Heidi Myhre (pictured in the center with current and former ICI staff) this week welcomed guests of the Institute to a 35th anniversary celebration for Impact, ICI’s flagship publication, which advances the inclusion of people with disabilities in their communities of choice.
The celebration at the Masonic Institute for the Developing Brain included recollections from current and former ICI staffers, colleagues, and other friends of the organization who have contributed articles over the years.
“I vividly remember the first time I was asked to be an editor for an issue of Impact,” ICI Director Amy Hewitt (second from left) recalled at the celebration. “It was such an honor to be asked, and I felt it marked a turning point in my career.”
Myhre, a member of the Institute’s Self Advocate Action Committee, has served frequently as an Impact author. In the spring anniversary issue, she wrote an article about why the publication remains relevant.
“Impact was put together to educate about topics in intellectual and developmental disabilities, and for us to know we’re not alone. It brings new knowledge to people who don’t understand disability and to us as advocates and self-advocates, and to people all over the world,” she wrote. “Each issue is a little different, but it always tells a story and we learn something about why people with disabilities stand up for our rights and how we make a difference in the world.”
Myhre’s work with Impact, and ICI, has been insightful, said Janet Stewart, Impact’s managing editor.
“Heidi’s attention to detail in writing her articles has been impressive,” Stewart said. “She has a real knack for getting to the heart of an issue and engaging people around her to better understand an important issue.”
In addition to her work on the committee and with Impact, Myhre has participated in several ICI research and education projects. Recently, she and other self-advocates starred in a two-part video series, In Our Own Words: Improving Care for People with Disabilities, which focuses on communication tips and detailed suggestions for providing the most appropriate care settings for people with a variety of disabilities.
“I like doing those projects and seeing all the different angles,” she said of her advocacy work. “If providers take the training videos seriously, if they actually hear us, the training will help a lot of people. We can do all the training and have all the data in the world and a lot of people still don’t get it. We hope they’ll hear us, but they have to be willing to listen.”
Click here for a free print or online subscription to Impact.
She urged attendees at the Impact celebration to keep fighting for better wages and benefits for the direct support professionals providing services for people with disabilities.
“The system is broken, and we need a lot more workers just to help us get back to the basic services we need to live independently,” Myhre said. “We still have a lot of work to do.”
Wrapping up her fellowship this spring with the Minnesota Leadership in Neurodevelopmental and Related Disabilities (MNLEND) program, Agnes Cole was also juggling an administrative role at an area service provider and running her own non-profit organization dedicated to supporting people with disabilities to access services.
Cole (MNLEND 2022-23) is founder and executive director, along with her husband, Prince, of the Disability Motivational Network , a nonprofit organization offering support groups and other services to people with disabilities. Both Agnes and Prince were born in West Liberia, Africa, with physical disabilities, and their disability experiences created a passion to help others with disabilities overcome challenges.
Many of the people who come to the organization for support have immigrated to the United States, and they often aren’t aware of important disability services available in their communities, she said.
As a fellow getting to know some of the ongoing research projects at the Institute on Community Integration, she was particularly intrigued with the work of the Residential Information System Project. RISP is a longitudinal study of supports and services for people with intellectual and developmental disabilities (IDD). It is one of three Longitudinal Data Projects of National Significance funded by the Administration on Community Living, and it tracks the living arrangements of people with IDD who are receiving services.
“What really struck me was the large number of people who want to have their disability services delivered at home,” she said. “The waiting lists for receiving home and community-based services (as opposed to large institutions or intermediate care facilities) is so long. We need to allow family members to take care of their loved ones, and many are not even aware of their options.”
Cole contributed to a forthcoming ICI Policy Research Brief that explores the marked differences in waiting times for services delivered in institutional facilities compared with home-based services, which are delivered under a waiver system.
“Agnes is curious and a real advocate,” said Sheryl Larson, principal investigator of the RISP project. “It was very clear to her that what was happening needs to change. She was very much part of the team and made sure that when we made the policy recommendations, they made sense to her.”
Cole earned a master’s degree in healthcare and human services administration from St. Mary’s University in 2018. In addition to her nonprofit work, she also works part time in an administrative role at Thomas Allen, a provider of services for people with disabilities.
“The LEND program gave me the insight to look at service delivery from a different perspective,” she said. “Before, I just had the experience of working with the system as someone supporting my husband. Now I’m able to speak up and say, ‘let’s try a different way’.”
They fought back against abuse in institutions and forced sterilization. Moving north to escape Jim Crow laws, they tied disability rights to civil rights. Denied access to jobs and education, they persisted, and won critical victories.
Staff members and guests of the Institute on Community Integration recently gathered in St. Paul to hear stories about the remarkable lives, and sometimes brutal treatment, of people with disabilities who fought for their right to live and die with dignity in their communities.
Mel Duncan (pictured), a longtime activist who helped create the disability rights organization Advocating Change Together, shared stories from the 1970s, more than 15 years before the Americans with Disabilities Act prohibited discrimination in employment, transportation, public accommodations, and other areas of community life.
“In the fall of 1975, I was told there was someone who kept calling and wanting to know about the advocacy program, and would I go talk to him? So, I went up to JR Suddeth’s apartment on Plymouth Avenue to talk to him,” Duncan said. “Our grant was set up to organize a cadre of volunteers and we were to take cases regarding human rights, education, financial assistance, day programs and housing, but JR wanted to go deeper than that. He saw disability rights through the prism of Black civil rights. He was born in Alabama, and his family came to Minnesota to escape Jim Crow laws. We decided to use voter registration as a vehicle to talk to people about their civil rights.”
Duncan also shared stories about disability activists Ken Tice and Gloria Steinbring. Steinbring, who died in 2016, helped organize underpaid workers in sheltered workshops, played a key role in passing a state law limiting the use of restraints, and worked with the Remembering With Dignity project, which honored people with disabilities who lived and died in Minnesota institutions with proper grave markers.
“Getting ready for that talk really took me back to both the exhilaration and the pain that was concomitant,” Duncan said in a follow-up interview. “It was a time when people with disabilities were struggling with their humanity, and to be recognized. They didn’t want to adapt; it was time society adapted to them.”
Two of Duncan’s colleagues from the era, Tinka Kurth and Pat Helmbrecht, attended the event, with Duncan noting that while they are still living, all of the people with disabilities being honored in his presentation are now deceased. Disparities in the length of the lifespan of people with disabilities compared with those without disabilities prove that there is still much advocacy work to be done, Duncan said.
Telling the stories of Judith “Judy” Heumann and Ed Roberts, Dave Hancox shared one of his favorite quotes from Roberts, who created the first center for independent living and who led California’s department of vocational rehabilitation.
“He used to say that if you’re not living on the edge, you’re taking up too much space,” recalled Hancox, chief administrative officer for Accra, a provider of homecare services to people with disabilities. “Life is about taking risks, and you’re not going to influence change in disability policy or any cause if you’re on the sidelines making observational comments. If you’re not on the edge, it reduces the potential for substantive change. You’ve got to put yourself out there.”
Activist leaders Cliff Poetz, Irving Martin, Larry Lubbers, and Carol Ely, all now deceased, were also among the advocates whose stories were shared during the ICI event.
“In 2003, Cliff wrote an article for the Journal of Intellectual and Developmental Disabilities that conveyed three messages: We want to control our lives, we need to be paid for the work we do, and we need to stop being called mentally retarded,” said Charlie Lakin, a former director of ICI’s Rehabilitation Research and Training Center on Community Living. Lakin and Poetz were close friends and colleagues, and Lakin shared several stories from their work together over the years. During his life, Poetz received numerous awards and served on several disability organization boards.
He was passionate about pay equity for direct support professionals, who assist people with disabilities to live full lives in the community, Lakin said. Poetz also contributed a great deal of effort to Remembering With Dignity, a project to place proper gravestones to honor people who lived and died in state institutions between 1866 and 1997 and who were buried in anonymous graves. In 2010, as a result of this work, the state of Minnesota issued an official apology.
Another former ICI staff member, Beth Fondell, told the stories of activists Larry Lubbers and Carol Ely. Lubbers, who died in March at 61, was active in the fight to increase pay for people with disabilities who work in sheltered workshops, among other issues.
Ely was a longtime ICI colleague who died in 2016 at age 59. She was a core faculty member on the Minnesota Leadership Education in Neurodevelopmental and Related Disabilities (MNLEND) program, among other roles.
“The loss [of Lubbers] is still fresh for those of us he loved well, and that’s a very large clan,” Fondell said. “Both Carol and Larry were not just passionate advocates, they were compassionate, using their stories and circumstances to foster empathy, respect, gratitude, and connection with the people around them.”
People with disabilities suffered disproportionately during the pandemic, and the new issue of Frontline Initiative helps direct support professionals better understand how to support people with disabilities with their ongoing physical and emotional health needs.
“We learned a lot of good things during COVID-19 about slowing down and getting to know what’s important to people with disabilities and what we need to focus on to help them take care of themselves, whether that’s nutrition, becoming more active, or learning about meditation,” said FI co-editor Chet Tschetter.
DSPs play an important role in supporting people as they navigate experiences with healthcare providers, as well as their own personal health and wellness goals, said co-editor Julie Kramme.
“DSPs are right there, supporting the person and knowing what’s important to them,” Kramme said.
The issue includes several practical tips and resources, including an article by LeAnn Bieber, a parent of a daughter with disabilities, who is also a trainer in person-centered thinking skills. Her article steps readers through the process of creating a one-page description that can help make health care appointments more successful. In the article, Bieber shares the description she and her daughter Melissa created.
A difficult dental appointment prompted the exercise, the author said, and the document has proven to be valuable for other providers as well.
“It’s a challenge for all of us to keep healthy,” LeAnn Bieber said. “With a disability, there are even more barriers, so whatever we can put in place can be critical for the overall health of someone with disabilities. Communication is the key takeaway from all of this, and any of the tools we use are helpful for anyone going through the health care process.”
In another article, Craig Escudé discusses several clinical “pearls” from his book, Pearls in IDD Healthcare.
DSP Karen DeBartolo of Sacramento, California, writes about how she supports her longtime employer, Amy Neeley, with Neeley’s nutrition and wellness goals. That includes keeping tabs on her own wellness.
“Working as a DSP can be stressful and tiring, especially when we work so many hours,” DeBartolo writes. “As DSPs, we must take care of ourselves so we can come to work with a positive attitude and support people. The people we support depend on our well-being.”
The Institute on Community Integration’s flagship publication, Impact, celebrates 35 years as a research-to-practice guide for the field of intellectual, developmental, and other disabilities in the current feature issue.
ICI Director Amy Hewitt, along with each former director, reflect on the publication’s growth and relevance over time. A “best of” collection of resources includes a foldout disability history timeline in the print edition, and several readers and former authors reflect on what Impact means to them and on their lives and challenges today.
From its beginnings as a 12-page newsletter on case management, Impact has grown to include personal stories, practical how-to articles, profiles of promising programs and practitioners sharing their best how-to tips as they work to implement the latest, best practices for people with disabilities to live lives of their own choosing.
Now available in print and accessible digital formats, with the digital edition available in English and Spanish, Impact has embraced continuous improvement to remain relevant, Hewitt said. In addition to several digital enhancements over time, the latest print issue uses 100 percent post-consumer waste.
“Impact has stood the test of time because it stays true to its mission of focusing on community priorities and connecting research to policy and practice,” Hewitt said. “From its earliest days, the publication has included the perspective of people with intellectual and developmental disabilities themselves.”
Hewitt served as an issue editor, along with John Smith, a longtime ICI research specialist who has contributed to the publication as an author and as a knowledge translation specialist. Smith helped develop Impact’s clear-language translations, which accompany the publication’s articles that include more complex language.
“Impact shares research-based information grounded in the stories of people with intellectual/developmental disabilities and their families, and of the work of exemplary programs and DSPs,” Smith said. “One of its strengths is its ability to reach multiple audiences with information that is interesting, timely, and relevant. I especially like the way it shares ideas that are actionable in making our communities more inclusive of everyone. I am sure it will continue to raise everyone’s expectations and keep people excited.”
Robert Bruininks, ICI’s founding director and a former University of Minnesota president, contributed an article for the issue that describes the earliest thinking about what the publication would address.
“The aspiration was to make ICI a force for change and reform,” Bruininks writes. “We felt that we needed to get relevant and clear information to people on a timelier basis [compared to the typical three-year research publication cycle].”
Ryan King, who was featured on a 2019 cover of Impact that focused on supported decision-making, contributed an update for the anniversary issue that shares his recent experience testifying before the Senate Special Committee on Aging about his and his family’s efforts to end his guardianship arrangement.
“One of the important contributions of Impact has been to take on topics that are infrequently discussed or just not openly talked about at all,” former ICI Director David Johnson writes in his reflection for the issue. “We have never been afraid to put forward an issue that would challenge our audience.”
So, which topics should Impact take on next? Send your ideas to Janet Stewart, Impact managing editor, at stew0390@umn.edu.
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.”
U.S. Senator Tina Smith (left), who was represented at the event by a health policy staffer, spoke about the importance of disability advocates.
The Institute and partners from The Arc Minnesota recently met with staff members supporting Minnesota’s Congressional delegation as part of the annual Disability Policy Seminar, a virtual forum for advocating for high-priority issues that affect people with intellectual and developmental disabilities.
Participants included several fellows from the Minnesota Leadership Education in Neurodevelopmental and Related Disorders (MNLEND) program, Institute staff members, and several self-advocates.
“The people closest to the problem know it best and understand how to find solutions, so I’m grateful whenever my staff and I have the opportunity to speak with disability advocates and talk about ways we can make life better for those living with disabilities,” said U.S. Senator Tina Smith, who was represented at the event by a health policy staffer. “I look forward to continuing our work together and appreciate all their important advocacy.”
Macdonald Metzger, ICI’s director of outreach, said the annual event is a reminder to policymakers that the Institute is an important resource for them in understanding and advocating for issues important to people with disabilities.
“I highly appreciated having the opportunity to speak at the event as a constituent of U.S. Representative Dean Phillips,” said Milena Bates (MNLEND 2021-22), co-founder of the Minnesota Autistic Alliance. “I talked about the Transformation to Competitive Integrated Employment Act, which is a bipartisan bill that would create grants for states to aid in transitioning from subminimum wage to competitive employment by creating technical assistance centers and establishing reporting requirements. Minnesota is among the states with the highest number of employees working for subminimum wage, so inclusive employment and workplace training are extremely important here.”
The sessions were also an opportunity for legislative staff members “to hear directly from people with disabilities, their families, and other supporters about how policies affect their day-to-day lives,” said Barbara Kleist, program director for entrepreneurial and development programs at the Institute.
Kleist, the sibling of a person with disabilities, shared details about the current workforce crisis in Minnesota, as well as how the crisis is affecting her own ability to balance work while filling in gaps in staffing support her sibling receives.
“The visit was a great event and useful for anyone, but especially those engaging in academic or theoretical work because it encourages us to think through the pragmatic applications to people’s lives these issues have,” said Akeem Anderson (MNLEND 2022-23), a University of Minnesota J.D./Ph.D. student who is also enrolled in the Institute’s Disability Policy and Services Certificate program. “I was able to discuss disability funding and the economic disenfranchisement of people with disabilities. Our representatives are often very responsive and supportive of these issues, so I tried to think through the arguments and give them tools to advocate on our behalf.”
Amy Hewitt, PhD, is Director of the Institute on Community Integration at the University of Minnesota.
President Biden’s recent, wide-ranging executive order to improve our nation’s care system represents the most comprehensive step any president has taken to support care workers and family caregivers and to make care more accessible to working families.
We applaud this commitment to the direct care workforce, which includes childcare workers, personal care assistants, caregivers in nursing facilities, family caregivers, and direct support professionals. DSPs support individuals with intellectual and developmental disabilities in living full lives in their communities. Their complex work includes many tasks performed by caregivers, nurses, teachers, therapists, and more. And yet, this role is not well understood and has been overlooked in some of the recent news coverage surrounding the executive order. Efforts made to strengthen and professionalize the direct support workforce – evidence-based training, credentialing, mentoring, career lattices – can help raise the status of everyone working in direct care and will make a tangible improvement in the lives of people with disabilities. The April 27 reintroduction of legislation to create a standard occupational code for DSPs was welcome news and would create better understanding and measurement of the workforce. It would also help states determine more accurate reimbursement rates for support services.
Over the last three decades, through persistent advocacy, services for people with intellectual and developmental disabilities (IDD) have largely moved from segregated care in large institutions to a robust and highly varied network of community supports. Federal legislation codified the values of inclusion and access and the disability services field created a body of research and evidence-based practices that have resulted in meaningful advances in the self-determination and quality of life of people with IDD. Today, due to labor shortages and high turnover rates that pre-dated but grew far worse during the COVID-19 pandemic, many community programs for people with IDD across the country have started closing – some permanently. People in smaller residences are being moved to larger congregate facilities or back home to live with elderly parents. Waiting lists are growing. Most importantly, people with IDD, as well as their families, are experiencing dangerous service disruptions that put them at risk of losing their hard-won lives in the community. The gains made over decades are being reversed.
Meanwhile, the work of DSPs has become substantially more complex. They now support people with disabilities in a range of settings, including family homes, local businesses, intermediate care facilities, small group homes, vocational and day training programs. They work with people across the lifespan, helping them make informed decisions and seek competitive integrated employment, keeping them healthy and safe, dispensing medication, implementing medical intervention protocols, communicating with medical and other professionals, and identifying emerging signs of illness or disease. They provide assistance with daily living skills, encourage healthy lifestyles, and foster connections with family and friends. Their work requires skilled judgment and decision-making, teaching, counseling, creativity, and much more.
For all of this, DSPs earn about $14.50 per hour and their inflation-adjusted wages continue to decline. It is little surprise that the annual DSP turnover rate exceeds 43 percent.
The Institute on Community Integration at the University of Minnesota and other University Centers for Excellence in Developmental Disabilities have played an important role in training the support workforce and helping disability service providers respond to these challenges.
Our Direct Support Workforce Solutions group recently partnered with officials in Tennessee and Rhode Island to create tools and strategies for improving DSP recruitment and retention rates, for example. We’ve created realistic job previews that help explain the work to prospective DSPs, and stressed the importance of advocacy in the work. We also led a national effort to develop and validate the National Frontline Supervisor Competency Set, an important task in professionalizing the direct support workforce. We look forward to expanding these initiatives to recruit and retain workers as called for under the President’s executive order.
The President included disability in the conversation about our country’s dire caregiver shortage, and it is important to underscore the distinct roles played by professionals in this field. The solutions aren’t the same for a nurse or a direct support professional or an early childhood teacher, and it will be important to ensure that the training, education, and innovative funding opportunities created through this order address each of those fields.
As the President said, it will be up to Congress to make the additional, urgently needed investments in the care workforce, which will then need to be matched by state legislative bodies. The executive order opens a window of opportunity, however. If you have a loved one with a disability, or an aging parent, or young children, we urge you to let your representatives know how critical this workforce is to you and your family.
The Boston family are the cover story in the current issue of Impact, which is about engaging communities underrepresented in disability research.
The new issue of Impact highlights critical disability research questions derived from the recent State of the Science meeting at ICI’s Research and Training Center on Community Living (RTC-CL). The issue is also available in Spanish.
What, exactly, is cultural competence in a research context? How do people with disabilities from historically marginalized communities learn about job opportunities and how can we get information to them faster? What are the strengths of families in marginalized communities in relation to family support? How can we better engage people with intellectual and developmental disabilities (IDD) in all aspects of research into social inclusion and belonging and other important aspects of community life?
Engaging Communities Underrepresented in Disability Research spells out a long-overdue research agenda and includes a cultural framework for IDD research written by issue editor Tawara Goode, director of the Georgetown University National Center on Cultural Competence. Julie Bershadsky, director of ICI’s Community Living and Employment focus area; and Teresa Nguyen, director of the Community Living Equity Center at Brandeis University’s Institute for Disability Policy, also served as issue editors.
“It was refreshing to see this Impact issue come together, with a wide range of stakeholders contributing their personal stories,” Nguyen said. “The focus on improving research equity by increasing engagement in the disability community, especially those from minoritized groups, is a critical step in addressing disability equity.”
The cover story features the Boston family of Kalamazoo, Michigan. Leonard Boston is a board member of Parent to Parent USA, an organization for parents of children with disabilities. His article shares his family’s experiences becoming involved in research in the Angelman syndrome community.
Noting he and his wife, Latrieva, were often the only people of color at fundraising events for disability research, Boston shares what getting involved in research and advocacy has done for his family.
Another State of the Science attendee, Anjali Forber-Pratt, shares her personal history as a noted athlete and now director of the National Institute of Disability, Independent Living, and Rehabilitation Research.
“At my school, the Black students were bused in from the city and there was me and a Korean adoptee, who were essentially the students of color in the school,” Forber-Pratt writes. “We can’t be afraid to talk about that, to dissect it, and study it. The layers and systemic forces of oppression that I experienced are at the heart of what we mean by intersectional research.”
Other articles in the issue address the dynamics of race, culture, language and other factors on employment, families, social lives, criminal justice, and living arrangements of people with disabilities.
“The issue takes necessary and bold steps calling for equity, immediately, in the disability research community,” Goode said. “Persons who experience disabilities and their families from minoritized racial, ethnic, linguistic, and cultural groups share compelling stories that must drive the questions and approaches for a collaborative research agenda that has meaning in their lives and improves policy and practice in their communities.”
Bershadsky, one of the leaders of the State of the Science meeting, said the meeting and the Impact issue bring long-overdue attention to communities historically left behind.
“I am so glad to see this issue come together,” she said. “It brings forth voices that need to be heard, and thus far have not been heard from nearly enough. I am hopeful this is a harbinger of better things to come.”
Nao, a socially assistive robot, is the subject of an ICI research poster being displayed at CEHD Research and Innovation Day 2023 on March 23. The poster summarizes ICI’s collaboration with the University’s College of Science and Engineering that is exploring the use of robots equipped with artificial intelligence to interact with people who are aging and encourage them to be physically active. It is one of seven research posters that ICI is displaying at this year’s event.
“When we were talking about putting together our poster, I realized that three of the people who are working on the research grant with me are people with disabilities themselves, and I was just curious to know from them how they have experienced research poster sessions in the past,” said Tichá, a senior research associate at the Institute. “Do these events even matter to them?”
One of her colleagues, Roqayah Ajaj, who is blind, shared that she rarely attends these events anymore, in part because she doesn’t have consistent access to aides who can attend the event and accurately describe the posters.
That led to conversations about trying a few things for this year’s event to learn what accessibility measures worked or didn’t work. They created a braille version of their handouts, which were also made accessible for people who use screen readers. Another colleague reviewed the content for plain-language accessibility and helped create a glossary of terms that would make the research clear to a non-scientific visitor or someone with intellectual disability, among other ideas.
“Many times, speakers will point to their posters without describing the visuals, and if I have someone with me, they will try to describe them, but the information often gets lost, so my colleague, Emily Unholz-Bowden, and I are making sure that we not only have visuals but we are confident in engaging with people to describe them,” along with the technical accessibility features, she said.
The group’s work focuses on improving programs for youth with disabilities who are transitioning from high school to adult life, part of a five-year initiative with Minnesota’s Departments of Employment and Economic Security, Education, and Human Services; local education agencies, and other organizations.
“Through a landscape analysis we are trying to highlight the challenges of youth with disabilities who are roughly 16 to 23 years old,” Tichá said. “We’re finding that these programs can be quite segregated, but by having the state leadership on this project, we are hopeful that the transition tools being built will be used in conjunction with real opportunities to connect to competitive employment and integrated post-secondary education.”
Tichá also will lead a poster summarizing ICI’s collaboration with the University’s College of Science and Engineering that is exploring the use of robots equipped with artificial intelligence to interact with people who are aging and encourage them to be physically active. Enhancing Physical Activity Among Older Adults Using Nao, a Socially Assistive Robot (SAR) is funded through a CEHD Jump Start seed grant.
Nao can dance, ask questions, tell jokes, move around, and complete many other tasks, said Maryam Mahmoudi, an ICI researcher. Programmed to provide access to objects for individuals with physical disabilities and aging adults, Nao can also engage in reciprocal conversations with a high level of accuracy, and even understand a variety of accents.
“Right now, the applications are for encouraging physical activity and decreasing loneliness, but in the future, we hope it will be used for people with disabilities who want to live independently,” she said.
Unlike robots that speak from a list of programmed possible responses, Nao can engage in spontaneous conversation, Tichá said.
“It’s really exciting, despite some apprehension from service providers about having this robot interact with clients,” she said. “I understand family members who might be concerned about the implications of ChatGPT, but as a researcher I know we need to try this given the caregiver staffing shortage.”
Another Research Day poster, Exploring Post-school Goal Expectations of Students with Disabilities, is led by former ICI Director David R. Johnson and colleagues Yi-Chen Wu and Martha Thurlow. Particularly among students with significant cognitive disabilities who take alternative assessments and English learners with disabilities, Johnson said, there is still much work to be done to boost participation in planning for post-school transitions.
“This work centers around the long-term aspirations of students and how they think about achieving goals after high school,” Johnson said. “There are still a lot of gaps when it comes to whether families are receiving the information they need about opportunities, including how to finance postsecondary education opportunities, for example.”
Disparities in Service Access and Waitlists for People with Intellectual and Developmental Disabilities will highlight differences in service availability, and in the reporting of services, among states. These differences can mask important trends that highlight critical areas of need, said Jon Neidorf, an ICI researcher.
“Knowing about these differences matters in terms of understanding the urgency of services needed in a state,” he said. “States may report that they don’t even have a waiting list, but our poster will push back on that idea and show that doesn’t mean that people are actually getting a sufficient level of services.”
Understanding how states report this data can offer perspective on issues such as the staffing crisis, said Brian Begin, who works on the Institute’s Residential Information Systems Project, a longitudinal study of long-term supports and services.
“If states don’t have a sufficient number of direct support professionals, they won’t be able to support people with disabilities to come off the waitlist,” he said.
Another poster, The Self-Determined Career Development Model Supporting People with Disabilities: A Systematic Synthesis, will highlight the many barriers that people with disabilities encounter in seeking employment, said ICI’s Julie Kramme.
“A persistent approach with the appropriate level of support, along with opportunities for people to practice self-determination, will help people meet their goals,” Kramme said.
“Educators need fresh, actionable strategies to help them better understand the unique needs of students and their families,” Funfe Tatah Mentan said. “Particularly for families participating in individualized education plans (IEPs), language and cultural barriers and a lack of empathy from educators can lead to lack of access to educational resources or inequities in services.”
And Yue Wu, a post-doctoral fellow at ICI, will present her work with Light in the Well, an original music production promoting inclusion for individuals with disabilities.
Jails and prisons are now the biggest source of incoming residents to large state-run institutions for people with intellectual and developmental disabilities (IDD). So, what does that mean for people with IDD?
Nearly 3 in 10 people moving into large, state-run institutions for people with intellectual and/or developmental disabilities (IDD) come from the criminal justice system. And 17 percent of people leaving those institutions go to criminal justice system settings.
Overall, it’s important to understand that in 2019, just 7 percent of people in large state-run IDD institutions had prior involvement with the criminal justice system. Acknowledging these findings and creating more opportunities for people with IDD to thrive outside of large facilities is the focus of a Feb. 14 Policy Forum.
The online event is from 11:30 to 1 p.m. on Feb. 14 and is free and open to the public.
Policy recommendations to be discussed include stabilizing the direct support workforce as a way to better support people with significant needs living in community settings, and studying how historically marginalized racial and ethnic populations with IDD fare in the criminal justice system.
“People with IDD experience tremendous harm at multiple points in the legal process, from wrongful arrests and convictions based on coerced confessions, to periods of legal limbo when they are found incompetent to stand trial due to their disability,” said Pamila Lew, senior counsel at Disability Rights California, one of the invited forum speakers. “Once incarcerated, people with IDD can be targets of violence, and they frequently experience isolation due to being placed in solitary confinement, supposedly for their own protection or as punishment for perceived non-compliance. I’m looking forward to the forum to discuss how we can work toward creating better options.”
The policy research brief draws on decades of research conducted at the Institute’s Research and Training Center on Community Living that tracks the living arrangements of people with IDD who receive long-term Medicaid or state-funded support services. The Residential Information Systems Project (RISP) annually surveys state IDD agencies and the remaining large state-run IDD institutions about the types and sizes of the places people with IDD receiving services live. The RISP has, over the last several decades, charted the dramatic decline in institutionalization of people with IDD as more people get the support they need while living with family members or in other community homes.
As the number of people living in state-run IDD institutions declined from 194,600 in 1967 to 16,200 in 2019, the proportion of people entering those facilities from jails and prisons increased to 29 percent, now the largest source of incoming residents. While 61 percent of people leaving state-run IDD institutions move to group homes, their own home, the home of a family member or a host or foster family home, the rest moved to another institution, most commonly a correctional facility.
“This movement to and from the corrections system deserves attention,” said Sheryl Larson, RISP director and an ICI principal investigator who has charted the deinstitutionalization movement since the late 1980s. “It would be even more helpful to have a clearer picture of the number and characteristics of all people with IDD in the criminal justice system.”
The percentage increase in people moving between institutions and the correctional system doesn’t reveal how prevalent IDD is in the overall corrections population, for example, Larson said. Except for some data tracking of juveniles in the corrections system, surveys also don’t capture comprehensive data on race, ethnicity, and other characteristics, she said.
“Movement of people with IDD between state-run IDD institutions and the correctional system is only a small part of the picture,” Larson said. “We know almost nothing about people with IDD in jails and prisons.”
Beyond the numbers, the policy brief lays out for discussion critical community needs for addressing the implications of the trends in institutional living.
“It comes down to what we can do in the policy world to advance community living for everyone,” Neidorf said. “If we firmly believe that community integration is of value to everyone with IDD, what are the key system changes that need to happen? These are a few things that need to be a lot stronger to support people who do have high levels of need but still deserve to be living in the community.”
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.
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.”
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.
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.
