Emma Baldwin is a training coordinator at Proof Alliance and serves on ICI’s Community Advisory Council.
Like a lot of college students, Emma Baldwin (they/she) struggled in the depths of the COVID-19 pandemic. Added to mental health issues and a new autism diagnosis, as well as having a close family member with fetal alcohol spectrum disorder (FASD), it was all a bit much. Even a dream study abroad stint in London was cut short by the pandemic lockdowns.
“As we all got sent home, it became clear just how dysregulated everything became,” Baldwin said. “If you struggle with emotional regulation in general, you were a goner for a couple of years.”
After graduating from the University of Minnesota with a bachelor’s degree in technical writing and communications, they went home to California for a short time to regroup.
“Ultimately, I knew I loved Minnesota and was ready to take a step in a definitive direction.”
That step led to St. Paul early last year, and a job as a training coordinator at Proof Alliance, an organization focused on preventing fetal alcohol spectrum disorders. The organization, which had helped Baldwin’s family in the past, delivers prenatal alcohol exposure awareness and education to pregnant individuals, those living with FASD, families, and others.
“There’s a lot of stigma associated with FASD that we don’t have with autism, and that speaks to the complexity of neurodiversity,” they said. “The bottom line is that in my work we are caring for the people most likely to fall through systemic cracks, and I think we’re pretty good at communicating that in our trainings.”
Baldwin is also actively serving on the Institute’s Community Advisory Council, offering expertise and feedback on critical initiatives, and on the St. Paul Mayor’s Advisory Committee for People with Disabilities.
Recently, they led a training session on FASD for about 35 school paraprofessionals that was as uplifting for Baldwin as it was for those in the audience.
“I really loved working with them because they were so receptive and ready to go. I kept hearing people saying they were going to go out and use what they learned the next day,” they said. “Hearing them in real time applying these strategies to specific kids with specific needs was so energizing.”
Macdonald Metzger, the Institute’s director of outreach, said Baldwin provided insightful guidance earlier this year on some new initiatives the Institute is working on to engage community partners.
“Emma joining the CAC has brought new life and an intergenerational worldview to the CAC,” Metzger said.
Lately, they’ve been grasping just how perfectly the Proof Alliance role fits with who they are.
“Working in this space lets me see how my brother and people like him are affected everyday by FASD, and I get to pull from my own experiences with autism to help convey my expertise,” they said. “It feels good to create something out of just what’s in me.”
When the Minnesota Leadership Education in Neurodevelopmental and Related Disorders (MNLEND) graduates receive their certificates in a ceremony on May 25, it will mark completion of the 15th cohort under the direction of the Institute on Community Integration. It also marks a significant milestone toward the national LEND program’s goal of providing long-term, graduate-level interdisciplinary training that improves policies and services for people with developmental disabilities.
“Comprehensive interdisciplinary programs that allow fellows to learn and engage with one another are rare, and rarer still are programs that engage community members as co-learners,” said Amy Hewitt, director of the Institute. “This commitment ensures that people with lived disability experience and those from diverse racial, ethnic, and linguistic backgrounds are full members of the learning community.”
This year, 28 fellows have earned full MNLEND certificates, along with seven intermediate trainees who joined the program for a more limited, focused experience. They come from University of Minnesota academic disciplines, including Public Health Administration, Law, Social Work, Psychology, Nursing, Occupational Therapy, Pediatric Dentistry, and many more; or are community members in disability-related professions, self-advocates, or family advocates.
Minnesota Governor Tim Walz congratulated the fellows in a video message that will be shared at the ceremony.
“You learned about the latest research and gained practical experience through hands-on training with individuals and families,” he said. “This combination of knowledge and experience will serve you well as you take on leadership roles in this field. Remember that leadership isn’t dependent on your title or position. Leadership is your ability to set a vision, develop goals, and inspire others to join you.”
As they completed their experience this spring, fellows shared details about their individual projects that are required components of MNLEND, along with reflections on the overall learning experience.
“My year with MNLEND has been eye opening and deeply meaningful,” said Der Thao (MNLEND 2022-23), who during her fellowship worked as part of an evaluation team for a manuscript on behavioral parent coaching for families of children with attention deficit/hyperactivity disorder. “I have met so many incredible people and have had the opportunity to learn more about myself and have grown as a leader in the disability community and in my own life.”
Rebecca Dosch Brown, ICI’s director of interdisciplinary education, said this year’s cohort built deep relationships as they shared knowledge from their personal and professional experiences with disability.
“They formed an amazingly supportive community, encouraging and advocating for each other as they learned,” Dosch Brown said. “Minnesota just gained a powerful new group of disability leaders who have the skills to collaborate not only across their disciplines but also across varied cultures and life experiences. All of us on the leadership team are extremely proud of them.”
In addition to Dosch Brown, MNLEND’s leadership team includes ICI Director Amy Hewitt; Andy Barnes, assistant professor of pediatrics at the University of Minnesota Medical School; and ICI’s Jennifer Hall-Lande and Ajibiké (BiKé) Ojomo.
“MNLEND offers projects that span a range of activities, from policy making and community outreach to clinical and research-based work,” Dosch Brown said. “Small teams can then learn from each other, the faculty, and community members in interdisciplinary settings. We coach them through their projects, making sure those most affected are included, consulted, and honored in the work the project does.”
This year’s fellows completed several education initiatives for the Minnesota Learn the Signs Act Early Project.
“I worked to educate providers on the CDC resources for early identification of developmental delays and autism through a presentation,” said Annabelle Hearne (MNLEND 2022-23). The entire MNLEND experience helped her expand her knowledge of what it means to live with a neurodevelopmental disability, she said. “Ultimately, I have learned the importance of not setting limits on individuals with disabilities.”
Other fellows worked on projects using telehealth to support early intervention for families of children with sensory or other neurodevelopmental issues.
Jeannie Clark (MNLEND 2022-23) helped test the design of a study involving young children with Down syndrome for her project.
“I have a much greater awareness of diverse views, particularly those surrounding neurodiversity,” Clark said of the fellowship.
Fellows also helped create policy research briefs, including one for the Institute based on data from its long-running Residential Information Systems Project (RISP), a longitudinal study of long-term supports and services for people with intellectual and developmental disabilities.
Applications for the 2024-25 cohort will open Oct. 15. Questions about the program can be directed to Ojomo at bojomo@umn.edu.
Amy Hewitt, PhD, is Director of the Institute on Community Integration at the University of Minnesota.
President Biden’s recent, wide-ranging executive order to improve our nation’s care system represents the most comprehensive step any president has taken to support care workers and family caregivers and to make care more accessible to working families.
We applaud this commitment to the direct care workforce, which includes childcare workers, personal care assistants, caregivers in nursing facilities, family caregivers, and direct support professionals. DSPs support individuals with intellectual and developmental disabilities in living full lives in their communities. Their complex work includes many tasks performed by caregivers, nurses, teachers, therapists, and more. And yet, this role is not well understood and has been overlooked in some of the recent news coverage surrounding the executive order. Efforts made to strengthen and professionalize the direct support workforce – evidence-based training, credentialing, mentoring, career lattices – can help raise the status of everyone working in direct care and will make a tangible improvement in the lives of people with disabilities. The April 27 reintroduction of legislation to create a standard occupational code for DSPs was welcome news and would create better understanding and measurement of the workforce. It would also help states determine more accurate reimbursement rates for support services.
Over the last three decades, through persistent advocacy, services for people with intellectual and developmental disabilities (IDD) have largely moved from segregated care in large institutions to a robust and highly varied network of community supports. Federal legislation codified the values of inclusion and access and the disability services field created a body of research and evidence-based practices that have resulted in meaningful advances in the self-determination and quality of life of people with IDD. Today, due to labor shortages and high turnover rates that pre-dated but grew far worse during the COVID-19 pandemic, many community programs for people with IDD across the country have started closing – some permanently. People in smaller residences are being moved to larger congregate facilities or back home to live with elderly parents. Waiting lists are growing. Most importantly, people with IDD, as well as their families, are experiencing dangerous service disruptions that put them at risk of losing their hard-won lives in the community. The gains made over decades are being reversed.
Meanwhile, the work of DSPs has become substantially more complex. They now support people with disabilities in a range of settings, including family homes, local businesses, intermediate care facilities, small group homes, vocational and day training programs. They work with people across the lifespan, helping them make informed decisions and seek competitive integrated employment, keeping them healthy and safe, dispensing medication, implementing medical intervention protocols, communicating with medical and other professionals, and identifying emerging signs of illness or disease. They provide assistance with daily living skills, encourage healthy lifestyles, and foster connections with family and friends. Their work requires skilled judgment and decision-making, teaching, counseling, creativity, and much more.
For all of this, DSPs earn about $14.50 per hour and their inflation-adjusted wages continue to decline. It is little surprise that the annual DSP turnover rate exceeds 43 percent.
The Institute on Community Integration at the University of Minnesota and other University Centers for Excellence in Developmental Disabilities have played an important role in training the support workforce and helping disability service providers respond to these challenges.
Our Direct Support Workforce Solutions group recently partnered with officials in Tennessee and Rhode Island to create tools and strategies for improving DSP recruitment and retention rates, for example. We’ve created realistic job previews that help explain the work to prospective DSPs, and stressed the importance of advocacy in the work. We also led a national effort to develop and validate the National Frontline Supervisor Competency Set, an important task in professionalizing the direct support workforce. We look forward to expanding these initiatives to recruit and retain workers as called for under the President’s executive order.
The President included disability in the conversation about our country’s dire caregiver shortage, and it is important to underscore the distinct roles played by professionals in this field. The solutions aren’t the same for a nurse or a direct support professional or an early childhood teacher, and it will be important to ensure that the training, education, and innovative funding opportunities created through this order address each of those fields.
As the President said, it will be up to Congress to make the additional, urgently needed investments in the care workforce, which will then need to be matched by state legislative bodies. The executive order opens a window of opportunity, however. If you have a loved one with a disability, or an aging parent, or young children, we urge you to let your representatives know how critical this workforce is to you and your family.
Tallying Girl Scout cookie totals for her Washington, D.C.-area region, volunteer Hillary Tabor proudly shares that the group sold 27,699 packages this spring.
“It keeps the girls busy and provides them with the opportunity to earn the money they will spend as a troop. They control what they’ll be able to do as a troop, so it teaches them some incredible values,” said Tabor (formerly Ross).
Tabor knows a thing or two about budget priorities. Her day job involves analyzing budget policy for the U.S. Department of Education’s Office of Planning, Evaluation, and Policy Development. She focuses on special education, rehabilitation services, and disability policy.
“Right now, we’re working on potential regulations under the Randolph-Sheppard Act, which gives vendors who are blind a priority status in competing for vending facilities on federal property,” she said. “The last update was in the 1970s, and the new language will alleviate ambiguity that was leading to inconsistent application.”
Tabor has been at the Education Department for about 15 years, since graduating from the University of Minnesota Law School. She also earned a master’s degree in Educational Policy and Administration at the College of Education and Human Development, and completed a certificate in Disability Policy and Services at the Institute on Community Integration in 2008.
Combining the law degree with the policy work was ambitious, and made Tabor stand out, ICI Director Amy Hewitt said.
“The specialization in disability was incredibly important in helping me understand more about the policy levers and how they fit together,” Tabor said. “I had taught in special education classrooms before law school, but the master’s and certificate programs helped me bring the pieces together to understand how people will be affected by policies.”
They also helped connect her to people who would become mentors and employers. Her instructors, including Hewitt, often brought in guest speakers from the disability field.
“I ended up getting an internship at the Department of Health through one of those speakers,” she said. “Then, a few years ago, while I was delivering the opening plenary speech at a conference on dispute resolution under the IDEA, one of those speakers was actually in the audience and I had the opportunity to publicly thank her for influencing my career path.”
Today, Tabor works with Congressional leaders and staff members on a variety of regulatory and policy issues.
“We have some incredible disability advocates on the Hill on both sides of the aisle,” she said. “Special education tends to be an area where most everyone agrees we need to be supportive and not create barriers to school and employment. It’s one of those bright lights that, when you look around at what else is happening on the Hill today, stands out as an area of collaboration. It really helps remind me that there is still a lot of good going on.”
In addition to her current role, Tabor spent several years in the Office of Special Education Programs, where she led dispute resolution activities. She still often reflects on those early experiences when she got to listen directly to people working in the disability field.
“Without that first-hand experience, I wouldn’t have had the opportunities to meet people in the disability community and become involved early on,” Tabor said. “Those experiences made my work so much more meaningful.”
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.”
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?”
The Boston family are the cover story in the current issue of Impact, which is about engaging communities underrepresented in disability research.
The new issue of Impact highlights critical disability research questions derived from the recent State of the Science meeting at ICI’s Research and Training Center on Community Living (RTC-CL). The issue is also available in Spanish.
What, exactly, is cultural competence in a research context? How do people with disabilities from historically marginalized communities learn about job opportunities and how can we get information to them faster? What are the strengths of families in marginalized communities in relation to family support? How can we better engage people with intellectual and developmental disabilities (IDD) in all aspects of research into social inclusion and belonging and other important aspects of community life?
Engaging Communities Underrepresented in Disability Research spells out a long-overdue research agenda and includes a cultural framework for IDD research written by issue editor Tawara Goode, director of the Georgetown University National Center on Cultural Competence. Julie Bershadsky, director of ICI’s Community Living and Employment focus area; and Teresa Nguyen, director of the Community Living Equity Center at Brandeis University’s Institute for Disability Policy, also served as issue editors.
“It was refreshing to see this Impact issue come together, with a wide range of stakeholders contributing their personal stories,” Nguyen said. “The focus on improving research equity by increasing engagement in the disability community, especially those from minoritized groups, is a critical step in addressing disability equity.”
The cover story features the Boston family of Kalamazoo, Michigan. Leonard Boston is a board member of Parent to Parent USA, an organization for parents of children with disabilities. His article shares his family’s experiences becoming involved in research in the Angelman syndrome community.
Noting he and his wife, Latrieva, were often the only people of color at fundraising events for disability research, Boston shares what getting involved in research and advocacy has done for his family.
Another State of the Science attendee, Anjali Forber-Pratt, shares her personal history as a noted athlete and now director of the National Institute of Disability, Independent Living, and Rehabilitation Research.
“At my school, the Black students were bused in from the city and there was me and a Korean adoptee, who were essentially the students of color in the school,” Forber-Pratt writes. “We can’t be afraid to talk about that, to dissect it, and study it. The layers and systemic forces of oppression that I experienced are at the heart of what we mean by intersectional research.”
Other articles in the issue address the dynamics of race, culture, language and other factors on employment, families, social lives, criminal justice, and living arrangements of people with disabilities.
“The issue takes necessary and bold steps calling for equity, immediately, in the disability research community,” Goode said. “Persons who experience disabilities and their families from minoritized racial, ethnic, linguistic, and cultural groups share compelling stories that must drive the questions and approaches for a collaborative research agenda that has meaning in their lives and improves policy and practice in their communities.”
Bershadsky, one of the leaders of the State of the Science meeting, said the meeting and the Impact issue bring long-overdue attention to communities historically left behind.
“I am so glad to see this issue come together,” she said. “It brings forth voices that need to be heard, and thus far have not been heard from nearly enough. I am hopeful this is a harbinger of better things to come.”
Nao, a socially assistive robot, is the subject of an ICI research poster being displayed at CEHD Research and Innovation Day 2023 on March 23. The poster summarizes ICI’s collaboration with the University’s College of Science and Engineering that is exploring the use of robots equipped with artificial intelligence to interact with people who are aging and encourage them to be physically active. It is one of seven research posters that ICI is displaying at this year’s event.
“When we were talking about putting together our poster, I realized that three of the people who are working on the research grant with me are people with disabilities themselves, and I was just curious to know from them how they have experienced research poster sessions in the past,” said Tichá, a senior research associate at the Institute. “Do these events even matter to them?”
One of her colleagues, Roqayah Ajaj, who is blind, shared that she rarely attends these events anymore, in part because she doesn’t have consistent access to aides who can attend the event and accurately describe the posters.
That led to conversations about trying a few things for this year’s event to learn what accessibility measures worked or didn’t work. They created a braille version of their handouts, which were also made accessible for people who use screen readers. Another colleague reviewed the content for plain-language accessibility and helped create a glossary of terms that would make the research clear to a non-scientific visitor or someone with intellectual disability, among other ideas.
“Many times, speakers will point to their posters without describing the visuals, and if I have someone with me, they will try to describe them, but the information often gets lost, so my colleague, Emily Unholz-Bowden, and I are making sure that we not only have visuals but we are confident in engaging with people to describe them,” along with the technical accessibility features, she said.
The group’s work focuses on improving programs for youth with disabilities who are transitioning from high school to adult life, part of a five-year initiative with Minnesota’s Departments of Employment and Economic Security, Education, and Human Services; local education agencies, and other organizations.
“Through a landscape analysis we are trying to highlight the challenges of youth with disabilities who are roughly 16 to 23 years old,” Tichá said. “We’re finding that these programs can be quite segregated, but by having the state leadership on this project, we are hopeful that the transition tools being built will be used in conjunction with real opportunities to connect to competitive employment and integrated post-secondary education.”
Tichá also will lead a poster summarizing ICI’s collaboration with the University’s College of Science and Engineering that is exploring the use of robots equipped with artificial intelligence to interact with people who are aging and encourage them to be physically active. Enhancing Physical Activity Among Older Adults Using Nao, a Socially Assistive Robot (SAR) is funded through a CEHD Jump Start seed grant.
Nao can dance, ask questions, tell jokes, move around, and complete many other tasks, said Maryam Mahmoudi, an ICI researcher. Programmed to provide access to objects for individuals with physical disabilities and aging adults, Nao can also engage in reciprocal conversations with a high level of accuracy, and even understand a variety of accents.
“Right now, the applications are for encouraging physical activity and decreasing loneliness, but in the future, we hope it will be used for people with disabilities who want to live independently,” she said.
Unlike robots that speak from a list of programmed possible responses, Nao can engage in spontaneous conversation, Tichá said.
“It’s really exciting, despite some apprehension from service providers about having this robot interact with clients,” she said. “I understand family members who might be concerned about the implications of ChatGPT, but as a researcher I know we need to try this given the caregiver staffing shortage.”
Another Research Day poster, Exploring Post-school Goal Expectations of Students with Disabilities, is led by former ICI Director David R. Johnson and colleagues Yi-Chen Wu and Martha Thurlow. Particularly among students with significant cognitive disabilities who take alternative assessments and English learners with disabilities, Johnson said, there is still much work to be done to boost participation in planning for post-school transitions.
“This work centers around the long-term aspirations of students and how they think about achieving goals after high school,” Johnson said. “There are still a lot of gaps when it comes to whether families are receiving the information they need about opportunities, including how to finance postsecondary education opportunities, for example.”
Disparities in Service Access and Waitlists for People with Intellectual and Developmental Disabilities will highlight differences in service availability, and in the reporting of services, among states. These differences can mask important trends that highlight critical areas of need, said Jon Neidorf, an ICI researcher.
“Knowing about these differences matters in terms of understanding the urgency of services needed in a state,” he said. “States may report that they don’t even have a waiting list, but our poster will push back on that idea and show that doesn’t mean that people are actually getting a sufficient level of services.”
Understanding how states report this data can offer perspective on issues such as the staffing crisis, said Brian Begin, who works on the Institute’s Residential Information Systems Project, a longitudinal study of long-term supports and services.
“If states don’t have a sufficient number of direct support professionals, they won’t be able to support people with disabilities to come off the waitlist,” he said.
Another poster, The Self-Determined Career Development Model Supporting People with Disabilities: A Systematic Synthesis, will highlight the many barriers that people with disabilities encounter in seeking employment, said ICI’s Julie Kramme.
“A persistent approach with the appropriate level of support, along with opportunities for people to practice self-determination, will help people meet their goals,” Kramme said.
“Educators need fresh, actionable strategies to help them better understand the unique needs of students and their families,” Funfe Tatah Mentan said. “Particularly for families participating in individualized education plans (IEPs), language and cultural barriers and a lack of empathy from educators can lead to lack of access to educational resources or inequities in services.”
And Yue Wu, a post-doctoral fellow at ICI, will present her work with Light in the Well, an original music production promoting inclusion for individuals with disabilities.
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.”
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.”
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.
Note: This feature story is part of “Where Discovery Creates Hope”—a monthly series filmed by the Star Tribune. Sponsored by the University of Minnesota Medical School, these articles appear in the newspaper every month. The articles and videos are posted on the Star Tribune website and social media. This article also appeared on the websites of the UMN Medical School and of ICI’s home, the Masonic Institute for the Developing Brain.
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.
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 and Solomiia.
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.”
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.
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.
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.
Researcher and former ICI staff member John Bielinski is also an avid hiker.
From evaluating how the COVID-19 pandemic affected learning to advocating for the most efficient dyslexia screening tools, John Bielinski continues to innovate in the student assessment field.
This week, Bielinski and colleague Rachel Brown, both of education technology company Renaissance, presented Demystifying Dyslexia: The History, Research, and Best Practices for Supporting All Students, a webinar for teachers, school leaders, psychologists, and other professionals.
“The term ‘dyslexia’ has been around a long time, and identifying students with learning disabilities is what our assessments are designed to do, but in this forum, we wanted to talk to educators and other school personnel about the latest information on screening,” said Bielinski, who early in his career spent five years at the National Center on Educational Outcomes as a graduate research assistant and then a research associate. “We’re raising the question of whether additional dyslexia screening tests are necessary, given the other screening schools do. Testing should be as brief and unobtrusive as possible.”
This point may be particularly salient today, as students come back to the classroom after significant pandemic disruptions in recent years. Bielinski and his team led a pair of studies comparing student performance in the spring of 2020 and 2021 to previous years, finding that reading and math scores dipped significantly.
“John was a critical part of the NCEO staff,” said Martha Thurlow, senior research associate at NCEO, a designated center within the Institute on Community Integration. “He was always willing to explain his procedures and help us learn how assessments could be developed to best meet the needs of students with disabilities.”
He continued working in the field after leaving NCEO in 2002, and joined FastBridge Learning, a startup created by Ted Christ and colleagues in the Department of Educational Psychology, in 2018. FastBridge has since been acquired, most recently by Renaissance. In addition to his current career interests, he said, he rarely passes up an opportunity to hike a trail.
Sheryl Lazarus, now NCEO’s director, was a graduate research assistant when Bielinski was working at the organization.
“I appreciated John’s patience and willingness to answer my many questions about assessments and measurement,” she said.
At NCEO, Bielinski developed a career-long interest in helping students who are struggling to learn.
“I am particularly interested in the many students who aren’t succeeding, but who haven’t qualified for special services,” he said. “What can we do on the assessment side to identify them and do something useful to support their learning needs?”
If acceptance is a path to peace, Norway House in Minneapolis moves the community a step closer this month as it hosts woven from life itself, an Art for All exhibit celebrating disability pride and pride in other identities.
The exhibition, open now through Oct. 30 at The Galleri at Norway House, 913 E. Franklin Ave., features works by local and Norwegian artists, including photography, paintings, fiber art, documentary film, and music.
The collaboration between ICI’s Art for All: The Stephanie Evelo Program for Art Inclusion, and the Minnesota Peace Initiative at Norway House in the Ventura Village neighborhood of Minneapolis offers a unique voice in depicting peace and coexistence, organizers said.
Challenging artists to contribute works depicting an aspect of peace resulted in a show that celebrates acceptance in the pursuit of disability justice, said Max Stevenson, director of exhibitions at Norway House.
“The artists are reflecting an inner peace,” he said. “It’s as if they are saying, ‘I’ve accepted myself and now the community accepts me as I bring awareness to my story and my art.’”
Nik Fernholz, program manager for Art for All, said the exhibit fulfills the program’s ongoing mission to bring the work of artists with disabilities into new communities.
“We are thrilled to have our permanent gallery at the Masonic Institute for the Developing Brain , but it’s also important to get out into communities to promote disability as a strength to be celebrated in the art world,” said Fernholz. “We connect with one another as we weave these identities. So that is woven from life itself – the unique identities that make up who we are as individuals, and the unique set of artists we’ve been able to curate.”
Featured artists include David “Mack” McDonnell-Forney (landscape photography), Janette Tafoya Giles (watercolor), and Ingrid Hansen (watercolor, others) of Minnesota and Frode Felipe Schjelderup of Stavanger, Norway, who incorporates heavy metal music and other influences into his drawings and paintings. Work by documentarian Heidi Benedict Sundby and musician Bjørn Hatterud, both of Oslo, are also included.
A new acquisition for the Art for All permanent collection, a painting titled ”Little Waterfall” by William Britt, is also on display.
“It’s been fun to see people’s reactions to the multimedia aspects of the exhibit,” Stevenson said. “People sit down and get engrossed in this film by an artist who documents life with her child with disabilities, and then start conversations about what it must be like to have this whole new world view quite unexpectedly.
“And then to have Frode’s work, with its connection to heavy metal music, which is very popular in Norway, is just great,” he said.
During the exhibit run, Norway House itself will celebrate the grand opening of its Innovation + Culture Center from 10 a.m. to 2 p.m. on October 15.
Direct support professional Sheila Clark with Greg at the store where he works. They appear on the cover of Frontline Initiative, a magazine published by the College’s Institute on Community Integration and the National Alliance for Direct Support Professionals.
The latest edition of Frontline Initiativecelebrates lesser-heard voices among direct support professionals. The issue — now also available in Spanish — features authors who are DSPs from diverse ethnic, racial, cultural, and other backgrounds.
“This issue was intended to start needed conversations,” FI co-editor Julie Kramme said in a video introduction to the issue. “It’s about listening, and broadening our understanding.”
Kramme, along with ICI researchers Julie Bershadsky and Sandy Pettingell, wrote an article in the issue that details the Institute’s studies, in partnership with the National Alliance for Direct Support Professionals, that found racial disparities in DSP wages. The study also asked about working hours and conditions at critical points during the pandemic.
Other authors include Karen DeBartolo, a DSP who is deaf and who supports someone who is also deaf.
“I felt honored to be part of the issue,” DeBartolo said. “[I wanted to paint] the real picture of working as a DSP, not making it sound like our job is easy and a bed of flowers. People will read that article and they will know what a DSP stands for and how hard our jobs are.”
In another article, authors Nicole Dama and John Raffaele highlighted recent webinars about systemic racism, demographics of the DSP workforce and the implications during COVID-19, and practical steps and conversations about race in relation to the DSP field.
In A Church Home for Willie, author John Swisher writes about his months-long effort to find a church that was a good fit for the person he supported.
That interplay between honoring the culture and background of both a DSP and the person receiving support was a strong theme of the issue, Kramme said. It isn’t about trying to bring a blank slate to work, but about bringing who you are to the relationship and understanding how that affects the professional relationship.
“This issue was really years in the making,” Kramme said. “The first time we started asking DSPs about what they wanted to address, there were people mentioning the importance of intercultural supports. Many DSPs speak languages and have cultural practices that differ from those of the people they support. These can be both barriers and facilitators to high-quality supports.”
Co-editor Chet Tschetter agreed, and both editors made it clear there are still many more articles to tackle on the subject.
“We feel like we’ve only touched the surface,” Tschetter said. “With everything that’s been going on in our society, we wanted to bring to light the rich diversity of the people working in this field. There are a lot more stories to tell, and we’re hoping people will feel comfortable telling them in future issues. This issue is a door-opener, so we can keep going deeper.”
Jack Bird makes candles in his hometown of Auckland, New Zealand. His story is one of many in the new issue of Impact, which provides a global context on the transition from school to adulthood for young people with intellectual, developmental, and other disabilities.
The latest issue of Impact places the critical period of transition from school to adulthood in a global context.
Articles include a call for educators around the world to link transition programs for youth with intellectual, developmental, and other disabilities (IDD) more closely to inclusive, real-world situations. People with IDD and their families tell their personal transition stories, and successful programs around the world share how they support young people as they move into the adult years.
“This issue brings to the forefront the different philosophies and approaches to secondary transition of youth with disabilities across different countries, broadening our perspective on this important life milestone,” Tichá said. “Our collective work in the field played key roles in informing this issue.”
Abery, Tichá, and Šiška, an associate professor at Charles University and University of West Bohemia, Czech Republic, also are collaborating on U.S. and Czech transition grants. Šiška is a visiting Fulbright-Masaryk research scholar at the Institute.
Working internationally brings an additional dimension to understanding secondary transition in the context of different cultures, practices, and policies. The group recently visited Japan as part of a trip funded by the U.S. Embassy in Tokyo that was focused on the transition to employment for people with disabilities. They found some common points of emphasis, such as work-based learning, but also key differences. A greater emphasis in Japan on collaboration and teamwork is a promising practice to try in the United States, for example.
“We wanted to show there are multiple ways of approaching transition, and that we can learn from one another,” said Stancliffe, an emeritus professor from the University of Sydney [Australia] who is a senior research associate at the Institute and an issue editor for the Feature Issue on Transition in a Global Context for People with Intellectual, Developmental, and Other Disabilities.
For 35 years, Impact has brought together editors and authors from diverse sectors of the disability field to bring perspective to research, share practice strategies, and tell the personal stories of people with intellectual and developmental disabilities and their families.
