Beyond the pay: More reasons to end subminimum wages

April 18, 2023

Nellie Lee at the food co-op and deli where she works in Cambridge, Minnesota.

Early in her shift at City Center Market, a food co-op and deli in Cambridge, Minnesota, Nellie Lee is stocking shelves and reminiscing with her manager about one of her recent ideas to have store workers dress up in western gear for a day.

“Her co-workers say she makes their shifts more fun, and customers really seem to enjoy talking with her and asking her where things are,” said John Kenny. “And, she’s one of just two people in the store who cross over from stocking shelves to working in the deli and also in our wellness aisle.”

Lee smiles at the praise, noting that her first name translates to sun ray, a bringer of light.

“I like interacting with others, making people happy and joyful,” she said. Such so-called soft skills are in high demand today, particularly in jobs involving interaction with the public.

“So many people are really shy, or used to being on their phones all the time, so it’s been great to have Nellie here,” said Kenny, who met Lee through PHASE-Industries, a Minnesota provider of employment, social, and other skills training that serves about 500 individuals with developmental disabilities, mental illness, or brain injuries.

PHASE is one of eight provider organizations that have committed to ending their use of subminimum wages by 2024 under a Minnesota Department of Human Services grant awarded last year to ICI, along with the University of Massachusetts Boston and other partners, including The Arc.

The Minnesota Transformation Initiative Technical Assistance Center was created to help organizations and people with disabilities move away from segregated work sites paying below the minimum wage. For decades, in an effort to encourage employers to hire people with intellectual and developmental disabilities, the federal government has allowed employers to pay workers with disabilities wages that are below the statutory minimum. This spring, state lawmakers in Minnesota are considering a measure to end subminimum wages altogether.

“This is a big shift for providers, particularly those in rural areas,” said Danielle Mahoehney, a community living and employment specialist with ICI. “I just took a call this week from a special education teacher who is frustrated that there just aren’t as many workshop spots for people with disabilities leaving high school. It is understandable that families are concerned, but as providers commit to offering person-centered services that people truly want and need, versus having to take a spot in a program because there is an opening whether or not it is a good fit, there will be fewer concerns about ending subminimum wages.”

Even Tim Schmutzer, chief executive officer at PHASE, had doubts about whether the organization was up to the task of re-thinking the services it provides.

“It was rebuilding from scratch, in many ways,” he said, noting that PHASE had made earlier attempts at shifting to provide more competitive employment opportunities in the community. Ultimately, some deep soul-searching and conversations with a colleague, Denise Johnson, convinced him that a radical change in mindset was needed.

“She said, ‘You know, Tim, quit thinking about competitive integrated employment, and just think about occupational satisfaction. Do you think anybody would choose to sit in a room all day, every day, when there is something better?’ That idea of occupational satisfaction – whether it is work or just living your life – really struck me.”

Under the award, Mahoehney said, ICI and its partners also are providing peer mentorships in competitive employment, as well as training in community life engagement on a broader level – support for people with disabilities that goes beyond a paycheck.

“They might be going from spending 30 hours a week in a workshop to 10 hours a week in competitive employment, but they still want ways to be engaged during the rest of their week,” she said. “It really goes so much deeper than just ending subminimum wages. It’s about engaging with your community and building citizenship.”

Autistic, not sorry

March 22, 2023

Isabelle Morris (left) assisting a writer with developmental disabilities.

You’ll probably learn something about dogs when you meet Isabelle Morris (pictured at left), and after letting you know she has all of the AKC breeds memorized alphabetically, she’ll joke that if you couldn’t already tell, her other special interest is autism.

But it’s not just uncanny canine knowledge and a dry sense of humor that set Morris apart. She’s among a growing group of autistic researchers using their lived experience to shape the future of autism research.

“I only have one experience of autism, and my adviser and others around me have the good sense to not challenge the person with autism on their experience, but to encourage me to bring in other people who will make my research so much better, versus conducting it in a vacuum,” Morris said. “It’s not only better-quality research, but community building.”

Morris is a second-year doctoral student at the University’s Institute of Child Development who is also completing a MNLEND fellowship at the Institute on Community Integration. The Minnesota Leadership Education in Neurodevelopmental and Related Disabilities fellowship is a leadership training experience that spans more than 16 disciplines across the University and includes a wide cross section of community members from outside the University.

Her participatory research project is called RADAR (Research on Autism Driven by Autistic Researchers) and her small group of collaborators are exploring perceptions about and experiences with stimming, the repetitive self-stimulating behaviors sometimes used by people with autism to manage emotions. They recently completed a survey of 150 U.S. adults with autism, asking them about masking (methods used to hide stimming from public view), about the positive and negative ways stimming affects them, and about how they use stimming to communicate with other autistic people and express their identities. She plans to conduct 20 follow-up interviews, analyze both sets of findings, and use them to create a better understanding of the way autistic people communicate.

“Historically, stimming was deemed as purposeless behavior,” said Morris, who did her undergraduate work at Stanford University and spent two years at the Stanford Neurodiversity Project. “Today there’s a recognition that it helps in self-regulation, but this social communication aspect is new. Rather than looking at it as a comparative deficit, it acknowledges an autistic’s way of being in the world.”

In the survey, nearly 3 in 4 respondents said that when they see other neurodivergent people stimming, they can tell what emotions the person is feeling – quite remarkable for a population that has historically been thought of as not being capable of reading emotions, Morris said.

“Who lacks theory of mind, now?” she quips, often referring to herself as “unapologetically autistic.”

By deeply engaging autistic people in research, we learn much more, she said. “We often joke that this is the autistic social club where we talk about research.”

To help hone her skills in working with people with different types of disabilities at multiple levels of a research project, she also spent time through her MNLEND fellowship working with Cow Tipping Press , a Minneapolis organization that teaches inclusive writing classes for adults with developmental disabilities. Her class will host readings and a book launch showcasing their work at 11 a.m. on April 4 at Lake Monster Brewing in St. Paul. Information on other spring book events can be found here .

Leading the course was challenging for Morris, stretching her executive functioning capacity, but it also helped her confidence in working with people with disabilities.

“I really want to include people with intellectual disability and higher support needs in my research,” she said. “This experience gave me the opportunity to presume competence and provide support. It also gave me ideas on how to integrate people with ID into my research in a meaningful way. LEND has been a huge complement to my academic training. Now I have a little more experience and an ability to bring that into my research with collaborators. It’s all interconnected.”

Partner Update: Hope is a strategy

March 22, 2023

Sandra Christenson (center) received the University’s Outstanding Achievement Award. Standing next to her are two former Directors of the Institute on Community Integration: David R. Johnson (left) and Robert Bruininks (right). Bruininks is also former President of the University of Minnesota.

Sandra Christenson (pictured at center), a University of Minnesota professor emeritus who helped develop and lead ICI’s Check & Connect student engagement program, recently published a second edition of her handbook on student engagement research. Christenson also recently received the University’s prestigious Outstanding Achievement Award.

The new edition, edited with Amy L. Reschly, provides insight on how educational psychology promotes positive youth development that carries into students’ adult lives, beyond high school.

“We could see that all these engagement concepts were still critically important for students in college,” she said. “When you have solid academic, behavioral, social, and cognitive skills, you can go on in life, set goals, and achieve. All those things you dream about might actually be very possible.”

Moving at-risk students from motivation to true engagement in their academic lives has been Christenson’s life’s work.

“Motivation is the ‘I want to.’ It is building the desire for something to happen,” said Christenson, who retired in 2016 after a distinguished career in educational psychology. “Engagement is when you have the cognitive piece, when the student says, ‘I can do it. I’m willing to put forth the effort, even in a challenging situation, to figure it out.”

Getting students to that point takes listening to them and finding out what is meaningful to them, and developing a relationship, she said.

“There is something about a relationship being built over time that makes a student want to avoid disappointing their mentor,” she said. “I’ll never forget one student I worked with in the mid-1990s. He said, ‘I thought you’d go away, but here we are two years later and I realize you care about me.’ You know what? He started doing better in school.”

A chapter in the new handbook, written by Christenson’s daughter Elyse Farnsworth, an assistant professor at Minnesota State University, Mankato, explores the critical link between hope and student engagement.

“Elyse was interested in contributing a chapter on hope because she’s been conducting research on relationships and the four student engagement types (academic, behavioral, affective, and cognitive). I deferred to my colleagues to decide whether to include the chapter and to edit it, but when I finally read it after publication, I loved it and thought we need to explore this more. I speculate now that we were building hope in our students through the Check & Connect model, but we never measured it, so I’m exceedingly interested in learning more about that concept.”

The handbook also has a chapter on hope as an aspect of psychological capital, another area that Christenson would like the field to explore more, she said.

“Hope is a strategy, and a critically important one,” she said. “It may be the necessary bridge between motivation and engagement. Through Check & Connect, we saw some kids who were not even willing to try. They had learned hopelessness. Hope can be that bridge between ‘I want to’ and ‘I’m willing to make the effort.’ And we know that once there is action, it’s a new ballgame for kids.”

Eileen Klemm, the ICI program manager who has led Check & Connect since 2017, said Christenson remains a champion of the program, often connecting the ICI team with researchers and school representatives who want to learn about the program.

“Sandy was one of the original developers of Check & Connect, and she always stressed how important it was that they were able to spend the first full year of the five-year grant just working with Minneapolis Public Schools to really explore how to address the disproportionate number of students with disabilities who were dropping out,” Klemm said. “Whenever I talked to her, she would say it all comes down to relationships, and they were able to build those relationships with the schools and then build this program, which is all based on the relationship between the mentor and mentee.”

In addition to her post-retirement writing – she’s currently working on another book for parents and mentors that will focus more exclusively on hope – Christenson volunteers for a number of community causes, including responding to climate change and creating affordable housing. She and her husband, Jim, both 76, also enjoy traveling and occasional hikes.

“Legislators hear from me,” she said. “We’re very lucky in that we are healthy and can travel a lot. Retirement is the world’s best thing if you do have the gift of time. It’s just like the concepts in the student engagement model – what choices are we going to make?”

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.”

Ready for Check & Connect?

January 24, 2023

The Institute recently launched a free online module for schools considering starting Check & Connect programs to improve student engagement and reduce dropout rates.

Designed for district and school leaders to learn more about the evidence-based intervention for K-12 students, the module is part of an online series that also includes content for schools already implementing Check & Connect.

“During and after the pandemic, we have seen a wave of schools looking for proven ways to re-engage students,” said Eileem Klemm, program manager. “Launching this module is exciting because it streamlines the information a school in the exploratory phase would want to know and offers concrete steps to make an implementation decision.”

The module helps users understand what Check & Connect is, and also how to assess whether the program may or may not be a good fit for them, she said, including whether a school has the resources to implement it.

The other six modules in the series are The Mentor Practice Profile (MPP) ; “Check” Data ; The weekly “Connect” meeting ; Collaborating with Families ; Planning Mentor Professional Development ; and The Student Engagement Instrument.

Better together, in school and life

January 24, 2023

Terri Vandercook, a longtime leader in the special education field who retired from the Institute on Community Integration in December, often repeats a phrase about working in the field of inclusive education for students with the most significant cognitive disabilities.

The mantra, “Together, we’re better,” stems from Vandercook’s early work. As a special education teacher in Iowa and Texas in the early 1980s, she was troubled by seeing students with significant cognitive disabilities largely relegated to separate schools or separate classrooms within regular-curriculum schools.

“My heart just couldn’t take it,” Vandercook recalled. Watching students languish amid low expectations spurred her to earn a doctorate in educational psychology from the University of Minnesota. Then followed a decades-long career at the Institute and at the University of St. Thomas, where she held a variety of roles, eventually becoming chair of the special education department. Early in her career at ICI, she was co-director of Together We’re Better: Inclusive School Communities in Minnesota…Partnerships for Systems Change, a statewide collaboration between ICI and the Minnesota Department of Education, along with many other grants and projects focused on special education.

In 2018, she returned to ICI and was assistant director of the TIES Center, a project that works with states, districts, and schools to support the movement of students with disabilities from less inclusive to more inclusive environments. TIES stands for increasing the time spent in general-education classrooms, instructional effectiveness, engagement with peers and with the general-education curriculum, and support at state and district levels for inclusive schools.

“I’ve been doing this work almost 50 years, and I’ve always had a passion for building inclusive communities, which is itself a concept that has evolved over time,” Vandercook said. “You might wonder if we really still need a center for this, but we do. Look at the data and you’ll see that the group of students with the most extensive support needs continues to be the least included, and that’s a detriment to every student, staff member, family member, and community member associated with that school. If we can create schools that truly include each and every student in a high-quality way, everyone will benefit.”

Vandercook’s energy and passion for the work and her contributions to building a team of leaders who will take the work of the TIES Center and move it forward are an incredible legacy, said ICI Director Amy Hewitt. In a tribute video created by colleagues within and outside of ICI, Hewitt shared a memory of an early conversation with Vandercook when Hewitt was interviewing to come to the Institute.

“Part of what drew me here was a conversation we had about your work in inclusive education and the life-course mission of ICI, which started a huge turn for me in my career,” Hewitt told Vandercook in the video. “We so appreciate everything you’ve done.”

Other tributes came from colleagues including Robert Bruininks, founder of ICI and a former University of Minnesota president.

“I still recall those early days, when we were building the foundational programs for ICI, and one of the most import foundational pillars was to develop a world-class set of programs and strategies to advance inclusive education in regular school settings. You were a big part of establishing that foundation that still retains a high profile today,” Bruininks said. “W.E.B. Du Bois said that of all the civil rights for which the world has struggled and fought for 5000 years, the right to learn is undoubtedly the most fundamental. You have fought for that right on behalf of the most vulnerable people of our society, and inspired generations of others to follow your lead. Job well done.”

Kristin Liu, director of the TIES Center, praised Vandercook’s talents in bringing together partners from multiple universities across the nation to create equity for students, particularly those with the most significant cognitive disabilities.

“Terri establishes trust and relationships, which allow her to ask difficult questions and partner with others to uproot complex barriers that stand in the way of creating inclusive educational environments,” Liu said. “She said in numerous meetings, ‘Together, we are better,’ and that means in and outside the classroom.”

Other praise and well-wishes came from TIES staff at partner institutions; staff from the Office of the Superintendent of Public Instruction and a student with disabilities and her parent in Washington State, a recipient of TIES intensive technical assistance; other collaborators in the field; colleagues at the National Center on Educational Outcomes, and ICI colleagues.

“Terri has a strong commitment to her North Star about what is good for all people, those with and without disabilities,” ICI’s Gail Ghere said. “It is a really powerful force that pulls people in to do amazing things together that benefit others.”

Accomplishing inclusive communities in the future is complex and challenging, and there’s no way that is going to happen without effective collaboration, Vandercook said.

“We need to think about inclusive service delivery, and by that, I mean teams of special and general education teachers figuring out the best ways to support all students as members of general education classroom communities. Special educators need to be on grade-level teams in a way that is not redundant and that allows them to collaborate and support one another as well as their grade-level colleagues in general education,” she said. “One example is to redistribute caseloads so that special educators work with students based on grade level instead of disability category and to provide time each week for special educators and related services staff to collaborate and support each other.”

She also recommends removing special education-only settings in schools. “Self-contained classrooms, resource rooms, relaxation spaces, and one-to-one teaching or therapy rooms could be converted to flexible learning spaces for any student and could be staffed by a combination of school staff, special and general educators, related service personnel, and trained volunteers,” she said. “You can’t create inclusive communities and scale them up without a diverse group of folks working together to make it happen.”

Although Vandercook’s career has focused on advocating these practices in support of students with the most extensive needs, she feels strongly that this approach will benefit all students.

“The authentic and system-wide collaboration required to create, sustain, and scale up these practices will benefit each student, whether their needs for additional support are related to academics, mental health, social connections, behavior, or a combination,” she said.

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.

CEHD News Tom Donaghy

CEHD News Tom Donaghy