Researcher and former ICI staff member John Bielinski is also an avid hiker.
From evaluating how the COVID-19 pandemic affected learning to advocating for the most efficient dyslexia screening tools, John Bielinski continues to innovate in the student assessment field.
This week, Bielinski and colleague Rachel Brown, both of education technology company Renaissance, presented Demystifying Dyslexia: The History, Research, and Best Practices for Supporting All Students, a webinar for teachers, school leaders, psychologists, and other professionals.
“The term ‘dyslexia’ has been around a long time, and identifying students with learning disabilities is what our assessments are designed to do, but in this forum, we wanted to talk to educators and other school personnel about the latest information on screening,” said Bielinski, who early in his career spent five years at the National Center on Educational Outcomes as a graduate research assistant and then a research associate. “We’re raising the question of whether additional dyslexia screening tests are necessary, given the other screening schools do. Testing should be as brief and unobtrusive as possible.”
This point may be particularly salient today, as students come back to the classroom after significant pandemic disruptions in recent years. Bielinski and his team led a pair of studies comparing student performance in the spring of 2020 and 2021 to previous years, finding that reading and math scores dipped significantly.
“John was a critical part of the NCEO staff,” said Martha Thurlow, senior research associate at NCEO, a designated center within the Institute on Community Integration. “He was always willing to explain his procedures and help us learn how assessments could be developed to best meet the needs of students with disabilities.”
He continued working in the field after leaving NCEO in 2002, and joined FastBridge Learning, a startup created by Ted Christ and colleagues in the Department of Educational Psychology, in 2018. FastBridge has since been acquired, most recently by Renaissance. In addition to his current career interests, he said, he rarely passes up an opportunity to hike a trail.
Sheryl Lazarus, now NCEO’s director, was a graduate research assistant when Bielinski was working at the organization.
“I appreciated John’s patience and willingness to answer my many questions about assessments and measurement,” she said.
At NCEO, Bielinski developed a career-long interest in helping students who are struggling to learn.
“I am particularly interested in the many students who aren’t succeeding, but who haven’t qualified for special services,” he said. “What can we do on the assessment side to identify them and do something useful to support their learning needs?”
If acceptance is a path to peace, Norway House in Minneapolis moves the community a step closer this month as it hosts woven from life itself, an Art for All exhibit celebrating disability pride and pride in other identities.
The exhibition, open now through Oct. 30 at The Galleri at Norway House, 913 E. Franklin Ave., features works by local and Norwegian artists, including photography, paintings, fiber art, documentary film, and music.
The collaboration between ICI’s Art for All: The Stephanie Evelo Program for Art Inclusion, and the Minnesota Peace Initiative at Norway House in the Ventura Village neighborhood of Minneapolis offers a unique voice in depicting peace and coexistence, organizers said.
Challenging artists to contribute works depicting an aspect of peace resulted in a show that celebrates acceptance in the pursuit of disability justice, said Max Stevenson, director of exhibitions at Norway House.
“The artists are reflecting an inner peace,” he said. “It’s as if they are saying, ‘I’ve accepted myself and now the community accepts me as I bring awareness to my story and my art.’”
Nik Fernholz, program manager for Art for All, said the exhibit fulfills the program’s ongoing mission to bring the work of artists with disabilities into new communities.
“We are thrilled to have our permanent gallery at the Masonic Institute for the Developing Brain , but it’s also important to get out into communities to promote disability as a strength to be celebrated in the art world,” said Fernholz. “We connect with one another as we weave these identities. So that is woven from life itself – the unique identities that make up who we are as individuals, and the unique set of artists we’ve been able to curate.”
Featured artists include David “Mack” McDonnell-Forney (landscape photography), Janette Tafoya Giles (watercolor), and Ingrid Hansen (watercolor, others) of Minnesota and Frode Felipe Schjelderup of Stavanger, Norway, who incorporates heavy metal music and other influences into his drawings and paintings. Work by documentarian Heidi Benedict Sundby and musician Bjørn Hatterud, both of Oslo, are also included.
A new acquisition for the Art for All permanent collection, a painting titled ”Little Waterfall” by William Britt, is also on display.
“It’s been fun to see people’s reactions to the multimedia aspects of the exhibit,” Stevenson said. “People sit down and get engrossed in this film by an artist who documents life with her child with disabilities, and then start conversations about what it must be like to have this whole new world view quite unexpectedly.
“And then to have Frode’s work, with its connection to heavy metal music, which is very popular in Norway, is just great,” he said.
During the exhibit run, Norway House itself will celebrate the grand opening of its Innovation + Culture Center from 10 a.m. to 2 p.m. on October 15.
Direct support professional Sheila Clark with Greg at the store where he works. They appear on the cover of Frontline Initiative, a magazine published by the College’s Institute on Community Integration and the National Alliance for Direct Support Professionals.
The latest edition of Frontline Initiativecelebrates lesser-heard voices among direct support professionals. The issue — now also available in Spanish — features authors who are DSPs from diverse ethnic, racial, cultural, and other backgrounds.
“This issue was intended to start needed conversations,” FI co-editor Julie Kramme said in a video introduction to the issue. “It’s about listening, and broadening our understanding.”
Kramme, along with ICI researchers Julie Bershadsky and Sandy Pettingell, wrote an article in the issue that details the Institute’s studies, in partnership with the National Alliance for Direct Support Professionals, that found racial disparities in DSP wages. The study also asked about working hours and conditions at critical points during the pandemic.
Other authors include Karen DeBartolo, a DSP who is deaf and who supports someone who is also deaf.
“I felt honored to be part of the issue,” DeBartolo said. “[I wanted to paint] the real picture of working as a DSP, not making it sound like our job is easy and a bed of flowers. People will read that article and they will know what a DSP stands for and how hard our jobs are.”
In another article, authors Nicole Dama and John Raffaele highlighted recent webinars about systemic racism, demographics of the DSP workforce and the implications during COVID-19, and practical steps and conversations about race in relation to the DSP field.
In A Church Home for Willie, author John Swisher writes about his months-long effort to find a church that was a good fit for the person he supported.
That interplay between honoring the culture and background of both a DSP and the person receiving support was a strong theme of the issue, Kramme said. It isn’t about trying to bring a blank slate to work, but about bringing who you are to the relationship and understanding how that affects the professional relationship.
“This issue was really years in the making,” Kramme said. “The first time we started asking DSPs about what they wanted to address, there were people mentioning the importance of intercultural supports. Many DSPs speak languages and have cultural practices that differ from those of the people they support. These can be both barriers and facilitators to high-quality supports.”
Co-editor Chet Tschetter agreed, and both editors made it clear there are still many more articles to tackle on the subject.
“We feel like we’ve only touched the surface,” Tschetter said. “With everything that’s been going on in our society, we wanted to bring to light the rich diversity of the people working in this field. There are a lot more stories to tell, and we’re hoping people will feel comfortable telling them in future issues. This issue is a door-opener, so we can keep going deeper.”
Jack Bird makes candles in his hometown of Auckland, New Zealand. His story is one of many in the new issue of Impact, which provides a global context on the transition from school to adulthood for young people with intellectual, developmental, and other disabilities.
The latest issue of Impact places the critical period of transition from school to adulthood in a global context.
Articles include a call for educators around the world to link transition programs for youth with intellectual, developmental, and other disabilities (IDD) more closely to inclusive, real-world situations. People with IDD and their families tell their personal transition stories, and successful programs around the world share how they support young people as they move into the adult years.
“This issue brings to the forefront the different philosophies and approaches to secondary transition of youth with disabilities across different countries, broadening our perspective on this important life milestone,” Tichá said. “Our collective work in the field played key roles in informing this issue.”
Abery, Tichá, and Šiška, an associate professor at Charles University and University of West Bohemia, Czech Republic, also are collaborating on U.S. and Czech transition grants. Šiška is a visiting Fulbright-Masaryk research scholar at the Institute.
Working internationally brings an additional dimension to understanding secondary transition in the context of different cultures, practices, and policies. The group recently visited Japan as part of a trip funded by the U.S. Embassy in Tokyo that was focused on the transition to employment for people with disabilities. They found some common points of emphasis, such as work-based learning, but also key differences. A greater emphasis in Japan on collaboration and teamwork is a promising practice to try in the United States, for example.
“We wanted to show there are multiple ways of approaching transition, and that we can learn from one another,” said Stancliffe, an emeritus professor from the University of Sydney [Australia] who is a senior research associate at the Institute and an issue editor for the Feature Issue on Transition in a Global Context for People with Intellectual, Developmental, and Other Disabilities.
For 35 years, Impact has brought together editors and authors from diverse sectors of the disability field to bring perspective to research, share practice strategies, and tell the personal stories of people with intellectual and developmental disabilities and their families.
Milena Bates (MNLEND 2021-22), co-founder of the Minnesota Autistic Alliance, is recruiting self-advocates for new projects supported by a grant from the Minnesota Department of Human Services.
Cultivate, a 10-hour online self-advocacy course covering how to identify needs, navigate barriers, and understand intersectionality (among other topics), begins August 23. It is designed for and by neurodivergent self-advocates. Lattice is a partnering program that will connect a team of three partners best suited to the support needs of a self-advocate. The group also is recruiting writers for an accessible, digital resource database.
Bates and Jules Edwards (MNLEND 2020-21) are leading the Alliance. The group became a non-profit organization last year after beginning as a social media group in 2018.
Edwards is also a gardener, and the course and partnering program names are meant to evoke a sense of nurturing and supported growth.
“Our goal with Lattice is to create a new version of the support people have been getting in our Facebook group. It’s a little like mentoring, but a more interwoven support from multiple sources, rather than the power dynamic of a single mentor,” Bates said. “With the database, we’re trying to push the limits of accessibility, and that’s a big challenge, we’re finding.”
As a MNLEND fellow, Bates helped conduct a literature review that was part of the Institute’s contribution to a multi-year, multi-university curriculum for medical professionals working with patients with disabilities. She’s now advising a separate team that is developing a conference for medical professionals on a similar topic to be held early next year.
“All of this work is about creating more accessibility and more understanding around neurodivergence,” Bates said. “I would love more professionals and others to know about the social model of disability.” The model presents disability not as a problem to be solved for an individual but as a societal challenge to remove barriers to full participation.
Mary Hauff testifying at the Minnesota legislature in 2022.
Mary Hauff recently received the Exceptional Advocate award from the Minnesota Council on Disability, recognizing her contributions to building momentum for inclusive higher education in the state.
Hauff is part of a parent-led collaborative group called the Minnesota Inclusive Higher Education Consortium (MIHEC). The Institute is the host organization for MIHEC, which includes state and local education agencies, students, advocates, legislators, and others interested in expanding postsecondary opportunities for students with intellectual disability (ID).
Hauff wrote the legislation for the Inclusive Higher Education Act, which earlier this year advanced through the Minnesota House of Representatives and was included in the Higher Education Conference Committee report. It would have established a technical assistance center with public information about higher education options for people with ID, provided expertise and support for faculty, and established grants for other initiatives at public institutions of higher education in the state.
The full Senate did not vote on the measure by the deadline for the regular legislative session, but the bill would not have advanced so far without Hauff’s dedication and passion, said Julia Burkstaller of The Arc Minnesota, who nominated Hauff for the award.
“We would reach a brick wall, and she would still be trying to find a way around it,” Burkstaller said of Hauff’s efforts in building awareness about the legislation. “We met multiple barriers, but she kept asking questions until we found a path forward and, ultimately, the bill made it into the final committee report. That was a stamp of approval from our bipartisan legislative leaders in higher education, which puts us in a strong position for the next session.”
Meanwhile, Hauff and the MIHEC team are moving forward with a series of learning community events. The next event, on Sept. 20, will feature Burkstaller and Dupree Edwards, a teaching artist and member of the Minnesota Governor’s Council on Developmental Disabilities. They will share their advocacy experiences and offer insights for getting students, parents, educators, and faculty involved in inclusive higher education advocacy. Register for that event here. In October, Hauff will be part of a panel discussing state policy and partnership strategies at the State of the Art Conference on Inclusive Postsecondary Education and Individuals with Intellectual Disability at Syracuse University. A Nov. 15 learning community event is also being planned.
“We believe the bill would have passed if it was brought to a Senate vote,” Hauff said. “It was a huge effort to just get it in the conference committee report, but the work is not done. We are focusing on this positive momentum and the added awareness it brings to our efforts and look forward to our upcoming fall events to keep inclusive higher education a priority in our state.”
The National Center on Educational Outcomes (NCEO) at the Institute on Community Integration, which provides national leadership on the inclusion of students with disabilities, English learners, and English learners with disabilities in assessments, recently issued a primer for new state special education directors as they work to ensure students with disabilities participate in assessments.
“State special directors play an important role in ensuring that students with disabilities are appropriately included in assessments, and directors who are new to this role need to be up to speed quickly,” said Sheryl Lazarus, director of NCEO.
“Even though the Individuals with Disabilities Education Act (IDEA) requires that all students be included in all state- and district-wide assessments, some students with disabilities are still excluded. This often happens with district tests used to measure learning loss due to COVID-19, which frequently lack needed accommodations, such as availability in braille, or alternate assessments designed for students with significant cognitive disabilities. These are real challenges,” Lazarus said. “NCEO continues to be very engaged with helping states, districts, vendors, teachers, parents, and others better understand the law and that they need to be including all students with disabilities in assessments and thinking through how best to provide accommodations and alternate assessments.”
NCEO provides a rich set of resources for state education agency staff, school leaders, parents, and educators at all levels on assessment-related topics. The Center played host to Measuring What Students with Disabilities Know and Can Do Using Interim Assessments, a forum for states,last year. A back-to-school FAQ about testing students with disabilities and a brief covering alternate interim assessments for students with the most significant cognitive disabilities are available, and a school leader series, created in partnership with the Council of Chief State School Officers is available here. The series covers the inclusion of students with disabilities in academic instruction and assessments.
A Check & Connect mentor and student in conversation.
After a 75 percent drop in school absences and a 62 percent decline in suspensions last school year among students enrolled in the Institute’s Check & Connect intervention program, commissioners in St. Louis County recently expanded the county’s roster of program mentors, from 42 to 47. In the upcoming school year, about 1,000 students in 33 schools will be served by Check & Connect.
Check & Connect is an evidence-based intervention that works with K-12 students who show warning signs of disengagement with school or dropping out. Mentors develop a supportive relationship with each student in the program, and monitor attendance, behavior, and grades.
“The success of the program last school year has really been energizing,” said Jana Ferguson, the University of Minnesota program coordinator for Check & Connect in St. Louis County. “The County and the individual schools have really allowed caseloads to be an appropriate size, giving mentors the chance to intervene and head off absences and behavior and other issues before they become problems.”
The longstanding program is also seeing strong results in a broad mix of other communities, including elsewhere in Minnesota and in Central Texas.
Communities in Schools of Central Texas, a nonprofit organization supporting districts in and around Austin, currently uses Check & Connect in two of its districts, with plans to expand to its entire region, about 100 schools, over 5 years.
“Our organization was already focused on the core components of a caring adult and regular check-ins, so in researching tools, Check & Connect came up as aligning well with our mission,” said Karen Gonzalez, program officer for Communities in Schools. “After creating buy-in from staff members, they’ve been engaged and have been able to make it their own. The reality is that some students, after experiencing all the effects of the pandemic, need more attention and customized plans for their academic journey, and Check & Connect provides that structure.”
Meanwhile, a research project with Central Lakes College to adapt the program to serve community college students is also showing promise. Over a 2-year period, students receiving services earned more credit hours and stayed enrolled at higher rates than students not enrolled in services.
“Check & Connect has been around for more than 30 years now, so it’s not the latest trend, but it’s gratifying to see this type of success with schools in their early stages of implementation,” said Eileen Klemm, Check & Connect program manager. “We’re now beginning to see districts implementing the program with fidelity on a very wide scale and it’s working. It’s very powerful to see what can happen when one adult in a student’s life has the right support to be there fully for a student.”
The ADA fellows at the University of Minnesota in 2017.
Navigating war, pandemic, persistent ableism, or a combination of all three, participants in the ADA Anniversary Fellowship Program in Inclusive Education continue to work for global inclusion, five years after their University of Minnesota experience.
In 2017, the Institute on Community Integration and the Humphrey School of Public Affairs collaborated with Arizona State University to welcome 28 fellows to the six-week intensive fellowship. The fellows, 20 of whom completed their experiences in Minnesota, observed and formed connections with local organizations working for more inclusive classrooms. The program was led by ICI’s Renáta Tichá and Brian Abery, co-directors of the Global Resource Center for Inclusive Education.
During the fellowship, Arman Assanbayev of Kazakhstan worked with Lionsgate Academy, a Minnesota public charter school that offers a transition program for students ages 18 to 21. Today, he’s working with USAID, the international development agency, to create a transition plan in Kazakhstan that emphasizes practical job skills that lead more quickly to competitive jobs or postsecondary education.
“We are developing a roadmap for policymakers to support youth and facilitate meaningful employment or education,” he said. “For youth here, it’s hard to remain in school without money, so we need to shorten the education process and give students skills that are applicable in the labor market.”
In Ukraine, meanwhile, several fellows continue to pursue inclusive education as the Russian invasion continues. In March, Tichá invited former ADA fellow Sergiy Sydoriv to speak at a live and virtual forum to share experiences and strategies for supporting the people of Ukraine, particularly those with disabilities, during the war. Sydoriv and Valentyna Malanchiy, another ADA fellow, have also been collaborating on a forthcoming issue of Impact that explores global issues in transition from secondary school for people with disabilities.
Following the fellowship, Sydoriv helped form a network of more than 2,000 educators, students, parents, non-governmental agency officials, and government officials, all sharing information on inclusive education. In 2018, legislation in Ukraine formally recognized the rights of students with disabilities for the first time. He then participated in a 2019 U.S. embassy grant supporting inclusive education, where he incorporated learnings from the ADA fellowship, and he also has collaborated on other projects with Abery and Tichá.
“We felt as though we were bringing tools to our country that had been tested and proven,” he said. “The ADA has been around a long time and this made us confident to bring back something that wasn’t just something new to try.”
Now, with war in his country, he is teaching education classes online for students who have internet connections.
“At the beginning of the invasion, some people thought Ukraine wouldn’t last a week, but Ukraine did not collapse. We are fighting. I am in the western part of the country and we aren’t as influenced by the fighting, but it’s not good. We are still holding, and I’ve trained my daughter to take the emergency backpacks to the cellar if the sirens go off. I have colleagues elsewhere who are getting shelled constantly,” he said. “We’ve been teaching online since COVID-19 began, and have gotten better with Zoom, Webex, Google Meet and other tools, but a lot of students have psychological problems from all the stress.”
Malanchiy, who worked with Abery and Tichá on building the educator network following the fellowship, said the partnerships have been invaluable as the country survives not only the changes in education policy but all of the dramatic changes of pandemic and war. She is now a school administrator in the western region of Ukraine and served as a consultant to a new national education platform for students in grades 5 to 11, making suggestions for accessibility for students with disabilities.
“The fellowship changed my career a lot,” she said. “That was the year I went from being a teacher to a vice principal, so my responsibilities changed, and then we had significant education reform in Ukraine.”
She said the number of inclusive schools in her country has grown substantially in the last few years, but because of the war she believes it could be a decade before Ukraine completely rebuilds.
“When the war started, they asked us to reduce teacher salaries as much as possible to save money for the war. And we are trying to preserve computers and other learning materials because we know we won’t be able to replace them.”
Iryna Kutsyna, also of Ukraine, was forced to flee to Poland due to the war.
“We survived all the shelling and lived in occupation for more than a month, and then left the city of Kherson through Crimea, North Ossentia, the Caucasus Mountains, and Georgia, then to Poland,” she wrote in an email. “I now work remotely at the Swedish-Ukrainian Academy. Thanks to grants and the Academy’s resources, we give scholarships to women with disabilities, those who have suffered gender-based violence, or people living in difficult conditions, including refugees and war veterans.”
Asked to think about where things will be five years in the future, she said it is very difficult to know.
“We have lost everything we had gained over the years,” she wrote. “We do not know what will happen to us in a month and where we will be. Now, five years is a long time. I do not think of such things.”
In March, Kamila Rollan was appointed to the Presidential Council for Youth Policy by Erlan Karin, the State Secretary of Kazakhstan.
Rollan is now a third-year PhD student at the University of Cambridge in the United Kingdom.
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 India, Kshama Kakade Kaushik continues to work as a social worker at Rajasthan Mahila Kalyan Mandal Sanstha, a non-governmental organization dedicated to the inclusion of people with disabilities in their communities. She is working on social justice initiatives in rural areas, and recently presented a paper that explores how parents of children with intellectual disability are coping with the COVID-19 pandemic.
In India, Amvalika Senapati is deputy director for advocacy in the Disability Law Unit of Shishu Sarothi, a not-for-profit organization in Guwahati, Assam. She has led a number of public awareness campaigns since the 2017 U.N. Convention of the Rights of Persons with Disabilities. She also led the Accessible India Campaign, a flagship program of the country’s Ministry of Social Justice & Empowerment, and, since 2018, has served as an advisory member for the Assam State Commissioner for Persons with Disabilities, among other roles.
“I have also been associated with Shubha Chandrashekhar, another ADA fellow from New Delhi, who has initiated a certificate course, Inclusion: The Way Forward, in collaboration with ICI,” she said. “The fellowship afforded me a great opportunity to see and learn about new advocacy approaches and deepened my understanding. I see pockets of great work on disability inclusion happening across the country and beyond, but also realize that this is a drop in the ocean. Each one of us is evolving with every new experience and we have all reached different milestones on the road to full inclusion, but I definitely know that we are on the right track, and with time, we will all get there.”
Two years after creating the largest survey to date of direct support professionals, the Institute on Community Integration and the National Alliance for Direct Support Professionals recently launched an expanded survey that will explore how technology has changed the field during the pandemic.
The new survey also asks DSPs and supervisors about their hours worked, changes to their wages, how their mental health has been affected by the pandemic, and whether the daily routines of the people they support are getting back to pre-pandemic levels, among other questions. This is the fourth survey in a series that has uncovered racial disparities in DSP wages and hours, revealed DSPs having to pay out of pocket for their own protective equipment, and documented the impact of the pandemic on staff turnover rates that were already at crisis levels.
“The ramifications of COVID-19 on the direct support workforce are not over and are still causing havoc for people with disabilities and community service providers,” said ICI Director Amy Hewitt. “Our stakeholders and advisers have been using our survey data in their policy advocacy, and they wanted more.”
By taking the survey, DSPs can play a direct role in shaping public policy and bringing attention to the dire need for better pay and working conditions in the field, Hewitt said. “The strong response rates to our previous surveys indicate that these professionals want to be heard.”
Designing the survey with ICI’s national partners within the Research and Training Center on Community Living revealed a desire to not only compare the effects of the pandemic on the profession over time, but to also explore what’s different today, said Sandra Pettingell, an ICI research associate with more than 20 years of experience in large-scale, longitudinal data sets.
“As we consulted our partners, the question of technology came up. When you think about the pandemic, everything moved online, so we wanted to look at how that affected the work that DSPs do,” Pettingell said. “We wondered specifically what kinds of technology people with disabilities are using, whether DSPs are comfortable with it themselves, and what happens if it breaks?”
Hesitancy about the COVID-19 vaccine is also covered on the survey, she said.
“When we asked about that last time, vaccine mandates were just starting, so it will be interesting to see what the vaccination rates are now.”
About 10,000 direct support workers participated in the initial survey in 2020. In addition to the survey, ICI has produced public service announcements urging DSPs to get vaccinated to protect themselves and those they support. The PSA series, It’s Up to You, was also created with several partners, including NADSP.
Asked whether his visual art is influenced by well-known painters, Avery Hunter doesn’t hesitate.
“Absolutely,” Hunter said recently while preparing for his first solo exhibit,Finding Myself in Color, running July 7 – September 9 at the Brenden-Mann Community Center, Masonic Institute for the Developing Brain, 2025 E. River Parkway. Hunter will discuss his art and advocacy at 4 p.m. on July 7, with a reception to follow from 5 p.m. to 7 p.m. that is free and open to the community. The exhibition is part of Art for All, the Stephanie Evelo Program for Art Inclusion at the Institute on Community Integration.
It isn’t necessarily Vincent van Gogh’s artistic style that captured Hunter’s admiration, but that he created timeless works of art while living with mental illness. “In those dark times, to be able to produce Starry Night. To have the ability to see all that depth of color and the layers involved in it,” Hunter said. “Also, Jackson Pollock, for the use of color and the freedom of expression to just put the paint on the canvas. It’s really interesting how he looked at the world. I think he said something about painting as self-discovery. I feel the more I paint, the more I discover about myself.”
That Hunter is drawn to such seemingly different artists – Van Gogh with his deliberate brushstrokes and Pollock with his abstract “drip” technique – is all the more intriguing when one considers the work of Lior Shamir.
Writing in the journal Leonardo a decade ago, Shamir, a computer scientist interested in artificial intelligence, shared results of a digital analysis of works of art by nine famous painters, including Van Gogh, Pollock, Kandinsky, Dali, and Monet. Examining minute details of the paintings rather than the composition, the analysis found that Pollock’s work shared far more artistic similarities with Van Gogh than with the others.
In some ways, Hunter’s work echoes both artists. The exhibit will feature abstract works as well as self-portraits. During the July 7 artist talk, Hunter will discuss his work and his life as a transgender man living with autism, attention deficit/hyperactivity disorder, schizoaffective disorder, and rheumatoid arthritis.
“I have been driven to accomplish distinct aesthetics in my work through the levels of psychosis that I experience,” he said. “The amount of color in my work speaks to the freedom I feel in expressing my voice creatively, and the subject matter I present in quite a few art pieces advocates for those who need to be represented without stigmas, such as the LGBTQ+ community and people with disabilities. Yet, there is more to one’s identity than their belonging in these communities. Therefore, I continue to explore what it means to be human in my work.”
Identity advocacy was a critical goal in selecting artists for the 2022 exhibition season, said Nik Fernholz, program manager for Art for All.
“The more I thought about disability pride, the more I realized much of society still views the word itself as a negative, but we have an opportunity to see disability as a strength,” Fernholz said. “It was important to curate artists who incorporate their identities into their work. Avery’s identities fit well with Art for All’s year of celebrating disability pride. In art, beauty is often seen through color or characters, but there is beauty in the message, too.”
Hunter, who grew up in England and came to Minnesota as a young adult, said he hopes audiences will see the nuance in his journey as an artist. Undiagnosed as a child, his artwork has transformed into more colorful pieces today, mirroring his journey to a healthier place, he said. But unlike Shamir’s digital analysis, this switch isn’t binary. There are complex layers of color in his work, and in his disabilities and identities today.
“People have said to me they don’t think I look autistic, or that I don’t seem like someone who has hallucinations. I want people to see that there are struggles beyond what people can see, and to know there are so many aspects to identity beyond disability.”
Supporting people with intellectual and/or developmental disabilities (IDD) to move from large, state-run institutions to individualized community settings has been a foundational aim of the Institute on Community Integration for more than 30 years. With the end game in sight, what is left to be done?
A public forum on June 23, 2022 discussed stark differences among states in their approaches to ending institutional care, challenges threatening the progress of deinstitutionalization, research documenting how the lives of people with IDD changed after moving into community settings, and policy recommendations for supporting all individuals with IDD in home and community settings.
ICI’s Sheryl Larson presented her recent Policy Research Brief,Are Large Institutions for People with Intellectual and Developmental Disabilities a Thing of the Past?
“A lot of states have already figured this out, including 17 that have completely closed their institutions,” said Larson. “So, what do we have to do now so we don’t forget the people who still live in institutions? How do we make sure we aren’t forgetting them?”
Families play a critical role, Larson said, but also face daunting challenges today because of the shortage of caregiving and direct support professionals, made worse by the global pandemic.
“Since 1998, we’ve more than doubled the number of people receiving publicly funded supports while living with a family member,” Larson said. “Very few people have entered large, state-run institutions since then, but we must shore up the workforce supporting those who are living in the community.”
Mary Sowers, executive director of the National Association of State Directors of Developmental Disabilities Services, and Celia Feinstein, former executive director of Temple University’s Institute on Disabilities, discussed the implications of the research for the field at the event.
Larson, director of the Residential Information Systems Project (RISP), is continuing a line of research on residential services and deinstitutionalization for people with IDD that was started in the 1970s by founding ICI Director Robert Bruininks and Charlie Lakin, former director of the Research and Training Center on Community Living (RTC/CL). The RTC/CL provides research, training, and technical assistance focused on supporting people with IDD to fully participate in their communities of choice.
RISP is a federally designated Longitudinal Data Project of National Significance for the Administration on Community Living, part of the U.S. Department of Health and Human Services. Earlier this year, ICI published a RISP report examining the living arrangements of people with IDD from 1977 to 2018, which projected the number of people with IDD living in large, state-run institutions could approach zero by 2025.
“ICI has partnered with the disability community for decades and many institutions are now gone, so it’s a little bit of a celebration, but we are not done,” said Larson. “We cannot forget the people who are still living in congregate settings. We’ve got 30 years of research backing up the assertion that people have better lives when they live in settings where they can make choices about how they live.”
ICI’s MNLEND 2021-22 cohort with their instructors. As can be seen on the screen above the in-person group, some participated virtually.
From developing more inclusive 4-H programs to identifying best practices in teaching medical and dental students about intellectual and developmental disabilities (IDD), the Institute on Community Integration’s 2021-22 Minnesota Leadership Education in Neurodevelopmental and Related Disabilities (MNLEND) program fellows made significant contributions to the field. On May 19, ICI celebrated their accomplishments at the McNamara Alumni Center on the University of Minnesota’s Minneapolis campus.
“We grew and learned from one another,” said ICI Director Amy Hewitt, addressing the 33 newest MNLEND alumni online and at McNamara. “We have a better understanding of the various professional roles in supporting individuals with neurological and developmental disabilities and greater clarity on the truths experienced by people with disabilities and their families. We understand better the disparities and disproportionality experienced by people with disabilities who have intersecting identities based on race, gender, ethnicity, and sexual orientation. Most import, we all learned together, and are better people because we did.”
As part of the MNLEND program, each fellow selects a project of importance to the disability community. Projects typically build on and contribute to ICI’s ongoing work in the field, so that over time, the work has lasting value and cumulative effects. In addition to ICI, MNLEND partners include the College of Education + Human Development, the School of Medicine’s Pediatrics Department, and the College of Liberal Arts’ Department of Speech Language and Hearing Services.
“Some fellows did research, some worked on community-based projects. All of them made a significant contribution through their work,” said ICI’s Jennifer Hall-Lande, who serves as a MNLEND mentor. The program is funded by the U.S. Maternal and Child Health Bureau.
Several fellows this year worked on Fostering Future Leaders, a pilot project serving undergraduate students who are first-generation college students, low income, or from underrepresented communities. The project helps these students explore career and graduate school opportunities in the maternal and child health disciplines. Another created a survey to study how Somali families of children with disabilities experience services for transitioning out of high school.
Others promoted public awareness campaigns about the early signs of autism, created community discussions about disability advocacy, and translated COVID-19 vaccine information into several languages.
Partnering with ICI’s TeleOutreach Center and other partners, fellow Cari Michaels is helping create a five-week postpartum education and support program for Somali parents to promote mental wellbeing and self-care for moms and newborns.
In the alumni keynote address, Sheyhan Gelle (MNLEND 2020-21) urged the cohort to be relentless in pursuing their passions. Gelle, who has worked in a variety of social service roles, has a son with autism.
“After you leave here today, remember you are in a position to create inclusive spaces,” she said. “Think of my son, and the many other children who will be impacted by the decisions you make.”
A new podcast aims to support professionals who work with young children and their families by providing accessible information about child development and family relationships. The podcast, entitled Building Family Resiliency: Community Voices, Community Perspectives, is the result of a collaborative effort by Deborah Ottman, professional development coordinator at CEED, and Jennifer Hall-Lande, PhD, research associate at the Institute on Community Integration and CDC Act Early Ambassador to Minnesota. The podcast grew out of a desire to address the additional stressors that Minnesota families have faced during the COVID-19 pandemic. These stressors, say Ottman and Hall-Lande, may impact the ability of families to build resiliency.
Jennifer Hall-Lande, PhD
Building Family Resiliency was funded by the Centers for Disease Control and Prevention (CDC) as part of their Learn the Signs Act Early initiative, which encourages families, communities, and organizations to screen children for potential developmental delays early on. Learn the Signs Act Early also offers a wealth of free developmental tools for parents and professionals.
For each episode of the podcast, Ottman interviewed one or more experts or helping professionals from different communities and early childhood fields. Listeners will hear from these guests about different facets of resiliency, from the science of brain development to self-care for child care providers. They will learn about what resiliency can look like across the richly diverse cultures and communities that make up our state. And they will gain information on how adults can best support the healthy development of the children in their lives.
“It was a privilege to sit down with researchers and professionals from different fields, all of whom have children’s wellbeing at heart, and talk about the concept of resiliency,” says Ottman. “My hope is that listeners will find the podcast format to be an easy, enjoyable way to access the information that our experts shared.”
“We’re really excited to share this new resource with early childhood practitioners as well as parents,” says Hall-Lande. “I was delighted to be interviewed for Episode 4, which relates to my work on Learn the Signs Act Early. In that episode, we talk about the importance of screening for developmental delays such as signs of autism spectrum disorder. The science shows that the earlier we catch those signs and intervene with kids, the better the outcomes for kids and their families.”
“Both CEED and the Institute on Community Integration have a shared purpose of supporting the helpers who work with children and families,” adds Ann Bailey, PhD, director of CEED. “This podcast is a new way of providing support, and it’s also a way of saying to that community of helpers: we see you, and we value the work you are doing.”
Cow Tipping Press founder Bryan Boyce (MNLEND, 2020-21) recently wrapped another series of the organization’s writing courses for adults with intellectual and developmental disabilities (IDD), bringing the cumulative number of students served to nearly 600.
Through networking conversations with fellow MNLEND alumni, Boyce has begun offering courses beyond Minnesota’s borders, a result of the surge in interest for online learning due to the pandemic. Most of the coursework can be completed online, but the Cow Tipping team goes on location at the end to present published books featuring students’ work and celebrate the experience.
The five-week classes are still offered three times a year in Minnesota, Cow Tipping’s home, as well. Some individuals take the courses, but organizations typically fill most of the available slots.
“We teach and publish writing by people with disabilities and see that as a new or different way of thinking about, valuing, and uplifting the voices of this diverse population,” Boyce said recently from Cow Tipping’s loft office in Northeast Minneapolis. “It’s exponential the amount of writing that is done about people with IDD versus by people with IDD.”
With a name derived from one of its first author’s literary works, Cow Tipping earns revenue from donations as well as contracting with partner organizations to deliver classes. It is sponsored by a nonprofit organization, Springboard for the Arts.
Partnering with larger service organizations looking to provide meaningful inclusive experiences for adults with disabilities is critical to keeping the presses rolling, said Boyce, who was inspired to start the organization after noticing the creativity of his brother Jay, who lives with IDD. After students take the Cow Tipping course twice, they can become paid teachers of the writing courses, so the organization staff itself is a mix of people with and without disabilities.
“The people we work with often have more creative talent than their neurotypical peers,” he said. “And why is that? Well, what’s valued in creativity? It’s using language in a different way or being spontaneous or quirky.”
Beyond the networking opportunities, Boyce said the MNLEND experience is still serving him today as he navigates different attitudes and perspectives on neurodiversity.
“Something I really valued was the wide diversity of perspectives in LEND, even the ones that were a little tough to listen to sometimes,” Boyce said. “At Cow Tipping, we are rooted in the social model of disability, and to be able to run an effective organization we have to collaborate with organizations that may have a different model. Connecting across differences has really helped me in the work we do.”
Those non-linear connections and partnerships, not unlike a cow path, are critical for the organization’s growth, he said.
“Not being a fully grant-funded program, we can be nimble and really creative in how we accomplish inclusion, but the tradeoff is that we have to hustle a lot harder to sustain the business model,” he said. “There are many more people who could be telling their stories.”
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.”
