork for many of the partnerships between ICI and state agencies, advocacy organizations, and service providers that have become key to moving the concept of Employment First forward in Minnesota.”

Asked about a few things that stuck with her from her time at ICI, Nye-Lengerman reaches for a table decoration made for the Institute’s 30th anniversary celebration in 2015 that featured “pearls of wisdom” from ICI employees and friends. She says she often looks back on her own quote and the words of her colleagues, and she tears up as she talks about learning the value of coming from a place of curiosity instead of judgment.

“Making communities more inclusive is long-game work,” she said. “Listening is really essential and I think I really refined that skill while I was at ICI. We worked with so many people and entities outside of the organization and so we learned to strip away judgment and create opportunities to hear.”

She has used those skills to work with partners and state agencies in New Hampshire since joining IOD in June 2020 after 11 years at ICI. In addition to her role at ICI, she was a 2015 graduate of the Disability Policy and Services Certificate, and earned master’s and doctoral degrees in social work from the University of Minnesota.

“People know the IOD and what we do much better today,” she said. “A lot of that is simply picking up the phone, inviting people to engage, and not judging. Whether it’s town halls, shared events, or just behind-the-scenes strategizing, it comes down to listening and looking up and out instead of down and back.”

New fellowship program connects with communities

November 16, 2022

Applications are due November 18 for the MNLEND Community Mentorship Program, a new funded training experience for University of Minnesota Extension educators to develop telehealth services in urban and rural communities. MNLEND (Minnesota Leadership in Neurodevelopmental and Related Disabilities), part of the Institute on Community Integration, is an interdisciplinary leadership training program spanning over 16 disciplines across the University.

Pilot projects completed earlier this year included training for educators on inclusive practices for campus visits by students with disabilities, online resources for providers supporting Somali mothers and their newborn children, and career preparation for neurodiverse high school students.

“These medium-term fellowships support passionate educators with needed resources and networking connections to leverage technology that will help Minnesota families,” said Muna Khalif, program coordinator for the TeleOutreach Center at the Masonic Institute for the Developing Brain.

Khalif and Betül Çakir-Dilek are coordinating the program, a partnership between the Institute’s MNLEND program, the TeleOutreach Center, and UMN Extension.

“The program enhances the abilities and potential of the Extension educators who are working with community partners to deliver research-based, cross-disciplinary educational programming,” said Lynne Borden, associate dean for research and engagement at University of Minnesota Extension. “MNLEND helps prepare our next generation of educators to lead in the experiential learning community.”

For one of the pilot projects, Cari Michaels, an educator in the Center for Family Development at Extension, teamed with Lauren Moberg, Infant and Early Childhood Director at the Minnesota Association for Children’s Mental Health, and several community partners to create online and mobile text mental health support for new parents.

“I wanted to focus on people right after they’ve created their families, which can be the most isolating time, particularly following COVID-19,” said Michaels. The team of mental health professionals, advocates, parents, and education students helped create The 40-Day Project: Postpartum Support During the First 40 Days.

In the Somali culture, family and friends surround new mothers with extensive care during the first 40 days of a child’s life. For families now living in the United States, those extended networks aren’t always available, leaving many new mothers feeling overwhelmed and vulnerable to depression, Michaels said.

Michaels and Moberg collaborated with Maryan Ali, Ifrah Nur, Sahro Abdullahi, and Mollie Kohler on the project.

The group also has created a text-message system that allows new parents to opt in to daily messages of mental health support and self-care tips.

“We really designed this with Somali parents in mind, but hope to expand it in the future,” Michaels said. For another dyad, Jenny Cable and Courtney Hess developed Creating college & career pathways for youth with disabilities, which are trainings designed to assist campus personnel to recruit high school students with disabilities to campus and learn the best ways to support them once they arrive, said Jessica Simacek, director of the TeleOutreach Center.

A desire to help neurodiverse students guided Cassandra Silveira, an Extension educator in the Center for Family Development, to partner with Joy Kieffer, executive director for Mind Shift, a nonprofit organization that connects employers with individuals with autism. They worked on a project to improve future employment options in technology-focused careers for neurodiverse individuals who are preparing to transition from high school to adult life.

“The pilot projects exceeded our expectations, and we’re excited to work with other dyads in the future,” Simacek said. “Extension educators know Minnesota communities so well and have people living in those communities, so they are bringing a lot of expertise to the table in this partnership. For ICI, engagement isn’t a brief moment in time. It is about developing long-term relationships. So, we thought working together would be a great way to engage people across the state who urgently want to improve access to mental health or behavioral health services for children, youth, and young adults.”

Contact Khalif at 612-250-7864 or Çakir-Dilek at cakir003@umn.edu with questions.

Using telemedicine to help families when they need it most

November 16, 2022

Jessica and her husband Andrew wondered if their son Elias might be autistic.

They also knew that early intervention, while his brain was still developing, was critical to providing him with the support he needed.

Trouble is, the wait list to see a specialist for the neurological disorder can be months and even a year or more long.

Fortunately, the Mendota Heights couple was referred to Bridging Barriers, a telemedicine study from the Institute on Community Integration and the University of Minnesota Medical School’s Department of Pediatrics – both part of the Masonic Institute for the Developing Brain.

In just four weeks, they had that critical diagnosis. Even better, they’re getting coaching on how to help their four-year-old son while they climb the wait list.

“Time is neurons,” says Jessica with an ever-watchful eye on her playful boy. “We can’t put our son’s developing brain on pause.”

Agrees Dr. Amy Esler, the study’s lead psychologist: “The brain, at this stage, is so malleable. Making sure kids learn to talk, for example, is much easier when they’re two or three than when they’re ten or 11.”

We’ve Had a Few Kids Start to Speak

The University of Minnesota is famous for its medical breakthroughs. But this is innovation in the delivery of that medicine.

The number of people diagnosed with autism grows. But, for various reasons, the number of providers does not.

It’s especially acute in Minnesota’s rural areas, where specialists of any kind can be hours away.

Telemedicine not only promises to serve more patients, more easily but, at least in one sense, also more effectively.

Video calls invite care professionals into the home where they can see their patients in a more natural – and telling – environment.

Says Dr. Adele Dimian, one of the study’s co-principal investigators and coaches: “What makes my day is seeing a family having fun together reaching a goal.”

It’s Just the Way the Universe Works

Nobody knows autism quite like Dr. Jessica Simacek, the study’s principal investigator.

After a career spent helping kids with special needs, her own son was diagnosed with autism.

Dr. Simacek experienced firsthand what it’s like to be on wait list after wait list, first for a diagnosis, then for therapy and more therapy, all while your child – and you – need help now.

And even though she’s an expert on child development, she realized that she needed help, too, even if it’s just a reassuring voice from time to time.

Dr. Simacek says: “Our goal is no families waiting.”

We Call Him Our Crossfit Baby

Jessica and Andrew had a reason to be extra vigilant with Elias’s development.

There was a complication with his delivery – he went without oxygen for several minutes.

Jessica first noticed something different at just three months when Elias pushed himself up on his hands and knees in a determined effort to crawl.

By age 1, he was not only walking with confidence but running and even climbing.

Still, at regular check-ups, Elias’s tests were normal until about three, when Jessica and Andrew noticed delays, especially in his communication skills and ability to regulate emotions.

Now, with the help of the study’s early intervention, they’re confident that they’re doing everything they can for him.

Immediate Impact: Article sparks Ukrainian connection

October 25, 2022

Solomiia Kuchma, a Ukrainian war refugee, in her kindergarten in Minneapolis. On the right is her teacher, Kelly Pier. On the left is Safia Dockter, a University of Minnesota psychology student of Ukrainian descent who befriended Solomiia and speaks to the child in her native language. Solomiia lives in Minneapolis with her mother. Her father is still fighting in Ukraine.

When Safia Dockter began writing and speaking about the atrocities of the Russian invasion of Ukraine earlier this year, it helped her process what was happening to the country where her mother was born and where she still has relatives. What she didn’t know then was how quickly her words would turn into action for one little girl.

Dockter, a University of Minnesota psychology student, wrote an article for Impact, the Institute on Community Integration’s long-running publication about issues important to people with intellectual and developmental disabilities (IDD). The article, “Transition in Times of Crisis,” discussed inequities in the way youth with disabilities come of age around the world, and how war and other crises exacerbate those disparities. A few months earlier, Dockter spoke about the war in Ukraine at a College of Education and Human Development event on campus organized by Renáta Tichá, co-director of ICI’s Global Resource Center for Inclusive Education, who was co-teaching a class Dockter was taking at the time. Together, Tichá and Dockter wrote the article for Impact.

Solomiia cutting artwork while Safia looks on.

Shortly after the article was published this fall, Menolly Pier, a Carlson School of Management student who had seen the article, contacted Safia via social media, asking if she might connect with Pier’s mother, Kelly, a kindergarten teacher at Lake Harriet Community School. Kelly Pier has a young student in her class this fall, Solomiia Kuchma, who fled Ukraine with her mother, Nataliia, landing in Minneapolis. They are living with a host family through a program for refugee families.

Solomiia doesn’t have IDD, but learning a new language, culture, and school environment after having fled the homeland where her father is still fighting has been understandably traumatic. For the past several weeks, Dockter has been coming to Solomiia’s school two to three times per week to help her better understand the school customs here and to simply be a friendly face she can speak to in her own language. Nataliia, a physician, speaks English and is working with Solomiia on it at home. The school has a language specialist who comes to her classroom regularly. Still, Pier has had several experiences with other students who are refugees and wanted to see what more she could do to help.

“Menolly reached out to me expressing interest in connecting about resources for Ukrainian children experiencing trauma,” Dockter said. “I volunteered to come to the school and speak to the child, and that first day we talked for about three hours about her life in Ukraine and her family. Once I left the school, I knew this was something worth putting my time towards. This little girl needed emotional support in school from someone who felt familiar to her and spoke her language, understood her culture, and could be a friend.”

Safia helped Solomiia understand the school’s snack time and recess procedures and the fire drill protocol, among other things, Kelly Pier said.

“In our classroom, I teach some sign language to everyone, such as water or bathroom, which keeps noisy interruptions down during the day, and I taught these to Solomiia,” Pier said. “She saw the other children using them as well and that gave her a bond right away.”

Gradually, Solomiia is becoming more comfortable with her new surroundings.

“Tag is a universal language, so she’s running around at recess,” Pier said. “We do a morning greeting and she is now going around and saying her classmates’ names. They have been making her feel welcome and students from other classes are doing that now, too. We teach that everyone needs to be welcomed and that while we are different, different is fun and different means we can learn new things from each other.”

Nataliia says her daughter is doing well, and they are enormously grateful to their host family, the school, and the community. Still, the horrors of war and her fears for her husband and family back home are ever present.

“Solomiia overheard a lot of conversations when we escaped, and so she is naturally afraid of what is happening. I explained that her father is trying to protect our home, but it is very hard for her and she cries when we separate for the day. In this classroom, her emotional development is being looked after, and I just want to thank everyone so much.”

Safia, meanwhile, is developing a handbook for school personnel who work with displaced students from Ukraine. She aims to help them understand and differentiate between responses that are simply cultural norms and those that are trauma related and require mental health treatment.

“Everyone has their own purpose during war,” she said. “Some are doctors, some are soldiers, and some provide other resources that they may have. Solomiia helped me find my purpose.”

Tichá, Safia’s professor and co-author of the Impact article, said Safia’s instinct to create interventions to respond to people with disabilities and others who are vulnerable highlights the urgency of this work around the world.

“One of the reasons I love working at ICI is the chance to see the real impact of our work on the wider community, even beyond disability,” she said. “When an article turns into a spark for making a difference in the life of a child and her family, there is a level of meaning there that just can’t be planned.”

Certificate: A deeper understanding of disability

October 24, 2022

Akeem Anderson, a University of Minnesota J.D./Ph.D. student interested in the intersection of race, health, and law, is adding the Disability Policy and Services Certificate from the Institute on Community Integration to his already hefty academic pursuits.

As a direct support professional (DSP), Ellen Wiederhoeft wants to better understand the policies and infrastructure affecting the lives of children and adults with disabilities.

Julie Li Yang wants to deepen her skills in helping her three children with autism, and at the same time broaden her future career aspirations as she completes her master’s degree in public health.

For her independent learning experience as part of the certificate program, Mary Troullier envisions building on her experience teaching yoga to students with disabilities to develop training materials for other teachers. The certificate will enhance her credentials as she also pursues a master’s degree in physical activity and health.

At any given time, about 40 students around campus, like Anderson (MNLEND 2022-23), Yang (MNLEND 2021-22), Troullier (MNLEND 2022-23) and Wiederhoeft (MNLEND 2022-23), are pursuing the certificate credential, a collaborative effort of the Institute on Community Integration and the Department of Organizational Leadership, Policy, and Development within the College of Education and Human Development (CEHD).

The program consists of a three-credit core course taught in the spring and summer terms, six credits of specialized coursework, and an individualized learning experience that includes working directly with people with disabilities or designing disability research or policy, along with participating in interdisciplinary discussion groups.

“This certificate is often an add-on to students’ other graduate work at the University,” said Rebecca Dosch Brown, director of the certificate program and interdisciplinary education director for the Institute. “It can be used as a career development step into the disability field, and it is also integral to the nursing doctorate program. We collaborate with the nursing school so that every doctoral nursing student earns the certificate seamlessly to round out their training. In this program, they get to learn about the social model of disability, or the structural barriers people with disabilities face. They also hear directly from policymakers, and the overall experience often changes how future practitioners and leaders understand disability in society.”

Dosch Brown herself, in fact, completed the certificate earlier in her career as she transitioned from working as a teacher adviser to working in the disability justice and advocacy field.

Anderson, who has a keen interest in research pertaining to race, class, gender, religion, and other aspects of identity as they affect health policies and systemic structures, is also a current MNLEND fellow. He’s using both experiences to help inform his current Ph.D. work in American studies and his future work in law and policy.

“My research looks at the origin of skepticism of the healthcare system in communities of color,” he said.

Yang, also a MNLEND fellow, is using the certificate to deepen her disability credentials as she also pursues a master’s degree in the School of Public Health.

“My planned trajectory in the grad program was to focus on research, maybe childhood obesity. Once my son was diagnosed with autism, my whole life and my education plan changed,” said Yang. As a MNLEND fellow, Yang worked on promoting early intervention autism services in the Hmong community.

Wiederhoeft, meanwhile, is enrolled in the certificate program and also is in this year’s MNLEND cohort.

“In the class, I felt an increased interest because of my experience as a DSP,” she said. “There were a lot of opportunities for me to voice opinions about misconceptions about support staff and hear from a lot of different professionals who work with people with disabilities. Home-based support is often invisible, so I definitely tried to bring home the value of home-based support to nurses and others in the class.

“The biggest thing I appreciate about the certificate is the ability to tailor it to my career and professional goals. I wanted to explore all the aspects of disability.”

Troullier, who worked at the University’s Disability Resource Center as an undergraduate student, said the experience opened her eyes to the gaps and barriers people with disabilities face when it comes to physical activity and fun.

“It showed me how much work there is still to do in the disabilities field,” she said. “A lot of yoga spaces say they want to be welcoming to everyone, but often that extends to race and other aspects of identity but not to disability.”

People interested in the certificate program should email Dosch Brown at dosch018@umn.edu.

Removing barriers for families

October 24, 2022

After completing a master’s degree at Harvard University, Julia Anderson (MNLEND 2016-17) is turning her experience in disability policy to a new task: innovating state programs for the Commonwealth of Massachusetts.

In January, she became director of strategic innovation for Gov. Charlie Baker’s cabinet relations/strategic operations team, reporting to Robert Garrity, deputy chief of staff for strategic innovation.

“Bureaucracy so often obscures the needs of the family and the child,” she said. “We’re looking at how low-income families or families with high needs – and this includes those with disabilities – apply for financial assistance for childcare. It’s a paperwork-heavy, long process that is confusing for families.”

She’s leading a pilot project to test a new digital application to see if it results in speeding access to childcare for families. She’s also helping assess policies and regulations to discover other potential reforms.

While finishing her master’s degree in public policy at Harvard’s Kennedy School of Government, she worked as an intern for the Department of Developmental Services, which led to becoming manager of statewide autism supports. This work followed her extensive contributions to building accessible programs for diverse communities at the Walker Art Center in Minneapolis. As a MNLEND fellow, she developed Sensory Friendly Sunday , a free monthly event for children, teenagers, and adults with autism or sensory sensitivities, and their families. Inspired by MNLEND’s model of bringing together professionals and community members from a wide cross section of disciplines, she formed a community advisory group of parents, professionals, and self-advocates to serve as advisers to the museum’s program developers.

“When I think of the core takeaways from LEND, a big one was working in an interdisciplinary way with teams; the benefits of getting out of your silo, whether it’s as government administrator, or psychologist, or pediatrician, and talking to other people,” she said. “Right now, I’m helping organize focus groups of families, advocates, childcare and other providers to talk about the challenges in childcare and come up with solutions. So, you need to listen, but you also need to come back to them and be accountable for the outcome, and I think LEND taught us that lesson.”

Rebecca Dosch Brown, MNLEND’s training director, said Anderson is a proven innovator and problem solver.

“She’s always looking for ways to improve systems by listening to the disability community directly,” said Brown. “It’s a testament to her ability to bring people together to build inclusive systems that her brainchild – the Walker’s Sensory Friendly Sundays – continues to be offered each month. That’s her legacy, and we’re thrilled she’s still innovating.”

The MNLEND fellowship application for the 2023-2024 training cohort opened on October 15, with an early consideration deadline of January 6, 2023, and a general deadline of March 1, 2023. Applicants from historically underrepresented racial, cultural, and linguistic backgrounds are strongly encouraged to apply.

National report: Worker anxiety, depression surging

October 24, 2022

While vaccination rates have improved among professionals supporting people with intellectual and developmental disabilities since the early days of the COVID-19 pandemic, their mental and physical health have declined, a new survey shows.

The Institute on Community Integration, in partnership with the National Alliance for Direct Support Professionals (NADSP), surveyed 2,657 DSPs and frontline supervisors about their experiences supporting people with IDD during the pandemic. The newly released survey report is a 24-month follow-up to an initial report issued in April 2020. Additional surveys were conducted six and twelve months after the initial report. The survey series represents the largest-ever national study of the DSP workforce.

According to the report, 52% percent of DSPs reported being diagnosed with COVID-19, and 6% were not diagnosed but suspected they had it. Among employers, 65% did not require DSPs to be vaccinated.

Sixteen percent of DSPs remain unvaccinated. Of the 84% who are vaccinated, 67% reported having at least one booster shot.

While vaccination rates have improved from the 12-month survey in 2021 (from 72% to 86%), the mental and physical health of DSPs has declined. Forty percent of DSPs reported experiencing depression, compared with 36% one year ago; 43% had difficulty sleeping, a 5% increase; 56% reported increased anxiety, a 9% increase; and 21% reported physical health complications, a 3% increase. Fifty-nine percent of respondents said they felt pressure to work extra hours.

“Direct support professionals and frontline supervisors have worked as hard as they can,” said Amy Hewitt, ICI director and lead investigator of the study. “This survey shows that their mental health is worsening, and we don’t have the resources to address it. Working this much overtime is not sustainable.”

A national plan to increase the size of the direct support workforce would help to alleviate multiple troubling issues, Hewitt said.

“This workforce has been overlooked and in crisis for years, with high turnover and vacancy rates, low wages, and lack of access to affordable benefits,” she said.

More than half of DSPs receive government-funded assistance, such as housing, energy, food, and healthcare. The pandemic made staffing even more difficult, increasing stress, expectations, and risk on those who remain in their positions.

The 24-month follow-up survey also looked at changes in technology use during the pandemic. Fifty-nine percent of DSPs reported using technology more or a lot more than before the pandemic. Thirty-six percent of the respondents said the use of technology had a somewhat positive impact on their work, and 14% reported it had a very positive impact. Seventeen percent reported a somewhat negative impact and 3% a very negative impact.

Read the full report, a short version, and select state-specific versions at z.umn.edu/dsp-covid19.

Please contact Jerry Smith with questions.

CEHD News Institute on Community Integration

CEHD News Institute on Community Integration