Note: This feature story is part of “Where Discovery Creates Hope”—a monthly series filmed by the Star Tribune. Sponsored by the University of Minnesota Medical School, these articles appear in the newspaper every month. The articles and videos are posted on the Star Tribune website and social media. This article also appeared on the websites of the UMN Medical School and of ICI’s home, the Masonic Institute for the Developing Brain.
Jessica and her husband Andrew wondered if their son Elias might be autistic.
They also knew that early intervention, while his brain was still developing, was critical to providing him with the support he needed.
Trouble is, the wait list to see a specialist for the neurological disorder can be months and even a year or more long.
Fortunately, the Mendota Heights couple was referred to Bridging Barriers, a telemedicine study from the Institute on Community Integration and the University of Minnesota Medical School’s Department of Pediatrics – both part of the Masonic Institute for the Developing Brain.
In just four weeks, they had that critical diagnosis. Even better, they’re getting coaching on how to help their four-year-old son while they climb the wait list.
“Time is neurons,” says Jessica with an ever-watchful eye on her playful boy. “We can’t put our son’s developing brain on pause.”
Agrees Dr. Amy Esler, the study’s lead psychologist: “The brain, at this stage, is so malleable. Making sure kids learn to talk, for example, is much easier when they’re two or three than when they’re ten or 11.”
We’ve Had a Few Kids Start to Speak
The University of Minnesota is famous for its medical breakthroughs. But this is innovation in the delivery of that medicine.
The number of people diagnosed with autism grows. But, for various reasons, the number of providers does not.
It’s especially acute in Minnesota’s rural areas, where specialists of any kind can be hours away.
Telemedicine not only promises to serve more patients, more easily but, at least in one sense, also more effectively.
Video calls invite care professionals into the home where they can see their patients in a more natural – and telling – environment.
Says Dr. Adele Dimian, one of the study’s co-principal investigators and coaches: “What makes my day is seeing a family having fun together reaching a goal.”
It’s Just the Way the Universe Works
Nobody knows autism quite like Dr. Jessica Simacek, the study’s principal investigator.
After a career spent helping kids with special needs, her own son was diagnosed with autism.
Dr. Simacek experienced firsthand what it’s like to be on wait list after wait list, first for a diagnosis, then for therapy and more therapy, all while your child – and you – need help now.
And even though she’s an expert on child development, she realized that she needed help, too, even if it’s just a reassuring voice from time to time.
Dr. Simacek says: “Our goal is no families waiting.”
We Call Him Our Crossfit Baby
Jessica and Andrew had a reason to be extra vigilant with Elias’s development.
There was a complication with his delivery – he went without oxygen for several minutes.
Jessica first noticed something different at just three months when Elias pushed himself up on his hands and knees in a determined effort to crawl.
By age 1, he was not only walking with confidence but running and even climbing.
Still, at regular check-ups, Elias’s tests were normal until about three, when Jessica and Andrew noticed delays, especially in his communication skills and ability to regulate emotions.
Now, with the help of the study’s early intervention, they’re confident that they’re doing everything they can for him.
Solomiia Kuchma, a Ukrainian war refugee, in her kindergarten in Minneapolis. On the right is her teacher, Kelly Pier. On the left is Safia Dockter, a University of Minnesota psychology student of Ukrainian descent who befriended Solomiia and speaks to the child in her native language. Solomiia lives in Minneapolis with her mother. Her father is still fighting in Ukraine.
When Safia Dockter began writing and speaking about the atrocities of the Russian invasion of Ukraine earlier this year, it helped her process what was happening to the country where her mother was born and where she still has relatives. What she didn’t know then was how quickly her words would turn into action for one little girl.
Dockter, a University of Minnesota psychology student, wrote an article for Impact, the Institute on Community Integration’s long-running publication about issues important to people with intellectual and developmental disabilities (IDD). The article, “Transition in Times of Crisis,” discussed inequities in the way youth with disabilities come of age around the world, and how war and other crises exacerbate those disparities. A few months earlier, Dockter spoke about the war in Ukraine at a College of Education and Human Development event on campus organized by Renáta Tichá, co-director of ICI’s Global Resource Center for Inclusive Education, who was co-teaching a class Dockter was taking at the time. Together, Tichá and Dockter wrote the article for Impact.
Solomiia cutting artwork while Safia looks on.
Shortly after the article was published this fall, Menolly Pier, a Carlson School of Management student who had seen the article, contacted Safia via social media, asking if she might connect with Pier’s mother, Kelly, a kindergarten teacher at Lake Harriet Community School. Kelly Pier has a young student in her class this fall, Solomiia Kuchma, who fled Ukraine with her mother, Nataliia, landing in Minneapolis. They are living with a host family through a program for refugee families.
Solomiia doesn’t have IDD, but learning a new language, culture, and school environment after having fled the homeland where her father is still fighting has been understandably traumatic. For the past several weeks, Dockter has been coming to Solomiia’s school two to three times per week to help her better understand the school customs here and to simply be a friendly face she can speak to in her own language. Nataliia, a physician, speaks English and is working with Solomiia on it at home. The school has a language specialist who comes to her classroom regularly. Still, Pier has had several experiences with other students who are refugees and wanted to see what more she could do to help.
“Menolly reached out to me expressing interest in connecting about resources for Ukrainian children experiencing trauma,” Dockter said. “I volunteered to come to the school and speak to the child, and that first day we talked for about three hours about her life in Ukraine and her family. Once I left the school, I knew this was something worth putting my time towards. This little girl needed emotional support in school from someone who felt familiar to her and spoke her language, understood her culture, and could be a friend.”
Safia and Solomiia.
Safia helped Solomiia understand the school’s snack time and recess procedures and the fire drill protocol, among other things, Kelly Pier said.
“In our classroom, I teach some sign language to everyone, such as water or bathroom, which keeps noisy interruptions down during the day, and I taught these to Solomiia,” Pier said. “She saw the other children using them as well and that gave her a bond right away.”
Gradually, Solomiia is becoming more comfortable with her new surroundings.
“Tag is a universal language, so she’s running around at recess,” Pier said. “We do a morning greeting and she is now going around and saying her classmates’ names. They have been making her feel welcome and students from other classes are doing that now, too. We teach that everyone needs to be welcomed and that while we are different, different is fun and different means we can learn new things from each other.”
Nataliia says her daughter is doing well, and they are enormously grateful to their host family, the school, and the community. Still, the horrors of war and her fears for her husband and family back home are ever present.
“Solomiia overheard a lot of conversations when we escaped, and so she is naturally afraid of what is happening. I explained that her father is trying to protect our home, but it is very hard for her and she cries when we separate for the day. In this classroom, her emotional development is being looked after, and I just want to thank everyone so much.”
Safia, meanwhile, is developing a handbook for school personnel who work with displaced students from Ukraine. She aims to help them understand and differentiate between responses that are simply cultural norms and those that are trauma related and require mental health treatment.
“Everyone has their own purpose during war,” she said. “Some are doctors, some are soldiers, and some provide other resources that they may have. Solomiia helped me find my purpose.”
Tichá, Safia’s professor and co-author of the Impact article, said Safia’s instinct to create interventions to respond to people with disabilities and others who are vulnerable highlights the urgency of this work around the world.
“One of the reasons I love working at ICI is the chance to see the real impact of our work on the wider community, even beyond disability,” she said. “When an article turns into a spark for making a difference in the life of a child and her family, there is a level of meaning there that just can’t be planned.”
As a direct support professional (DSP), Ellen Wiederhoeft wants to better understand the policies and infrastructure affecting the lives of children and adults with disabilities.
Julie Li Yang wants to deepen her skills in helping her three children with autism, and at the same time broaden her future career aspirations as she completes her master’s degree in public health.
For her independent learning experience as part of the certificate program, Mary Troullier envisions building on her experience teaching yoga to students with disabilities to develop training materials for other teachers. The certificate will enhance her credentials as she also pursues a master’s degree in physical activity and health.
At any given time, about 40 students around campus, like Anderson (MNLEND 2022-23), Yang (MNLEND 2021-22), Troullier (MNLEND 2022-23) and Wiederhoeft (MNLEND 2022-23), are pursuing the certificate credential, a collaborative effort of the Institute on Community Integration and the Department of Organizational Leadership, Policy, and Development within the College of Education and Human Development (CEHD).
The program consists of a three-credit core course taught in the spring and summer terms, six credits of specialized coursework, and an individualized learning experience that includes working directly with people with disabilities or designing disability research or policy, along with participating in interdisciplinary discussion groups.
“This certificate is often an add-on to students’ other graduate work at the University,” said Rebecca Dosch Brown, director of the certificate program and interdisciplinary education director for the Institute. “It can be used as a career development step into the disability field, and it is also integral to the nursing doctorate program. We collaborate with the nursing school so that every doctoral nursing student earns the certificate seamlessly to round out their training. In this program, they get to learn about the social model of disability, or the structural barriers people with disabilities face. They also hear directly from policymakers, and the overall experience often changes how future practitioners and leaders understand disability in society.”
Dosch Brown herself, in fact, completed the certificate earlier in her career as she transitioned from working as a teacher adviser to working in the disability justice and advocacy field.
Anderson, who has a keen interest in research pertaining to race, class, gender, religion, and other aspects of identity as they affect health policies and systemic structures, is also a current MNLEND fellow. He’s using both experiences to help inform his current Ph.D. work in American studies and his future work in law and policy.
“My research looks at the origin of skepticism of the healthcare system in communities of color,” he said.
Yang, also a MNLEND fellow, is using the certificate to deepen her disability credentials as she also pursues a master’s degree in the School of Public Health.
“My planned trajectory in the grad program was to focus on research, maybe childhood obesity. Once my son was diagnosed with autism, my whole life and my education plan changed,” said Yang. As a MNLEND fellow, Yang worked on promoting early intervention autism services in the Hmong community.
Wiederhoeft, meanwhile, is enrolled in the certificate program and also is in this year’s MNLEND cohort.
“In the class, I felt an increased interest because of my experience as a DSP,” she said. “There were a lot of opportunities for me to voice opinions about misconceptions about support staff and hear from a lot of different professionals who work with people with disabilities. Home-based support is often invisible, so I definitely tried to bring home the value of home-based support to nurses and others in the class.
“The biggest thing I appreciate about the certificate is the ability to tailor it to my career and professional goals. I wanted to explore all the aspects of disability.”
Troullier, who worked at the University’s Disability Resource Center as an undergraduate student, said the experience opened her eyes to the gaps and barriers people with disabilities face when it comes to physical activity and fun.
“It showed me how much work there is still to do in the disabilities field,” she said. “A lot of yoga spaces say they want to be welcoming to everyone, but often that extends to race and other aspects of identity but not to disability.”
People interested in the certificate program should email Dosch Brown at dosch018@umn.edu.
After completing a master’s degree at Harvard University, Julia Anderson (MNLEND 2016-17) is turning her experience in disability policy to a new task: innovating state programs for the Commonwealth of Massachusetts.
In January, she became director of strategic innovation for Gov. Charlie Baker’s cabinet relations/strategic operations team, reporting to Robert Garrity, deputy chief of staff for strategic innovation.
“Bureaucracy so often obscures the needs of the family and the child,” she said. “We’re looking at how low-income families or families with high needs – and this includes those with disabilities – apply for financial assistance for childcare. It’s a paperwork-heavy, long process that is confusing for families.”
She’s leading a pilot project to test a new digital application to see if it results in speeding access to childcare for families. She’s also helping assess policies and regulations to discover other potential reforms.
While finishing her master’s degree in public policy at Harvard’s Kennedy School of Government, she worked as an intern for the Department of Developmental Services, which led to becoming manager of statewide autism supports. This work followed her extensive contributions to building accessible programs for diverse communities at the Walker Art Center in Minneapolis. As a MNLEND fellow, she developed Sensory Friendly Sunday , a free monthly event for children, teenagers, and adults with autism or sensory sensitivities, and their families. Inspired by MNLEND’s model of bringing together professionals and community members from a wide cross section of disciplines, she formed a community advisory group of parents, professionals, and self-advocates to serve as advisers to the museum’s program developers.
“When I think of the core takeaways from LEND, a big one was working in an interdisciplinary way with teams; the benefits of getting out of your silo, whether it’s as government administrator, or psychologist, or pediatrician, and talking to other people,” she said. “Right now, I’m helping organize focus groups of families, advocates, childcare and other providers to talk about the challenges in childcare and come up with solutions. So, you need to listen, but you also need to come back to them and be accountable for the outcome, and I think LEND taught us that lesson.”
Rebecca Dosch Brown, MNLEND’s training director, said Anderson is a proven innovator and problem solver.
“She’s always looking for ways to improve systems by listening to the disability community directly,” said Brown. “It’s a testament to her ability to bring people together to build inclusive systems that her brainchild – the Walker’s Sensory Friendly Sundays – continues to be offered each month. That’s her legacy, and we’re thrilled she’s still innovating.”
The MNLEND fellowship application for the 2023-2024 training cohort opened on October 15, with an early consideration deadline of January 6, 2023, and a general deadline of March 1, 2023. Applicants from historically underrepresented racial, cultural, and linguistic backgrounds are strongly encouraged to apply.
While vaccination rates have improved among professionals supporting people with intellectual and developmental disabilities since the early days of the COVID-19 pandemic, their mental and physical health have declined, a new survey shows.
The Institute on Community Integration, in partnership with the National Alliance for Direct Support Professionals (NADSP), surveyed 2,657 DSPs and frontline supervisors about their experiences supporting people with IDD during the pandemic. The newly released survey report is a 24-month follow-up to an initial report issued in April 2020. Additional surveys were conducted six and twelve months after the initial report. The survey series represents the largest-ever national study of the DSP workforce.
According to the report, 52% percent of DSPs reported being diagnosed with COVID-19, and 6% were not diagnosed but suspected they had it. Among employers, 65% did not require DSPs to be vaccinated.
Sixteen percent of DSPs remain unvaccinated. Of the 84% who are vaccinated, 67% reported having at least one booster shot.
While vaccination rates have improved from the 12-month survey in 2021 (from 72% to 86%), the mental and physical health of DSPs has declined. Forty percent of DSPs reported experiencing depression, compared with 36% one year ago; 43% had difficulty sleeping, a 5% increase; 56% reported increased anxiety, a 9% increase; and 21% reported physical health complications, a 3% increase. Fifty-nine percent of respondents said they felt pressure to work extra hours.
“Direct support professionals and frontline supervisors have worked as hard as they can,” said Amy Hewitt, ICI director and lead investigator of the study. “This survey shows that their mental health is worsening, and we don’t have the resources to address it. Working this much overtime is not sustainable.”
A national plan to increase the size of the direct support workforce would help to alleviate multiple troubling issues, Hewitt said.
“This workforce has been overlooked and in crisis for years, with high turnover and vacancy rates, low wages, and lack of access to affordable benefits,” she said.
More than half of DSPs receive government-funded assistance, such as housing, energy, food, and healthcare. The pandemic made staffing even more difficult, increasing stress, expectations, and risk on those who remain in their positions.
The 24-month follow-up survey also looked at changes in technology use during the pandemic. Fifty-nine percent of DSPs reported using technology more or a lot more than before the pandemic. Thirty-six percent of the respondents said the use of technology had a somewhat positive impact on their work, and 14% reported it had a very positive impact. Seventeen percent reported a somewhat negative impact and 3% a very negative impact.
Read the full report, a short version, and select state-specific versions at z.umn.edu/dsp-covid19.
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.”
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.”
Why is disability often excluded from conversations about equity, social justice, or diversity?
A team from the Institute on Community Integration presented this and other topics at the Disability Justice Workshop Series in two separate forums this month, including one for Minnesota State, the nation’s third-largest system of state colleges and universities. The five-part series engages participants who want to create campuses and other environments that transcend the basic requirements of the Americans with Disabilities Act.
“From the beginning, our Minnesota State liaison agreed that to really understand disability justice you don’t just focus on the details of the ADA,” said Rebecca Dosch Brown (pictured at left), interdisciplinary education director at ICI, who created and led the event after receiving several requests from colleagues who had listened to her speak about ableism in other forums. “The ADA is critical, but it is not going to change people’s minds about seeing people with disabilities as less than.”
Her team first presented the series at Minnesota State, then adapted it for a second workshop for the University of Minnesota’s Global Programs and Strategy Alliance. The series covers disability history, ableism, the intersection of racial and disability justice, practical tools for talking about disability, and creating action steps for building inclusive classrooms, campuses, and communities.
“The series was a wonderful opportunity for our community members to collaboratively explore and address systemic oppression that still impacts disability justice efforts,” said Brock Behling, program director for instructional technology at Minnesota State. “The willingness of the ICI to personalize the series’ curriculum allowed for us to meet the needs of our diverse community, but also provided an opportunity to leverage the unique talents across Minnesota State, while sharing the voices and lived experiences of those who participated.”
He said more than 625 individuals attended the virtual event, and more were expected to download the recorded version.
“We are at a point now in the evolution of disability justice where we can move past the basics and get to a place where we are creating truly inclusive organizations,” said Katrina Simons, a community program specialist at ICI who helped Dosch Brown create and present the series. “It was really exciting to see participants keep coming back week after week to participate in these discussions.”
Contributors also included Jana Ferguson, a project coordinator for ICI’s Check & Connect program for school dropout prevention, who provides training to school districts nationwide.
“Even before we asked for participants’ comments, they were responding during the presentations about how meaningful the sessions were and several commented that they hadn’t thought about disability in this way before,” Ferguson said.
“Combining our team’s expertise in positive behavior supports and health equity with Paul Gorski’s work on racial equity detours helped us create a series that acknowledges both racism and its intersection with disability in substantive ways,” Khalif said. “These detours, such as slowing down diversity initiatives to make a group more comfortable, derail progress and harm those most affected by racism and ableism.”
In feedback from participants, one attendee said the session “provided further proof that we don’t see every disability and that students may not feel comfortable disclosing that they have a disability. Therefore, we need to make these efforts in every class.”
To learn more about bringing the programming to your organization, contact Dosch Brown at dosch018@umn.edu.
