CEHD News Tom Donaghy

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CEHD News Tom Donaghy

MNLEND Fellows explore the power of mindfulness

November 21, 2019
MNLEND Fellows Adam Langenfeld, Muna Khalif, and Jennifer Reiter.

Can mindfulness techniques help young families better support their children with autism and other neurodevelopmental disabilities? A team of MNLEND Fellows from the Institute on Community Integration aims to find out.

Responding to the stress often reported by families of children with autism spectrum disorder (ASD), the team is partnering with Communities Engaging Autism to both document the effectiveness of mindfulness techniques and to widen their use by families, particularly in the early days after a diagnosis.

MNLEND Fellows Muna Khalif and Jennifer Reiter are participating in the non-profit organization’s Mindfulness-Based Stress Reduction for Parents of Kids with Special Needs course, a seven-week class developed by Vanderbilt University. They hope to integrate the techniques into their own lives and then create opportunities for bringing them to more parents across Minnesota.

“Regular mindfulness practice has made me a calmer, more focused parent, which in turn helps my daughter (who lives with autism) better navigate situations that cause her anxiety,” said Reiter. “I’m interested in partnering with arts organizations that offer sensory or inclusive programming to create more opportunities to share these techniques across the state.”

Their MNLEND colleague Adam Langenfeld, a pediatrician completing a fellowship in developmental-behavioral pediatrics at the University of Minnesota, will use survey data to learn how the training affected class participants’ stress and well-being levels, as well as how the course can be improved for future participants. Longer term, he hopes to use more quantitative measures of stress, such as biofeedback.

“Techniques to help alleviate stress can not only help parents cope, but can also help them address problematic behaviors,” he said. “We hope that by providing further evidence that MBSR helps with parent stress, we can help Communities Engaging Autism gain additional support to provide the techniques to a wider audience.”

The team is working on the project with Beth Dierker, the organization’s executive director, who is also a MNLEND alum from the 2017–18 cohort.

“Our time together [in the mindfulness class] so far has been thoughtful, honest, and focused,” Dierker said. “I often remind myself and all of us to ‘begin again’ each day.”

Check & Connect assists refugees in Minnesota

November 21, 2019
Ann Romine, Check & Connect trainer, speaks to refugees.

The Check & Connect program at the Institute on Community Integration is extending its reach. Under a two-year grant from the Minnesota Department of Human Services, C&C will help organizations serving refugees better track student performance, while also inspiring and supporting their families to obtain jobs and get involved in their new communities. See story here.

Better together: Washington State becomes second TIES Center site

November 21, 2019

When students with and without disabilities learn together, they all benefit. When states make inclusive schools a priority, everyone benefits.

In the state of Washington today, just 56 percent of students with disabilities are included in general education classrooms, below the national average of 63 percent.

Aiming to boost those numbers, Washington’s Office of Superintendent of Public Instruction and its community partners recently delivered the winning pitch to become the second state partner to work with Institute on Community Integration’s TIES Center on an intensive technical assistance project. The project involves taking the best ideas for inclusion that have worked in individual classrooms and finding ways to integrate them across entire school districts and statewide.

“Washington was selected as the second intensive technical assistance state following a rigorous application process,” said Sheryl Lazarus, TIES Center director (pictured).

State educational leaders’ passion for full classroom inclusion for students with disabilities shone through the resources directed to the project and in the voices of parents and other community members who participated in the competitive process to become a TIES partner.

“The thing that really stood out was their overall commitment to equity and the inclusive school community,” said Terri Vandercook, assistant director of the TIES Center, part of ICI’s National Center on Educational Outcomes.

TIES, which stands for increasing Time spent in general education, Instructional Effectiveness, Engagement, and State Support for inclusive practices, works to bring about broad, strategic progress toward including all students, even those requiring the greatest amount of support, in the general classroom. Individual educators and school and district officials will participate in the work. Last year, Maryland was selected as the first national technical assistance site. Both states will create capacity-building frameworks that will lead to improved results for students requiring the most significant supports.

“We are so hopeful about this partnership with Washington because they are dedicated to a systems mindset, and our learning with them can eventually be shared with other states,” Vandercook said. “Expanding the dissemination of best practices across the state will make lasting change, and make it happen for more students.”

Lazarus takes helm at NCEO

October 18, 2019
Sheryl Lazarus, pictured here addressing the Helsinki Commission in 2018, is the new director of ICI’s National Center on Educational Outcomes (NCEO).

Sheryl Lazarus, senior research associate at the National Center on Educational Outcomes (NCEO), became NCEO’s director on October 1, ICI Director Amy Hewitt announced.

“We are so fortunate that Sheryl Lazarus has moved into this role,” Hewitt said. “Sheryl has been an NCEO leader for nearly two decades and it is wonderful that ICI can benefit from her wealth of knowledge and experience in carrying on the incredibly important work of ensuring that all students are included and belong in their educational programs. There is no doubt that Sheryl will carry on the legacy of NCEOs founder, Martha Thurlow.”

Lazarus first joined NCEO as a graduate research assistant in 2001. After later serving as a research scientist for the Institute of Education Sciences at the U.S. Department of Education, she returned to the University as a lecturer and NCEO researcher. She has served as the director of the National Technical Assistance Center on Inclusive Practices and Policies (TIES Center) since 2017 and associate director of NCEO since 2016.

“As director, I seek to ensure that NCEO continues to be the go-to place for states and federal agencies regarding the inclusion of all students in instruction and assessments,” Lazarus said. “NCEO will build upon its strong foundation and provide continued national leadership on how to include students with disabilities, English learners (ELs) and ELs with disabilities, moving the field forward in providing rich academic learning opportunities for all students.”

Increasingly, she said, NCEO is using technological advances to improve technical assistance and create high-quality learning experiences.

Reflecting on her longtime colleague Thurlow, who recently stepped down as NCEO director, Lazarus credited Thurlow as a major force contributing to NCEO’s growth in stature as a national leader on inclusion of students with disabilities.

“I cannot help but be struck by the magnitude of Martha’s legacy,” she said. “She knows how to inspire those around her to grow as professionals, and has served as a mentor to many.”

Together, the NCEO team works from the perspective that assessments can provide a window into instruction, and that when students have the opportunity to learn rigorous academic content, there will be improved outcomes.

“Today, there is an increasing recognition that it is vital to address inclusion and accessibility issues across the comprehensive assessment system. This includes formative assessments, classroom tests, and benchmark or interim assessments as well as state tests,” Lazarus said.

NCEO, a center within ICI, provides national leadership in designing and building educational assessments and accountability systems that appropriately monitor educational results for all students.

Evaluating the services that people with disabilities receive

October 18, 2019
ICI’s Renáta Tichá and Brian Abery

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.”

Getting kids with autism and other NDDs out into nature

September 20, 2019

Despite a brutal late winter and spring in Minneapolis, a hearty team of children with autism and other neurodevelopmental disabilities (NDD) and their families more than doubled their average time outdoors during a six-month project exploring the health benefits of interacting with nature. Mollika “Molly” Sajady (MNLEND Fellow, 2018–19) and her mentor, Andrew Barnes, M.D., an Assistant Professor of Pediatrics at the University of Minnesota Medical School, co-led the project as part of ICI’s Minnesota Leadership Education in Neurodevelopmental and Related Disabilities Program (MNLEND). Sajady is the mother of Luca (pictured last fall at age 8–10 months) and is a Developmental-Behavioral Pediatric fellow physician at the University’s Voyager Clinic, a developmental-behavioral clinic. After playing outdoors during the summer months, children are physically and mentally fit, but with the start of fall, it can be difficult for families to keep children healthy and connected to nature when the weather turns cold. Using motivational interviews and goal-setting, Sajady and her Voyager Clinic colleagues coached 28 participants on specific strategies for reaching their targets for outdoor activity.

Beginning in February, the team asked families about how much outdoor time they averaged per week over the past year and their new goal. After discussing what participants like to do outside, staff guided them to make a reasonable action plan. If families struggled with ideas, staff offered to search for parks or outdoor spaces close to home. The goal-setting and accountability were motivators, but all participants contributed to the project’s success, Sajady said. For example, some families tied in educational opportunities when they were outside together, such as discussing the benefits of vitamin D with their children. Others defied the cold winter weather by simply wearing more warm clothes. Some families said they would like the clinic to organize more outdoor activities.

Following up on the families’ requests for expanding outdoor opportunities, Sajady is working with the Minnesota Department of Natural Resources to educate health care providers about the developmental and health benefits of encouraging children to spend more time in nature. As part of this community partnership, staff hope to create a database of accessible and sensory-friendly parks in Minnesota. Voyager Clinic also plans to combine nature interventions with anxiety treatment programs for children with NDD. “Children with neurodevelopmental disabilities and their families deserve to take advantage of the health benefits of spending time in nature by finding enjoyable, accessible ways to get outside,” says Sajady.

Check & Connect approaches new school year with range of supports for student engagement

August 22, 2019
Check & Connect logo

Staff at the College’s Institute on Community Integration’s Check & Connect K–12 student engagement program have been busy this summer preparing and sharing resources that will help educators identify early signs of student disengagement with school and learning, and intervene to keep students on track with their education. Check & Connect, which began at ICI in 1990, is an evidence-based student engagement intervention that has at its core a trusting relationship between the student and a caring, trained mentor who both advocates for the student and challenges the student to keep education salient. Of the dropout prevention interventions reviewed by the U.S. Department of Education’s What Works Clearinghouse, Check & Connect is the only program found to have strong evidence of positive effects on staying in school. Among the many supports for student engagement offered by Check & Connect are the following:

  • Check & Connect’s biennial conference. The 2019 National Student Engagement Conference: Solutions for Success, was held July 24–25 on the University of Minnesota campus. Approximately 140 attendees participated in this event focused on best practices for keeping struggling K–12 students engaged and in school. The presentations will be posted on the Check & Connect website in the next few weeks.
  • In 2018–19 Check & Connect provided training and technical assistance to more than 1,300 individuals affiliated with educational and other youth-serving organizations to support their implementation of the model across the U.S and internationally. It also delivered train-the-trainer workshops and consultation in collaboration with state education agencies in seven states that use the program statewide. Numerous on-demand training opportunities will be offered this year for an anticipated 1000+ participants at local, district, and state level sites.
  • The Check & Connect team is expanding training opportunities for the upcoming year to include the Engage SEI Online Student Engagement Instrument, released in spring 2019. Engage SEI measures what students think and feel about school, delivering a survey via an online platform and providing data for educators to use to identify early warning signs of disengagement and develop personalized interventions. The instrument is available for purchase, and the purchase price includes onboarding assistance, the Digital Implementation Guide and training resources, and application maintenance and troubleshooting for one year.

ICI assists with self-determination for Wisconsin students with intellectual and developmental disabilities

August 22, 2019
Renáta Tichá and Brian Abery.

Renáta Tichá and Brian Abery at the College’s Institute on Community Integration (ICI), in collaboration with principal investigator Satomi Shinde from the University of Wisconsin—River Falls, have received $96,000 in funding from the Tommy G. Thompson Center on Public Leadership for a one-year grant entitled, Improving the Self-Determination of Students with Intellectual and Developmental Disabilities in Wisconsin. Tichá and Abery, who are the project’s subaward principal investigator and subaward co-principal investigator, respectively, will work with Shinde to develop an education and technical assistance program for middle and high school teachers in 10 schools (five middle schools and five high schools) in Wisconsin, providing them with strategies to support self-determination among their students with intellectual and developmental disabilities (IDD). “This project offers us the opportunity to apply what we have learned about self-determination over the last 15 years of working with adults with IDD to a younger group in the hopes of supporting their transition from school to work and inclusive community living,” says Abery. Tichá and Shinde were fellow PhD students in the Special Education program at the University of Minnesota a decade ago. “This presents an opportunity to reconnect in an area of common interest of supporting special and general education teachers to incorporate self-determination into their daily inclusive teaching practice,” says Tichá. The University of Wisconsin—River Falls is the lead institution on this project.

MNLEND Fellow becomes a Special Education Director at Minneapolis Public Schools

August 22, 2019
Deeqaifrah (“Deeqa”) Hussein at her new office in the Minneapolis Public Schools.

The Minneapolis Public Schools have chosen Deeqaifrah (“Deeqa”) Hussein (MNLEND Fellow, 2017–18) as a Special Education Director. She credits many people and organizations for helping her get the position, including her husband Abdi Hussein (MNLEND Fellow, 2016–17) and family (she has two children with autism); the University of St. Thomas where she is earning her doctorate in Educational Leadership and Learning; her internship at the Minneapolis Public Schools with Rochelle Cox, Executive Director of Special Education and Health (and Hussein’s new supervisor); and the student/family advocacy skills she learned as a MNLEND Fellow at the College’s Institute on Community Integration (ICI). Hussein spent the past two years as an Autism Itinerant Teacher, and for two years before that she was a High School Special Education Resource Teacher. Going into her 14th year in education, she is now one of four Special Education Directors in Minneapolis who report to the district’s Executive Director. Each Special Education Director covers a different portfolio of schools, and Executive Director Cox oversees the entire department. Hussein brings both a professional and personal mission to her task.

When her eldest son, Ayub, who is now 11, was diagnosed with autism, she changed careers from being a teacher in general education to special education. She later learned that another son, Asad, now 7, was on the spectrum. “Being a parent of children with autism informs every decision I make as a teacher. The students I work with are just like my own children. Advocating for their needs is the greatest accomplishment a teacher could ask for. When our students thrive in the general education classroom, it is rewarding for us. We celebrate their gains while we accommodate their needs. Being a parent gave me the inside scoop of what family and home life is like for my students. It also gave me the advocacy skills and the educational training to fight for my children in the school district. I have the benefit for working for one district while my children attend a different district. I compare different programs and adapt and adjust for the next service that my students, as well as my children, should access.”

“I belong to many organizations and the fellowship taught me the benefit of cross-organizational networking; the autism community is well connected and MNLEND trains parents to seek equitable services for their loved ones,” says Hussein. Formally known as the Minnesota Leadership Education in Neurodevelopmental and Related Disabilities Program, MNLEND is a center at ICI that prepares future leaders—known as Fellows—who will serve children with autism and other neurodevelopmental and related disabilities, and their families, in healthcare, education, human services, and policy settings. “I honed my advocacy skills while expanding my lens from parent and educator to a leadership perspective where I now think about improving the quality of life of children and families with disabilities through person-centered planning. I connected with other parents, doctors, speech and language pathologists, and other professionals I wouldn’t have met otherwise. I shared my own experience and benefited from the experiences of other fellows. The program combines families, educators, doctors, and experts in the field and trains them in leadership. And by listening to families, professionals learn to serve with humility and compassion. I have focused on my students’ quality of life and my own children’s trajectory of educational opportunities as they navigate through society. And I appreciate the diversity inclusion that MNLEND/ICI programming is extending to our communities of color.”

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.

Educator from Zambia visits ICI

July 17, 2019
Mikala Mukongolwa in Zambia, teaching a child with a disability.

Mikala Mukongolwa visited ICI May 23–July 5 to share her knowledge, skills, and experiences working with children with disabilities in Zambia, her home country in southern Africa. Mukongolwa and her team in Zambia educate children with disabilities who cannot attend a classroom; she runs the country’s only home-based education program. While in the U.S., she honed her skills and expertise, learning from other disability specialists. She has taken that knowledge home to Zambia, where enforcement of the country’s inclusive education policy has been uneven.

Over the years, Mukongolwa has served as ICI’s primary contact on disability issues in Zambia. She leverages her home-based education program with DirectCourse, an online training program developed by ICI’s Research Center on Community Living. Now Mukongolwa uses DirectCourse in Zambia to train local providers, faith-based organizations, families, and individuals with disabilities. ICI’s Macdonald Metzger provides Mukongolwa with additional training and support on how to use the DirectCourse learning management system and all of its functionalities. “DirectCourse is the only free training program on disability issues available to family members and teachers in Zambia, so it is a very important training resource for us,” she says. “Over 3,000 people have been trained using the curriculum. This training program has helped change people’s behaviors, attitudes, and old beliefs that falsely linked disability to witchcraft. DirectCourse has increased teachers’ and parents’ knowledge and understanding of practices and approaches in the U.S. context and how we can apply those strategies in Zambia.”

DirectCourse financed Mukongolwa’s visit. “The policies might be there but people are not trained on how to implement them,” she says of her home country. “This is where DirectCourse online training program comes in. Because it helps people understand how to tailor supports to people with disabilities in Zambia.”

Making the Minneapolis parks more accessible

July 17, 2019
Molly Peterson

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.”

ICI supports community-based employment of youth with disabilities in Bhutan

June 18, 2019
The project includes staff from Bhutan, the United Kingdom, and two units within the College of Education and Human Development.

In May, ICI’s Brian Abery and Renáta Tichá—along with Christopher Johnstone from the College’s Department of Organizational Leadership, Policy, and Development—received a $148,000 subaward from the University of Birmingham in the United Kingdom (U.K.)  for a three-year project that will support the inclusive community employment of youth and young adults with disabilities in Bhutan, a mountainous kingdom in south central Asia. This program of research and development entitled, Understanding, Developing, and Supporting Meaningful Work for Youth with Disabilities in Bhutan: Networks, Communities, and Transitions, will be conducted in collaboration with colleagues from the University of Birmingham and Royal Thimphu College in Bhutan. It will include Abery and Tichá developing and implementing tools to assess employment for people with disabilities in Bhutan, reviewing services that support this outcome, and determining which, if any, additional services they would recommend. This information will be used in conjunction with current policy and legislation to promote community-based employment in Bhutan for young people with disabilities.

“This work provides us an exciting opportunity to collaborate with a former ICI colleague, Matthew Schuelka [see Alumni Update below], and our colleagues at the University of Birmingham and Royal Thimphu College to determine how we might adapt strategies used in the U.S. and U.K. to a totally different culture and environment,” Abery says. “We expect that much of what we learn in Bhutan will help us strengthen the employment approaches and strategies we use here in the U.S.”

Tichá agrees. “It’s a real privilege to be able work in a culture that has unique values, history, and social structures,” she says. “This experience gives us an opportunity to not only share our knowledge and expertise, but to adapt our approaches to assessing employment environments and outcomes based on the local context.”

The project is funded by the U.K.’s Economic and Social Research Council through a subaward from the University of Birmingham that runs from May 2019 through April 2022.

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.”

Fellow visits ICI from Kenya to learn American inclusive employment practices

May 16, 2019

Daniel Mbugua Chege

Working in competitive employment is a long-term—and often difficult—goal for many people with disabilities. Those difficulties are even greater in developing countries like Kenya, but Daniel Mbugua Chege knows they can be overcome. “I believe in persistence,” says Chege, an Inclusive Employment Fellow from Kenya who established six community-based organizations in Juja Constituency to reduce the stigmatization of people with disabilities while promoting their self-advocacy and economic self-reliance. He is spending a month at ICI, observing how these issues are addressed in the U.S. and searching for ideas that he can bring home.

Chege lives in Kiambu County in Kenya where he works as Vice Chairperson of Murera Persons with Disability Welfare Association, a community-based organization committed to enabling its members, who have disabilities, to become self-reliant in the local economy. All of his organization’s members have registered with the National Council for People with Disabilities in Kenya to advise disability policy in the country and help coordinate services. He previously worked with Kenya’s National Council for Persons with Disabilities, the Self-Reliance Development Corporation, and Leeds Solutions.

Chege believes information can liberate a community. Along with persistence, he sees information as the key difference between stagnant and mobile futures for Kenyans with disabilities. He also sees business opportunities as a means of community integration and a way to improve livelihoods and socially-valued roles.

Chege’s Fellowship goal is to create a business hub in Kiambu County for low-skilled people with disabilities. The business hub will integrate people with disabilities with other skilled entrepreneurs who will help them earn skills. This strip mall model will include small businesses such as tailor shops, barber shops, salons, welding services, and small markets, with all employees supported by project staff. Kenya has devolved government authority to the local level and Chege considers this an opportunity to replicate this business model throughout the country.

The Fellowship is funded by the Association of University Centers on Disabilities, of which ICI is a member, and by the U.S. Department of State. 

Strengthening inclusive education in Ukraine

May 16, 2019

Several ADA Anniversary Fellows from Ukraine. Pictured at the University of Minnesota in 2017 with ICI’s Renáta Tichá (left) and Brian Abery (right).

Renáta Tichá and Brian Abery, co-directors of ICI’s Global Resource Center (GRC) on Inclusive Education, are collaborating with young professionals in Ukraine to strengthen inclusive education at the university and public school levels in six of that country’s regions through lectures, a train-the-trainer model, and mentoring. These activities, conducted by the GRC co-directors and six community consultants from Minnesota, are designed to positively affect pre-service trainees and practicing teachers, policymakers, students with and without disabilities, and families across Ukraine. The project, Developing Leadership Capacity in Inclusive Education: A U.S.–Ukrainian Partnership, focuses on universities and schools outside the Kiev region where resources tend to be significantly fewer than in the capital region. Grant activities will include U.S. staff traveling to Ukraine to support the continued development and expansion of Inclusion Without Borders, a national inclusive education community-of-learning initiative. The project builds on a partnership with Ukraine on inclusive education that began in 2017 when Ukrainian Fellows in the GRC’s ADA Anniversary International Fellowship Program in Inclusive Education visited Minnesota (several of whom are pictured), followed by U.S. mentors visiting different regions of Ukraine.

“It is exciting to be part of a movement that started with our ADA Anniversary Fellowship program in Minnesota two years ago and blossomed into local and systems changes for teachers and students with disabilities in multiple regions of Ukraine,” says project co-director Tichá.

Abery, her co-director, agrees. “The strength and motivation of the project team and the work they are doing to facilitate inclusive education in Ukraine is amazing, with former fellows from all over the country making significant contributions,” he says. “Collaborating with each other on a regular basis, in spite of great distances between them, this group of educators truly exemplifies the maxim, ‘Together we are Better’.”

The project is funded with a $24,000 award from the U.S. Embassy Ukraine that began April 15, 2019 and ends June 30, 2020.

New toolkit helps educators include students with disabilities

April 17, 2019
Teacher helps student in her inclusive classroom in Armenia.

ICI has launched Inclusive Education Strategies: A Toolkit for Armenia. Developed by faculty and staff from the University of Minnesota—including ICI’s Renáta Tichá and Brian Abery—and Armenian State Pedagogical University (ASPU) in the Republic of Armenia, the toolkit will help educators include students with disabilities in regular classrooms and after-school activities. Significantly, the toolkit contains a textbook that is the first inclusive education resource in the Armenian language that was co-authored by Armenian academics and educators working in the field. The toolkit is a valuable resource for implementing inclusive education practices in post-Soviet countries like Armenia and countries on the path to a more inclusive society.

The toolkit includes the following:

Funded by UNICEF Armenia, the faculty and staff from the University of Minnesota and ASPU developed these inclusive education materials to be relevant to both U.S. and Armenian contexts. Each chapter in the textbook was co-authored by U.S. and Armenian authors to ensure the inclusive strategies could be implemented meaningfully in the Armenian education system. The film, Education for Every Child: Armenia’s Path to Inclusion, highlights some of the milestones toward inclusive education in Armenia. All materials are or will be available in both English and Armenian.

Reflecting on the project that produced these inclusive education materials, Tichá said, “True international collaborations take much time and effort. This project and its products represent two years of work, spanning two countries, two cultures, and two languages. The result is a comprehensive toolkit of cross-cultural resources that support educators who will include students with disabilities in a meaningful learning process and environment.”

Podcast series to assist families with autism

April 17, 2019
Tera Girardin.

On April 30, MNLEND Fellow Tera Girardin will launch her podcast series for families with children who have been recently diagnosed with autism or other developmental disabilities, as part of her Minnesota Leadership Education in Neurodevelopmental Disabilities (MNLEND) project. The podcast will be hosted by Beth Dierker (MNLEND Fellow, 2018), Executive Director of Communities Engaging Autism. Girardin and Dierker are both parents of children with autism and the podcast series will provide useful information to families who are wading through the information and decisions that accompany a diagnosis of autism or other developmental disabilities.

Conversational in tone but grounded in research, The Oxygen Mask Podcast will have six episodes in its first season. The series title refers to airline safety procedures that advise families to put on their own masks before assisting others. “We want to provide families an oxygen mask, or a breath of fresh air and a pause, for parents who are navigating their families’ journey with autism or other developmental differences,” says Girardin, a photographer who also wrote and illustrated the book Faces of Autism. Themes for the planned podcast include self-care while caring for others, person-centered thinking, advocating for the child, relationship strains, avoiding burnout and information overload, and learning to trust one’s instincts. The podcasts will be distributed through the Communities Engaging Autism website, Tera Photography website, and other podcast and social media platforms.