New Impact: Self-advocacy is alive and well

October 27, 2020

The year 2020 has been a lightning rod for people with disabilities who advocate for themselves and others to design and live their own lives.

Early in the COVID-19 pandemic, many protested healthcare rationing decisions that threatened to put them at the back of the line. Others spoke out when they lost critical services from direct support professionals or feared for their lives in congregate care settings. When George Floyd’s killing in Minneapolis sparked global calls for fundamentally reexamining systemic racism, people who live with disabilities renewed the conversation about the intersectionality of racism and ableism.

Against that backdrop, the latest issue of Impact examines the Self-Advocacy Movement, its history, and the role it plays today. Articles explore the current issues self-advocates are fighting for, the debate over the term ‘self-advocacy’ itself, ways to get started as a self-advocate, and the personal stories and programs shaping the Movement today.

“We are at a critical time for the country and for the Movement,” said Teresa Moore, a guest editor for this issue of Impact. She is director of the Self-Advocacy Resource and Technical Assistance Center, a project of Self Advocates Becoming Empowered (SABE). “People want to know SABE’s position on using the term self-advocate or advocate in the work they are doing, among other topics. This issue of Impact is going to set the pace for quite a long time and will help self-advocates and their groups work on what is important to them.”

Moore and three other self-advocates served as guest editors for the publication, which is produced by the Institute on Community Integration and the Research and Training Center on Community Living and Employment under grants from the U.S. Department of Health and Human Services and the National Institute on Disability, Independent Living, and Rehabilitation Research.

“This issue is important because our Movement, for and by people with intellectual and developmental disabilities, is alive and well, but it needs more attention. We are not getting the recognition that we deserve in the broader disability world,” said Max Barrows, an Impact guest editor and outreach director for Green Mountain Self-Advocates in Montpelier, Vermont. Barrows hosted several online discussions with dozens of self-advocates for an article highlighting today’s most pressing issues. “If you are new to our Movement, this issue is a great way to begin your relationship with self-advocacy.”

Mike Rogers, regional organizer for the Self-Advocacy Association of New York State, served as an editor and contributed to several articles, including an interview with Samuel R. Mattle, founder of the Center for Self Advocacy in Buffalo, New York.

“Creating this publication on self-advocacy is very important to me,” Rogers said. “We need to expose people without disabilities to the power of the Self-Advocacy Movement and our ability to impact the world.”

Tapping job skills

June 17, 2020

Jobless rates among people with disabilities soared in May to nearly 18 percent, almost triple the level from a year ago, as COVID-19 shut down much of the global economy. The gap in the unemployment rate between workers with and without disabilities also widened.

Almost overnight, as many employers had to close their doors, so did programs that employ workers with disabilities in group workshop settings. For some of these programs, however, the experience is accelerating a shift to emphasize more individualized, competitive employment opportunities aimed at closing the unemployment rate gap.

“We were well into individualized employment long before COVID,” said Dominique Berg of STEP Inc. in Fairmont, Minnesota, an organization founded in the 1960s that provides in-center employment, day habilitation, and skills training for competitive employment in the community, among other services. As the pandemic spread, the organization temporarily closed its facilities to in-center services, but continued counseling workers it had helped place in jobs. Many of those were frontline jobs in nursing homes and other workplaces that were deemed essential.

“It was a real test to see how everyone fared, and we did well,” said Berg. “All of the people we supported in individual employment either maintained their positions or stepped back due to underlying health conditions but are now coming back to their jobs. We walked them through this process and they stayed the course.”

Led by Sue Eisenmenger, STEP’s executive director, the organization also shared insights on moving forward the agency’s transformation goals in the midst of the pandemic. As part of the Minnesota Training and Technical Assistance Project—an initiative of the Institute for Community Inclusion at the University of Massachusetts-Boston in partnership with the Institute on Community Integration at the University of Minnesota—about a dozen Minnesota service providers meet virtually to discuss ways to increase competitive, integrated employment.

“STEP is one of our partners that has really embraced the opportunity to make the transition to competitive employment even faster than they might have without the pandemic going on,” said Danielle Mahoehney, a program specialist at ICI. “They see the value in having more individualized options for people, and are focused not only on surviving, but progressing during this time.”

Patrick Mitchell (MNLEND, 2018-19), disability rights advocate

June 17, 2020

Driven by the disparity between the rights people with disabilities have and the rights they can actually exercise, Patrick Mitchell is leading self-advocacy projects around Minnesota and pursuing a graduate degree in non-profit administration.

Mitchell is a master’s degree candidate at Metropolitan State University in St. Paul, a role he decided to take on after completing a Minnesota Leadership Education in Neurodevelopmental and related Disabilities (MNLEND) fellowship at the College’s Institute on Community Integration in the 2018–19 academic year. He also serves as program director for Advocating Change Together (ACT), a grassroots disability rights organization.

“ACT is a small self-advocacy non-profit with a big reach,” Mitchell said. The organization has six community organizers around the state who offer a variety of self-advocacy programs. One popular series offers 36 sessions on personal empowerment, disability rights, and connecting people with disabilities to their communities, for example.

Among the organization’s recent efforts is a “Tour of Homes,” that takes people with disabilities through several types of successful independent or near-independent housing arrangements. ACT also helps people with disabilities join recreational and other club activities in their communities.

Mitchell’s career has been shaped by a life-long interest in social justice and fairness. While an undergraduate student at University of Minnesota-Duluth, Mitchell worked at a group home for people with disabilities.

“It was shocking to see the more medical model, where there were protocols for various behavioral symptoms. It felt dehumanizing, and it stuck with me,” he said. “Later I had better experiences with the system, working as an employment coach. And then finding the self-advocacy movement was just really exciting.”

That passion is evident as Mitchell describes his work today.

“Hard-fought legal rights for people with disabilities mean little if they are used by the disability service system to promote segregation,” he said. “For some people, virtually their whole lives are planned by staff members at group homes and day programs, and the system reinforces that, leaving little room to make friends, socialize, and participate in the community outside that system. So many things prevent people from breaking out of that service bubble.”

Mitchell’s background added an important self-advocacy voice to the MNLEND program, and in turn, he said, he gained a more nuanced understanding of the medical and child development fields’ roles today. Cross-disciplinary work is a key MNLEND component that promotes sharing of the most promising practices and services among fields that serve people with neurodevelopmental and developmental disabilities. “It was great to be surrounded by talented, diverse professionals from the disability field,” he said. “We found a path between affirming peoples’ lives as they are and recognizing that there may be some ways to improve things.”

A longtime friend returns

February 20, 2020

Mikala Mukongolwa teaching a child in her native Zambia.

What motivates someone to work in the disability field?

Having a profound impact on people’s lives is a common driver, and that passion comes to life as longtime ICI friend Mikala Mukongolwa of Zambia sits down to talk about her two-week visit in the United States this month, the latest in a series of information exchanges with ICI that began in 2004.

“When I first came here, I saw people with significant support needs living full lives. They had help, but they were doing so much on their own,” she said. “In my country there are still kids and young men and women being kept, sometimes locked and bedridden, in houses with no interaction. They need to be loved and they can do a lot if we give them just a little bit of help.”

Dig a little deeper, however, and one discovers what first ignited that passion long ago: gratitude and inspiration.

Mukongolwa’s uncle lost his sight at age 7. At the time, her father was a young adult who had to leave Zambia for work opportunities in Zimbabwe. Before leaving, he found a school specializing in education for the blind and made sure his younger brother attended, over the objections of other family members. That uncle went on to graduate from law school and work at a university in Zambia, and in turn look after Mukongolwa after his brother died.

“He was a very good singer and composed many songs in braille,” she recalled. “He made me want to communicate in different ways and reach people.”

She became an elementary school teacher, but early into her career felt ineffectual as she tried to help one boy in first grade learn to write and accomplish other grade-specific skills.

“His parents weren’t concerned, but inside I knew my heart wouldn’t feel well if this boy sits in my class and learns nothing,” she said. She reached out to a nearby college of special education for help with a few teaching tasks for that one student, and the tips worked. So began her eventual special education coursework, which led to her home-based work with students with disabilities and her long association with ICI. Channeling her uncle, she invents and sings little songs to break down math and other subjects for young learners.

“We’ve learned a lot from Mikala’s mentoring strategies for new teachers, among other talents,” said ICI Executive Director Amy Hewitt. “Our work together gives us a foundational knowledge that keeps us grounded in the notion that you can’t simply export special education to every country without understanding the cultural context.”

What does she do that’s different?

“I’m very hands-on,” said Mukongolwa, pulling up a video on her phone of herself, down on the classroom floor, teaching a counting song to students with disabilities. “Most people who are head teachers go in looking very smart, and in high heels. I’m not that person. I show teachers what I do rather than tell them. Learning should be fun.”

ICI helps support Mukongolwa’s work as a way to extend the reach of its mission to create communities worldwide that more fully include people with disabilities.

During her most recent trip, Mukongolwa collaborated with ICI staffers working on a grant proposal to bring training for direct-support professionals to the post-secondary education market in Zambia.

Mukonglawa was also invited to participate in sessions at the Therap national conference as a component of their Global Initiative. Therap is an online documentation system for service providers in health and human services fields and DirectCourse has been a long-time collaborator.

“A lot of teachers in my country ask me, ‘Where do you learn all this?’” Mukongolwa said. “We were the first [in Zambia] to come up with a child protection policy and to help parents better understand behaviors in their children with disabilities. All that knowledge came from DirectCourse. Without ICI, I would still be in the dark.”

Mapping more cohesive services for people with disabilities

January 17, 2020

To qualify for vital public services, people with disabilities must demonstrate they need help with certain activities of daily living. But states have different ways of assessing these needs, and the process for qualifying for benefits is often opaque.

The Research and Training Center on Home and Community Based Services (HCBS) Outcome Measurement (RTC-OM) at the College’s Institute on Community Integration (ICI) recently launched a free, interactive national map of state service eligibility requirements, called the HCBS Assessment Tools database. The map appears on the RTC-OM website.

“Several states are redesigning their Medicaid waivers programs and they want to see what other states are doing,” said Matthew Roberts, an ICI research coordinator who is working on the project. The database is also viewed as important by staff at the National Institute on Disability, Independent Living, and Rehabilitation Research (NIDILRR), who suggested its development; the Administration on Community Living; and the Center for Medicaid and Medicare Services, which funds home and community-based services so that they can track the manner in which states are making eligibility and funding decisions. This database will be updated frequently, which will help all stakeholders better understand the processes and tools that are being used to support equitable service provision.

To build the database, researchers spent several months digging into state applications for Medicaid waivers, comparing them to the actual processes states are currently using to determine eligibility for services. They examined both eligibility for receiving services and the level of funding for which individuals qualify. Then they verified the findings with state officials, Roberts said. Users can easily click through the states to see how officials determine eligibility, funding and support needs of people receiving services. Data on service quality and outcomes also is available.

“We believe this will help people start a conversation about the best way to assess needs, rather than each state operating independently,” he said. “This is the first time a resource has been developed to identify specific measurement tools being used within state HCBS programs across the United States.”

The DSP shortage: Think local

January 17, 2020

Supporting people with disabilities is rewarding work, and it’s among the nation’s fastest-growing occupations, but the direct-support profession’s low pay and considerable demands are associated with crisis-level labor shortages that are lowering the quality of life of the people with disabilities that DSPs support. Without major changes in how organizations recruit, train, and support these professionals, the problem will only worsen.

Collaborating with state officials and provider organizations across Tennessee, the Institute on Community Integration (ICI) is conducting annual surveys of local wages, benefits, and retention efforts; developing a customized toolkit for organizations to use in recruiting and retaining DSPs; and providing coaching to organizations as they implement the toolkit. The tools include videos with realistic portrayals of a typical day for a DSP that have been effective in recruiting candidates who will stay longer on the job and who view the work as a profession.

“Working with TennCare and Tennessee Community Organizations is allowing us to apply our evidence-based expertise to a broad network of organizations across the state, creating promising strategies for strengthening the pool of DSPs,” said ICI’s Heidi Eschenbacher, principal investigator for the project, known as the TennCare Employment and Community First CHOICES Workforce Initiative. “Partial implementation of a strategy can lead to organizations concluding it failed, but our teams will work closely with organizations throughout the process, guiding selection and implementation of the hiring and retention tools that work best in each organization.”

Now beginning the second of the three-year project, ICI’s Research Training Center on Community Living shortly will launch a second annual survey as a way to measure short-term progress and expand it to a second cohort of organizations, said Barb Kleist, co-principal investigator.

In September, ICI Director Amy Hewitt, also a co-principal investigator, and TennCare’s Shannon Nehus kicked off the first workshops for participating organizations, along with a team of ICI staff that included Kleist, Claire Benway, Chet Tschetter, Julie Kramme, Sarah Hall, and MacDonald Metzger. In total, fifteen ICI staff members are working on the project.

Readers can inquire directly about the broader project.

Impact: Designing lives of their own

January 17, 2020

The new issue of Impact magazine from the College’s Institute on Community Integration (ICI) explores how people with disabilities are experiencing self-determination today, including how they are using Supported Decision-Making (SDM) and other strategies to replace court-appointed guardianship, improve their education, and design lives that better reflect their values.

“The whole concept of self-determination has changed dramatically in the 30 years we’ve been researching it,” said Brian Abery, co-director of ICI’s Research and Training Center on HCBS Outcome Measurement. “Today it is much more complex and includes supporting people with the most significant disabilities to have the amount of control they want over their lives.”

Abery and Renáta Tichá, co-director of ICI’s Global Resource Center for Inclusive Education, served as guest editors for the issue, along with Jonathan Martinis, senior director for law and policy at the Burton Blatt Institute, Syracuse University; and Karrie Shogren, director of Kansas University’s Center on Developmental Disabilities.

Articles include an update on state legislation and trends in using SDM to advance self-determination and other favorable outcomes in the lives of people with disabilities, visions of future directions from leaders in the disability community, and compelling personal stories of both self-determination and self-advocacy.

“I was told in high school that I could not continue my education because it was a waste of my time and my teachers’ time,” wrote Roqayah Ajaj, originally from Saudi Arabia and now a PhD student at the University of Minnesota. Despite several obstacles, including the challenges associated with blindness, Ajaj is pursuing her dream of improving education for people with disabilities.

The issue’s cover story highlights Ryan King and his family, who fought a lengthy legal battle to end Ryan’s court-appointed guardianship, replacing it with SDM.

Global perspectives on self-determination also are addressed.

“People with disabilities in countries such as Armenia, Russian Federation, Kazakhstan, Tanzania, and Kenya have begun to exercise self-determination in their lives,” writes Tichá, citing influences from the adoption of the 2006 United Nations Convention on the Rights of Persons with Disabilities.

In many areas of the world, however, self-determination and SDM in particular still are fledgling concepts, Tichá said.

“Given their different cultures and histories, you cannot expect self-determination to look the same in every country,” she said. “For many, the focus is still on the physical inclusion of people, and they haven’t moved to the point of advocacy. It’s not going to happen overnight.”

Out of Africa, and back: A pathway to prosperity

November 21, 2019

Each evening and every time it rains, Esther Ngina Njuguna gathers the few food items she sells at an open-air market on the outskirts of Nairobi, Kenya and gets them to safety. If she had a little shop with a roof and storage space, the widow and mother of two could sell more products and send her children to school.

Nearby, Teresia Aoko Bulimo, a tailor, is trying to form a team of workers with disabilities to sew uniforms for area schools. The hitch: traditional commercial space would add too much cost to the process.

Inspired by entrepreneurs worldwide who are repurposing old shipping containers into housing and pop-up shops, Daniel Chege is working on a plan to purchase and manage a few containers in Kiambu County that could house both of these fledgling businesses, and more, in a country where very few people with disabilities can find work.

It’s just one of several economic development initiatives Chege explored through a U.S. State Department-funded exchange program this month with his mentor, the Institute on Community Integration’s MacDonald Momo Metzger. Metzger is an education program specialist with deep experience supporting people with disabilities in person-centered careers and life planning.

This month, Metzger traveled to Kenya to support Chege’s work there and consult with local leaders on several economic development initiatives. The pair also met U.S. Ambassador to Kenya Kyle McCarter and other Embassy staff to discuss the projects.

In May, Chege spent a month in Minneapolis with Metzger and other ICI leaders, as well as representatives from area organizations, observing how they help people with disabilities create resumes and find jobs in the community.

“In Africa, the idea of people with disabilities earning their own wages is still very new,” said Metzger, who is originally from Liberia. “Most people think they can’t work, so we’re trying to create some awareness and change that assumption.”

Chege, Njuguna, and Bulimo are part of Murera Persons with Disability Welfare Association, a community organization aiming to assist its members to become self-reliant through economic opportunity.

Speaking to the group near the end of Metzger’s trip, Stephen Kahingo, Murera’s chairperson, said members of the organization learned a great deal from the exchange about bringing more inclusive employment to Kenya.

“We are so grateful for this golden opportunity to learn from you,” he said in thanking Metzger for the experience. “You came to share knowledge with us, and knowledge lives forever.”

Also during the two-week trip, Metzger and Chege met with the Vice Chancellor of DayStar University, Laban Ayiro, and others to establish a School of Education and Disability Studies. ICI will offer initial support for the proposed school and will collaborate on its development.

The Professional Fellows Program on Inclusive Disability Employment is sponsored by the U.S. Department of State Bureau of Educational and Cultural Affairs and implemented by the Association of University Centers on Disabilities, the Institute for Community Inclusion at UMass Boston and Humanity & Inclusion.

Evaluating the services that people with disabilities receive

October 18, 2019

Under a recent two-year, $250,000 supplemental award from the Administration on Community Living/National Institute on Disability, Independent Living, and Rehabilitation Research, Brian Abery and Renáta Tichá and their colleagues within ICI’s Research and Training Center on Home and Community-based Services Outcome Measurement will develop and field-test measures of person-centered service practices. They will also explore the extent to which people with disabilities themselves are provided with opportunities to develop and evaluate home and community-based services.

“Millions of federal and state dollars are currently invested annually in providing community-based services to people with disabilities,” said Abery. “At this point, however, we have a long way to go with respect to being able to measure, in a reliable and valid manner, the quality of services people receive and the outcomes they experience. That has to change.”

People with all forms of disability receive services through the Center for Medicaid and Medicare Services (CMS) Home and Community-based Services (HCBS) Waiver Programs. These services are designed to support people with disabilities to live high-quality lives and achieve the outcomes that they personally desire. In order to achieve those goals, both the services that recipients receive and the outcomes they experience need to be evaluated and the resulting data used to improve outcomes.

Instead of measuring how many times people with disabilities get out each month, for example, states and service providers should ask them questions to understand whether their experiences in the community lead to them feel included. Instead of asking them how much control they have in their lives, they should be asked about whether they have the degree of control they desire over those things that are most important to them.

“The reliable and accurate measurement of HCBS outcomes is critical in improving the effectiveness of services designed for people with disabilities,” said Tichá. “In the absence of this type of information, service providers, policymakers, and most importantly, people with disabilities, are unable to make informed decisions.”

South Korean delegation visits ICI

July 17, 2019

The South Korean delegation, with University of Minnesota staff, on the front steps of Burton Hall.

On June 17–21, a South Korean delegation visited ICI to learn about person-centered practices (PCP), positive behavior support (PBS), and self-directed services. These concepts, which emphasize personal autonomy and independence, are still new in South Korea. The delegation, which was composed of members from 15 organizations that serve people with disabilities, wanted to learn more about these concepts so they could implement them at home. South Korean disability policy has changed, so now at least 3% of a company’s workforce must be people with disabilities. The policy is an opportunity to expand choices for South Koreans with disabilities by using approaches such as PCP, PBS, and self-directed supports.

In 2017, an earlier delegation came from South Korea to the United States to learn about self-direction in disability policy and one of their site visits was ICI, where they met Rachel Freeman and learned about PCP. Freeman was invited to South Korea later that year, and when the Koreans wanted to learn more, they selected ICI. “Although they mainly came to visit me, they provide many different services so they are really interested in ICI’s work as a whole,” says Freeman. “We are honored our colleagues came such a long way to visit ICI and appreciate the opportunity to learn from each other and collaborate.”

During their visit, this year’s delegates also met Kyung Mee Kim, a visiting professor from Soongsil University in Seoul who was part of that earlier delegation in 2017. She is completing her year-long Fulbright Scholarship at ICI in PCP and consumer-directed supports. “ICI and its people are treasures to me and I felt I was digging treasure every day I was here,” says Kim (pictured in the front row at the extreme right). “My main research was to identify best practices in individualized budgeting programs in Minnesota. Individualized budgeting is a form of self-direction and I want to bring it home and see it implemented in South Korea.”

ICI film documents crisis in direct support workforce

July 17, 2019

“Where it all comes together for people with disabilities is with their Direct Support Professional [DSP],” says Ronnie Polaneczky. “DSPs are doing some of the hardest work ever and they’re being paid terribly. How could we make the linchpin for all that so unstable? That’s insanity.”

Polaneczky is a reporter with the Philadelphia Daily News speaking in Invaluable: The Unrecognized Profession of Direct Support, a 44-minute film by ICI’s Research and Training Center on Community Living. Written by producer/director Jerry Smith and ICI director Amy Hewitt, the film documents the chronically low pay, high turnover, long hours, disrespect, and high expectations for Direct Support Professionals, the largely invisible staff who assist people with intellectual and developmental disabilities in living full, productive lives. In addition to providing physical assistance with daily living routines and ensuring the health and safety of individuals, many of whom have complex medical issues, DSPs connect people socially and ensure they are valued members of their communities.

Forty years ago, many people with developmental disabilities were confined to overcrowded and often squalid institutions before organized advocacy efforts led to community-based services and supports. People with disabilities and their families praise DSPs for making community living viable, but this civil right success story came at the expense of the DSPs themselves who are paid about 25 percent less than institutional staff and nursing home workers. “We willingly planned and implemented community support with staff who were being paid less, who had access to less stability and fewer benefits,” Hewitt says in the film. “We did that because of a good thing: We wanted people with disabilities to live in the community. But, the way we could afford it was on the backs of the workers and we’ve never caught up.”

Low wages, lack of benefits, highly demanding work, and little opportunity for advancement have led to a national turnover rate of about 45 percent and chronic staff shortages. And the problem is compounded by an increased demand for services. “Over the last two decades, just for people with intellectual and developmental disabilities, the service sector has grown by 290% already,” Hewitt notes. “So we’ve just gotten to this place where demand is far greater than our ability to meet it.” One million new DSPs are needed over the next 10 years.

The film explores a number of strategies addressing the workforce crisis, including professional development, credentialing opportunities, and the use of technology supports as an alternative to having the constant physical presence of staff in someone’s home. These approaches are necessary but not sufficient for bringing stability to the direct support workforce and continuity to the lives of the people receiving supports. Even as organizations across the country employing direct support staff have lobbied legislators for pay increases, DSPs have seen their wages, adjusted for inflation, decrease over the past 10 years.

Mary Ann Allen, director of a disability services provider agency in New York, said the direct support system is collapsing. “People with disabilities are already ending up in homeless shelters, hospitals, and institutions. We don’t have much time before the tipping point is crossed.”

Advocate Margaret Puddington, whose son Mark is featured in the film, believes the workforce crisis is in part one of perception. “I feel that if people understood what the work of direct support is, there would be no problem. They would be forced, ethically, morally, to give staff a decent wage, well above the minimum wage.”

Through public screenings and discussions across the country, Invaluable is being used to provide this understanding and raise the profile of an unrecognized labor force.

Invaluable is available for rental or purchase.

Making the Minneapolis parks more accessible

July 17, 2019

Molly Peterson (MNLEND Fellow, 2018–19) is serious about play.

“As a pediatric physical therapist, play is a pivotal aspect of my job description,” she says. “Children are motivated to move and master mobility skills in an environment that appeals to them. It needs to be fun, exciting, and a little bit challenging. To me, community playgrounds foster that environment and provide children with or without a disability the opportunity to practice social, cognitive, and physical skills, and most importantly, the opportunity to play with peers. This project aims to stimulate discussion about inclusion and how playgrounds can be a stepping stone to promote inclusion from a young age.”

Peterson is talking about her MNLEND (ICI’s Minnesota Leadership Education in Neurodevelopmental and Related Disabilities Program) project that recommends the Minneapolis Board of Parks and Recreation make playgrounds more inclusive to people with disabilities. Guided by the playground regulations established in 2010 under the Americans with Disabilities Act, she recommends the park board include a parent or community member who has a child with disabilities on the committee that plans new playgrounds and playground rebuilds. She also wants the park board to consider public transportation when deciding where to locate or rebuild a playground. “Accessibility isn’t just about the playground equipment, but also the ability to get to the park,” she says.

Peterson credits the Minneapolis parks with making playgrounds safer by removing metal slides, using lighter colored materials, and increasing the amount of shade and hydration stations. But she says parks should be more accessible. “My past, present, and future patients inspired this project, and one of the main project goals is to foster a relationship with the Minneapolis parks to encourage the next playground rebuild to be on a bus route, in order to improve accessibility—and in a community with a high disability population—to promote inclusion.”

ICI director testifies before Congress

July 17, 2019

On June 25, ICI director Amy Hewitt testified in Washington, DC before the U.S. House Committee on Energy & Commerce’s Subcommittee on Health, urging Congress to reauthorize the Autism Collaboration, Accountability, Research, Education, and Support (CARES) Act before the law expires on September 30, 2019. In a hearing titled, “Reauthorizing Vital Health Programs for American Families,” she explained to members of Congress how the Autism CARES Act has provided the opportunity to answer critical questions and address disparities in the area of autism through research, public health surveillance, and workforce development.

Hewitt told members that the Autism CARES Act has helped build critical infrastructure that has furthered our understanding of autism. Several CARES projects are at ICI, including the Autism and Developmental Disabilities Monitoring Network, “Learn the Signs, Act Early,” and the Minnesota Leadership Education in Neurodevelopmental and Related Disabilities (MNLEND) Program. Hewitt serves as the President of the Board of Directors for the Association of University Centers on Disabilities, a network that includes all 52 LEND centers, as well as the CARES-funded national resource center that provides technical assistance to LENDs, Developmental Behavioral Pediatrics Training Programs, and the nationwide presence of the “Act Early” Ambassadors of the Centers for Disease Control and Prevention (CDC).

Hewitt also personalized her remarks, noting that she trained as a LEND Fellow decades ago and now has a family member with autism. She pointed out that, thanks in part to data gathered through CARES funding, we now know that autism affects 1 in 59 children and about 1 in 6 children has a developmental disability. “This means that it is highly likely that everyone in this room knows someone that has a family member with autism or another developmental disability,” Hewitt reminded the members of Congress. “While I am here in my professional role as a researcher and professor, I understand the importance of these issues as a family member, too. My brother-in-law, Nathan, is 45 years old and is autistic. He has lived with our family, in his own apartment in our home, for the past 25 years. He reminds me daily that children grow up and become working adults who want good lives in our communities. Nathan makes me aware that we have much to learn from autistic adults about the systems we create to support autistic people and that we need these systems of support across the lifespan.”

Self-Advocacy Online adds videos on friends, fitness, and finding competitive work

June 18, 2019

ICI’s Self-Advocacy Online website has added four new original videos—written by John Smith and produced by Sarah Hollerich—that support people with disabilities in becoming more active and finding competitive employment in the community. Launched in 2004 with funding from NEC Foundation and the MacArthur Foundation, Self-Advocacy Online provides content of interest to individuals with intellectual and developmental disabilities (IDD), in particular those involved in the self-advocacy movement, a civil rights movement by and for people with IDD. Information, including some of ICI’s research, is presented in accessible, entertaining formats. The website also includes a directory of self-advocacy organizations across the U.S., developed by John Westerman, and a story wall featuring interviews with dozens of self-advocates.

The videos What is Employment First? (pictured) and How well is Employment First spreading around the U.S.? inform self-advocates about a framework for systems change that is centered on the premise that all citizens, including individuals with significant disabilities, are capable of full participation in integrated employment and community life. How can we be more active? offers fitness suggestions, and Can DSPs help you make friends in the community? encourages self-advocates (and the Direct Support Professionals who support them) to broaden their social circles out in the community. These titles are just the latest additions to the site’s numerous short films and lessons that provide self-advocates with useful information on topics ranging from the American with Disabilities Act (ADA) of 1990 to youth leadership.

“Information is meaningless if it’s not understandable and accessible,” says Self-Advocacy Online director Jerry Smith. “With over 250 videos, lessons, and translated research findings, we’re meeting a need few others are addressing. And by collaborating with Self-Advocates Becoming Empowered, Inclusion International, and The Arc, we are reaching a wide audience.”

ICI’s telehealth lab improves access to autism intervention services

December 21, 2018

ICI's telehealth lab manager Jessica Simacek wearing a headset and looking at a tablet and a client on her computer screen. — ICI’s telehealth lab manager Jessica Simacek uses audio-visual telecommunications technology to assist people with disabilities and their families, notably in Greater Minnesota.

Early identification, treatment, and intervention helps Minnesota’s children with autism and other neurodevelopmental disabilities reach their potential, but families can encounter waitlists up to a year for evaluation services. Part of the reason for this long delay is geography and journey time: Autism evaluation clinics are typically located in the Twin Cities, but families of children with autism live all over the state. Reducing waitlists can be critical for young children with autism because intervention is most effective while the young brain is still developing.

ICI’s Jessica Simacek (pictured), Adele Dimian, and Jennifer Hall-Lande, are collaborating with Amy Esler from the Autism Spectrum and Neurodevelopmental Disorders (ASD) Clinic at the University of Minnesota’s Department of Pediatrics to see if ICI’s telehealth laboratory can help shorten these waitlists and improve access to early intervention among children with autism. Telehealth refers to using telecommunications technology to support long-distance clinical healthcare, health management, and education via devices like smart phones and home computers. Telehealth also reduces the need to schedule appointments with providers; the technology can be synchronous or asynchronous, meaning people with disabilities and their families can either communicate in real time with a medical professional or leave audio-visual messages that professionals can see and hear later.

“Too many children and their families face barriers to accessing needed intervention services,” says Simacek, who has managed the lab since it began a year ago. “I investigate innovative interventions that are timely, efficient, and effective for children with neurodevelopmental disabilities. The ICI telehealth laboratory allows us to leverage technology to reach children and families who may live in rural areas or may be on lengthy waitlists for intervention. We also provide training and technical assistance on the use of telehealth, which allows providers, educators, and researchers to use telehealth to improve and extend their practices.”

New Diversity Fellowship: Applications due October 22

October 18, 2018

ICI’s Research and Training Center on Community Living (RTC-CL) has launched a new fellowship opportunity that aims to (1) increase the disability knowledge capacity within a community-based organization (CBO) that serves diverse and/or underrepresented families, and (2) inform ICI about how to increase staff/trainee diversity, support underserved individuals and families, and better serve diverse communities. Known as the Research and Training Center on Community Living Diversity Fellowships, the project began September 1 and is part of RTC-CL’s ongoing efforts to address the professional and educational disparities experienced by historically underrepresented communities in Minnesota. It will also expand the Center’s network to diverse staff and stakeholders. The Diversity Fellowship is funded by a one-year, $50,000 grant from the Administration on Disabilities’ Excellence in Developmental Disabilities National Training Initiative in the Administration for Community Living, U.S. Department of Health and Human Services.

This project will fund two Fellows. One will be a CBO staff member who serves underrepresented Minnesota families and is interested in the disability field. The other Fellow will be a graduate student or MNLEND (Leadership Education in Neurodevelopmental and Related Disabilities program) alumna/alumnus or a person with emerging expertise (which may include lived experience) in serving individuals with intellectual or developmental disabilities and their families, and who is interested in community work. Both Fellows will commit to a year-long project chosen in collaboration with their CBO and RTC-CL mentors.

Jennifer Hall-Lande (pictured at right) is the project’s Principal Investigator (PI) and Heidi Eschenbacher (third from left) is Co-PI. Other project staff are Rebecca Dosch Brown (left) and Anab Gulaid (second from left).

For further information on this opportunity, or to apply, please click here. Applications are due October 22 at noon Central Time.

ICI supports social inclusion of young Russians with disabilities

August 17, 2018

Brian Abery and Renáta Tichá in Moscow in 2015.

Brian Abery and Renáta Tichá (pictured in Moscow during a previous trip) from the Global Resource Center for Inclusive Education (GRC) at the Institute on Community Integration have launched a project known as Community Participation and Employment as Strategies for Social inclusion: A U.S.-Russian Dialogue. The project aims to enhance the social inclusion of youth and young adults with disabilities by developing community living and supported employment programs in the Moscow area. Funded by a one-year, $29,000 grant that began on June 22 from the Eurasia Foundation’s U.S.-Russian Federation Social Expertise Exchange Program, Tichá and Abery will work with a Russian nongovernmental organization called Journey Through Life to develop materials that support youth with disabilities to successfully transition from school to employment and community living. Activities will include staff from Journey Through Life visiting Minnesota for a 10-day period this fall to observe employment and community living programs, and GRC staff will travel to Russia to provide technical assistance to their partnering organization.

“Many Russian parents don’t see the point of educating children and youth with disabilities because options in Russia for supported community living and employment are virtually non-existent,” says Abery. “Working with nongovernmental organizations and parents on these transition issues can both enhance the quality of life of persons with disabilities and begin to change public attitudes towards this part of the population.”

Tichá agrees. “This project helps us continue our work in the Russian Federation by supporting the infrastructure needed for community living and employment for young adults with disabilities. This project builds on GRC’s previous work in the Russian Federation, which focused on community living, employment, and inclusive education for adults, youth and children with disabilities.”

New director and new five-year funding for Institute on Community Integration

July 16, 2018

The College’s Institute on Community Integration (ICI) has begun its 33rd year of operation with the appointment of a new director, and the award of renewed five-year funding. On July 1, Dr. Amy Hewitt became ICI’s director, the fourth to hold that position since ICI was established in 1985. The Institute also received renewed federal funding from the Administration for Community Living, U.S. Department of Health and Human Services, which continues ICI’s designation as a University Center for Excellence in Developmental Disabilities (UCEDD).

For more than 30 years, Hewitt has worked to improve community inclusion and the quality of life for children, youth, and adults with disabilities and their families. She has been ICI’s training director since 2002, and is the director of both the Research and Training Center on Community Living and the Leadership Education in Neurodevelopmental and Related Disabilities (MNLEND) program, as well as co-director of the Rehabilitation and Research Training Center on Outcome Measurement. In the course of her work at ICI she has additionally directed numerous federal and state research, evaluation, and demonstration projects in the area of community long-term services and supports for individuals with intellectual and developmental disabilities, and their families.

A national leader in the disability field, Hewitt is president-elect of the Association of University Centers on Disabilities (AUCD) and a past president of the American Association on Intellectual and Developmental Disabilities (AAIDD). In Minnesota, she has served on the board of The Arc Minnesota, and several state level advisory and work groups, where she emphasizes community collaboration. She currently serves on the statewide advisory committee of the Minnesota Disability Law Center.

“I am honored, humbled, and looking forward to the opportunities and challenges to continue our mission-based work to improve policies and practices to ensure that all children, youth and adults with disabilities are valued by, and contribute to, their communities of choice,” Hewitt says. ICI’s renewed core funding as a UCEDD will support the Institute’s continued engagement in collaborative research, training, and outreach in partnership with service providers, policymakers, educators, advocacy and self-advocacy organizations, researchers, families, and individuals with disabilities around the world. The first year’s funding award is $547,000 in federal funds, with a $200,000 match from the University of Minnesota’s College of Education and Human Development.

New Impact focuses on direct support workforce and people with disabilities

June 28, 2018

The direct support workforce is crucial in providing daily supports to people with intellectual, developmental, and other disabilities in the U.S. as they live and participate in their communities. While demand for these supports has never been higher and will continue to grow, significant challenges exist in finding, keeping, and training Direct Support Professionals. The new Impact: Feature Issue on the Direct Support Workforce and People with Intellectual, Developmental, and Other Disabilities (pictured) examines the workforce challenges in our long-term care system and their consequences. It presents data on the direct support workforce; shares personal stories of what is and isn’t working for those delivering and receiving supports; looks at creative, bold actions being taken around the country to address workforce issues; and explores ways to ensure that quality supports are there for people with disabilities and their families in all our communities.

Impact is published by the Institute on Community Integration, and the Research and Training Center on Community Living, within the College of Education and Human Development at the University of Minnesota.

ICI film on “Normalization” of people with disabilities screened at Walker Art Center

March 14, 2018

DVD cover of the film "Valuing Lives: Wolf Wolfensberger and the Principle of Normalization." — DVD cover of the film “Valuing Lives: Wolf Wolfensberger and the Principle of Normalization.”

Valuing Lives: Wolf Wolfensberger and the Principle of Normalization screened to an audience of over 300 at the Walker Art Center in Minneapolis on March 1. The film, directed by Jerry Smith of the Institute on Community Integration (ICI), explores a concept developed in the 1960s that provided a framework for moving people from large institutions into their home communities. This had a dramatic influence on services and supports for people with intellectual disabilities and fundamentally changed the way many professionals understood their roles in supporting people. Dr. Colleen Wieck set the stage historically with a presentation on the impact of Normalization in Minnesota. A panel discussion following the film examined the need to revisit Wolfensberger’s ideas, at a time when many communities are building new, segregated facilities for people with disabilities. The evening at the Walker concluded with a tribute to ICI’s Angelo Amado, who is retiring in March. Valuing Lives is available for purchase at rtcmedia.vhx.tv.

CEHD News people with disabilities

CEHD News people with disabilities