The Institute on Community Integration and University of Massachusetts Boston received a $3 million grant from the Minnesota Department of Human Services to design and implement a statewide strategy for connecting Minnesotans with disabilities to better jobs and higher pay.
Designed to help organizations move away from supporting employment that pays subminimum wages, the Minnesota Transformation Initiative (MTI) Technical Assistance Center will design and implement plans to assist nearly two dozen service providers as they expand their customized, integrated employment services. MTI will provide peer-mentoring strategies for job seekers with disabilities and for organizations, along with progress and quality assessments.
“There has been legislative momentum at both the federal and state levels for ending subminimum wages, and this work represents Minnesota’s commitment to being ready for a change,” said Danielle Mahoehney, a community living and employment specialist at the Institute.
An app designed to help individuals make the leap to competitive employment will be developed as part of the grant. The team also will provide outreach and support to families of people with disabilities from diverse backgrounds to assist them as they transition to the new system.
“Providers are hearing the drumbeat on competitive employment and many are saying it’s better to start preparing now,” Mahoehney said. “It’s a huge philosophical shift, and a substantial shift in how organizations train their staff.”
The grant will benefit eight service providers who expect to be fully transitioning their workshop-based model over the next couple of years. About 15 other providers in various stages of their own transition will also receive training and other support as part of the grant, said Julie Bershadsky, director of Community Living and Employment at ICI.
“Our partners, including the University of Massachusetts and the Arc of Minnesota, will be expanding the reach of this work beyond these providers to engage self-advocates, families, the provider community and others,” Bershadsky said.
Recognizing the challenges for providers and people with disabilities themselves in making this change is important, Mahoehney said.
“Some people with disabilities have been going to these work programs for decades and they like the stability and the routine,” she said. “There are also barriers for families trying to make this work, but we also know the benefits of truly including people with disabilities in the workplace and with the economy today, this is a great time to be helping people with disabilities get jobs. Work can be a way out of poverty for them.”
In March, Kamila Rollan was appointed to the Presidential Council for Youth Policy by Erlan Karin, the State Secretary of Kazakhstan.
Rollan, now a third-year PhD student at the University of Cambridge in the United Kingdom, was a 2017 fellow in the Americans with Disabilities Act (ADA) Anniversary Inclusive Education Fellowship Program. The University of Minnesota program was led by the Institute on Community Integration and the Humphrey School of Public Affairs, in cooperation with Arizona State University and several international partners.
The appointment came swiftly after a new government was installed in Kazakhstan in January, amid demands for more accountability in government, said Rollan.
“The main functions are advising and informing the president about the issues and needs of youth, providing recommendations for the youth policy agenda, and analyzing the agenda’s implementation,” she said. “It’s a platform for people like me to voice our concerns about the state of affairs for youth.”
In a public statement, Karin said the group includes public activists, scientists, entrepreneurs, and organizational leaders, who will contribute to the development of conceptual documents and practical recommendations for improving youth policy. They have already met twice and are now dividing into working groups to develop the recommendations.
“At this new stage in the development of our country, the Council will become an effective platform for the systematic advancement of the youth agenda,” Karin said.
Rollan said she brings a measure of gender diversity to the 29-member body, which is 70 percent male, as well as a perspective informed by her work in the disability and inclusion field, both as a founder of a non-governmental organization and as a student. Her in-process thesis explores how NGOs affect inclusive education.
As ADA fellows from Kazakhstan, Rollan and Sabina Ismailova developed an early framework that led to founding an NGO that provided educational support services to students with disabilities in inclusive settings in their home country. Due to the pandemic and other factors, the organization is now winding down, she said, but the families brought together through its formation are still keeping in touch and providing support to one another. The experience also informed her thesis work.
“Some of my respondents strongly believe that without NGOs, inclusive education wouldn’t happen, or it would take much longer to happen,” she said. “I employ systems thinking to promote a holistic vision for making NGOs’ work more visible. Inclusive education won’t really work unless we weave it into society, culture, and the workplace. It’s all part of one, big story.”
The Institute on Community Integration is joining with the Association on Higher Education and Disability (AHEAD) and other partners to oversee and expand the National Center for College Students with Disabilities (NCCSD).
Under a cooperative agreement from the U.S. Department of Education Office of Postsecondary Education, the consortium will create educational modules for faculty at institutions of higher education and educators working in transition programs. The consortium also will expand a national database of resources and provide educational materials and technical assistance related to transition planning to transition staff, parents, and young adults with disabilities. It will also evaluate the outcomes of these efforts.
“IEP and transition teams know that most jobs today, and in the future, will require more than a high school education,” said ICI’s Brian Abery, principal investigator (pictured at right with ICI’s Renáta Tichá, co-principal investigator). “This work is about ensuring that postsecondary programs have the resources to address the needs of people with all types of disabilities, with the goal of enhancing their opportunities for competitive employment and active citizenship.”
Through the partnership, NCCSD will begin addressing the specific postsecondary education needs of students with intellectual and developmental disabilities (IDD). Key partners will include administrators, educators, families, and students at institutes of higher education, transition programs, and high schools.
Wendy Harbour, associate executive director for programs and development at AHEAD, will oversee day to day operations of the center.
Tichá will provide outcome measurement and other services.
“The timing of this project is fortuitous because of our ongoing work on improving transition services,” Tichá said. Tichá and Abery are leading an Administration on Community Living Project of National Significance that aims to increase employment, higher education, and community participation among Minnesota youth. “The connection allows us to leverage work in both projects to enhance post-secondary opportunities for all students.”
NCCSD provides technical assistance and training that supports the inclusion of students with all types of disabilities at universities, colleges, and other training centers.
“This work provides students with disabilities, family members, faculty, and staff the supports they need to make high quality education truly accessible and profitable for students with disabilities,” Abery said. “By profitable, I mean that they are closely connected to successful postsecondary outcomes. If someone spends years at an institution of higher education, we expect them to graduate with the skills and competencies needed to make the contributions to society they wish to make.”
ICI researcher Sarah Hall in front of the poster she co-authored, speaking with a visitor at CEHD Research Day 2022.
From studying the detection of autism in early childhood to an exploration of retirement for older adults with disabilities, ICI investigators shared their work to address inclusion across the lifespan at the College of Education and Human Development’s recent Research Day.
Autism Spectrum Disorder Prevalence in Minnesota, a poster presented in the Autism and Developmental Disabilities category, received a “People’s Choice” award, based on votes from attendees.
“We were humbled and grateful to receive this award from our CEHD peers,” said Jennifer Hall-Lande, who co-leads ICI’s ongoing study of Autism Spectrum Disorder prevalence. The poster was authored by Jeannette Sample,Amy Esler, Hall-Lande, Libby Hallas,Courtney Higginbotham, and Jenny Poynter. “Research Day is a great way to learn about the innovative research and work being done in our CEHD community, and it was wonderful to be back in person after two years away [due to the pandemic],” Hall-Lande said.
Another featured project, What Do Older Adults with IDD Think About Retirement? shared data from interviews that found participants were typically pushed into retirement by health issues or negative experiences at work, so few were able to plan in advance. This research is now informing ICI’s work to modify the Australian Transition to Retirement program to the U.S. context.
“I really enjoyed how Research Day brought together people from different disciplines who have similar and intersecting interests,” said ICI’s Sarah Hall (pictured), who presented the retirement research along with ICI’s Lynda Lahti Anderson,Roger Stancliffe, and Julie Kramme. “I talked with an occupational therapist who showed great interest in what she and her colleagues could do to support people with IDD in retirement. The more I described their retirement experiences, the more practical ideas we identified for occupational therapists to help adults with IDD to prepare for retirement.”
Additional teams presented ICI’s work exploring how direct support professionals (DSPs) were affected by the COVID-19 pandemic, as well as racial disparities in DSP wages. ICI Director Amy Hewitt, along with Julie Bershadsky,Sandra Pettingell, Julie Kramme, and Jerry Smith, contributed to these projects, which included the largest survey to date of DSPs.
Charity Funfe Tatah Mentan and Darrell Peterson presented Improving Instruction: Innovative Approaches to Engage English Learners, Parents, and Teachers for Educational Equity. This work from the National Center on Educational Outcomes at ICI created practical approaches for engaging parents, caregivers, and teachers of students who are learning English as a second language. A multi-lingual toolkit available in audio and PDF formats was presented, along with online training modules emphasizing collaboration among students, families, and teachers when making decisions about accessibility features to ensure equity in education.
“There has to be synergy between home and school to provide the equity that is needed for children to succeed,” Funfe Tatah Mentan said. “Some parents of English language learners don’t always understand their rights and responsibilities around the accommodations their children are receiving.” She said the event helped spark several conversations with CEHD colleagues, graduate students, and others around the idea of increasing equity in the classroom.
“It was nice to be able to see a lot of students at the event as well,” added Peterson. “Their insightful questions, particularly from a few who plan to go into related fields, was a neat experience for us and helps keep this work fresh.”
Other projects selected for the day included What Do Teachers Know About the Accessibility Features for English Learners? by Yi-Chen Wu and Aparna Leena; and Shifting Tides in Medicaid-funded Supports for People with Intellectual or Developmental Disabilities: RISP FY 2018 Highlights, by Jon Neidorf and Sheryl Larson.
The just-launched spring issue of Impact explores the state of inclusive higher education for people with intellectual, developmental, and other disabilities (IDD). Contributors include senior academic leaders in the field, heads of successful and emerging alliances and programs, and students and alumni, who share their college experiences.
“This issue of Impact captures our collective progress in a field that is growing but still under development,” said Meg Grigal, co-director of Think College and a senior research fellow at the University of Massachusetts Boston’s Institute for Community Inclusion. “It reflects how legislation can change lives, but not without hard work, vision, and holding true to inclusive values and high expectations for people with intellectual disability.”
Grigal served as an issue editor and author, along with David R. Johnson, University of Minnesota; Susanna Miller-Raines, Think College; and Beth Myers, Syracuse University.
Impact is the Institute’s flagship publication. Each issue explores a single topic of importance to people with IDD from a variety of perspectives. Overview articles by academic thought leaders and disability services practitioners discuss critical progress and needed resources in the field. Profiles of successful or promising programs and how-to articles highlight the practical aspects of serving the disability community. And personal stories share insights directly from people with disabilities themselves or their families. Click here for a free print or digital subscription.
The issue includes an article by the current and a past chair of the National Coordinating Center’s Accreditation Workgroup on progress the field is making toward development of critical standards that will help students and families choose higher education programs.
Other articles share resources for exploring college options, strategies for getting inclusive programs off the ground, and recommendations for making programs more inclusive for students with IDD. More than 6,000 students with intellectual disability are estimated to be enrolled in postsecondary programs today.
Among several students who share their personal stories, readers will meet Hope Hansen, a sophomore in the Riverhawks Scholar Program at Northeastern State University in Oklahoma. Hansen’s story speaks volumes about the contributions students with disabilities can make to community life on campus.
“All this experience has made me want to help people realize they are going to be OK at college, whether they have disabilities or not,” Hansen shares in her article. “Some people just don’t have friends in high school, and I tell them if they need anything, I’m there. I want to be the person who says, ‘I’ve got you.’”
Together, the articles in the issue celebrate the field of higher education as a nexus for special education, rehabilitation, and disability advocacy, Grigal said.
“Combining the greatest strengths of these fields will create new and improved pathways for students with IDD,” she said. “Our field has the capacity for growth and the contributors to this issue demonstrate their commitment to improving both practice and outcomes.”
Newly published research by authors from the University of Minnesota found racial disparities in identifying autism in young children, and overall prevalence rates point to broad implications for all children with autism as they grow into adulthood.
Researchers noted differences in the ages of identification and recorded symptoms found among children who were only evaluated in special education school settings compared with those who had other diagnostic evaluations.
“Our study found that Black, Asian, and Hispanic children were more likely than white children to have been identified with autism only in a school setting, which suggests they may have less access to specialized autism evaluations in clinic settings,” said Esler. “Children who only accessed school evaluations were identified with autism more than a year later than those who had access to a clinic evaluation. The study demonstrates the critical importance of early, accurate identification, and how racial and other disparities continue to affect how and when children are identified as needing services.”
As World Autism Month approaches, it’s important to highlight these disparities and pose new research questions that will address the challenges of autism across the lifespan, Hall-Lande said.
“We need to explore conversations in diverse communities about what’s changing in the data around ages at identification,” Hall-Lande said. “We know we’re doing better at identification by age 4, but we’re also identifying more children who are a little older, so that can alter the averages.”
The critical factor going forward, said Hall-Lande, is taking this understanding of the prevalence of autism and applying it to help people with autism now and as they transition to adolescence and adulthood.
“Given the most current prevalence estimates, it’s likely that if you walk into a typical third-grade class, there will be students identified with autism. Knowing this, we need to be doing a better job of identifying them early and planning for their futures.”
Mary Hauff and her daughter, Jean, a student at Duquesne University in Pennsylvania.
Frustrated by the slow march toward inclusive higher education in their home state, two Minnesota parents of young adults with intellectual disability are creating buzz—and proposed state legislation—aimed at boosting inclusive academic options across the state.
Sally Sexton (MNLEND 2020-21) and Mary Hauff, along with ICI Director Amy Hewitt and others, have formed the Minnesota Inclusive Higher Education Consortium (MIHEC), a group of students, families, education, state agency, and policy stakeholders. The group advised state legislators on the Minnesota Inclusive Higher Education Act, introduced recently, which would provide competitive grants to develop or enhance inclusive higher education initiatives and create a standards framework to ensure colleges and universities offer a high-quality education. Seunghee Lee, an ICI researcher, and parent Liz Hannan are also founding members of the consortium.
The group recently launched a website and a virtual forum addressing ableism and the opportunities of inclusive postsecondary education. Presenters include Sexton and Rebecca Dosch Brown, ICI’s director of interdisciplinary education. The site features higher education resources and will include accessible versions of the group’s learning community events.
“The site provides a foundational home for the consortium and is the result of our efforts to bring key stakeholders together and continue the positive momentum to expand inclusive higher education here in Minnesota,” said Hauff. “I thought back in 2008 (when the Higher Education Opportunity Act became federal law), that everything would be in place for my daughter.” With no inclusive four-year college programs in Minnesota, however, Hauff’s daughter Jean is attending college in another state.
“Jean is 21 and has been ready for college for a couple of years, but there wasn’t a Minnesota college option that was a good fit,” Hauff said. “She’s now attending a four-year certificate program at Duquesne University, but even that has been complicated by the pandemic. We want to help students with disabilities open the doors to higher education here in Minnesota,” Hauff said.
Sexton felt a similar call to become involved after her daughter, Brynn, expressed an interest in a career as an American sign language (ASL) interpreter. “She would like to enroll in college next year, and she wants to earn an ASL certificate, but when you start walking through the process and look at test scores and grade point average requirements, it becomes a barrier. A large portion of students with intellectual disability don’t know that college can be a pathway to a real career, but Brynn has this vision and dream.”
The group wants to expand accessibility supports and services to more students, including those with other disabilities. While the federal law applies specifically to students with intellectual disability, the group recognizes the need for supports for students with developmental disabilities, Sexton said. Some students with developmental disabilities are accepted into college through the traditional admissions process, but struggle once they are on campus.
“Those students may have access to college, but not the supports needed to have success in college,” Sexton said. “The consortium’s positive momentum created this website and helped propel the proposed legislation. We’re optimistic about the future of inclusive higher education in Minnesota.”
During the 2022 Check & Connect conference in February, Heather Keeler, a former Check & Connect mentor and now a Minnesota state representative, discussed her American Indian heritage and the lens that brought to her mentoring practice.
ICI’s Check & Connect Student Engagement Intervention conference logged record attendance at its biannual user event in February, as school districts increasingly deploy American Rescue Plan funds to help students regain ground lost to the pandemic.
The two-day, virtual conference gathered 561 participants, more than double the attendance of the previous conference. This year’s event featured National Check & Connect Mentor Awards and Check & Connect Champion Awards, given to six individuals who have demonstrated a high degree of success with the program. The conference also featured videos submitted by school districts that are achieving strong results with the program.
“Our all-virtual platform made this conference more affordable for participants, precisely at a time when school districts are coming off of two challenging academic years for their students,” said Eileen Klemm, the ICI program manager responsible for implementing Check & Connect globally. “At-risk students in particular are still struggling, and this conference provided schools already using Check & Connect an opportunity to compare strategies for deepening their connections to these students and keeping them from falling off the grid.”
Another highlight was Heather Keeler, a former Check & Connect mentor, now a state representative in Minnesota. She discussed her American Indian heritage and the lens that brought to her mentoring practice.
Check & Connect, created at ICI more than 30 years ago, works with K-12 students who display warning signs of disengagement with school and who are at risk of dropping out. The evidence-based process involves employing trained mentors who use frameworks and/or technology supplied by Check & Connect to monitor students’ attendance, behavioral issues, and grades, and who develop a relationship with each student. The program has been implemented in 48 states and several non-U.S. countries.
Ann Romine and Michelle Austin, national Check & Connect trainers, helped lead the content creation and technical aspects of the virtual conference.
“We had 42 presenters and designed the conference to engage participants through a variety of interactive offerings. The customer survey feedback has been incredibly positive so far,” said Austin.
Nicole Boone, a student support specialist at Northampton County High School in Gaston, North Carolina, was one of the Check & Connect Champions honored at the conference.
“Spending that time with them makes all the difference in the world. You are that one link that will stop them from giving up on themselves,” Boone said. Since Check & Connect began in Gaston, absences have declined and academics have improved among students in the program, she said.
Another Champion, Jeff Sagers, said the conference gave people who serve as mentors a glimpse of how others are implementing the program and connecting with students. Beyond the organizational and technical aspects of Check & Connect, he said, those connections are at the heart of the program’s success.
“I had one student a couple of years ago who everyone wanted to put in the alternative high school because he was credit deficient and wasn’t expected to graduate. I said he’s a phenomenal saxophonist, and he’s not going to the alternative high school because they don’t have band,” Sagers said. “He not only graduated, but got a music scholarship to college. Kids rarely remember what you teach them, but they always remember how you treated them.”
Music therapist Yue Wu (MNLEND 2019-20) is working on a second production of her show, Light in the Well, which weaves together symphony movements and the real-life stories of people with disabilities. The show debuted in October at MacPhail Center for Music, where Wu works as she pursues a doctorate in rehabilitation science at the University of Minnesota.
“The reaction was overwhelming,” Wu said. “We had volunteers record interviews with audience members after the show, and many were moved and clearly holding back tears on camera. They had come to be entertained, but left educated.”
Wu and her team created the experience as her MNLEND project, interviewing people with disabilities and their families about the difficult times and loneliness that can envelop a family living with disability. As she worked with families at MacPhail, she drew the analogy of being isolated in a dark well, but also noticed their ultimate resilience and joy.
Working with composer Phil Shorey, who created a six-movement symphony depicting the stages of grief leading to acceptance, Wu brought in four people with disabilities and their families at each movement, playing instruments, singing, verbally sharing their stories, or dancing to the score. The stage of acceptance is meant to represent the hope, or the light in the well, either coming from within individuals, or from society, or both. This fall, Wu will bring the show to the Landmark Center in St. Paul.
Wu expects to organize a second fundraising campaign to help defray the costs of the performance, including covering the cost of the musicians and other professionals working on the show. She has built a presence on several social media channels, including Facebook and TikTok .
“It’s a show about individuals sharing the story of themselves and their families, and how they come to where they are,” said Wu, a native of China who plans to work on global disability issues as her career develops. “The light is love, and hope.”
Global approaches for using outcome measures to enhance the human and civil rights of people with disabilities will be presented April 11 at a live and virtual forum co-sponsored by the Institute on Community Integration and the U.S. Department of Health and Human Services’ Administration for Community Living.
Measuring Outcomes of People with Disabilities: An International Forum will feature presentations from Julie Beadle-Brown of the University of Kent in the United Kingdom and Jan Šiška of Charles University in the Czech Republic. Other presenters include ICI’s Roger Stancliffe, professor emeritus at the University of Sydney, Australia, along with Renáta Tichá and Brian Abery. The host is ICI’s Research and Training Center on HCBS Outcome Measurement.
“Through this forum, we want to create a global vision for developing rigorous outcome measurements that lead to improved disability services and policies,” said Tichá. “These frameworks are a critical component of reducing the significant disparities in life outcomes between people with and without disabilities, and ensuring that the rights of people with disabilities are respected.”
A panel discussion will explore the different indicators, frameworks, and approaches used around the world to assess quality in disability service and policy contexts and propose improvements for the future.
Panelists will include Dorothy Hiersteiner and Stephanie Giordano from the Human Resources Research Institute, Shawn Terrell from ACL, Allan Heinemann and Anne Deutsch from Northwestern University, Carli Freedman from the Council on Quality and Leadership, Christine Linehan from University College Dublin (Ireland), and Anne Rosken from University of St. Gallen (Germany).
The live event will be held in ICI’s new home at the Masonic Institute for the Developing Brain, 2025 E. River Parkway, Minneapolis.
Under a U.S. State Department grant aimed at combatting persistent human rights abuses in the Democratic Republic of the Congo, the Institute on Community Integration last month trained people with disabilities and non-profit organizations in the central African nation on advocacy strategies, including the use of radio and social media to raise awareness about disability rights.
Working with the Kadiwaku Family Foundation, ICI’s Macdonald Metzger and Lynda Lahti Anderson offered training in social and broadcast media storytelling for about 100 individuals with disabilities, and in strategies for cooperatively advocating for the rights of people with disabilities for representatives of more than 60 community, governmental, and human rights organizations. The trainings were held in Kisangani, a city of about 1.2 million people.
“With very few resources, there is actually quite a lot of disability advocacy work going on there,” Anderson said. “Our message was focused on how to support a community of practice and have organizations work together to build a sustainable structure.”
The DRC ratified the United Nations’ Convention on the Rights of Persons with Disabilities and its laws offer education and employment protections, but substantial discrimination and stigma remain.
“We focused on skills that people with disabilities can use to write scripts, research content, conduct interviews, and essentially, tell their stories at the grassroots level, using radio and social media, to build awareness of disability rights,” Metzger said. “In the future, we’d also like to meet with editors and other media outlet managers to talk about the need for more disability coverage.”
As part of the two-year State Department project, the group earlier surveyed 1,000 people in the region about attitudes and behaviors toward people with disabilities. They expect to repeat the survey later this summer to determine if the trainings helped increase awareness of disability rights. In the initial survey, nearly 83 percent of respondents said they feel uncomfortable when they see a person in a wheelchair. Nearly 50 percent said they have the impression that people with disabilities are being punished for something they have done.
“We were also fortunate to have Iréne Esambo, the DRC minister of human and disability rights, attend some of the events. She’s the first person to hold this office, and she has some ambitious plans to improve things in the region,” Metzger said.
Anderson noted there is power, too, in smaller steps.
“The woman who runs the hotel where we stayed came to the training and said she had never thought about accessibility features because she believed people with disabilities wouldn’t be able to afford to stay in a hotel. After the sessions, she said she would be incorporating accessible features into an expansion she’s planning. And an English professor we hired as a translator said he would be volunteering to help increase the enrollment of students with disabilities in schools. It just takes a couple of people to start a ripple.”
Maren Christenson Hofer (MNLEND 2018–19) pictured at an earlier event with her autistic son, Simon. He was vaccinated against COVID-19.
Several of the Institute’s MNLEND program fellows—current and past—have played key roles in bringing sensory-friendly vaccine clinics to children and families in the Minneapolis-St. Paul area.
Fatima Molas (MNLEND 2016–17) and Maren Christenson Hofer (MNLEND 2018–19; pictured at an earlier event with her autistic son, Simon) of the Multicultural Autism Action Network, and Ellie Wilson (MNLEND 2010–11), executive director of the Autism Society of Minnesota, collaborated with several other partners to create COVID-19 vaccination clinics with quiet rooms, music therapy, a drive-thru option, and distraction techniques.
“At most vaccine events, the goal is getting as many shots in arms as possible,” said Hofer. “Our primary goal was creating the best possible experience and to bring some compassion and understanding to children and families, who may have experienced past trauma or have ongoing anxiety in these settings.”
“It was very meaningful work,” Yiman said. “I was really happy to be able to volunteer in this way and talk to the families.”
Hennepin County Healthcare and Spero Academy partnered with the organizations on the most recent clinics in December and January at Spero in northeast Minneapolis, which drew more than 300 participants. The autism organizations held two smaller clinics last summer in St. Paul.
“We believe everyone deserves access to healthcare,” Hofer said. “Offering this clinic is one way we can make sure all members of our community can stay safe during the pandemic. We offer a little more patience, flexibility, and an extra dose of compassion for anyone who might need it.”
Hofer said families expressed gratitude at the events.
“We had a really nice response. It was a tough day emotionally for everyone, but to see the relief and gratitude of families who had gone to other events and weren’t able to complete their vaccines, to see them feeling supported and not judged for needing some extra help was really nice,” she said.
Brian Abery and Renata Ticha with international scholars in ICI’s new home at the Masonic Institute for the Developing Brain in Minneapolis.
Several scholars from Europe, Australia, and central Asia are visiting the Institute on Community Integration (ICI) as part of a broad-based exchange aimed at increasing the inclusion of people with disabilities around the globe.
The visitors, on campus for varying lengths of stay, are from the Czech Republic, Spain, Kazakhstan, and Australia, and are working with ICI’s Global Disability Rights and Inclusion program area, led by Brian Abery and Renáta Tichá (pictured at left).
Roger Stancliffe (not pictured), professor emeritus at University of Sydney, joins ICI as a senior research associate. He is working with an ICI team that is studying the transition to retirement process and served as an editor for the Institute’s most recent Impact issue focused on aging and retirement.
Jan Šiška (third from right), a Fulbright-Masaryk scholar from Charles University in Prague, Czech Republic, is building relationships with U.S. disability organizations and gathering information about programs that assist students with disabilities in their transitions to community life after high school. He’s also building a framework for assessing the quality of social services across Europe.
“The work also involves studying [ICI’s] research and project management methods and learning broadly about the American disability culture,” Šiška said. He will collaborate with Tichá and Abery on specific post-secondary education and independent community living objectives as part of grants their respective institutions have received from the U.S. and Czech governments.
“We are trying to assess to what extent transition programs and education for young adults help them to become active citizens – working in the community and voting, for example – and how we can work together to build a framework for teachers to enhance their expertise,” Šiška said.
Cristina Cardona Moltó (second from right), a professor at the University of Alicante in Alicante, Spain, is developing an index that will be used to assess the quality of inclusive special education instruction.
“I’m very grateful to Renáta and Brian for opening the doors of ICI for this work,” she said. “We have different traditions in our respective countries, so having the opportunity to be here and observe the work you do will help us be successful in creating instruments for measuring the effectiveness of how we are preparing teachers for inclusive education.”
In turn, Tichá and Abery said the international visitors bring fresh ideas and different perspectives to their work in improving the lives of people with disabilities.
“We all come from countries with quite different disability policies and practices, but it has actually been smoother than we thought to find areas where we could collaborate,” Tichá said.
Abery said the work is certainly easier when colleagues are sitting across a table instead of communicating virtually, but it goes deeper than proximity and language translation.
“It’s working through concepts that are slightly different in each country but knowing that the ultimate goal is the same, which is to enrich the possibilities for people with disabilities,” he said.
One example is the time the group spent in discussing the different perspectives of active citizenship and what that means to and for people with disabilities.
“My goal in being here is to understand the methods and evidence-based practices in research within inclusive special education because this is new for my country,” said Dinara Yertargynkyzy (extreme right), a senior lecturer at Al-Farabi Kazakh University in Kazakhstan. “Our education systems have been segregated in the past, so I’m grateful for this opportunity to observe.”
Šárka Káňová (third from left), a researcher and senior lecturer in disability studies and inclusive education at University of West Bohemia in Pilsen, Czech Republic, leads a research team focusing on the availability and quality of community-based services for people with intellectual disability and autism in the Czech Republic.
“My time at ICI has provided excellent opportunities to observe ongoing research projects and relate them to other work I’ve studied throughout the European Union with the Erasmus program,” she said. Erasmus is the EU’s program supporting education, training, youth, and sport, with an emphasis on social inclusion, environmental and digital advocacy movements, and promoting young people’s participation in democratic life.
Stancliffe, who has worked extensively with ICI since the 1990s, said international exchanges have made a substantial difference in the disability research infrastructure.
“There was nothing like ICI in Australia when I first began visiting here in the ‘90s,” he said. “Now, disability research centers exist in Australia and some are very strong, a direct result of university-affiliated programs in the United States and the learning that came from them. The scale and rigor of national U.S. research and the self-determination instruments that have been developed and shared are important. Also, what really impressed me in the ‘90s was that people in the United States with disabilities were working alongside fellow researchers, and today that is much more common in Australia, which is an important change as well.”
Innovation created from spending time with other cultures is something that is still being repeated today, Abery said.
“In the United States we often focus on resources and money,” he said. “Working with international colleagues, we see how innovation doesn’t always have to be based on that. Looking at things from a different perspective stimulates everyone’s thinking.”
What would happen if students with varying abilities weren’t just welcome in classrooms, but actually needed? They would create schools that aren’t merely inclusive, but where everyone belongs.
Created in partnership with Vanderbilt University professors Erik Carter and Elizabeth Biggs, the free guide for schools helps them reflect on what they are doing well and what areas need improvement on the road to the full inclusion of students with significant cognitive disabilities. Carter, a former high school teacher and transition specialist, is a widely published author whose research focuses on inclusion strategies. Biggs, a former special education teacher who has worked extensively with students using augmentative communication devices, studies the use of interventions in schools and communities. The authors also led a team to create a second resource on approaches for peer engagement that will be available on the TIES website later this year.
“As students headed back to in-person school, we wanted to emphasize that school should be a place where every student belongs. While this is true for all students, it is particularly true for students with significant cognitive disabilities, who have often been segregated and isolated from their peers,” said Kristin Liu, TIES Center principal investigator. “We launched this resource in October, National Bullying Prevention Month, to bring attention to what schools can do to create a culture of belonging.”
The guide covers nine dimensions of belonging, walking users through the steps required to have students with significant disabilities truly belong in a classroom, from being present (not sitting with a paraprofessional away from other students), to being needed and valued for their contributions to enrich the classroom.
“We found that schools are wanting more resources to be able to reflect on what they are doing well and areas where they want to empower students to become needed members of their classrooms,” said Jessica Bowman, co-principal investigator of the TIES Center, a national technical assistance center on inclusive policies and practices in the kindergarten–8th grade education system. “They want to know what true belonging looks like.”
TIES stands for increasing Time in the general education classroom, Instructional Effectiveness, Engagement with curricula and peers, and Support for Inclusive Practices from state and district education officials.
Students with significant cognitive disabilities have made strides toward being present in the general education classroom, and toward being welcomed and known by their peers, Bowman said, but full acceptance to the point that these students are full contributors has been elusive.
Schools can foster this level of belonging by providing leadership opportunities and skills training to succeed, connecting students with extracurricular activities, and involving them in service-learning projects, among other steps, she said.
Responding to dire shortages in staff supporting people with disabilities, the Institute on Community Integration has expanded its national workforce consulting work, leveraging its longstanding position as a key thought leader in the disability field.
Direct Support Workforce Solutions, led by ICI Director Amy Hewitt, will combine organizational analysis and in-depth training for direct support professionals (DSPs) into a comprehensive strategy to help organizations recruit, train, and keep their best direct support professionals, supervisors, and agency leaders.
“As states allocate federal emergency funds to address the staffing crisis that worsened during the COVID-19 pandemic, this offering represents an investment in the agency workforce that goes deeper than temporary solutions,” said Hewitt. “ICI has been conducting research, developing tools, and refining a data-driven consulting process for more than three decades. Direct Support Workforce Solutions brings our research, development and consulting expertise together to meet the needs of state agencies and individual organizations as they struggle to meet demand for long term services and supports and create effective policies and practices regarding the direct support workforce.”
ICI’s Barb Kleist and Kristin Dean will lead the operations of Direct Support Workforce Solutions, and Kleist serves as a lead consultant for the group, along with more than a dozen experts in disability policy and workforce development.
“We bring evidence-based practices and craft solutions that help organizations build stronger workforce strategies to address recruitment and retention,” Kleist said. “This effort brings our decades of experiences, resources, and tools into a single, accessible space.” Consulting services begins with a rigorous discovery process to gather data on an organization’s workforce, from hiring and retention policies and practices to overall workforce culture.
Conducting surveys, self-assessments, stakeholder interviews, focus groups, document reviews, and a communications audit, the team then analyzes the findings and develops an action plan. Data management, recruitment, retention, and policy strategies are then implemented in a framework unique to each organization’s capacity. Targeted services include consulting and coaching sessions, options for new products such as realistic job previews and public service announcements, a customized recruiting plan, employee training and development, and more.
Already at crisis levels, turnover and vacancy rates worsened when the pandemic began and remain in emergency status. Early in 2020, the Institute quickly partnered with the National Alliance for Direct Support Professionals to initiate the largest-ever survey of the direct support workforce as it navigated the global pandemic. That report, and subsequent follow-up reports, documented increases in already-high turnover rates, job stress, and risk that DSPs have taken on during this emergency, raising public awareness about the necessity of these professionals and advocating for higher wages and other benefits.
Almost half of DSPs leave their jobs within the first year, and most within the first six months. Vacancy rates remain high, and demand for services is growing fast, particularly as more people with disabilities move from congregate care facilities to community-based service options. Staff shortages affect the quality and availability of essential services for individuals with disabilities, and greatly determine whether those individuals will participate fully in their communities.
Amidst these dire national trends, ICI has a long track record of expertise in assisting people with disabilities and their families find and retain quality DSPs, and in elevating the skills and professionalism in the field as it evolves. Across nearly every U.S. state and several regions abroad, the Institute has provided technical assistance, training, evaluation, and consultation to government agencies and provider organizations. ICI researchers have authored and edited hundreds of publications, including textbooks, reports, magazines, briefs, and newsletters.
More than 90 peer-reviewed journal articles have been published since 2012, and DirectCourse, the premiere online training curriculum for direct support workforce developed by ICI with partner Elsevier, has trained millions of DSPs, improving the quality and stability of supports for people with disabilities.
Frontline Initiative, a newsletter covering issues important to DSPs and their supervisors, is produced by ICI and the National Alliance for Direct Support Professionals, a longtime partner.
“They have, over decades, provided the tools for advocacy and change that result in measurable solutions,” NADSP President Joe Macbeth said of ICI’s team. “Using their research-based methods, ICI supports organizations in developing effective strategies that address long-standing workforce challenges.”
People with disabilities and their families feel empowered by public programs allowing them to direct their own service dollars, but the complexities of the programs can be daunting and succession planning is critical.
In the first known study to explore the sustainability of self-directed public services across major life transitions, the Institute on Community Integration and Independent Support Services, Inc., Monticello, New York, surveyed 413 people, most of whom identified themselves as a “natural support,” or someone providing unpaid support to a person with disabilities who directs his or her public services.
“We’ve known satisfaction levels with self-direction is strong, but until now we didn’t have this kind of data to show policymakers. Now, we have the data,” said Alan Kulchinsky, founder of ISS.
“Who doesn’t like choice?” said Shari Serchuk, of Jericho, New York, pictured with her son, Ryan, who is autistic. Self-directed services allow Ryan, 26, and Shari, his representative, to choose the types of public services he needs and to hire and train his support staff, within certain guidelines. It’s an alternative to traditional agency-provided services, and its use is growing.
“We wouldn’t have the same quality of life” without the choice and control self-direction gives them, Shari said.
Just because it was an easy decision, however, doesn’t make it simple. Recordkeeping duties and dealing with staff issues that an agency in a typical arrangement would handle takes a big outlay of time for the support person, such as a parent. In the study, respondents cited paperwork, staffing, and adapting to changes in service rules as top challenges.
Beyond the immediate challenges, respondents also expressed concerns about passing their responsibilities on when they die or are otherwise no longer able to manage their roles. About 40 percent of respondents said siblings would not be available to provide supports.
“There was a lot of fear and uncertainty about the future, but also a lot of hope that things will work out even if we can’t see the solution today,” said Libby Hallas, co-director of the study and an ICI project coordinator.
Ryan and Shari are both understandably anxious about the longer-term future, but said their strong family bonds give them confidence.
“It would be a difficult adjustment to get used to, but I get along well with my family and they understand my needs,” Ryan said.
Some support people said they are already building a team approach to succession, creating a network of paid and unpaid support people to handle what used to be one parent’s role.
Shane Winkler, a self-direction coordinator for ISS, helps bridge some of the gaps for people with disabilities who no longer have parents supporting them. He and Kulchinsky are working to expand the duties, and corresponding hourly rates, of these professionals. They also point to the need for better housing options that can bring the principles of self-direction to a bigger swath of the population.
“Self-directed services have become a key component of the disability services landscape and represent both a cost-effective and an important component of maintaining an individual’s self-determination,” said Jennifer Hall-Lande, co-director of the study and an ICI researcher. “As the population ages, we must find ways to sustain these services across life transitions and the lifespan.”
One of Ryan’s sisters has indicated she would like to help, but Shari says it’s hard for anyone to understand the level of commitment required to replace a parent. Shari stayed at home when Ryan was in school, and is only now working part time.
“Whenever you think you have everything in place, things happen. Someone calls in sick or they can’t drive today. There always has to be a backup.”
The Institute on Community Integration will lead a Project of National Significance from the Administration on Community Living designed to increase independence of Minnesota’s youth and create pathways to post-secondary education and employment.
Under the five-year, $1.4 million award, the Institute will collaborate with Minnesota’s Departments of Employment and Economic Security, Education, and Human Services; three local education agencies; several community-based employment and self-advocacy organizations; the Minnesota Inclusive Higher Education Consortium, and Utah State University.
The project—A Community-Based Collaborative Transition Model for Minnesota Youth with Intellectual and Developmental Disabilities (IDD) —will use a number of collaborative approaches to engage diverse community stakeholders. The team will develop a tiered framework for youth with disabilities transitioning from high school to careers, higher education, and independent community living. The person-centered, inclusive, culturally responsive framework will be designed to address the economic and educational needs of Minnesota communities. The framework will be piloted in three transition programs, in the Minneapolis, Stearns-Benton, and Rosemount-Apple Valley-Eagan public school districts.
“Interest in this work from state, educational, and community agencies was quite high and exceeded our expectations,” said Renáta Tichá, principal investigator of the project. “The work will support the self-determination and empowerment of youth with IDD to pursue their life goals.”
Worker shortages in many areas of the economy, along with an increasing portion of jobs requiring post-secondary education, bring urgency to the project, said Brian Abery, co-principal investigator.
“This project provides us with the opportunity to replace one-size-fits-all transition services with an individualized, person-centered approach that increases the quality of life of young Minnesota adults with IDD.”
Rodney Sutherland at work, holding his Employee of the Month award.
Five evenings each week, Rodney Sutherland takes a taxi to his job cleaning administrative offices and breakrooms for drivers at the Duluth Transit Authority. He likes chatting with the drivers and office workers, and he really likes going out to eat with friends with the money he earns.
“My favorite taxi driver is Erica,” said Sutherland, who was born with Down syndrome and has some visual impairments. “I like being independent, and getting to work on my own.”
As employers struggle to fill vacant jobs and increasingly consider diversity and inclusion in their hiring practices, the theme for this year’s National Disability Employment Awareness Month is “America’s Recovery: Powered by Inclusion.” The observance honors the contributions of people with disabilities in the American workplace.
When Sutherland was a young child, his father worked at the DTA and often brought Sutherland to the transit center to enjoy the bustling atmosphere. Once he became an employee, he had to learn not only about janitorial work, but also about how to get along socially in the office. Even hiring a taxi—and alerting drivers when they take him to the wrong facility—are accomplishments that some of his family members never dreamed he’d achieve. After starting at just a few hours a week, Sutherland now works 20 hours and was named Employee of the Month earlier this year.
“Rodney’s professionalism has gone through the roof since he started this job in February,” said Casey Lozon, career and life coach manager at Udac, Inc., a disability service organization that is working to place people with disabilities in jobs in their communities.
For more than a decade after high school, Sutherland worked in the mailing and shredding room at Udac under Labor Department rules allowing contract work performed by people with disabilities to pay below the minimum wage. The goal was to provide jobs and training in a safe environment for people with disabilities, who could then use the experience as a stepping stone to paid employment in the community. In recent years, however, disability advocates have been calling for an end to subminimum wages, arguing that the work was not leading to good jobs.
But switching to competitive employment involves highly individualized training and lots of staff time. In Sutherland’s case, that meant learning proper cleaning procedures and how to take a taxi by himself, as well as soft skills, such as knocking first before entering offices and respecting when co-workers need to focus and can’t socialize. Once that investment is made, however, it keeps paying off.
“We started treating Rodney as a professional. Instead of him telling his career coach the things that he needed, we worked on having him communicate directly with the employer about supplies that he needs or vacation requests,” said Ann Dahl, Udac’s operations director. “Doing that eventually changed his view of what this job is all about, and he realized he needed to up his game. We gave him training and task lists, but then we backed off and let him do the job.”
Like many other service providers across the country, Udac had begun transitioning away from group contract work. After the pandemic forced an abrupt closure of its facility in early 2020, the transition became a hard stop, said Karen Herman, executive director at Udac.
“After conversations with the board of directors and with legislators, we concluded that 14c [the regulatory code allowing subminimum wages for people with disabilities] was not our future,” said Herman. “We closed programs and we started to rebuild. We are committed to the creation of community-based services and an organization that is a model for the future.”
As part of that rebuilding, Herman connected with ICI Director Amy Hewitt and Danielle Mahoehney, an ICI education program specialist with expertise in workforce development. Along with Don Lavin, a consultant in competitive integrated employment, the team provided support, planning, and guidance as Udac rebuilt its staff, gearing services to focus on finding and advancing careers, not just jobs, for people with disabilities.
“I don’t think we could have done this as well or with as much confidence without the support ICI provides,” Herman said. “Of course, no organization can make this kind of rapid change successfully without buy-in from the employees making it happen every day, so we brought back key members of our former team and invited them to help us fundamentally transform how we approach working with clients. The team’s excitement and dedication to this process is a testament to their belief in the work we are doing.”
Udac also transformed its senior program, emphasizing activities out in the community that go beyond tourist outings.
“Our senior program was very well respected and did great work, but when we asked ourselves, ‘If we were aging in the community and didn’t have Udac, what would we be doing?’ we realized we needed to be engaging more with other seniors and community programs, and so we’ve begun interacting with senior centers much more.”
For its competitive employment placements, Udac now has a roster of employers who are embracing workers with disabilities as part of their organizations. Among them: Aramark, Culver’s, EasyLiving Services, General Cleaning Corp., Grandma’s Restaurant, Loll Designs, Roufs Property Maintenance, Sammy’s Pizza and Deli Lakeside, Superior Nets, and Super One Foods Lakeside.
“Udac’s organizational transformation has expanded its competitive, integrated employment services and they’ve had some great success stories in the past few months,” said Mahoehney. “Change can be very difficult, but the staff is dedicated to making meaningful work happen for people with disabilities.”
The Institute on Community Integration has begun its move to the Masonic Institute for the Developing Brain (MIDB), ushering in a new era of collaboration across the University of Minnesota designed to advance brain health in support of each person’s journey as a valued community member throughout their lives.
ICI, which brings more than 35 years of disability research, advocacy, and education/training, joins researchers, clinicians, and specialists from the University’s Medical School, M Health Fairview, and the College of Education and Human Development at the new 116,000-square-foot building, 2025 East River Parkway, Minneapolis.
“As an organization, we actually outgrew our space in Pattee Hall in the early 1990s, and the opportunity to now have fully accessible space that encourages collaboration with colleagues and that lets us welcome community partners is the culmination of our collective work over decades to make life better for people with disabilities through our research and its influence on changing policy and practice,” said Amy Hewitt, director of ICI.
Named in recognition of a gift from Minnesota Masonic Charities, MIDB officially opens Nov. 1, offering collaborative interdisciplinary research, early neurobehavioral and mental health assessment, innovative targeted interventions, informed policy-making, compassionate advocacy, and community engagement and education.
“Learning about the different ways our colleagues think, and the context they bring to their work, will help us break down barriers and make our work more relevant to the community,” said Damian Fair, University of Minnesota Medical School Redleaf Endowed Co-Director, MIDB. “Once we begin digging into how we approach care for people with disabilities, we see some of the old labels pitting the medical and social models against each other are not accurate and that both approaches have already been coming together. The hope is that by breaking down walls and creating safe spaces to talk about different approaches, we’ll improve all of the ways we work for families navigating the critical issue of brain health.”
While ICI and the other occupants of the MIDB building will retain their existing names, organizational structures, and research interests, their proximity in the space is designed to foster new collaborations, share resources, and spur new research and service delivery approaches.
“Access is a hallmark of equity and inclusion, not only regarding access to space, but to resources, opportunities, information, and discoveries,” said Michael Rodriguez, CEHD dean. “ICI has long led the way in creating access, and through enhancing collaborations with the Medical School, we will expand that legacy with new energy in MIDB.”
MIDB will be composed of several independent research cores, including TeleOutreach, that will provide support and expertise in neurodevelopmental research, integrated data collection, and analytical and intervention services under one roof.
One collaboration already underway is the MIDB TeleOutreach Center, directed by ICI’s Jessica Simacek and Adele Dimian, associate director. The center was created under a philanthropic gift from the Richard M. Schulze Family Foundation, providing research, training, and technical assistance through innovative and secure technology to address barriers to care for children, youth, families, and professionals. Under a new $600,000, three-year grant from the U.S. Department of Health and Human Services, researchers from ICI and the Medical School’s Department of Pediatrics will conduct a large-scale, randomized control trial assessing intervention and diagnostic services delivered via the TeleOutreach Center to families awaiting formal autism spectrum disorder evaluation or intervention.
“The TeleOutreach Center is one of the early, exciting collaborations within MIDB,” said Simacek. “The physical space and technology are scaled up from what we have previously used to do this type of work, and it is already allowing us to welcome more trainees, fellows, students, community collaborators, and, ultimately, families, to be connected and engaged, regardless of where they are located.”
ICI’s Minnesota Leadership Education in Neurodevelopmental and Related Disabilities (MNLEND) Program is another existing ICI program that already has fostered deep connections across more than 16 academic disciplines at the University, Hewitt said. Each academic year, a cohort of MNLEND fellows comes together under funding from the U.S. Maternal & Child Health Bureau to develop knowledge, skills, and attitudes to make informed, committed action in the areas of neurodevelopmental and related disabilities.
Looking forward, Hewitt said, advances in the fields of both medical and social policy are critical to understand together.
“In the past we made assumptions about how clinicians, physicians, and bench scientists think and act, but we don’t really know,” said Hewitt. “They have the same ultimate goal we do, which is that we want people with disabilities to have good lives. Today’s clinical advances in holistic medicine are just one example of a whole new way of looking at our work. And if we don’t really know what’s going on at the clinical level, we can’t change policies and practices.”
Jennifer Hall-Lande, who leads ICI’s work in autism prevalence data and early intervention, serves on the MIDB executive council, along with Hewitt.
“I’ve been waiting my entire career for an opportunity like this to leverage the strengths of the social model of disability with the clinical side,” she said. “Disability is a natural part of the human continuum, and I bring that perspective to my clinical work. It’s up to us to take this opportunity and learn from each other and grow and innovate.”
Future collaborations leveraging the diverse expertise that will inhabit MIDB are still to be created, both Hewitt and Fair said.
“What struck me as we toured the building was how a family coming through the clinic door could potentially encounter our TIES resources for parents of a child with a more significant disability, and they may want to begin a path towards educating their child in a more inclusive setting in their local school, or have started on that path and need help,” said Kristin Liu, principal investigator for the TIES Center, the national technical assistance center on inclusive policies and practices in K-8 schools.
“The NCEO team looks forward to discussing the needs and characteristics of children with autism and other disabilities with clinicians and families as we strive to make assessments used for accountability and other purposes more accessible,” Lazarus said.
In a December 2020 CEHD Connect article, former Dean Jean Quam predicted that MIDB would be one of the most exciting partnerships in the history of the college.
“It’s unique that a college of education would partner with a medical school and that we would look for strengths that we have and the things we have in common,” Quam said, adding that ICI’s history of interdisciplinary outreach would serve as a model for collaboration at the new institute.
“Viewing disability as a unique difference rather than a problem to be solved is a foundational aspect of ICI,” Hewitt said. “Our approach to supporting people with developmental and neurodevelopmental disabilities throughout their lives will inform the work of MIDB and create more inclusive communities for many years to come.”
On September 13, the National Alliance for Direct Support Professionals (NADSP) presented the John F. Kennedy, Jr. Award for Direct Support Workforce Advocacy & Leadership to Jerry Smith, ICI’s marketing and business development manager, who has directed dozens of films about community living for people with disabilities. In a statement coinciding with the organization’s annual conference, NADSP President and Chief Executive Officer Joseph Macbeth evoked the Kennedy family’s legacy of supporting disability issues through informed public policies and strategies that strengthen the role of direct support workers.
“We name this prestigious award after our founder, John F. Kennedy, Jr., and bestow it upon those who have dedicated their careers to upholding this noble vision,” Macbeth said.
Smith’s documentary and educational media projects have explored media bias in mainstream coverage of disability issues, created awareness about autism for diverse communities, chronicled DSPs’ critical contributions to people with disabilities in the aftermath of Hurricane Katrina, and told countless other stories that have led to greater inclusion of people with disabilities in their communities.
