Success, in smaller steps

September 21, 2023

ICI alum Teri Wallace dropped by the Institute recently to help celebrate the 35th anniversary of Impact magazine.

“It felt like being home,” said Wallace, now the interim associate vice president for research and dean of the extended campus at Minnesota State University, Mankato. “I spent my years with ICI in Pattee Hall, so the structure is of course very different, but the people and the feeling were the same, and I only wish I had more time to sit and reconnect with colleagues.”

Wallace worked at ICI from its earliest days in the late 1980s until 2010, when she left for Mankato to serve as a professor of special education. Starting as a graduate research assistant at ICI, she held a variety of positions, including principal investigator and assistant director.

Today, she’s working on improving Minnesota State Mankato’s transfer system. Last year, for example, the school signed a collaborative agreement with Riverland Community College that helps associate’s degree holders from Riverland to go on to complete their bachelor’s degrees online at Minnesota State. Distance-learning and other flexible options are critical for community college students looking to further their careers, she said, because they are often tied to their current communities due to family and other obligations.

“Last year, we created a university-wide work group to focus on improving our transfer work, and this year I’m working with our newly established transfer operations group and an advisory body to implement the group’s recommendations. It’s very important work for many reasons and it’s a good fit for me because I truly believe in education’s power to transform lives. There are many paths to achieve educational goals and ease of transfer can be an important factor.”

She also serves on Minnesota State’s President’s Commission on Diversity and received the group’s Diversity Champion award in 2019.

“That year I was interim associate vice president for undergraduate education. We changed policies, added academic supports, expanded the first-year experience and learning communities, and all of this lead to increased retention and student success. This work was influenced by perspectives I gained from ICI,” she said of the diversity, equity, and inclusion work. “We want paths forward for everyone, but everyone is in need of a little something different to get there.”

The following year, she served as interim provost and vice president of academic and student affairs for Southwest Minnesota State University in Marshall, before returning to Mankato.

If there’s one thing she’s missing today, Wallace said, it’s working directly with students.

“My goal has always been to help students achieve their goals, and as I approach the end of my career, I’ll return to the faculty to do just that,” she said. “For now, I’m focused on growing our research infrastructure, expanding our partnerships with industry and 2-year colleges, enhancing our transfer supports, and extending our continuing education programs and certificates, which help people take smaller steps to get where they want to go. When we accept students, it’s incumbent on us to help them succeed, and that core belief evolved from my years at ICI, too.”

Identifying autism in Rwanda

September 21, 2023

A village meeting of autism acceptance advocates and community health workers in rural Rwanda in July 2023.

The Institute on Community Integration this summer trained community health workers in Rwanda on identifying the signs of autism in children and on principles for addressing the needs of people with disabilities in rural communities. The work was done in July under a College of Education and Human Development Global Signature Grant.

ICI’s Macdonald Metzger partnered with Autisme Rwanda on the four-day session. Community health workers are the first line of contact for many parents with young children with autism and other disabilities, Metzger said. Staff members from Autisme Rwanda also participated in the training.

“The stigma around autism is the same in Rwanda as it is in many African countries where ICI has provided education and training in recent years,” Metzger said. “With any disability, parents are still often hiding their children in their homes because if they were more visible, they would be excluded from their communities. There is still a priority placed on children without disabilities because they are seen as future providers for the family.”

Part of the work included sharing the principles of community-based rehabilitation, a development strategy created by the World Health Organization that involves people with disabilities, their families, organizations, and other community stakeholders in building local resources to provide community services. Participants also learned how to use Autisme Rwanda’s new mobile app as an autism screening tool.

“Here in Rwanda, we have many kids and adults with autism,” said Rosine Duquesne Kamagaju, founder of Autisme Rwanda. “My hope is that news of this training will spread, and that doctors, teachers, and community health workers will ask for help in caring for them so that they have the opportunity to have a job and a future.”

Including the broader picture of disability from a community development perspective helped put the screening tool training into a useful context for participants, said Pacifique Ndishimye, a research scientist who has served the organization as an advisor.

The screening tool also has functionality that will allow health workers to better track numbers of children with autism, an important factor in acquiring more disability resources, Kamagaju said.

Rwanda established a community health worker program in 1995 to help rebuild its healthcare system after the genocide that killed more than 800,000 people, embedding teams of workers in every village that included maternal and child health education and support.

“They are truly the frontline of healthcare here, and this training will help them in identifying and linking individuals with disabilities to healthcare,” Ndishimye said. “It will also help them provide basic disability-related community health education and counseling.”

Prevalence: Extending ICI’s research

September 21, 2023

Researchers at the Institute on Community Integration are extending their methodologies used in reporting autism prevalence to unlock critical information about cerebral palsy, spina bifida, and muscular dystrophy.

Partnering with Gillette Children’s, a global cerebral palsy research center, the Minnesota-Autism and Developmental Disabilities Monitoring Network (MN-ADDM) team at ICI over the next year will provide surveillance estimates of cerebral palsy in Hennepin, Ramsey, and Anoka counties, which account for nearly 40 percent of the state’s population. The work is part of the Centers for Disease Control’s network of surveillance sites tracking the number and characteristics of children with autism spectrum disorder and other developmental disabilities. Minnesota is one of five states also tracking cerebral palsy prevalence.

“This work will help policymakers allocate resources, better understand the public health needs of families in Minnesota, and improve public awareness and early intervention of cerebral palsy,” said Jennifer Hall-Lande, who leads the Institute’s autism research and serves as principal investigator for the expanded prevalence work.

Under a separate agreement with the CDC, ICI investigators are working to estimate prevalence of spina bifida and muscular dystrophy.

“We’re excited about this work and its potential applications for other populations,” said Julie Bershadsky, director of ICI’s community living and employment focus area. “The latest project to estimate spina bifida prevalence in the United States uses administrative claims data, a promising and cost-effective methodology.”

Another important piece of the new work involves collecting and analyzing personal characteristics of people identified with different disability types, said Libby Hallas, an ICI coordinator working across the different prevalence projects.

“Age, gender, race, ethnicity, co-occurring conditions, and other characteristics help researchers untangle just who is affected and how many, so we can plan for services to meet their needs,” said Hallas.

The ICI team looking at the cerebral palsy data includes Katrina Simons (pictured), an ICI community program specialist who lives with cerebral palsy.

“Prevalence isn’t just about knowing how many people live with a certain disorder; it’s about making sure people who do live with a disorder are able to access the supports that work best for them, so I’m hoping we can move more in that direction as we do this work,” she said. “Knowing there are others out there can make it a little easier to ask for help.”

Oct. 3 Forum: How facility bias affects people with disabilities

September 21, 2023

Promotion about the 10/3/23 Policy Forum, showing part of the cover of Policy Research Brief, 30(2).

Heidi Hamilton, disability services director for the Minnesota Department of Human Services, and Michael Gamel-McCormick, disability policy director for the U.S. Senate Special Committee on Aging, will join researchers at the Institute on Community Integration and others at an Oct. 3 online public forum exploring how disparities in funding for services affects people with disabilities.

The policy forum, Institutional Bias in Long-Term Services and Supports for People with IDD, will be a live discussion of issues raised in a recent ICI Policy Research Brief. The brief recommends policymakers eliminate the funding advantage that intermediate care facilities have as Medicaid entitlements, placing home- and community-based (HCBS) services on equal footing. The brief also calls for enforcing all provisions of the 2014 Medicaid HCBS Rule to promote person-centered services and individual choice, among other recommendations.

“With recent developments in HCBS funding and workforce shortages, it is especially important now not to lose sight of the gains made as people with disabilities moved out of institutions and into community settings where they have much more control over their daily lives,” said Julie Bershadsky, director of ICI’s community living and employment focus area. “This brief explains the roots of the bias toward institutional care, and we are excited for the discussion with key stakeholders it will generate in the policy forum.”

ICI’s Brian Begin, Agnes Cole (MNLEND 2022-23), and Sheryl Larson served as editors of the research brief.

“It struck us as odd that while people with disabilities have better outcomes and prefer home- and community-based services, only services performed in institutions and intermediate care facilities are federally mandated,” Begin said.

Cole, founder of the Disability Motivational Network , helped create the policy brief as part of her MNLEND fellowship at ICI. She said she was moved to work on this particular project after seeing the large number of people on waiting lists to have their services delivered at home.

“We need to allow family members to take care of their loved ones, and many are not even aware of their options,” she said.

The research data comes from ICI’s Residential Information Systems Project (RISP), a longitudinal study of living arrangements for people with intellectual or developmental disabilities who get long-term supports and services. The project tracks detailed information about the places people with disabilities live, including large institutions, intermediate care facilities, and group homes.

“While states are not allowed to have waiting lists for services provided in Medicaid institutions, most states have waiting lists for home or community-based supports and services. In some states those waiting lists are very long,” said Larson, who directs the long-running project. “With more than 900,000 people getting Home and Community Based Services compared to fewer than 70,000 people in Medicaid-funded institutions, HCBS services are clearly preferred.”

Myhre hosts ICI celebration

August 16, 2023

Heidi Myhre (center) stands in front of a timeline of Impact articles and images with current and former ICI staff. On the left are Angela Amado (former ICI staff member) and ICI's current Director, Amy Hewitt. On the right are former ICI staff members Teri Wallace and Beth Fondell.

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.”

Review: From being to belonging

August 16, 2023

Higher expectations for the inclusion of people with disabilities in the social fabric of their communities are today being driven in large part by people with disabilities themselves, who are participating directly in disability research, a new review by Institute on Community Integration researchers shows.

Roger Stancliffe and Sarah Hall published “Social inclusion of adults with intellectual and developmental disabilities: Toward belonging” in the International Review of Research in Developmental Disabilities. The invited review is being made available for free until September 7 by the publisher, Elsevier.

The authors review participation in mainstream community activities across the lifespan of people with disabilities. Various settings and types of social relationships, including LGBTQ+ relationships and online dating are discussed. Aging, end-of-life issues, and retirement relationships are also included.

“The understanding and conceptualization of social inclusion has become richer in recent years, largely thanks to the involvement of people with disabilities in the research,” said Stancliffe, who is also professor emeritus at the University of Sydney. “We’re getting away from superficial participation headcounts and measuring time spent in certain environments, and we’re paying more attention to the subjective experience and whether people with disabilities actually feel connected, welcome, and safe enough to develop relationships in these settings. It’s no longer just about wandering through a shopping mall and passing a parade of strangers.”

Hall has devoted much of her career to studying and developing solutions to improve family and other relationships important to people with disabilities.

“We’re often so siloed in our disability topic areas of employment, education, transition, and others,” she said. “This project allowed us to group the different aspects of community life and show social inclusion as one, all-encompassing issue.”

Hall, who has an older brother with disabilities, focused on relationships from the very beginning of her research career.

“What I thought was important to my brother was having relationships and being part of the community, the church, volunteer efforts; to be seen as someone who is worthy of being a companion. Community participation is important, but it’s the reciprocal relationships that make the participation meaningful and lead to true belonging.”

Many schools, churches, and community organizations are adopting more progressive attitudes about inclusion, Hall and Stancliffe said, but it is not universal.

“Different organizations are at different places on this, and there are some that still find it difficult to embrace change,” Hall said. “For some, accommodations are a cost issue, others just don’t like change. We know a lot of churches believe they are very welcoming, and they don’t even know how some of their practices can be off-putting to people with disabilities.”

The review includes a section on virtual relationships and online safety.

“One study participant said she knew about the risks of meeting an online friend for the first time in person, but the risk of being lonely was even worse, so she was willing to take the risk,” Hall said.

Another critical area of life where social inclusion is often overlooked is in employment, Stancliffe said.

“Getting proper jobs and keeping them are very difficult tasks for people with disabilities, so all the attention is on that issue. Social experiences at work get surprisingly little attention, but are a really important part of our work lives, as many of us learned through the pandemic. It’s a real blind spot in the research.”

Even brief, congenial social encounters can play an important role in boosting an individual’s sense of social inclusion, the researchers noted.

“Quick interactions with a bus driver, shopkeeper, or someone you come across in the park can be quite important,” Stancliffe said. “If a person is supported to interact with people in these situations, once thought to be too minor to bother with, it can really help.”

And those quick encounters don’t have to turn into anything more, Hall said.

“It’s OK to just want an occasional hello and a brief chat,” she said.

To develop the deeper relationships that most people want as well, providing access to mainstream community groups with shared interests is critical, the research showed.

Thinking about funerals and end-of-life issues is also important for understanding social inclusion for people with disabilities, Stancliffe said.

“Even though people with intellectual and developmental disabilities are surrounded by death and will experience the death of friends and loved ones likely many times, sadly many are not told their loved ones are sick, or they are even kept from funerals with no opportunity to say goodbye. It’s one of life’s most important social events, and keeping the grieving and the memory-sharing from people with disabilities is a profound form of social exclusion.”

However well-intentioned the people are who keep their family members with disabilities away from these situations, they are really hurting them, Hall said.

“In all of these social situations, the one thing that sticks out to me as a family member of someone with disabilities is the fear for our loved ones,” she said. “I understand that fear, but we need to learn that by trying to forbid relationships or hide information, we are making our loved ones less safe because they won’t be equipped to develop good relationships.”

Hewitt: Impatience is a virtue

August 16, 2023

Aubyn Stahmer (left) and Amy Hewitt (right) at the University of California Davis. Stahmer is Director of the University Center on Developmental Disabilities (UCEDD) at the UC Davis MIND Institute. Hewitt delivered the keynote address on inclusion at the 2023 MIND Summer Institute on Neurodevelopmental Disabilities on July 28. Hewitt is Director of the Institute on Community Integration, which is the Minnesota UCEDD.

In a July keynote address at the UC Davis MIND Institute, ICI Director Amy Hewitt urged disparate segments of the disability community to work urgently, and holistically, for the inclusion of people with intellectual and developmental disabilities (IDD) in communities.

Decades after the passage of federal and state laws and regulations mandating accommodations to put people with disabilities on more equal footing in housing, education, and the workplace, the number of people with IDD who live in their own homes, attend school in fully integrated classrooms, and work in competitive employment remains stubbornly low, Hewitt said. The event was the annual MIND Summer Institute on Neurodevelopmental Disabilities in Sacramento, California.

The event created an opportunity for participants to engage in important discussions about how we can learn more about inclusion from one another and work together to create positive change, said Amber Fitzgerald, a program manager at the UC Davis MIND Institute.

“The keynote presentation by Amy provided an important look at inclusion across the lifespan and ignited conversations among participants that carried on throughout the day,” Fitzgerald said.

Hewitt pointed to persistent, significant stagnation for students with extensive support needs, about 97 percent of whom are still placed in separate schools or in self-contained spaces instead of in general educational settings. Fewer than a quarter of people with IDD work in competitive, integrated employment. Nearly half of adults with IDD said in surveys that they have been excluded from religious activities.

“We just haven’t gotten it right,” Hewitt said following the event. “We’ve had grand ideas, but we really haven’t figured out true inclusion, and that’s on all of us, because we created these systems. The silos we’ve built in the disability service community underscore the importance of us working together and learning from each other.” A mix of educators, health care providers, caregivers, individuals, and families attended the meeting.

Hewitt said she was struck by the number of people approaching her after the session who felt similarly.

“Many of them said these ideas really resonated with them. We’re all so focused on our niches, and if you’re a parent or a clinician or a teacher, you’re locked in on what’s happening right now for a child,” she said. “You really have to think about supporting people in every stage of life. If you’re working with an adult and have no context of their childhood and what came before, you’re missing out on a lot. And if you’re working with an infant and you don’t have expectations that higher education and a career will, one day, be an option for them, it has an effect.”

Fitzgerald said the comments in written feedback after Hewitt’s session echoed these thoughts. Combining empirical evidence from across the disability field with her experience as a family member of someone with disabilities was powerful, several attendees said.

It also reflects ICI’s breadth of research and training in educational policy, global disability rights, community living and employment, and early intervention. Several times a year, ICI’s full staff convenes to exchange ideas across those focus areas.

What’s needed now, Hewitt said, is to take that unified message into the broader community.

“We’ve built this disability support system for people with disabilities, but then we don’t have expectations of the wider community to be part of that. Whether it’s a faith group, schools, or just communities in general, everyone needs to play a role.”

“Let’s Try a Different Way”

July 19, 2023

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’.”

New exhibition: my life

July 19, 2023

A young artist stands in front of a projected image. Handwritten words, scrawled in black marker, appear on the screen behind him and across his face. He wears a black turtleneck sweater and smiles into the camera.

ICI’s Art for All this month debuts a new exhibition—with a research twist—that presents a window into the daily lives and future dreams of youth with disabilities who are transitioning to adulthood. The exhibition, my life, begins July 26 with a program and reception featuring photos and other media images from participants in Minnesota, Singapore, and the Czech Republic.

Researchers, through special education teachers and others, asked youth with intellectual and/or developmental disabilities (IDD) to create photographs, drawings, and video clips depicting some aspect of what is meaningful to them about this time of life. They then followed up with the artists, asking questions about why they chose their subjects and how it reflects their thoughts and lives, said ICI’s Renatá Tichá, who leads Minnesota and Singapore transition projects. Now, they’ll ask for feedback from viewers of the exhibit for their own impressions.

“We may approach art for its beauty or study it for a deeper meaning. Both of these things materialized for this exhibition,” said Nik Fernholz, Art for All program manager. “The students in Singapore address their stories pragmatically, documenting the everyday life that allows them to be independent. In Minnesota, the students give us a slice of their personal life: their pets, what they do at work, or the mural they walk by in the neighborhood park. The Czech students straddle both, approaching things realistically while using the backdrop of creativity to tell their innermost feelings. This exhibition will allow the viewer to pause and reflect on the small things in their daily life and how every human dreams of the future.”

The July 26 program runs 3 p.m. to 6 p.m. in the Blythe Brenden-Mann Community Center at the Masonic Institute for the Developing Brain, 2025 E. River Parkway, Minneapolis. Refreshments will be served, and free parking provided. The exhibit runs July 26 to Sept. 29.

“Very few research articles about transition have used photo elicitation in this way, so we wanted to incorporate the method into our work to look at transition from a different perspective,” Tichá said. “In Minnesota, we gave youth cameras for two weeks and asked them to photograph things that remind them of their transition experience, and many students focused on de-stressing, relaxing, and hobbies. In transition planning, we’re often obsessed with employment and post-secondary education. It was really refreshing to get out of the usual mantras and look at transition through their lens.” The work in Minnesota was part of a five-year Project of National Significance from the Administration on Community Living designed to increase the independence of youth in the state. In Singapore, youth with more significant disabilities were supported by their teachers and family members, who took photos of objects and places the youth indicated were important to them, as part of a joint Minnesota/Singapore project funded by the U.S. Embassy in Singapore.

In the Czech Republic, students created drawings and photos depicting their vision of their desired lives five years in the future, and then discussed them. Jan Šiška, an associate professor at the University of West Bohemia who collaborates frequently with ICI, and his colleague Marie Černíková, an artist and lecturer, designed that effort as part of a three-year Czech grant on transition funded by the Czech Science Foundation.

“One of the drawings is full of twists and turns, beautifully explained by the artist with an incredible contrast of cheerfulness and disaster,” Černíková said. “The artists depicted transition as everything they did, both the everyday and the possibilities.”

In turn, Šiška said, they provided important clues to researchers.

“There is huge potential in using these techniques in research for people with IDD who may have difficulties expressing themselves in traditional ways,” he said.

“They think I’m a troublemaker”

July 18, 2023

In this split screen from ICI's new video series, a woman with a disability (wearing glasses) explains her difficulties communicating with medical professionals. On the right, a sign language interpreter conveys her message. In the background, a doctor speaks easily with a patient without a disability. — In this split screen from ICI’s new video series, a woman with a disability (wearing glasses) explains her difficulties communicating with medical professionals. On the right, a sign language interpreter conveys her message. In the background, a doctor speaks easily with a patient without a disability.

A new video series launched this summer features frank advice for healthcare professionals, directly from adults with intellectual and developmental disabilities:

“I want them to talk directly to me, because I am not a kid,” Eva Reed says on the video.

“We know what our bodies need and how they respond,” says Kayte Barton.

“It’s hard when doctors just assume things about you,” says Olivia Thomas.

“I’ve never been able to find doctors who see past my disabilities,” says Nell Coonen-Kote.

“Sometimes when I speak up for myself, it’s a problem,” says Heidi Myhre. “They think I’m a troublemaker.”

The two-part series, In Our Own Words: Improving Care for People with Disabilities, focuses on communication tips and detailed suggestions for providing the most appropriate care settings for people with a variety of disabilities.

Anna Phearman of the Minnesota Disability Law Center got the idea for the project after experiencing suboptimal care herself as a person with multiple disabilities, she said.

“It was also through listening to clients reaching out with frustrations about their interactions with practitioners that weren’t to the level of engaging a lawyer, but were still presenting a consistent barrier to people having a higher quality of life in the community,” Phearman said.

Working with the communications team at the Institute on Community Integration, and with self advocates connected as health messengers to Special Olympics Minnesota to produce the videos, the MDLC is now working to build awareness about them with provider organizations.

“One of the barriers our athletes mention during our free health screenings is the lack of experienced providers who they feel comfortable with,” said Jeff Prendergast, health programs manager for Special Olympics Minnesota. “When we talked with Anna, this project fit right into our goals of improving the lives of all our athletes, and our athletes are very passionate about this.”

For the project, ICI’s Jerry Smith conducted the interviews with dozens of self advocates, along with Phearman. Pete McCauley and Skylar Mihajlov filmed the interviews.

The critical element was sharing the feedback directly from people with disabilities, Phearman said.

“It was an incredible experience for everyone to work with all the people willing to share their experiences firsthand on camera,” Phearman said. “It reinforced for me how important it is to hear from a community when you’re trying to resolve an issue in that community. I think practitioners mean well, but when you don’t have that awareness and education, and haven’t spoken to people within the community, being well-meaning alone might not be the care someone needs.”

Disability civil rights: Echoes of activism

June 15, 2023

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.”

Supporting health and wellness: New Frontline Initiative available now

June 15, 2023

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.”

Impact, The Anniversary Issue: 35, Counting

June 15, 2023

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.

From pandemic’s depths, a new passion

May 16, 2023

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.”

ICI on the (virtual) Hill

May 16, 2023

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.”

MNLEND graduates celebrate

May 16, 2023

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.

A nurse, caregiver, driver, companion, and teacher – all for $14.50/hour

May 16, 2023

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.

Amy Hewitt, PhD

Director, Institute on Community Integration

hewit005@umn.edu

Piecing together progress

April 18, 2023

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.”

Harnessing uniqueness: MNLEND fellow leverages neuroscience advances to explore brain-behavior links

April 18, 2023

Left: Damien Fair, co-director of the University of Minnesota’s Masonic Institute for the Developing Brain and director of the Developmental Cognition and Neuroimaging Lab. Right: Sanju Koirala, a MNLEND fellow at the Institute on Community Integration. Fair is an advisor to Koirala in the DCAN lab.

Differences in individual brain structure and function – even within groups of people already diagnosed with autism, for example – create challenges for scientists trying to study how it contributes to functions such as language and social behavior.

Thanks to large neuroimaging databases now available at the University of Minnesota’s Masonic Institute for the Developing Brain, however, scientists are beginning to discover patterns that could point to more personalized and effective strategies for regulating emotions, or developing social cognition, among other skills.

Damien Fair, co-director of the MIDB and director of the Developmental Cognition and Neuroimaging Lab , and Sanju Koirala, a MNLEND fellow at the Institute on Community Integration, recently shared their work in neuroimaging studies with the 2022-23 MNLEND fellowship class. MNLEND stands for the Minnesota Leadership Education in Neurodevelopmental and Related Disabilities, an interdisciplinary leadership training program spanning more than 16 disciplines across the University. Fair is an advisor to Koirala in the DCAN lab.

Using her neuroimaging work as her MNLEND project this year, Koirala is coupling this work with the MNLEND curriculum. The MNLEND experience exposes fellows to a broad cross section of academics, practitioners, families, and people with neurodevelopmental disorders, and it has enriched Koirala’s doctoral studies in developmental psychology at the Institute of Child Development.

“I want to use research to step into people’s shoes and see how they explore and how their brains might respond differently,” she said. “That’s where the lessons from LEND come in – in not just assuming how someone with autism might see the world differently than you do. It’s been a great experience for me.”

Explaining her research, she often compares brain topography to actual geographic maps. She is from Nepal and compares the navigational challenges of a landlocked country to a place like Denmark, which has more access by sea to other ports. Similarly, variation in the spatial layout of brain networks might affect information processing, resulting in differences in behavior.

“Instead of studying binary categories of people with autism and a control group, I want to look overall at how social cognition is different among individuals and how certain regions of the brain are larger or smaller based on social cognition scores,” she said. “Then, we can develop more personalized support for people.”

While her current work focuses on imaging studies of children who are 9 or 10 years old, she aspires to study how these brain networks develop over the life course, she said.

“We can now categorize people not as a binary group – those with and without autism – but by individual differences in their brain networks,” said Koirala. “In LEND we talk a lot about person-centered thinking and this is how I adopt that in my research. Not everybody is the same.”

Becoming: Young adults envision active futures

April 18, 2023

Jean Hauff (left), an ICI communications intern, interviewed Nick Wilkie of the Metropolitan Center for Independent Living at a Transition Plus career and resource fair in March 2023.

Checking out a recent career and resource fair at Minneapolis Public Schools’ Center for Adult Learning, Taylor Dowd steps away briefly to share her long-term aspirations.

“I’ve always dreamed about traveling the world – and being a famous chef,” said Dowd, who took the first step toward the chef dream a few months ago when she began working in a University of Minnesota dining hall. She’s among a group of nearly three dozen young adults with MPS’ Transition Plus program who work in University food service facilities. Transition Plus provides post-secondary education and training in career and independent living skills to promote a successful transition from high school to adult life, as established by the Individuals with Disabilities Education Act.

Conor Davis, who also works in a University dining hall through the program, rattles off a long list of future career steps he’s thinking about. Dowd, Davis, and other attendees are thinking about more than just work as they enter adulthood, however. They want to travel, live, and work on their own terms.

“We had representatives from housing and healthcare service providers, and recreation and leisure providers, in addition to job-training programs and employers,” said Ben Rodriguez, work coordinator at MPS’ Transition Plus and one of the organizers of the MPS career and resource event. The University and the Metropolitan Airports Commission were among several employers at the March event.

The Institute is partnering with MPS, state employment, human services, and education departments, other local schools and transition programs, and service providers to improve the experiences of young people with disabilities as they move from high school to adult life. ICI’s Renáta Tichá and Brian Abery are leading the Institute’s contribution to the five-year effort, helping to evaluate a new, tiered transition framework developed at the state level and being piloted in four area school districts. Funded by the Administration on Community Living, it is a designated Project of National Significance to increase community-based employment, participation in higher education, and independence among Minnesota’s youth with intellectual and developmental disabilities (IDD).

The evaluation consists of conducting focus groups with teachers, support staff, and family members, interviews with youth with disabilities, and a longitudinal survey designed to gather information on transition experiences and ways to improve them.

Project leaders aim to build on work being done at programs like Transition Plus, so that transition services and skill development are more deeply embedded in schools and communities serving students with and without disabilities.

“Ultimately, the vision is to bring more individualized opportunities so students can discover for themselves the things they would like to pursue as they move into their adult lives in the community,” Tichá said.

CEHD News Tom Donaghy

CEHD News Tom Donaghy