CEHD News Tom Donaghy

College of Education and Human Development wordmark.

CEHD News Tom Donaghy

Back to School, or not: What matters most in any classroom

September 17, 2021

As schools, students, and families grapple with a pandemic surge just as many classrooms open for fall term, one thing is clear: Parents need more help in supporting their children to navigate both in-person and virtual classrooms.

The National Center on Educational Outcomes (NCEO) and the TIES Center recently presented a new video series to the Office of Special Education Programs (OSEP), which funds both centers. The free series, Supporting the Learning of Children with Significant Cognitive Disabilities at Home, offers support, tips, and information to parents of students with significant cognitive disabilities as they facilitate learning at home. 



“We think these materials continue to stay relevant because they emphasize the importance of collaboration between teachers and parents,” said Kristin Liu, assistant director of NCEO and TIES Center principal investigator. “There are important things parents can do at home, even when students go back to in-person classes.”



NCEO and the TIES Center, the national technical assistance center on inclusive practices and policies, are part of the Institute on Community Integration. To develop the series, the team used a collaborative process that included volunteer families filming themselves with cell phones as they engaged in learning activities at home. OSEP, other technical assistance centers, and parent advocacy groups were among the other contributors to the project. ICI’s principal media producer Pete McCauley edited and narrated the videos.



“The result is an engaging video series that portrays real families of students with significant cognitive disabilities in real homes,” said Liu.



The videos share activities families can use to strengthen communication, reading, math, and writing skills, and the types of support they should expect from their schools.



“The series reassures parents that they don’t have to be their child’s primary teacher when learning from home,” said Gail Ghere, TIES Center research associate. “Collaborating with the IEP team, they can support their children to learn in a manner consistent with what’s happening at school, which will enhance students’ success in standards-based instruction.”

In addition to the parent videos, a web-based distance-learning series for educators and families that was developed by the TIES Center during the early phase of the pandemic is now being adapted with additional content for those who are going back to in-person learning environments this fall, Liu said. 



“The lessons of the past year have taught us a great deal about what students and parents need to be successful in learning in general,” said Jennifer Sommerness, a TIES Center research associate. “The Pivot to In-Person Instruction series will capture practical examples of what families need from their school teams in order for students to be successful as they return to the classroom.”



Further details about the new series will be shared on the TIES Center Facebook page and in the TIES newsletter.

“Impact” launches arts issue

September 17, 2021
This issue of Impact from the Institute on Community Integration focuses on art careers for people with intellectual, developmental, and other disabilities.

The work of nearly three dozen professional artists with disabilities is highlighted in the new issue of Impact, a print and digital publication of the Institute on Community Integration.

Articles by Leroy Moore, founder of Krip-Hop Nation, and William Britt, a visual artist who spent more than 30 years institutionalized at Willowbrook State School, accompany scholarly articles assessing the progress toward inclusion in the professional arts for people with intellectual, developmental, and other disabilities. Visual and performing artists at all stages of their careers and leading programs working to helping artists develop their professional careers also are featured.

The issue launches at a time when major film and television studios are making public vows to increase diversity in front of and behind the camera. It also comes as day programs for artists with disabilities face changes to their public funding, and as recognition grows that the number of professional artists with disabilities working today is simply too low.

“This issue showcases the complex nature of artistic careers and the seriousness of artists who have traditionally been cast aside,” said Nik Fernholz, program manager for ICI’s Art for All, who served as an issue editor. “It bridges a gap between these artists and the greater arts community, defining an inclusive space for artists at all stages of their careers.”

A talent studio founder in Los Angeles takes readers behind the scenes as he coaches actors with disabilities in their television and film work, including roles in The Good Doctor, Born This Way, and Glee.

And Jeanne Calvit shares the story of how she started Saint Paul’s Interact Center for the Visual and Performing Arts.

“We know that the artistic process has the power to change things, to give us those ‘ah-ha’ moments that can blow your thinking wide open,” she writes. 



Other issue editors include Betty Siegel, director of the Office of Accessibility and VSA at the John F. Kennedy Center for the Performing Arts in Washington, D.C.; Olivia Raynor, founder and director of the National Arts and Disability Center and director of the Tarjan Center, University of California, Los Angeles; and Beth Stoffmacher, an arts specialist with NADC and center coordinator for the Tarjan Center at UCLA.



“The creative talent of artists with disabilities warrants greater visibility and recognition,” Raynor said. “There are no limits to this talent, and this issue shows the progress that is being made in representation and recognition for artistic excellence. It also points out the need for more education and training opportunities for people with disabilities to develop and succeed in professional careers in the arts.”



Other artists and programs featured in the issue include Jimmy Reagan, the Saint Paul painter whose work has been exhibited throughout the United States and in Europe; Jeremy Sicile-Kira, a San Diego-based painter with autism who experiences synesthesia, allowing him to perceive people and their emotions as color; and Mind the Gap, England’s largest theater company working with performers with autism or learning disabilities.

Siegel said advising the feature issue reminded her that access to the arts connects us with one another, and makes us fully human.



“Art allows us to communicate our feelings and fears, our desires and dreams,” she said. “In this odd year of social reckoning and pandemic, climate change, and political change, working on this issue of Impact gave me a sense of purpose and it reminded me of the words of President John F. Kennedy, engraved on the walls of the Kennedy Center:

‘I am certain that after the dust of centuries has passed over our cities, we, too, will be remembered not for victories or defeats in battle or in politics, but for our contribution to the human spirit.‘”

Using robotics to add jobs

August 18, 2021
ICI’s Renáta Tichá and Brian Abery.
ICI’s Renáta Tichá and Brian Abery.

Under a new grant from the U.S. Embassy in Tokyo, ICI‘s Global Disability Rights and Inclusion Program area will explore the use of robotics to support people with intellectual and developmental disabilities (IDD) in employment and other aspects of community life in the United States and Japan.

ICI’s Renáta Tichá, Brian Abery (pictured), and Matt Schuelka will collaborate with partners from Ory Laboratories in Japan, The University of Tokyo, and the University of Wisconsin-River Falls to adapt the use of Ory’s “avatar” robot, OriHime. OriHime initially was created to perform tasks that were controlled remotely by people with physical disabilities who were working from home. A café in Tokyo, which opened this summer for a few days of trial operations, used the robots to serve customers and run the store.

The partners will now explore how to use the robots to foster the employment, self-determination, and community inclusion of people with IDD, joined by students and professors from the University of Minnesota’s Department of Computer Science and Engineering.

“Our colleagues around the world have made it very clear that work is what makes people with and without disabilities feel useful and connected to the community,” said Abery. “At the same time, we are desperate for job coaches, who support people with IDD in the workplace. So, we thought, ‘What if a job coach with a physical disability could be offsite, and be in charge of several of these robots that would be supporting workers with IDD?’ It could open up a lot of potential job coaches if they didn’t physically have to be at the workplace.”

The University of Tokyo’s Shinichiro Kumagaya, a pediatrician and associate professor at the Research Center for Advanced Science and Technology, is among the global partners on the project. As a person with cerebral palsy who uses a wheelchair for mobility and who also directs the University’s disability services office, Kumagaya contributes lived experience to the initiative, along with his technical expertise.

The collaboration is an exploratory step, but will also include a visit to Japan by the U.S. partners to learn about other potential uses of robotics to foster the inclusion of people with IDD in the workplace and to enhance employers’ capacity to hire workers with disabilities.

“We’re excited to work with the engineering department and with the delegation from Japan and to have a robust exchange of ideas that will lead to new technologies that are useful to people with disabilities,” Tichá said.

Stepping back to move forward: Megan Andre (MNLEND, 2019–20)

May 17, 2021

A mother with a few young children, including one with Down syndrome, was having a difficult day recently. Trying to juggle orthotics that didn’t fit properly for one child and some behavioral issues with another was adding up to a lot of stress.

“I just thought, ‘What can I do to take some of that load off today?’” said Megan Andre (MNLEND, 2019–20), now a pediatric physical therapist with Mary Bridge Good Samaritan Children’s Therapy Unit in Puyallup, Washington. While the family was in the office, Andre was able to get the footwear adjusted, avoiding a second trip back to the facility, and completed a referral to the behavioral health department for the other child. For the actual physical therapy appointment, Andre focused on some streamlined exercises that the family could work into their chaotic, pandemic-interrupted routine.

“You have to take into account what the family is going through outside of the clinical environment,” said Andre, who completed her residency at Gillette Children’s Specialty Care in St. Paul. “It’s really easy to get stuck in the professional mindset and only think about the technical aspects of what needs to be accomplished in the appointment.”

Combined with her residency training and earlier career experiences with people with a variety of neurodevelopmental disabilities, MNLEND solidified the family-centered care she now delivers, and the understanding that disparities in resources can have a dramatic impact on how therapies are accessed, said Andre, who recently sat for the pediatric clinical specialist exam.

Before becoming a MNLEND fellow, Andre practiced in outpatient pediatric and neurologic physical therapy clinics, developing an interest in working with children learning to walk and eventually presenting a community parent education class. 

“LEND was a huge help in cementing that person-first care mentality,” she said. “It helped me complete the circle in working with families so that they understand we’re not just taking a few extra steps today. We’re going to understand why it’s important to do these steps and to continue them outside of PT. The goal is to be functional in everyday life, so they can participate more fully in the community.”

Faith in action: Beyond the mission statement

May 17, 2021
MNLEND fellow Deqa Farah (right) speaks with her brother, Abdullahi Farah, who is the imam at Dar Al Farooq Youth and Family Center in Bloomington, Minnesota. They are exploring ways to make their faith-based organization more welcoming to people with disabilities.

Plenty of mission statements for faith-based organizations talk about welcoming everyone. When it comes to people with disabilities, however, it takes more than words and a wheelchair ramp to achieve true inclusion. 

Fellows from the Institute’s Minnesota Leadership Education in Neurodevelopmental and Related Disabilities (MNLEND) program are working with a Twin Cities-area church and mosque to think differently about how they serve worshippers with disabilities. MNLEND is an interdisciplinary leadership development program, funded by the U.S. Maternal & Child Health Bureau, that spans more than 16 disciplines across the University of Minnesota. 

Deqa Farah, a MNLEND fellow and the mother of a young son who was diagnosed with autism a few years ago, is coordinating a transformation at Dar Al Farooq Youth and Family Center in Bloomington that includes accessibility assessments, leadership training in neurodiversity, and khutbahs (Friday sermons preached in mosques) that center on how faith intersects with disability.

“Deqa is our champion, the one who holds us accountable and pushes us to do better in how we accommodate people with disabilities,” said Abdullahi Farah, Deqa’s brother and the imam at Dar Al Farooq. “She empowers others from the community not to lose hope and to speak up. I believe with the right support and resources she can make the dream of a fully accessible and inclusive mosque a reality.”

Deqa arranged for an initial accessibility tour of the mosque with ICI’s Macdonald Metzger and others, and has connected mosque leaders with Muhsen, a Chicago-based nonprofit organization that provides advocacy and training to help Muslim communities become more welcoming to people with disabilities. Muhsen provides an accessibility framework and some funding for accommodations, and Deqa aspires to make Dar Al Farooq the first mosque in Minnesota to achieve Muhsen certification. 

“We are hoping for resources and education that shows us how we can better serve people with disabilities,” said Mohamed Omar, executive director at Dar Al Farooq. “What we are trying to do here shouldn’t be seen as extraordinary. It is a basic need and our responsibility to make sure everyone can be part of our community.”

Already, mosque leaders are exploring the creation of quiet, secure spaces for children with autism to go if they need to be away from loud noises and crowds momentarily, for example.

“Soon after my son was diagnosed, I struggled to find support in the community,” Deqa said. “Our faith is so integral to everything we do, but to be honest I didn’t find the kind of support I was looking for. As a LEND fellow now and with the support of the University and the leadership at the mosque, I know I’ll continue to be involved with this long after my fellowship is complete this spring.”

Another MNLEND fellow, Elijah Zina, is bringing similar neurodiversity and disability awareness training to Gethsemane Lutheran Church in Maplewood. 

Zina, who is also a master’s degree candidate at Luther Seminary, was intrigued with the MNLEND project in part because of what he observed about disability perceptions in his home country of Liberia.

“In Africa, disability is considered a curse. When a relative is disabled, people consider it a curse upon your family and that person is excluded and treated as an outcast, often ending up on the street with no help,” Zina said. “Through this project, we wanted to work with the faith community to advocate for inclusiveness. The church can be a critical voice for people with disabilities. They can serve communion and be greeters, welcoming people. Churches can produce plain-language guides to the service to help people understand what is going on.”

Gethsemane has already reached out in a few different ways. The church rents space to an organization that hosts social events for people with disabilities. Through that relationship, the church a couple of years ago created a weekly worship service geared specifically to people with disabilities that now attracts people without disabilities as well. 

“It’s been a great experience. When we have prayers in that service, everybody hugs,” which rarely happens in the traditional service, said Pastor Elizabeth Wilder. After speaking with Zina and becoming involved with the MNLEND program, however, Gethsemane is ready to do more, Wilder said. “If we’re truly going to be welcoming, we need to learn how we can really welcome people in either service. How can we learn to be more inclusive? We want to be part of receiving this training and bringing it to the church at large.”

Though their fellowships are ending soon, Farah and Zina said they are working on securing grant funding to carry on with the projects into next year’s MNLEND program.

“We’d love to expand this to other churches and community groups,” Zina said. “We see the role of the church as critical to disseminate information and serve as a beacon of hope. We don’t want any more families coming to a faith-based center and having to leave their family member with a disability at home.”

Crisis upon crisis: New Impact issue has launched

May 17, 2021

Exclusive research data on COVID-19 mortality rates among people with disabilities, insight from leaders in the disability field on the effect of multiple crises, and practical tips on maintaining education and well-being in the face of disaster are all available now in the just-launched issue of Impact.

“The last year has tested us in previously unimagined ways,” said Laura Stough, a professor of educational psychology and assistant director of the Center on Disability and Development at Texas A&M University. “This edition provides unique perspectives about people with disabilities experiencing emergencies and crises and represents remarkable additions to the disability literature.”

Stough served as an issue editor for the Impact Special Issue on Crisis Management for People with Intellectual and Developmental Disabilities, along with Mary Sowers, executive director of the National Association of State Directors of Developmental Disabilities Services, and Renáta Tichá, co-director of the Global Resource Center for Inclusive Education at the Institute on Community Integration. Impact is published by ICI and the Research and Training Center on Community Living and Employment, in part under grants from the U.S. Department of Health and Human Services. Each issue is dedicated to a topic of importance to the disability community. This issue’s editors also wrote a feature article on the inequities people with disabilities face during and in the aftermath of disasters and crises, from the pandemic to natural disasters to social unrest.

Other articles include new research on the COVID-19 case-fatality rate for people with IDD, written by Margaret A. Turk, a professor at SUNY Upstate Medical University, and Scott Landes, associate professor at Syracuse University. Longtime disability community leader Kim Keprios contributes a deeply personal story about the death of her brother Mike during the pandemic. Inclusion International’s Sue Swenson contributes an introduction to a series of articles about the lessons learned from historical disasters. Georgetown University’s Tawara Goode delves into the intersection of disability, race, and ethnicity during the pandemic. Authors in the field of special education write about distance learning during the pandemic, and a group of nurses who specialize in caring for patients with disabilities share their personal frustrations with the medical community’s response to the pandemic. Several self-advocates offer their own stories of living through crises, among other articles.

“The voices of the disability community are diverse, and yet reveal interrelated experiences. The contributions in this edition provide a multi-layered and intersectional portrait,” Stough said.

“My hope is that we borrow from the learnings represented in this edition to further strengthen the disability community, and find new methods of providing inclusive and accessible services in emergency and crisis management.”

Autism Lives

April 16, 2021
Jules Edwards.

Jules Edwards was 32 when she was diagnosed with autism, along with her children. Tom Cox was in his 40s when one of his employees suggested he might look into Asperger syndrome. 

Those turning points, they say, led both of them to a deeper understanding of themselves and the world around them. Today, Edwards and Cox are leaders in Minnesota’s autism advocacy community.

And as April brings the annual shower of stories about autism – it is called Autism Awareness Month by some groups and Autism Acceptance Month by others – they are hoping a similar understanding breaks through the messaging.

“We see a lot of negative messaging and portrayals of autistic traits. It’s important to know autistic people are complete human beings,” said Edwards, a current fellow in the Minnesota Leadership Education in Neurodevelopmental and Related Disabilities (MNLEND) program at the University of Minnesota’s Institute on Community Integration. “Autism isn’t good, and it isn’t bad. It just is.”

Sometimes, the messaging that comes across centers on the medical notion of prevention.

“Preventing autism is like preventing tall people. Please don’t do that,” said Cox, who serves as a board member for the Autism Society of Minnesota. He is collaborating with the Institute on a research project aimed at understanding how autism can affect a variety of physical health and well-being measures. Cox, who is gay, is advising a proposed project to explore sexual education and health in the lesbian, gay, bisexual, transgender, queer/questioning, intersex, asexual/ally, and other (LGBTQIA+) community. 

MNLEND fellow Quinn Oteman has created a year-long project to interview a group of 12 to 15 adults who are in both the autistic and LGBTQIA+ communities about their sexual health and education experiences, and report on the findings. If approved, the work will become part of a multidisciplinary research network, led by the University of California, Los Angeles, under a grant from the Health Resources & Services Administration. 

ICI is part of the network, called the Autism Intervention Research Network on Physical Health, which is studying healthcare access and quality, primary care utilization, stress, sleep, substance abuse, sexual health, neurological and other issues that intersect with autism. 

ICI’s Seunghee Lee also recently proposed creating a conceptual model for transitioning mental health services for autistic adolescents as they become adults. The project will involve autistic young adults, their caregivers, and mental health service providers as key stakeholders informing the project. 

“I was curious whether mental health practitioners are prepared for the wave of autistic children who are now becoming adults,” said Lee, a post-doctoral associate in ICI’s Advanced Rehabilitation Research Training Community Living and Participation project. 

ICI’s Lynda Lahti Anderson and Jennifer Hall-Lande, investigators on the UCLA-led grant, are advising Oteman and Lee on the proposed studies. 

“Studying adult issues in autism complements our substantial work in early intervention, and highlights the importance of working across the lifespan to improve outcomes,” Hall-Lande said. “Autistic adults need quality mental and physical health services, but they often face significant roadblocks in obtaining quality care and supports.”

Edwards, meanwhile, is creating a short series of podcasts for the University of Minnesota’s Center for Advanced Studies in Child Welfare (CASCW) that inform social workers about autism perceptions in the Indigenous community and how that impacts the child welfare system. The podcasts are part of her MNLEND fellowship.

Race and autism have played significant roles in Edwards’ journey as an Indigenous autistic parent raising multi-racial autistic children. A volunteer with several autism advocacy organizations around the state, she is also a co-founder of a new organization, the Minnesota Autistic Alliance, that will fund advocacy work and support that is done by autistic people themselves.

For Cox, a computer scientist by training who also co-owned a restaurant for several years, receiving the autism diagnosis at mid-life and doing advocacy work as an adult has been illuminating.

“It was a framework for understanding myself,” he said. “For a long time, I didn’t have the tools to manage in a competitive work environment without extreme difficulty.”

Having now spent time working on social and communication skills, largely through his advocacy volunteer work, Cox said he hopes to return to the workplace.

“I boiled it down to a list of why companies should hire more autistic workers. If you need someone to charge down that rabbit hole for an answer, we often have unusual strengths in that area. If you need to break a problem down into small pieces, autistic people will often have that ability. We are typically independent thinkers. And we are extremely loyal,” he said. 

Of course, all individuals have unique talents, he said, which is something to remember in April, and beyond.

“I believe we are a fundamental and intrinsic part of humanity,” he said. “It’s like biodiversity. Think of a forest and all the different types of trees we need. The same is true for humans. The variety of cognitive styles helps us thrive as a species.”

A Touch of Color

April 16, 2021
Donna Ray in her studio.
Photo credit: Northern Clay Center.

Artist Donna Ray painted a letter in the Black Lives Matter mural on Plymouth Avenue last summer in Minneapolis. It featured a hawk, known as a protector in the spirit world, and the words of George Floyd’s daughter, “Daddy changed the world.” Though Ray painted the mural’s “I,” her art has always been about “we.”

“Ceramics is a chemical and visual field, where I have to know about color, but I only see black, white, and gray, so I have to be very social in my community,” said Ray. As a child, she soaked in compliments from family and friends about a red velvet Christmas dress or a pink Easter bonnet, relating their descriptions and the feel of the finery to her imagination of color. Years later, talking with people about what animals look like helped her choose colors as she formed artwork from a ball of clay. 

“Gold eyes make Rocco the baby raccoon look greedy as he eats the red pepper from Chook, the garden rooster. His eyes are like gold coins,” she said. “I get my colors from the people I talk to…and then I make it my own.”

Recently, Ray shared her artistic vision with community members and high school artists as part of Art for All, the Stephanie Evelo Program for Art Inclusion at the Institute. 

The program features Ray in a solo exhibition, “Black and White with a Touch of Color,” beginning April 15 and running through May 31. In preparation for the virtual event, Art for All hosted a livestreamed conversation between Ray and Nik Fernholz, program manager for Art for All. The pair also spoke virtually with art students at Buffalo High School.

Each year, students at the school partner with elementary students, creating ceramic bowls from drawings made by the younger students. Next month, the bowls will be for sale to parents and community members in a silent auction, with proceeds donated to Art for All. 

“My mom and my sister were both special education teachers. It had a huge impact on me,” said Jon Holtz, the art teacher who created the silent auction and who has taken a strong interest in promoting student artists with disabilities over the years. “When I came to this school nearly 30 years ago, special education students didn’t move around the building a whole lot. Hopefully, we’ve opened the door to some of those students.” For purchasing questions and other information about the silent auction, contact Holtz at jholtz@bhmschools.org.

Carrie Schmitt, a special education teacher at the school, works with Holtz both on the bowl project and on the school’s broader inclusion efforts in art and other classrooms. “We’ve dug into what it means to be inclusive and we’ve used the general education students as mentors in classrooms,” she said.  Their efforts go beyond the subject matter of individual courses, stressing fun and social opportunities involving students with and without disabilities.

“We feel very fortunate that the school has selected Art for All to receive the proceeds from this event, and to share in the event featuring Donna Ray,” said Fernholz. “I was speaking to one of the students after Donna’s talk and the student shared how she closed her eyes and started using her hands to understand the piece of pottery in a different way.”

Or as Donna might say, she learned the touch of color.

LEND an ear: on-demand disability training

March 19, 2021
Woman in a wheelchair with children walking beside her. The text reads, "Disability and child welfare: LEND interview with DJ Strons."

Fellows from the Institute on Community Integration are contributing to a podcast series that delivers on-the-go training and insight to child welfare workers. The current and former fellows are from ICI’s Minnesota Leadership Education in Neurodevelopmental and Related Disabilities (MNLEND) program, an interdisciplinary leadership training program that brings together more than 16 disciplines across the University of Minnesota. 

Jenny Tessmer (MNLEND, 2019–20) created two of the podcasts, which focus specifically on helping workers better understand disability issues within their caseloads. The first featured an interview with Derjaun Strons (MNLEND, 2017–18), who works in child protection services for Hennepin County.

“Every child welfare agency should educate their workers [about disability],” Strons says on the podcast. “I wanted [the LEND training] as a tool in my toolbox.”

Tessmer also interviewed Gail Meyer, a longtime foster parent, about her experiences trying to get services for children with a variety of diagnoses, including fetal alcohol syndrome.

“This project really aligned with my passion and my career,” said Tessmer, now a mental health therapist with Family Enhancement Center in Minneapolis who works with clients referred through the Hennepin County child protection services unit.

The series is part of a broad training initiative created by the University of Minnesota’s Center for Advanced Studies in Child Welfare (CASCW).

“Child welfare workers have to be experts in child development, domestic violence, substance abuse, maltreatment, disabilities, and so many other issues. Most days are overwhelming,” said Traci LaLiberte, executive director of CASCW. “We’re always thinking about ways to reach them in a better format. And because social workers spend a lot of time in the car going to investigations, and going to court, we started to think about capitalizing on that time with some training in manageable chunks that could be accessed on their phones.”

The result is a wide-ranging series of podcasts, helping social workers navigate the challenges of the pandemic, and learn more about research, policy, and practice topics.

MNLEND fellows in this year’s cohort are working on future disability-focused podcasts LaLiberte said.

“One will be focused on trauma and how child welfare workers need to understand the additional layers involved when working with kids with neurodevelopmental disabilities who have also experienced trauma,” she said. Others explore different cultural views of disability and how that impacts the child welfare process.

“It’s about getting people in the field to talk about what they are doing and what their challenges are, so others can learn from them,” she said.

Mia Donley, alumna: help for hungry families

March 19, 2021
Mia Donley.

Winning a state government award last month for getting a food assistance program up and running during the pandemic was an impressive achievement for Mia Donley (MNLEND, 2015–16). What makes it even more impressive was the timing.

Donley, a registered dietician who received a master’s degree in public health from the University of Minnesota, joined the Colorado Department of Human Services in March 2020 as an education and outreach coordinator for the Supplemental Nutrition Assistance Program (SNAP).

Just a few weeks later, Donley and a team of others from the DHS and the Education Department were tapped to issue Pandemic-EBT benefits to families of school-aged children who were not able to receive free or reduced-price lunches due to school closures. The electronic benefits were issued beginning in July.

Last month, Colorado Governor Jared Polis announced that the team, including Donley and colleagues Megan Hrdlicka and Max Young, won the Tom Clements Better Government Award for Outstanding Service. The award highlights the work of those who have elevated the performance of state government and strive to leave Colorado’s government better than they found it, according to Polis.

In nominating the group, Office of Economic Security Director Ki’i Powell and Food and Energy Assistance Director Karla Maraccini praised the Pandemic-EBT program for “ensuring hundreds of thousands of Colorado children were food secure during the pandemic, going above and beyond their typical workload for months to get the program up and running.”

Donley called the experience a crash course in crisis communication, listening skills, and benefits administration.

“We were building the plane as we were flying it, working with community partners to get the word out about the application and other details,” she said. “There were a lot of lessons learned, and it brought me back to my time with MN-LEND, when I interviewed members of the Somali community who had children with autism and were trying to learn about possible resources. The frustration so many people feel as they try to access benefits is universal. Above all, listening to participants is so important.”

As her team now prepares for a second round of the electronic benefits to be dispersed, she said, they will take what they’ve heard from those participants and use the information to improve the process.

“We have to respect the stress families are under now,” she said. “If you have run out of resources, we are sometimes the only place where people can vent their frustration. And I share it. We have to get these families fed.”

Elevating positive behavior support and strategies

March 19, 2021
Rachel Freeman.

A student disrupts class. An argument erupts in a household where family members have been isolated during the pandemic. A toddler in an early childhood education center cries loudly when it’s time to leave the playground.

Rather than dealing with these common flashpoints after they happen, a burgeoning area of expertise in behavioral and biomedical science aims to prevent them. 

On several fronts, the Institute on Community Integration and partner organizations are combining positive behavior support (PBS) and person-centered thinking practices to increase families’ quality of life.

This month, for example, ICI staff members will share key insights at “The Expanding World of PBS: Science, Values, and Vision,” a virtual conference now in its 18th year. 

Positive behavior support is a set of research-based strategies for increasing quality of life and decreasing interfering behavior. Instead of focusing on interventions for one person, the framework uses a continuum of proactive strategies to teach a range of skills, from de-escalating intense one-on-one situations to building good social relationships within an organization. This creates environments that are positive and predictable. They also work alongside person-centered planning techniques, which involve designing activities that are both tailored for and important to an individual. 

As the PBS framework has grown in use by early childhood centers, schools, residential, employment, and other community settings, there is a tendency to focus on the most intense situations involving people with disabilities, said Jessica Simacek, manager of the ICI Telehealth Laboratory and a specialist in supporting children with developmental disabilities. This is a common misunderstanding about the framework, she said. 

“In reality, it’s intended to be a model to support everybody in a given setting. On a universal level, that means creating a supportive environment for the staff, students, and families at a school, for example. We’re not stepping in to just stop an interfering behavior. We’re building a proactive, positive, data-based approach to improve the quality of life for everyone in that setting.”

At this month’s virtual conference, ICI’s Rachel Freeman, director of state initiatives and a leader in the area of PBS, will discuss ways to implement a three-tiered PBS model in home, community, and work settings. The tiers represent the range of behavior intervention and support, from creating a broad set of expectations for everyone in a given setting to more individualized responses to specific behaviors. She will also present some of the Institute’s work with the state of Maryland to create a technical assistance infrastructure for implementing PBS in organizations supporting people with IDD in residential and employment settings.

Eileen Klemm, program director for ICI’s Check & Connect dropout prevention program; former ICI Director David Johnson; and Nicole Duchelle, an ICI education program specialist, will also present the Institute’s work at the conference. 

Check & Connect also is featured this month in a webinar series hosted by the National Center on Intensive Intervention and the Center on Positive Behavioral Interventions and Supports. The series focuses on supporting secondary students with intensive needs during the pandemic.

ICI also is part of a community of practice, the Minnesota Positive Behavior Support Network, which has been hosting a series of PBS forums for people across the lifespan. And under an award from the Minnesota Department of Human Services, ICI is creating a series of eight online training modules supporting providers of person-centered practices and PBS in home and community-based settings. 

“One of our colleagues used an analogy recently of a fire station when talking about these strategies,” said Freeman. “We’re giving people tools and resources so they don’t have to be putting out fires all the time. Instead, we are preventing fires from occurring in the first place.”

CEHD Research Day features ICI autism work

March 19, 2021
ICI's Libby Hallas and Jennifer Hall-Lande at a previous CEHD Research Day.
ICI’s Libby Hallas (left) and Jennifer Hall-Lande (right) at a previous CEHD Research Day.

The Institute’s work in autism prevalence and the critical age at diagnosis are highlighted at this month’s College of Education and Human Development Research Day. 

The virtual event features short videos that will accompany each poster. Visitors are encouraged to leave feedback and questions for presenters through the end of March. On March 23, a live panel will discuss the intersection of social justice and research. There will also be a Three-Minute Thesis competition and a presentation of CEHD’s World Challenge 2020 winners.

Libby Hallas, an ICI project coordinator who manages the Minnesota-Autism and Developmental Disability Monitoring (MN-ADDM) Network Project, presents two posters. Hallas is pictured at left during a previous (in-person) CEHD Research Day.

The first covers autism spectrum disorder prevalence data reported to the Centers for Disease Control and Prevention, noting differences across racial and ethnic population groups that require further study.

“Continuing to expand our surveillance area across racial and ethnic groups will give us more precise data,” Hallas said. “There is a need to further understand the possible reasons for disparities, including the issue of access to diagnostic services.”

The second poster notes disparities in children’s ages when they are first identified as being on the autism spectrum. Children who are only identified through services at school start to receive intervention far later than those seen in both school and clinical settings. Racial disparities were also noted. 

“This was a network-wide project that our Minnesota team led, and it highlights the importance of early intervention. If the first comprehensive evaluation doesn’t happen until a child is school-aged, an important window may have been missed,” Hallas said. “We’re looking forward to sharing this work, and to seeing what other researchers across the college are submitting.”

Shaping justice: ICI’s Self-Advocate Advisory Committee

March 19, 2021
Heidi Mhyre beside the ADA anniversary bus.
Heidi Mhyre serves on the Self-Advocate Advisory Committee at the College’s Institute on Community Integration.

It began as a way to help shape a new, federally-funded website dedicated to self-advocacy, but the Institute’s Self-Advocate Advisory Committee (SAAC) didn’t stop there.

Since 2019, the committee has reviewed research study questions to test whether people with intellectual disabilities may have difficulty understanding them, for example. Members have flagged photos in draft brochures that send the wrong message, or lack diversity. They have warned investigators when surveys asked too many questions, when print materials used a too-small typeface, or when a brochure headline used language that struck them as inappropriate. They helped recruit a person with disabilities to join the Minnesota Leadership Education in Neurodevelopmental and Related Disabilities (MNLEND) fellowship program.

Meeting this month via video conference call, they reviewed a quiz about the history of disability justice that will eventually be given to caregivers of people with disabilities as part of a training session. The goal: furthering caregivers’ understanding of the hard-fought right to self-determination that people with disabilities have earned.

“The committee has given high-quality, critical feedback on the pieces they have reviewed for ICI,” said Katrina Simons, a community program specialist who organizes SAAC meetings and serves as a liaison between the committee and ICI. “Some self-advocacy groups focus on teaching the skills involved in speaking out, which is an extremely important mission. Our goal is to use the committee’s talents to directly inform policy and training as it is being written.”

Heidi Myhre, a committee member who has been active in both the Self-Advocacy Movement and in policy work with the Institute and other organizations, emphasized the importance of having people with different types of abilities and disabilities review research and training projects.

“We have to make sure we explain things in different ways and to give people the opportunity and time to process,” she said. “This work helps us tell our story in a way that everyone can understand.”

The Institute’s Research and Training Center on Community Living operates the Self-Advocacy Online website under a grant from federal agencies, including the National Institute on Disability, Independent Living, and Rehabilitation Research. It was that project that sparked the idea for the committee, said John Smith, a coordinator at ICI.

“The SAO website is intended to share interesting and useful information with people who have a range of intellectual ability, so the need for input from self-advocates became evident as we began thinking about the best ways to share our research,” Smith said. “Rather than making assumptions about making data understandable for people with intellectual and developmental disabilities, we formed a group that would review content developed by ICI’s staff and suggest ways to make the language more plain and more relevant to people’s lives.” The content developed for Self-Advocacy Online goes beyond plain language and often incorporate graphics, video, and animation to illustrate key ideas.

The committee, supported in part by a federal grant to Self Advocates Becoming Empowered, currently has 10 members, including three from outside Minnesota who also serve in national self-advocacy organizations.

“It’s not a common thing that a university would ask our opinion on their work,” Teresa Moore, a committee member and director of the Self Advocacy Resource & Technical Assistance Center, said after the recent meeting. “It’s a matter of respect.”

In addition to Myhre and Moore, committee members include Cliff Poetz, Joe Meadours, Thomas Robinson, Katie McDermott, Eva Reed, Eric McVay, Jocey Brown, and Jason Billehus.

Moore routinely shares traditional advocacy news with SAAC members, and takes their concerns back to national groups. Not surprisingly, much of the conversation today centers on the pandemic.

“In a lot of places, even though states are opening up, people with disabilities are having difficulty getting their rights acknowledged,” she said. “We hear stories about family members controlling activities to only doctor’s appointments, with no participation in the community. We need to keep talking about this.”

Human rights depend on democracy: Protect it

January 21, 2021

Disability is a bipartisan human-rights issue, and the stakes for people with disabilities are huge if democracy is compromised in any way.

First published in MinnPost on January 21, 2021.

By Amy Hewitt

A disabled protester is pulled from his wheelchair and removed by Capitol Hill police officers during a Senate Finance Committee hearing on a Republican effort to repeal and replace the Affordable Care Act on September 25, 2017.
REUTERS/Kevin Lamarque

A video clip circulated on social media last week showing people with disabilities being forcibly removed by police from a congressional hearing. The caption, clearly designed to garner outrage: “Disabled Trump supporters get arrested for storming U.S. Capitol.” Two days later, Reuters ran a fact-checking piece that identified the clip as a 2017 Senate hearing on the Affordable Care Act, where about 200 disability rights activists protested a proposed amendment to the legislation that would have made significant cuts to Medicaid.

In 2017, protesters were ripped from their wheelchairs, dragged from the Senate hearing room, handcuffed, and pepper sprayed. Capitol police arrested 181 of them. Their crime: disrupting the hearing with their chants as they fought to keep people with disabilities from being re-institutionalized due to the loss of vital home-based services.

How stunning and painful it was to watch the actual attack on our U.S. Capitol this month, when a souvenir-grabbing mob was essentially allowed into the chamber where legislators were beginning to confirm the votes from November’s presidential election. The ensuing siege over the next several hours left several dead and our hallowed core of democracy in shambles, but it resulted in relatively few arrests. CNN’s Eliott C. McLaughlin pointed out the stark difference in police response during several other protest events, including the 2017 Senate hearing.

It’s impossible not to compare how these mostly white extremists were initially accommodated with how people with disabilities – and those standing up for Black lives in the wake of police brutality – have fared. Because silence is complicity, I am compelled to point out the troubling path that these disparities portend.

Ableism and racism continue to plague our nation, and they boil over just as we are fighting the pandemic on uneven ground.

People with disabilities and people of color are dying in disproportionately high numbers. And for people with disabilities, reports of blanket, unlawful do-not-resuscitate orders make the dark days of eugenics and mass institutionalization a not-too-distant memory. Those in hospitals are not getting the intensive interventions and treatments that others do because of incorrect assumptions that they cannot make informed decisions. Loved ones continue to struggle to advocate for their family members’ well-being. And people with disabilities who live in congregate care settings are dying at the highest rates of all.

On top of all that, many people with disabilities simply don’t have enough resources to live, a problem that began long before the pandemic but has worsened. We haven’t even begun to see all of the pandemic’s economic fallout, but we know that people with disabilities have dramatically higher unemployment rates than any other group. Of the people with intellectual and developmental disabilities who have jobs, many of them had to give up those jobs in order to comply with group home rules limiting exposure.

As I’ve struggled in recent days to wrap my head around the insurrection at the Capitol, I come back to the simple truth that disability does not discriminate among political ideologies. Disability is a bipartisan human-rights issue, and the stakes for people with disabilities are huge if democracy is compromised in any way. Protecting that democracy is our best chance of protecting human rights.

Amy Hewitt, Ph.D., is the director of the Institute on Community Integration at the University of Minnesota.

From MN-LEND to the National Institute of Mental Health

January 19, 2021
Sunday Francis.

A fascination with the brain and how it influences behavior began with a high school psychology class for Sunday Francis (MN-LEND, 2014–16). It has brought her through the fields of neuroscience, engineering, genetics, and autism research at several prestigious universities.

This month, Francis’ path took her from the University of Minnesota’s Department of Psychiatry to the National Institute of Mental Health, where she is a research fellow exploring translational approaches across multiple developmental disorders.

“My LEND experience was actually part of the reason I was offered this position,” Francis said. ICI Director Amy Hewitt invited the former LEND fellow to speak at the AUCD Conference in 2019. While in Washington, D.C., for the conference, Francis networked informally with a NIMH researcher, and that connection played a role in her recent hiring, Francis said. “I always say, you never know where an opportunity is going to come from.”

While at the U, Francis worked as a postdoctoral research associate in clinical autism research under the Converging Approaches to Neurodevelopment (CAN) Lab.

“Dr. Suma Jacob introduced me to the world of autism and to working with children, and I fell in love with the kids,” she said. “For me, the brain has always been the ultimate cool place. I’m fascinated by behavior and how the body reacts to its environment.”

Beyond the networking experience, Francis credits LEND with opening her eyes to the ultimate purpose behind her research experience, which has included neuromodulation and other clinical work.

“LEND gave me the human side of my research,” she said. “I’m still a scientist, but it made me sit back and understand that research is a circle. We need to respect the questions that our communities need to have answered.”

Conducting research that benefits communities directly is what keeps her at the bench.

“I’m not sure about my long-term career plans, but for now I still love doing the hands-on research and working with different teams,” she said. “I realize that as you move up, you often move further from bench research and don’t get to work with as many participants. I’m putting that day off. At NIMH, even as you become a principal investigator, they say you still get to stay in the science. I think that’s important.”

COVID-19 transitions: MRCI embraces change

January 19, 2021
Colleagues using digital tablet and working in industry.

When the pandemic forced day-service and employment providers to close abruptly in March, it decimated budgets and ripped away vital services for people with disabilities.

As restrictions on public life loosen a bit this month, however, some of those providers are staking their futures on reopening under a dramatically different service model—one that will take a village to succeed. 

Mankato-based MRCI, one of Minnesota’s largest providers, shuttered most of its seven facilities and cut its workforce from 450 employees to about 100, said Brian Benshoof, chief executive officer.

From those ashes, however, the organization is hatching a plan to provide nearly all of its services in the community, with the aim of more fully integrating people with disabilities into jobs and social situations. 

“After everything closed, we got the organization stabilized financially and it became clear that we had a golden opportunity to rebuild the whole organization,” said Benshoof, who said the organization is now back up to about 150 employees. “We already had a five-year transition plan to move to community-based services, so the philosophy became, ‘Let’s just do it now.’”

It was an exciting idea, but not without several challenges. Among them: convincing some families of people with disabilities that the move would ultimately enhance their loved ones’ lives, and convincing community businesses and public spaces to embrace the idea.

“We’ve done a lot of communicating with the Department of Human Services, agencies, and families to share this new direction,” said Tina Stofferahn, MRCI’s director of day services. “Some families are very concerned about this because their loved ones have been protected and safe in facility-based programs. We’re explaining there is dignity in taking risks, and great personal value and confidence building when you become an active member of a community.”

Those risks presented another challenge, Stofferahn said. Existing staff would have to be retrained in new job duties that focus on teaching new social, life, and employment skills, and community businesses and other organizations would have to open their doors to the idea.

Partnering with the Institute on Community Integration, MRCI has taken that first step. ICI provided training, videos, and other materials for MRCI workers in how to find and structure activities that match participants’ interests, and in helping participants build relationships in their communities. 

“We’ve helped create the training MRCI envisioned to assist them in this significant transformation,” said Danielle Mahoehney, an education programs specialist at ICI. “It’s exciting to think about how this shift will expand what’s possible in the lives of people with disabilities.”

Now, MRCI is reaching out to businesses, libraries, community groups, and personal networks to develop meaningful experiences. Its staff will plan daily activities for groups of four people with disabilities and an employee, and each group will travel in small minivans rather than large buses. Anyone interested in welcoming groups into their offices or events can get in touch with Stofferahn at kstofferahn@mymrci.org

“It will be a completely person-centered service,” Stofferahn said. “A specialist will pick up four people each morning and the groups will make their own plans based on their interests. It might be learning some skills in an employment setting, or learning how to camp, or just basic relationship-building experiences and safety issues. In a facility, you don’t have that ability to learn skills in a natural environment. We now have the staff trained and the vehicles ready to go; we just need the community to open.”

Opening the steeple: Race, disability, and faith

January 19, 2021
Lead pastor Lamar Hardwick, who has autism, speaking to his congregation at Tri Cities Church in East Point, Georgia.

Amid the outrage over the killing of George Floyd and others at the hands of police, discussions about racism – and to some extent its intersectionality with ableism – has filled talk shows, articles, and public debates. But where is the church?

A new discussion series sponsored by the American Association on Intellectual and Developmental Disabilities aims to find out. The webinar series, “Black Lives with IDD and Their Faith Communities: A discussion of the role of church communities in the lives of black and brown people with IDD and their families,” concludes at 2 p.m. Central time on Feb. 2. Register here.

The series was sponsored by AAIDD’s Religion and Spirituality Interest Network and co-sponsored by the Institute on Community Integration.

Lamar Hardwick, lead pastor at Tri Cities Church in East Point, Georgia, and author of the forthcoming book Disability and The Church: A Vision for Diversity and Inclusion, is among the webinar speakers.

“It’s difficult to have a real conversation about racial and ethnic diversity unless you talk about the largest minority group that exists, which is people with disabilities,” said Hardwick, who was diagnosed with autism spectrum disorder at the age of 36. “We know it’s right to say our doors are open to everyone, but we haven’t asked people who aren’t attending church what inclusion looks like to them.”

ICI’s Sarah Hall, currently serving as president of the AAIDD interest network, said organizers were moved by the death of Floyd to pose blunt questions and spur real change in religious organizations.

Herself a sibling of someone with multiple disabilities, Hall shared that her family had to change its church affiliation when her brother was asked not to return to Sunday school.

“We hope this webinar starts a conversation, and that people come away with ideas to try, knowing that they aren’t in this alone,” said Hall. 

Deborah Fisher, of Strategic Change Consulting in Washington, D.C., and a member of the AAIDD committee, was the lead organizer of the series.

Other speakers in the series include LaTonya Penny, senior pastor of New Mount Zion Baptist Church in Roxboro, North Carolina, and Luchara Wallace, director of the Lewis Walker Institute for the Study of Race and Ethnic Relations at Western Michigan University. All three speakers will lead a discussion about next steps at the concluding session on Feb. 2. Previous sessions can be viewed here.

To Hardwick, the most important step will be to train future religious leaders in inclusion.

“Nothing happens in a church that’s not important to the pastor,” said Hardwick. “I’d love to see disability inclusion be a part of the core curriculum that pastors are required to take. It should be at the heart of how we are training our leaders. Otherwise, we’ll keep spinning our wheels.”

New support for tele-outreach

December 18, 2020
Jessica Simacek, director of the TeleOutreach Center and manager of ICI’s Telehealth Lab, working in her lab.
Jessica Simacek, director of the TeleOutreach Center and manager of ICI’s Telehealth Lab, working in her lab.

The Richard M. Schulze Family Foundation has awarded a $2 million, multi-year grant to the University of Minnesota Foundation to support tele-outreach services through the Masonic Institute for the Developing Brain. ICI, as a MIDB partner, will lead the creation of the MIDB TeleOutreach Center over the next three years, bringing together clinical pediatric providers and developmental specialists to reach underserved communities around the state with convenient and cost-effective services.

MIDB is an interdisciplinary center dedicated to supporting healthy brain development and intervening early to address mental health and neurodevelopmental challenges such as autism, learning disabilities, substance abuse disorders, and other neurocognitive disabilities. 

“This forward-thinking gift provides a critical foundation for expanding intervention services throughout Minnesota for many years to come,” said ICI Director Amy Hewitt. 

Tele-outreach refers to a broad set of training, technical assistance, and intervention services delivered electronically to children, families, and professionals in the field. The Center will be housed in the new MIDB facility, now under construction at 2025 East River Parkway, Minneapolis.

“We’re leveraging technology and innovation to increase our reach and serve more children with neurodevelopmental disorders and behavioral health needs statewide,” said Jessica Simacek, director of the TeleOutreach Center and manager of ICI’s Telehealth Lab. “We’re building sustainable pathways and resources so more children and families in different regions of the state can access very high-quality, interdisciplinary intervention.”

Using secure, remote video communication technology, leading specialists will provide assessment, intervention, and support for young people with mental health and neurodevelopmental disabilities. The Center will also conduct remote training and coaching for health, education, and human services professionals, as well as families. The technology will allow investigators to conduct innovative research, collaborate with each other, and host community forums for creating better outcomes for children, young people, and their families.

“It’s going to be a great, one-stop shop,” said Adele Dimian, an ICI research associate also working on the project. “It’s exciting to collaborate across different fields as the University broadens its work in the field of autism and other disorders.”

As children with disabilities and their families face additional challenges due to the pandemic, the new facility will help improve access to intervention, Simacek said.

“We’re going to now be able to scale up a lot of promising work to address those barriers,” she said.

Renee Hepperlen, alumna: Making inroads to inclusion in Zambia

December 18, 2020
Renee Hepperlen.

More than 7 percent of Zambia’s children have disabilities, and nearly half have never attended school. Many lack health services and experience isolation and stigma in their communities.

Four the last four years, however, Renee Hepperlen (MN-LEND and Disability Policy and Services Certificate, 2011–12) has been part of a multi-disciplinary team working to train local nurses, therapists, and other professionals in infant and child development, early intervention, daily living skills, positive language around disability, and disease prevention.

Hepperlen is an assistant professor in the School of Social Work at University of St. Thomas. Partnering with faculty from St. Catherine University and the Catholic Medical Mission Board in Lusaka, Zambia, the team created the training as part of a grant from the GHR Foundation. The work concludes in early summer 2021.

Hepperlen’s contributions have focused on turning around the stigma of disability, which keeps many children isolated, out of school, and therefore unprepared to be contributing members of their communities as adults. Storytelling events in communities, plays featuring parents who discover their child with intellectual disabilities can, indeed, learn, and facilitated church discussion groups were among the projects. Other team efforts centered on assisting families to keep their children with disabilities at home rather than in congregate care and training direct support professionals in appropriate feeding and other daily living skills using available resources.

“The LEND program stressed multi-disciplinary work, and that emphasis has continued throughout my career,” she said. “It creates such a strong connection between skills and attitudes. As we trained future trainers, we were working on hard skills, but also on appreciating self-determination, so they would recognize the value and worth of people with disabilities.”