Where they are now: ICI reconnects with ADA fellows

July 15, 2022

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.”

New DSP survey

June 28, 2022

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.

Forum: Implications of closing institutions

June 28, 2022

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.”

MNLEND Alumni Update: Bryan Boyce

May 18, 2022

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.”

Alumni Update: Kamila Rollan

April 19, 2022

In March, Kamila Rollan was appointed to the Presidential Council for Youth Policy by Erlan Karin, the State Secretary of Kazakhstan.

Rollan, now a third-year PhD student at the University of Cambridge in the United Kingdom, was a 2017 fellow in the Americans with Disabilities Act (ADA) Anniversary Inclusive Education Fellowship Program. The University of Minnesota program was led by the Institute on Community Integration and the Humphrey School of Public Affairs, in cooperation with Arizona State University and several international partners.

The appointment came swiftly after a new government was installed in Kazakhstan in January, amid demands for more accountability in government, said Rollan.

In a public statement, Karin said the group includes public activists, scientists, entrepreneurs, and organizational leaders, who will contribute to the development of conceptual documents and practical recommendations for improving youth policy. They have already met twice and are now dividing into working groups to develop the recommendations.

“At this new stage in the development of our country, the Council will become an effective platform for the systematic advancement of the youth agenda,” Karin said.

Rollan said she brings a measure of gender diversity to the 29-member body, which is 70 percent male, as well as a perspective informed by her work in the disability and inclusion field, both as a founder of a non-governmental organization and as a student. Her in-process thesis explores how NGOs affect inclusive education.

As ADA fellows from Kazakhstan, Rollan and Sabina Ismailova developed an early framework that led to founding an NGO that provided educational support services to students with disabilities in inclusive settings in their home country. Due to the pandemic and other factors, the organization is now winding down, she said, but the families brought together through its formation are still keeping in touch and providing support to one another. The experience also informed her thesis work.

“Some of my respondents strongly believe that without NGOs, inclusive education wouldn’t happen, or it would take much longer to happen,” she said. “I employ systems thinking to promote a holistic vision for making NGOs’ work more visible. Inclusive education won’t really work unless we weave it into society, culture, and the workplace. It’s all part of one, big story.”

ICI projects shine at Research Day

April 19, 2022

ICI researcher Sarah Hall in front of the poster she co-authored, speaking with a visitor at CEHD Research Day 2022.

From studying the detection of autism in early childhood to an exploration of retirement for older adults with disabilities, ICI investigators shared their work to address inclusion across the lifespan at the College of Education and Human Development’s recent Research Day.

Autism Spectrum Disorder Prevalence in Minnesota, a poster presented in the Autism and Developmental Disabilities category, received a “People’s Choice” award, based on votes from attendees.

“We were humbled and grateful to receive this award from our CEHD peers,” said Jennifer Hall-Lande, who co-leads ICI’s ongoing study of Autism Spectrum Disorder prevalence. The poster was authored by Jeannette Sample, Amy Esler, Hall-Lande, Libby Hallas, Courtney Higginbotham, and Jenny Poynter. “Research Day is a great way to learn about the innovative research and work being done in our CEHD community, and it was wonderful to be back in person after two years away [due to the pandemic],” Hall-Lande said.

Another featured project, What Do Older Adults with IDD Think About Retirement? shared data from interviews that found participants were typically pushed into retirement by health issues or negative experiences at work, so few were able to plan in advance. This research is now informing ICI’s work to modify the Australian Transition to Retirement program to the U.S. context.

“I really enjoyed how Research Day brought together people from different disciplines who have similar and intersecting interests,” said ICI’s Sarah Hall (pictured), who presented the retirement research along with ICI’s Lynda Lahti Anderson, Roger Stancliffe, and Julie Kramme. “I talked with an occupational therapist who showed great interest in what she and her colleagues could do to support people with IDD in retirement. The more I described their retirement experiences, the more practical ideas we identified for occupational therapists to help adults with IDD to prepare for retirement.”

Additional teams presented ICI’s work exploring how direct support professionals (DSPs) were affected by the COVID-19 pandemic, as well as racial disparities in DSP wages. ICI Director Amy Hewitt, along with Julie Bershadsky, Sandra Pettingell, Julie Kramme, and Jerry Smith, contributed to these projects, which included the largest survey to date of DSPs.

Charity Funfe Tatah Mentan and Darrell Peterson presented Improving Instruction: Innovative Approaches to Engage English Learners, Parents, and Teachers for Educational Equity. This work from the National Center on Educational Outcomes at ICI created practical approaches for engaging parents, caregivers, and teachers of students who are learning English as a second language. A multi-lingual toolkit available in audio and PDF formats was presented, along with online training modules emphasizing collaboration among students, families, and teachers when making decisions about accessibility features to ensure equity in education.

“There has to be synergy between home and school to provide the equity that is needed for children to succeed,” Funfe Tatah Mentan said. “Some parents of English language learners don’t always understand their rights and responsibilities around the accommodations their children are receiving.” She said the event helped spark several conversations with CEHD colleagues, graduate students, and others around the idea of increasing equity in the classroom.

“It was nice to be able to see a lot of students at the event as well,” added Peterson. “Their insightful questions, particularly from a few who plan to go into related fields, was a neat experience for us and helps keep this work fresh.”

Other projects selected for the day included What Do Teachers Know About the Accessibility Features for English Learners? by Yi-Chen Wu and Aparna Leena; and Shifting Tides in Medicaid-funded Supports for People with Intellectual or Developmental Disabilities: RISP FY 2018 Highlights, by Jon Neidorf and Sheryl Larson.

New Impact: Inclusive higher ed

April 19, 2022

The just-launched spring issue of Impact explores the state of inclusive higher education for people with intellectual, developmental, and other disabilities (IDD). Contributors include senior academic leaders in the field, heads of successful and emerging alliances and programs, and students and alumni, who share their college experiences.

“This issue of Impact captures our collective progress in a field that is growing but still under development,” said Meg Grigal, co-director of Think College and a senior research fellow at the University of Massachusetts Boston’s Institute for Community Inclusion. “It reflects how legislation can change lives, but not without hard work, vision, and holding true to inclusive values and high expectations for people with intellectual disability.”

Grigal served as an issue editor and author, along with David R. Johnson, University of Minnesota; Susanna Miller-Raines, Think College; and Beth Myers, Syracuse University.

Impact is the Institute’s flagship publication. Each issue explores a single topic of importance to people with IDD from a variety of perspectives. Overview articles by academic thought leaders and disability services practitioners discuss critical progress and needed resources in the field. Profiles of successful or promising programs and how-to articles highlight the practical aspects of serving the disability community. And personal stories share insights directly from people with disabilities themselves or their families. Click here for a free print or digital subscription.

The issue includes an article by the current and a past chair of the National Coordinating Center’s Accreditation Workgroup on progress the field is making toward development of critical standards that will help students and families choose higher education programs.

Other articles share resources for exploring college options, strategies for getting inclusive programs off the ground, and recommendations for making programs more inclusive for students with IDD. More than 6,000 students with intellectual disability are estimated to be enrolled in postsecondary programs today.

Among several students who share their personal stories, readers will meet Hope Hansen, a sophomore in the Riverhawks Scholar Program at Northeastern State University in Oklahoma. Hansen’s story speaks volumes about the contributions students with disabilities can make to community life on campus.

“All this experience has made me want to help people realize they are going to be OK at college, whether they have disabilities or not,” Hansen shares in her article. “Some people just don’t have friends in high school, and I tell them if they need anything, I’m there. I want to be the person who says, ‘I’ve got you.’”

Together, the articles in the issue celebrate the field of higher education as a nexus for special education, rehabilitation, and disability advocacy, Grigal said.

“Combining the greatest strengths of these fields will create new and improved pathways for students with IDD,” she said. “Our field has the capacity for growth and the contributors to this issue demonstrate their commitment to improving both practice and outcomes.”

Telling disability stories through music

February 17, 2022

Music therapist Yue Wu (MNLEND 2019-20) is working on a second production of her show, Light in the Well, which weaves together symphony movements and the real-life stories of people with disabilities. The show debuted in October at MacPhail Center for Music, where Wu works as she pursues a doctorate in rehabilitation science at the University of Minnesota.

“The reaction was overwhelming,” Wu said. “We had volunteers record interviews with audience members after the show, and many were moved and clearly holding back tears on camera. They had come to be entertained, but left educated.”

Wu and her team created the experience as her MNLEND project, interviewing people with disabilities and their families about the difficult times and loneliness that can envelop a family living with disability. As she worked with families at MacPhail, she drew the analogy of being isolated in a dark well, but also noticed their ultimate resilience and joy.

Working with composer Phil Shorey, who created a six-movement symphony depicting the stages of grief leading to acceptance, Wu brought in four people with disabilities and their families at each movement, playing instruments, singing, verbally sharing their stories, or dancing to the score. The stage of acceptance is meant to represent the hope, or the light in the well, either coming from within individuals, or from society, or both. This fall, Wu will bring the show to the Landmark Center in St. Paul.

Wu expects to organize a second fundraising campaign to help defray the costs of the performance, including covering the cost of the musicians and other professionals working on the show. She has built a presence on several social media channels, including Facebook and TikTok .

“It’s a show about individuals sharing the story of themselves and their families, and how they come to where they are,” said Wu, a native of China who plans to work on global disability issues as her career develops. “The light is love, and hope.”

International forum: The future of outcome measurement

February 17, 2022

Global approaches for using outcome measures to enhance the human and civil rights of people with disabilities will be presented April 11 at a live and virtual forum co-sponsored by the Institute on Community Integration and the U.S. Department of Health and Human Services’ Administration for Community Living.

Measuring Outcomes of People with Disabilities: An International Forum will feature presentations from Julie Beadle-Brown of the University of Kent in the United Kingdom and Jan Šiška of Charles University in the Czech Republic. Other presenters include ICI’s Roger Stancliffe, professor emeritus at the University of Sydney, Australia, along with Renáta Tichá and Brian Abery. The host is ICI’s Research and Training Center on HCBS Outcome Measurement.

“Through this forum, we want to create a global vision for developing rigorous outcome measurements that lead to improved disability services and policies,” said Tichá. “These frameworks are a critical component of reducing the significant disparities in life outcomes between people with and without disabilities, and ensuring that the rights of people with disabilities are respected.”

A panel discussion will explore the different indicators, frameworks, and approaches used around the world to assess quality in disability service and policy contexts and propose improvements for the future.

Panelists will include Dorothy Hiersteiner and Stephanie Giordano from the Human Resources Research Institute, Shawn Terrell from ACL, Allan Heinemann and Anne Deutsch from Northwestern University, Carli Freedman from the Council on Quality and Leadership, Christine Linehan from University College Dublin (Ireland), and Anne Rosken from University of St. Gallen (Germany).

The live event will be held in ICI’s new home at the Masonic Institute for the Developing Brain, 2025 E. River Parkway, Minneapolis.

Disability rights: Storytelling in the Congo

February 16, 2022

Under a U.S. State Department grant aimed at combatting persistent human rights abuses in the Democratic Republic of the Congo, the Institute on Community Integration last month trained people with disabilities and non-profit organizations in the central African nation on advocacy strategies, including the use of radio and social media to raise awareness about disability rights.

Working with the Kadiwaku Family Foundation, ICI’s Macdonald Metzger and Lynda Lahti Anderson offered training in social and broadcast media storytelling for about 100 individuals with disabilities, and in strategies for cooperatively advocating for the rights of people with disabilities for representatives of more than 60 community, governmental, and human rights organizations. The trainings were held in Kisangani, a city of about 1.2 million people.

“With very few resources, there is actually quite a lot of disability advocacy work going on there,” Anderson said. “Our message was focused on how to support a community of practice and have organizations work together to build a sustainable structure.”

The DRC ratified the United Nations’ Convention on the Rights of Persons with Disabilities and its laws offer education and employment protections, but substantial discrimination and stigma remain.

“We focused on skills that people with disabilities can use to write scripts, research content, conduct interviews, and essentially, tell their stories at the grassroots level, using radio and social media, to build awareness of disability rights,” Metzger said. “In the future, we’d also like to meet with editors and other media outlet managers to talk about the need for more disability coverage.”

As part of the two-year State Department project, the group earlier surveyed 1,000 people in the region about attitudes and behaviors toward people with disabilities. They expect to repeat the survey later this summer to determine if the trainings helped increase awareness of disability rights. In the initial survey, nearly 83 percent of respondents said they feel uncomfortable when they see a person in a wheelchair. Nearly 50 percent said they have the impression that people with disabilities are being punished for something they have done.

“We were also fortunate to have Iréne Esambo, the DRC minister of human and disability rights, attend some of the events. She’s the first person to hold this office, and she has some ambitious plans to improve things in the region,” Metzger said.

Anderson noted there is power, too, in smaller steps.

“The woman who runs the hotel where we stayed came to the training and said she had never thought about accessibility features because she believed people with disabilities wouldn’t be able to afford to stay in a hotel. After the sessions, she said she would be incorporating accessible features into an expansion she’s planning. And an English professor we hired as a translator said he would be volunteering to help increase the enrollment of students with disabilities in schools. It just takes a couple of people to start a ripple.”

Sensory-friendly vaccine sites

February 1, 2022

Maren Christenson Hofer (MNLEND 2018–19) pictured at an earlier event with her autistic son, Simon. He was vaccinated against COVID-19.

Several of the Institute’s MNLEND program fellows—current and past—have played key roles in bringing sensory-friendly vaccine clinics to children and families in the Minneapolis-St. Paul area.

Fatima Molas (MNLEND 2016–17) and Maren Christenson Hofer (MNLEND 2018–19; pictured at an earlier event with her autistic son, Simon) of the Multicultural Autism Action Network, and Ellie Wilson (MNLEND 2010–11), executive director of the Autism Society of Minnesota, collaborated with several other partners to create COVID-19 vaccination clinics with quiet rooms, music therapy, a drive-thru option, and distraction techniques.

“At most vaccine events, the goal is getting as many shots in arms as possible,” said Hofer. “Our primary goal was creating the best possible experience and to bring some compassion and understanding to children and families, who may have experienced past trauma or have ongoing anxiety in these settings.”

Raniya Yiman and Brittany Miller, current MNLEND fellows, and Alicia Zhang, an ICI graduate assistant, served as volunteer staff at the clinics.

“It was very meaningful work,” Yiman said. “I was really happy to be able to volunteer in this way and talk to the families.”

Hennepin County Healthcare and Spero Academy partnered with the organizations on the most recent clinics in December and January at Spero in northeast Minneapolis, which drew more than 300 participants. The autism organizations held two smaller clinics last summer in St. Paul.

“We believe everyone deserves access to healthcare,” Hofer said. “Offering this clinic is one way we can make sure all members of our community can stay safe during the pandemic. We offer a little more patience, flexibility, and an extra dose of compassion for anyone who might need it.”

Hofer said families expressed gratitude at the events.

“We had a really nice response. It was a tough day emotionally for everyone, but to see the relief and gratitude of families who had gone to other events and weren’t able to complete their vaccines, to see them feeling supported and not judged for needing some extra help was really nice,” she said.

ICI welcomes visiting international scholars

February 1, 2022

Brian Abery and Renata Ticha with international scholars in ICI's new home at the Masonic Institute for the Developing Brain in Minneapolis. — Brian Abery and Renata Ticha with international scholars in ICI’s new home at the Masonic Institute for the Developing Brain in Minneapolis.

Several scholars from Europe, Australia, and central Asia are visiting the Institute on Community Integration (ICI) as part of a broad-based exchange aimed at increasing the inclusion of people with disabilities around the globe.

The visitors, on campus for varying lengths of stay, are from the Czech Republic, Spain, Kazakhstan, and Australia, and are working with ICI’s Global Disability Rights and Inclusion program area, led by Brian Abery and Renáta Tichá (pictured at left).

Roger Stancliffe (not pictured), professor emeritus at University of Sydney, joins ICI as a senior research associate. He is working with an ICI team that is studying the transition to retirement process and served as an editor for the Institute’s most recent Impact issue focused on aging and retirement.

Jan Šiška (third from right), a Fulbright-Masaryk scholar from Charles University in Prague, Czech Republic, is building relationships with U.S. disability organizations and gathering information about programs that assist students with disabilities in their transitions to community life after high school. He’s also building a framework for assessing the quality of social services across Europe.

“The work also involves studying [ICI’s] research and project management methods and learning broadly about the American disability culture,” Šiška said. He will collaborate with Tichá and Abery on specific post-secondary education and independent community living objectives as part of grants their respective institutions have received from the U.S. and Czech governments.

“We are trying to assess to what extent transition programs and education for young adults help them to become active citizens – working in the community and voting, for example – and how we can work together to build a framework for teachers to enhance their expertise,” Šiška said.

Cristina Cardona Moltó (second from right), a professor at the University of Alicante in Alicante, Spain, is developing an index that will be used to assess the quality of inclusive special education instruction.

“I’m very grateful to Renáta and Brian for opening the doors of ICI for this work,” she said. “We have different traditions in our respective countries, so having the opportunity to be here and observe the work you do will help us be successful in creating instruments for measuring the effectiveness of how we are preparing teachers for inclusive education.”

In turn, Tichá and Abery said the international visitors bring fresh ideas and different perspectives to their work in improving the lives of people with disabilities.

“We all come from countries with quite different disability policies and practices, but it has actually been smoother than we thought to find areas where we could collaborate,” Tichá said.

Abery said the work is certainly easier when colleagues are sitting across a table instead of communicating virtually, but it goes deeper than proximity and language translation.

“It’s working through concepts that are slightly different in each country but knowing that the ultimate goal is the same, which is to enrich the possibilities for people with disabilities,” he said.

One example is the time the group spent in discussing the different perspectives of active citizenship and what that means to and for people with disabilities.

“My goal in being here is to understand the methods and evidence-based practices in research within inclusive special education because this is new for my country,” said Dinara Yertargynkyzy (extreme right), a senior lecturer at Al-Farabi Kazakh University in Kazakhstan. “Our education systems have been segregated in the past, so I’m grateful for this opportunity to observe.”

Šárka Káňová (third from left), a researcher and senior lecturer in disability studies and inclusive education at University of West Bohemia in Pilsen, Czech Republic, leads a research team focusing on the availability and quality of community-based services for people with intellectual disability and autism in the Czech Republic.

“My time at ICI has provided excellent opportunities to observe ongoing research projects and relate them to other work I’ve studied throughout the European Union with the Erasmus program,” she said. Erasmus is the EU’s program supporting education, training, youth, and sport, with an emphasis on social inclusion, environmental and digital advocacy movements, and promoting young people’s participation in democratic life.

Stancliffe, who has worked extensively with ICI since the 1990s, said international exchanges have made a substantial difference in the disability research infrastructure.

“There was nothing like ICI in Australia when I first began visiting here in the ‘90s,” he said. “Now, disability research centers exist in Australia and some are very strong, a direct result of university-affiliated programs in the United States and the learning that came from them. The scale and rigor of national U.S. research and the self-determination instruments that have been developed and shared are important. Also, what really impressed me in the ‘90s was that people in the United States with disabilities were working alongside fellow researchers, and today that is much more common in Australia, which is an important change as well.”

Innovation created from spending time with other cultures is something that is still being repeated today, Abery said.

“In the United States we often focus on resources and money,” he said. “Working with international colleagues, we see how innovation doesn’t always have to be based on that. Looking at things from a different perspective stimulates everyone’s thinking.”

ICI expands workforce consulting service

November 17, 2021

Amy Hewitt and John Smith. — ICI Director Amy Hewitt and colleague John Smith.

Responding to dire shortages in staff supporting people with disabilities, the Institute on Community Integration has expanded its national workforce consulting work, leveraging its longstanding position as a key thought leader in the disability field.

Direct Support Workforce Solutions, led by ICI Director Amy Hewitt, will combine organizational analysis and in-depth training for direct support professionals (DSPs) into a comprehensive strategy to help organizations recruit, train, and keep their best direct support professionals, supervisors, and agency leaders.

“As states allocate federal emergency funds to address the staffing crisis that worsened during the COVID-19 pandemic, this offering represents an investment in the agency workforce that goes deeper than temporary solutions,” said Hewitt. “ICI has been conducting research, developing tools, and refining a data-driven consulting process for more than three decades. Direct Support Workforce Solutions brings our research, development and consulting expertise together to meet the needs of state agencies and individual organizations as they struggle to meet demand for long term services and supports and create effective policies and practices regarding the direct support workforce.”

ICI’s Barb Kleist and Kristin Dean will lead the operations of Direct Support Workforce Solutions, and Kleist serves as a lead consultant for the group, along with more than a dozen experts in disability policy and workforce development.

“We bring evidence-based practices and craft solutions that help organizations build stronger workforce strategies to address recruitment and retention,” Kleist said. “This effort brings our decades of experiences, resources, and tools into a single, accessible space.” Consulting services begins with a rigorous discovery process to gather data on an organization’s workforce, from hiring and retention policies and practices to overall workforce culture.

Conducting surveys, self-assessments, stakeholder interviews, focus groups, document reviews, and a communications audit, the team then analyzes the findings and develops an action plan. Data management, recruitment, retention, and policy strategies are then implemented in a framework unique to each organization’s capacity. Targeted services include consulting and coaching sessions, options for new products such as realistic job previews and public service announcements, a customized recruiting plan, employee training and development, and more.

Already at crisis levels, turnover and vacancy rates worsened when the pandemic began and remain in emergency status. Early in 2020, the Institute quickly partnered with the National Alliance for Direct Support Professionals to initiate the largest-ever survey of the direct support workforce as it navigated the global pandemic. That report, and subsequent follow-up reports, documented increases in already-high turnover rates, job stress, and risk that DSPs have taken on during this emergency, raising public awareness about the necessity of these professionals and advocating for higher wages and other benefits.

Almost half of DSPs leave their jobs within the first year, and most within the first six months. Vacancy rates remain high, and demand for services is growing fast, particularly as more people with disabilities move from congregate care facilities to community-based service options. Staff shortages affect the quality and availability of essential services for individuals with disabilities, and greatly determine whether those individuals will participate fully in their communities.

Amidst these dire national trends, ICI has a long track record of expertise in assisting people with disabilities and their families find and retain quality DSPs, and in elevating the skills and professionalism in the field as it evolves. Across nearly every U.S. state and several regions abroad, the Institute has provided technical assistance, training, evaluation, and consultation to government agencies and provider organizations. ICI researchers have authored and edited hundreds of publications, including textbooks, reports, magazines, briefs, and newsletters.

More than 90 peer-reviewed journal articles have been published since 2012, and DirectCourse, the premiere online training curriculum for direct support workforce developed by ICI with partner Elsevier, has trained millions of DSPs, improving the quality and stability of supports for people with disabilities.

ICI also has produced award-winning films bringing attention to the underappreciated and underfunded work of DSPs. Among them are Invaluable: The Unrecognized Profession of Direct Support, Direct Support: A Realistic Job Preview, and Higher Ground: The Dedication of Direct Support Professionals During and After Hurricanes Katrina and Rita.

Frontline Initiative, a newsletter covering issues important to DSPs and their supervisors, is produced by ICI and the National Alliance for Direct Support Professionals, a longtime partner.

“They have, over decades, provided the tools for advocacy and change that result in measurable solutions,” NADSP President Joe Macbeth said of ICI’s team. “Using their research-based methods, ICI supports organizations in developing effective strategies that address long-standing workforce challenges.”

To learn more, visit Direct Support Workforce Solutions at dsworkforcesolutions.com.

Families love self-direction, but what lies ahead?

November 17, 2021

People with disabilities and their families feel empowered by public programs allowing them to direct their own service dollars, but the complexities of the programs can be daunting and succession planning is critical.

In the first known study to explore the sustainability of self-directed public services across major life transitions, the Institute on Community Integration and Independent Support Services, Inc., Monticello, New York, surveyed 413 people, most of whom identified themselves as a “natural support,” or someone providing unpaid support to a person with disabilities who directs his or her public services.

“We’ve known satisfaction levels with self-direction is strong, but until now we didn’t have this kind of data to show policymakers. Now, we have the data,” said Alan Kulchinsky, founder of ISS.

The report, 2020 Evaluation of Experiences with Self Direction in New York State: A Focus on Sustainability, found that more than 90 percent of respondents listed a better quality of life, feeling empowered, and having flexible services that meet their specific needs as key benefits of self-direction.

“Who doesn’t like choice?” said Shari Serchuk, of Jericho, New York, pictured with her son, Ryan, who is autistic. Self-directed services allow Ryan, 26, and Shari, his representative, to choose the types of public services he needs and to hire and train his support staff, within certain guidelines. It’s an alternative to traditional agency-provided services, and its use is growing.

“We wouldn’t have the same quality of life” without the choice and control self-direction gives them, Shari said.

Just because it was an easy decision, however, doesn’t make it simple. Recordkeeping duties and dealing with staff issues that an agency in a typical arrangement would handle takes a big outlay of time for the support person, such as a parent. In the study, respondents cited paperwork, staffing, and adapting to changes in service rules as top challenges.

Beyond the immediate challenges, respondents also expressed concerns about passing their responsibilities on when they die or are otherwise no longer able to manage their roles. About 40 percent of respondents said siblings would not be available to provide supports.

“There was a lot of fear and uncertainty about the future, but also a lot of hope that things will work out even if we can’t see the solution today,” said Libby Hallas, co-director of the study and an ICI project coordinator.

Ryan and Shari are both understandably anxious about the longer-term future, but said their strong family bonds give them confidence.

“It would be a difficult adjustment to get used to, but I get along well with my family and they understand my needs,” Ryan said.

Some support people said they are already building a team approach to succession, creating a network of paid and unpaid support people to handle what used to be one parent’s role.

Shane Winkler, a self-direction coordinator for ISS, helps bridge some of the gaps for people with disabilities who no longer have parents supporting them. He and Kulchinsky are working to expand the duties, and corresponding hourly rates, of these professionals. They also point to the need for better housing options that can bring the principles of self-direction to a bigger swath of the population.

“Self-directed services have become a key component of the disability services landscape and represent both a cost-effective and an important component of maintaining an individual’s self-determination,” said Jennifer Hall-Lande, co-director of the study and an ICI researcher. “As the population ages, we must find ways to sustain these services across life transitions and the lifespan.”

One of Ryan’s sisters has indicated she would like to help, but Shari says it’s hard for anyone to understand the level of commitment required to replace a parent. Shari stayed at home when Ryan was in school, and is only now working part time.

“Whenever you think you have everything in place, things happen. Someone calls in sick or they can’t drive today. There always has to be a backup.”

ICI moves to MIDB

October 19, 2021

The Institute on Community Integration has begun its move to the Masonic Institute for the Developing Brain (MIDB), ushering in a new era of collaboration across the University of Minnesota designed to advance brain health in support of each person’s journey as a valued community member throughout their lives.

ICI, which brings more than 35 years of disability research, advocacy, and education/training, joins researchers, clinicians, and specialists from the University’s Medical School, M Health Fairview, and the College of Education and Human Development at the new 116,000-square-foot building, 2025 East River Parkway, Minneapolis.

“As an organization, we actually outgrew our space in Pattee Hall in the early 1990s, and the opportunity to now have fully accessible space that encourages collaboration with colleagues and that lets us welcome community partners is the culmination of our collective work over decades to make life better for people with disabilities through our research and its influence on changing policy and practice,” said Amy Hewitt, director of ICI.

Named in recognition of a gift from Minnesota Masonic Charities, MIDB officially opens Nov. 1, offering collaborative interdisciplinary research, early neurobehavioral and mental health assessment, innovative targeted interventions, informed policy-making, compassionate advocacy, and community engagement and education.

“Learning about the different ways our colleagues think, and the context they bring to their work, will help us break down barriers and make our work more relevant to the community,” said Damian Fair, University of Minnesota Medical School Redleaf Endowed Co-Director, MIDB. “Once we begin digging into how we approach care for people with disabilities, we see some of the old labels pitting the medical and social models against each other are not accurate and that both approaches have already been coming together. The hope is that by breaking down walls and creating safe spaces to talk about different approaches, we’ll improve all of the ways we work for families navigating the critical issue of brain health.”

While ICI and the other occupants of the MIDB building will retain their existing names, organizational structures, and research interests, their proximity in the space is designed to foster new collaborations, share resources, and spur new research and service delivery approaches.

“Access is a hallmark of equity and inclusion, not only regarding access to space, but to resources, opportunities, information, and discoveries,” said Michael Rodriguez, CEHD dean. “ICI has long led the way in creating access, and through enhancing collaborations with the Medical School, we will expand that legacy with new energy in MIDB.”

MIDB will be composed of several independent research cores, including TeleOutreach, that will provide support and expertise in neurodevelopmental research, integrated data collection, and analytical and intervention services under one roof.

One collaboration already underway is the MIDB TeleOutreach Center, directed by ICI’s Jessica Simacek and Adele Dimian, associate director. The center was created under a philanthropic gift from the Richard M. Schulze Family Foundation, providing research, training, and technical assistance through innovative and secure technology to address barriers to care for children, youth, families, and professionals. Under a new $600,000, three-year grant from the U.S. Department of Health and Human Services, researchers from ICI and the Medical School’s Department of Pediatrics will conduct a large-scale, randomized control trial assessing intervention and diagnostic services delivered via the TeleOutreach Center to families awaiting formal autism spectrum disorder evaluation or intervention.

“The TeleOutreach Center is one of the early, exciting collaborations within MIDB,” said Simacek. “The physical space and technology are scaled up from what we have previously used to do this type of work, and it is already allowing us to welcome more trainees, fellows, students, community collaborators, and, ultimately, families, to be connected and engaged, regardless of where they are located.”

ICI’s Minnesota Leadership Education in Neurodevelopmental and Related Disabilities (MNLEND) Program is another existing ICI program that already has fostered deep connections across more than 16 academic disciplines at the University, Hewitt said. Each academic year, a cohort of MNLEND fellows comes together under funding from the U.S. Maternal & Child Health Bureau to develop knowledge, skills, and attitudes to make informed, committed action in the areas of neurodevelopmental and related disabilities.

Looking forward, Hewitt said, advances in the fields of both medical and social policy are critical to understand together.

“In the past we made assumptions about how clinicians, physicians, and bench scientists think and act, but we don’t really know,” said Hewitt. “They have the same ultimate goal we do, which is that we want people with disabilities to have good lives. Today’s clinical advances in holistic medicine are just one example of a whole new way of looking at our work. And if we don’t really know what’s going on at the clinical level, we can’t change policies and practices.”

Jennifer Hall-Lande, who leads ICI’s work in autism prevalence data and early intervention, serves on the MIDB executive council, along with Hewitt.

“I’ve been waiting my entire career for an opportunity like this to leverage the strengths of the social model of disability with the clinical side,” she said. “Disability is a natural part of the human continuum, and I bring that perspective to my clinical work. It’s up to us to take this opportunity and learn from each other and grow and innovate.”

Future collaborations leveraging the diverse expertise that will inhabit MIDB are still to be created, both Hewitt and Fair said.

“What struck me as we toured the building was how a family coming through the clinic door could potentially encounter our TIES resources for parents of a child with a more significant disability, and they may want to begin a path towards educating their child in a more inclusive setting in their local school, or have started on that path and need help,” said Kristin Liu, principal investigator for the TIES Center, the national technical assistance center on inclusive policies and practices in K-8 schools.

Sheryl Lazarus, director of the National Center on Educational Outcomes at ICI, said that team is also interested in future collaborations at MIDB.

“The NCEO team looks forward to discussing the needs and characteristics of children with autism and other disabilities with clinicians and families as we strive to make assessments used for accountability and other purposes more accessible,” Lazarus said.

In a December 2020 CEHD Connect article, former Dean Jean Quam predicted that MIDB would be one of the most exciting partnerships in the history of the college.

“It’s unique that a college of education would partner with a medical school and that we would look for strengths that we have and the things we have in common,” Quam said, adding that ICI’s history of interdisciplinary outreach would serve as a model for collaboration at the new institute.

“Viewing disability as a unique difference rather than a problem to be solved is a foundational aspect of ICI,” Hewitt said. “Our approach to supporting people with developmental and neurodevelopmental disabilities throughout their lives will inform the work of MIDB and create more inclusive communities for many years to come.”

Smith wins Kennedy award

September 17, 2021

On September 13, the National Alliance for Direct Support Professionals (NADSP) presented the John F. Kennedy, Jr. Award for Direct Support Workforce Advocacy & Leadership to Jerry Smith, ICI’s marketing and business development manager, who has directed dozens of films about community living for people with disabilities. In a statement coinciding with the organization’s annual conference, NADSP President and Chief Executive Officer Joseph Macbeth evoked the Kennedy family’s legacy of supporting disability issues through informed public policies and strategies that strengthen the role of direct support workers.

“We name this prestigious award after our founder, John F. Kennedy, Jr., and bestow it upon those who have dedicated their careers to upholding this noble vision,” Macbeth said.

Smith’s documentary and educational media projects have explored media bias in mainstream coverage of disability issues, created awareness about autism for diverse communities, chronicled DSPs’ critical contributions to people with disabilities in the aftermath of Hurricane Katrina, and told countless other stories that have led to greater inclusion of people with disabilities in their communities.

Using robotics to add jobs

August 18, 2021

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.

Beyond quotas: Making work meaningful in Japan

December 18, 2020

ICI’s Renáta Tichá, principal investigator, and Brian Abery, co-principal investigator (pictured second and third from left), with local and international colleagues in Bhutan in 2019. The Bhutan project, which continues into 2022, promotes meaningful work and social inclusion for Bhutanese youth and young adults with disabilities. The Japan project has a similar mission, serving transition-age youth, young adults, and adults with disabilities.

Japanese companies are required to staff about two percent of their workforces with people with disabilities, but many individuals remain unemployed, underemployed, or stuck in jobs for which they are ill-suited.

In a new collaboration with U.S. and Japanese universities and Sega Sammy Holdings Inc., ICI’s Global Disability Rights and Inclusion group will study these gaps and create customized tools that promote meaningful employment and the social inclusion of people with disabilities in Japan.

The project, funded by the U.S. Embassy, Tokyo, is called Making Employment Meaningful for People with Disabilities: A US-Japan Partnership.

ICI’s Renáta Tichá, principal investigator, and Brian Abery, co-principal investigator, will work with academic partners University of Wisconsin-River Falls, Hiroshima University, and University of Tokyo, as well as Sega Sammy, a large, integrated entertainment company that is interested in further developing its hiring program for people with disabilities.

“We’re trying to build inclusive education throughout the world, but what happens to students with disabilities after they leave school is also of critical importance,” Tichá said. “By partnering with employers and schools, we are building expertise and materials that will help people with disabilities and their families access better opportunities.”

A key component of the work will be to more fully develop the concept of self-determination, or the ability of people with disabilities to control aspects of their lives that are important to them, in Japan.

“Self-determination has been introduced in Japan, but the concept is a little different there,” said Satomi Shinde, a professor at University of Wisconsin-River Falls. “We’re excited to see a company like Sega Sammy being interested in true inclusion and in making employment more meaningful to people.”

In addition to making workplaces more inclusive, the efforts also have a business case. Finding ways to unlock unique skills, rather than simply training all workers with disabilities to do repetitive tasks, has broad implications for companies as they seek greater efficiencies through advancing technologies.

“In our previous work in eastern Europe we met a mother of someone with an intellectual disability who approached every company in her city until she found an employer willing to hire her daughter for a skilled position. Six months later the company came back to the mother asking her to introduce them to more workers like her daughter,” said Abery. “Customized employment is about getting people to the point where employers can see through the disability to the person and their gifts and capacities.”

That recognition becomes even more important as Sega Sammy and other large employers weather the economic storm created by the pandemic, Abery said. As more companies grapple with job cuts this year, he said, the ones that have focused on developing a broad spectrum of talent will be the ones with the most productive workforces.

The project officially begins Feb. 1, and will include interviews and focus groups in Japan to determine the areas of greatest need. Two fact-finding visits, one in Japan and one in Minnesota, are also planned as a way to expose Japanese educators and others to customized employment programs in the United States. Eventually, the group expects to publish Japanese-language materials for educators and employers.

“Building this area of expertise and sharing these materials is important for ICI’s Global Disability Rights and Inclusion area, and will lay the groundwork for future partnerships and projects,” Tichá said.

DSP Survey: More hours and risk, not more pay

October 27, 2020

Direct-support professionals (DSPs) are working more hours due to COVID-19, but few are getting higher hourly rates to compensate for the added health risks of the pandemic, a survey from the Institute on Community Integration and the National Alliance for Direct Support Professionals shows.

The survey of nearly 9,000 DSPs—conducted April 23 through May 27 and believed to be the largest-ever sample of the DSP workforce—found that just 24 percent are receiving extra pay due to infection risk.

More than half of those surveyed said they are working more hours, including 25 percent who reported working more than 16 extra hours per week compared with their normal shifts. Nearly three-quarters are the primary wage earners in their household, with an average wage of $13.63 per hour before the start of the pandemic. This wage is higher than the national average of $12 per hour due to the tenure of those who completed the survey.

Many said they know someone personally who has left the profession this year. Of the 42 percent who knew someone who has left, nearly 60 percent said the reason was fear of becoming infected or a lack of childcare.

“These findings underscore the dire need for higher wages, credentialing programs, and funded protection measures for ongoing and future waves of the pandemic,” said Amy Hewitt, ICI director. “DSPs must be universally recognized as essential workers and have access to protective equipment to do their jobs.”

More comprehensive safety training on public health crises for both DSPs and people with disabilities are needed, she said, citing survey findings showing that 27 percent of newly-hired DSPs were not getting typical orientation and preservice training.

Plans for a six-month follow-up survey are underway, with results expected early in 2021. Read the current survey results.

Frontline Initiative: Making a career in direct support

October 27, 2020

They are paid like fast-food workers, perform duties comparable to highly-trained health professionals, and are asked to coach and inspire people to take on active roles in their communities.

Frontline Initiative: Making a Career in Direct Support, published in September, explores what keeps direct support professionals (DSPs) working in the field and illuminates the shift from thinking about the work as a job to considering it a career.

FI editors Julie Kramme and Chet Tschetter see the issue as a call to action to DSPs to lift their voices about the low pay, low visibility, and low respect they endure. It features personal reflections from DSPs themselves, calls for professional credentials, and practical tips.

“This edition has about twice as many articles as usual, and that is because of the enthusiasm regarding the topic,” Tschetter said. “Authors include DSPs, self-advocates, family members of people who accept support, and professionals in the field.”

The issue provides DSPs with clear guidance on how to tell their story, Kramme said, and is a call to action to have their voices heard.

“We really hope that this issue is a helpful tool for DSPs that shares the career experiences, continued education, and training that DSPs are using to build a solid career foundation,” she said.

Among other authors in the issue, Skylar Smith shares why she got into the profession in South Dakota, and how she tries to educate as many people as she can about the rewards.

“I want others to see that my job is important. I want them to understand the rights of the people we support. I aim to gently broaden people’s perspectives,” she writes. “They don’t know what I know about people with disabilities: that when they receive high-quality support, so many things are possible.”

Another article, by Joseph M. Macbeth, president and chief executive officer of the National Alliance for Direct Support Professionals, explains the ongoing effort to establish a professional standard occupational code. The NADSP has an online petition via change.org calling for such a classification.

Macbeth also calls for more support for DSPs working through the pandemic.

“DSPs are tired, frustrated, and traumatized. Now, more than ever before, they need attention, support, and relief,” he writes. “If anything, COVID-19 has lifted the veil on a decades-long systemic failure to support the most important resource in the disability services sector—the director support workforce—that has been neglected for far too long.”

CEHD News people with disabilities

CEHD News people with disabilities