CEHD News ICI

Building Family Resiliency: a new podcast for early childhood professionals

June 21, 2022
Deborah Ottman
Deborah Ottman

A new podcast aims to support professionals who work with young children and their families by providing accessible information about child development and family relationships. The podcast, entitled Building Family Resiliency: Community Voices, Community Perspectives, is the result of a collaborative effort by Deborah Ottman, professional development coordinator at CEED, and Jennifer Hall-Lande, PhD, research associate at the Institute on Community Integration and CDC Act Early Ambassador to Minnesota. The podcast grew out of a desire to address the additional stressors that Minnesota families have faced during the COVID-19 pandemic. These stressors, say Ottman and Hall-Lande, may impact the ability of families to build resiliency.

Jennifer Hall-Lande
Jennifer Hall-Lande, PhD

Building Family Resiliency was funded by the Centers for Disease Control and Prevention (CDC) as part of their Learn the Signs Act Early initiative, which encourages families, communities, and organizations to screen children for potential developmental delays early on. Learn the Signs Act Early also offers a wealth of free developmental tools for parents and professionals.

For each episode of the podcast, Ottman interviewed one or more experts or helping professionals from different communities and early childhood fields. Listeners will hear from these guests about different facets of resiliency, from the science of brain development to self-care for child care providers. They will learn about what resiliency can look like across the richly diverse cultures and communities that make up our state. And they will gain information on how adults can best support the healthy development of the children in their lives.

“It was a privilege to sit down with researchers and professionals from different fields, all of whom have children’s wellbeing at heart, and talk about the concept of resiliency,” says Ottman. “My hope is that listeners will find the podcast format to be an easy, enjoyable way to access the information that our experts shared.”

All nine episodes of Building Family Resiliency are available to stream on the Institute on Community Integration’s MN Act Early website and on CEED’s YouTube channel.

Episode 1: “Welcome to the podcast!” with Deb Ottman and Jennifer Hall-Lande, PhD

Episode 2: “What contributes to building resiliency in early childhood?” with Anne Gearity, PhD

Episode 3: “Resiliency and early childhood development” with Alyssa Meuwissen, PhD

Episode 4: “Learn the Signs, Act Early and Help Me Grow: joined links in the resiliency chain” with Jennifer Hall-Lande, PhD, and Anna Paulson

Episode 5: “Filling the resiliency well: childcare providers caring for children, families and themselves” with Priscilla Weigel and Palm Walz

Episode 6: “Community voices, community perspectives: building resiliency in the Latino community” with Andrea Castillo

Episode 7: “Community voices, community perspectives: building resiliency in the Hmong community” with Julie Li Yang and Bao Vang

Episode 8: “Community voices, community perspectives: building resiliency in the African-American community” with Andre Dukes and Sierra Leone Williams

Episode 9: “Community voices, community perspectives: building resiliency in the Native American community” with Karla Sorby Decker

“We’re really excited to share this new resource with early childhood practitioners as well as parents,” says Hall-Lande. “I was delighted to be interviewed for Episode 4, which relates to my work on Learn the Signs Act Early. In that episode, we talk about the importance of screening for developmental delays such as signs of autism spectrum disorder. The science shows that the earlier we catch those signs and intervene with kids, the better the outcomes for kids and their families.”

“Both CEED and the Institute on Community Integration have a shared purpose of supporting the helpers who work with children and families,” adds Ann Bailey, PhD, director of CEED. “This podcast is a new way of providing support, and it’s also a way of saying to that community of helpers: we see you, and we value the work you are doing.”

Listen to the podcast.

Telling disability stories through music

February 17, 2022
Yue Wu.

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
Logo of the Research and Training Center on HCBS Outcome Measurement.

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.

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.”

TIES Center launches belonging guide

November 17, 2021

What would happen if students with varying abilities weren’t just welcome in classrooms, but actually needed? They would create schools that aren’t merely inclusive, but where everyone belongs. 

Such is the vision behind a new guide from the TIES Center at the Institute on Community Integration, Creating communities of belonging for students with significant cognitive disabilities.  

Created in partnership with Vanderbilt University professors Erik Carter and Elizabeth Biggs, the free guide for schools helps them reflect on what they are doing well and what areas need improvement on the road to the full inclusion of students with significant cognitive disabilities. Carter, a former high school teacher and transition specialist, is a widely published author whose research focuses on inclusion strategies. Biggs, a former special education teacher who has worked extensively with students using augmentative communication devices, studies the use of interventions in schools and communities. The authors also led a team to create a second resource on approaches for peer engagement that will be available on the TIES website later this year.  

“As students headed back to in-person school, we wanted to emphasize that school should be a place where every student belongs. While this is true for all students, it is particularly true for students with significant cognitive disabilities, who have often been segregated and isolated from their peers,” said Kristin Liu, TIES Center principal investigator. “We launched this resource in October, National Bullying Prevention Month, to bring attention to what schools can do to create a culture of belonging.” 

The guide covers nine dimensions of belonging, walking users through the steps required to have students with significant disabilities truly belong in a classroom, from being present (not sitting with a paraprofessional away from other students), to being needed and valued for their contributions to enrich the classroom.  

“We found that schools are wanting more resources to be able to reflect on what they are doing well and areas where they want to empower students to become needed members of their classrooms,” said Jessica Bowman, co-principal investigator of the TIES Center, a national technical assistance center on inclusive policies and practices in the kindergarten–8th grade education system. “They want to know what true belonging looks like.” 

TIES stands for increasing Time in the general education classroom, Instructional Effectiveness, Engagement with curricula and peers, and Support for Inclusive Practices from state and district education officials. 

Students with significant cognitive disabilities have made strides toward being present in the general education classroom, and toward being welcomed and known by their peers, Bowman said, but full acceptance to the point that these students are full contributors has been elusive. 

Schools can foster this level of belonging by providing leadership opportunities and skills training to succeed, connecting students with extracurricular activities, and involving them in service-learning projects, among other steps, she said. 

Want to start a conversation at your school about inclusion? Check out the Belonging Reflection Tool.

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
Ryan and Shari Serchuk.

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’s Impact focuses on siblings of people with intellectual and developmental disabilities

May 19, 2020

Siblings of people with intellectual and developmental disabilities (IDD) are frequently involved in their brother’s or sister’s life longer than anyone else in their family, but they are often overlooked by service providers, family members, and others. The new Impact issue from the College’s Institute on Community Integration (ICI) delves into these important and dynamic relationships over the life course.

Led by guest editors from across the country who are leading voices in the sibling community, the issue explores what we know about siblings’ roles and needs across the lifespan, their feelings about themselves and their siblings, and how to support them. It includes their personal stories, profiles of organizations around the world that are giving them a place to connect with one another, strategies and resources for addressing their concerns, and research findings about them. Guest editors from outside ICI were Katie Arnold, executive director of the Sibling Leadership Network and community education director for the Institute on Disability and Human Development at University of Illinois at Chicago; Emily Holl, director of the Sibling Support Project, Bellevue, Washington; and Emily Shea Tanis, co-director for policy and advocacy at the Coleman Institute for Cognitive Disabilities at the University of Colorado, Boulder.

“As a sibling of a brother with multiple disabilities, I have often felt my situation was too different for others to understand. This issue reminds me that I am connected to a larger group of siblings who really understand my experiences,” said Sarah Hall, an ICI research associate who served as a guest editor for the issue. “This issue is also essential for helping parents and professionals to understand the sibling experience and support siblings throughout their lives.” Another guest editor from within ICI, Jerry Smith, contributed a personal essay about his sister Gayle and her influence on his career.

Published by ICI and the Research and Training Center on Community Living and Employment, Impact is supported in part by grants from the U.S. Department of Health and Human Services and the National Institute on Disability, Independent Living, and Rehabilitation Research.

Articles in the issue range from an academic look at how sibling roles and needs change over the course of their lives, to very personal stories of family experiences, to important public policy issues and advice on handling grief and loss issues. Both print and online versions of the issue point readers to multiple sources of further information on sibling issues.

The issue also pays tribute to Vicki Gaylord, Impact’s managing editor, who is retiring from ICI after nearly 32 years of service. Under her leadership, more than 70 issues of the magazine have been produced, in addition to her other responsibilities.

“This magazine has without question moved us toward greater inclusion, self-determination, and empowerment of people with disabilities,” Smith said in the tribute. “For this, we owe Vicki a tremendous debt of gratitude.”

In crisis, ICI responds

May 1, 2020

Responding to the COVID-19 pandemic, researchers and training specialists at ICI are launching several new ventures aimed at supporting people with disabilities through the crisis.

Among other initiatives, ICI’s TIES Center is offering free distance-learning content on its website for teachers and parents who support students with the most significant cognitive disabilities as they manage schoolwork online.

Its long-running Check & Connect mentoring program for dropout prevention is helping mentors connect with at-risk students, many of whom lack access to reliable internet connections and computers.

DirectCourse, a training curriculum for professionals supporting people with disabilities, provides important content on staying healthy and managing stress.

“It’s been gratifying to see our investigators and trainers throughout ICI stepping up to support people with disabilities, families, teachers, and direct support professionals through this difficult time,” said Amy Hewitt, ICI’s director. “All of this work underscores our primary mission, whether in good times or crises, to fight for the rights and full inclusion of people with disabilities.”

DirectCourse training includes evidence-based information covering basic infection control measures for direct support professionals and the people with disabilities they support. Courses also cover stress management, nutrition, sleep, and exercise, said Jolene Thibedeau Boyd, who is part of the team that directs the curriculum. Content that is most relevant to the COVID-19 crisis is being identified and promoted to bring new staff up to speed quickly.

Through the Check & Connect program (C&C), ICI is creating forums for schools to share information on how mentors are accomplishing the key provisions of the program—personal interactions with students to boost accountability in school performance. Using dedicated Slack channels and online newsletters, they are creating new guidance to help mentors adapt to the new reality, said Eileen Klemm, director of C&C. Read more…

NCEO work highlighted

March 19, 2020
Sheryl Lazarus, director of the National Center on Educational Outcomes.

Six teams from ICI’s National Center on Educational Outcomes (NCEO) at the College’s Institute on Community Integration (ICI) were selected to present posters at CEHD Research Day, the College’s annual showcase of promising work. Although this year’s Research Day was cancelled due to COVID-19 precautions, ICI is sharing the teams’ selected work with readers.

NCEO’s progress in unlocking clues to classroom success for students with significant cognitive disabilities who are learning English, its work showing why planning for transitions after high school needs to happen earlier for students with disabilities, and the availability of its extensive databases for future research, among other projects, were selected for poster presentations.

“Research Day is an important event for staying informed about our colleagues’ work, and we look forward to next year’s event,” said Sheryl Lazarus (pictured), NCEO director. Read more…

ICI’s telehealth lab improves access to autism intervention services

December 21, 2018
ICI's telehealth lab manager Jessica Simacek wearing a headset and looking at a tablet and a client on her computer screen.
ICI’s telehealth lab manager Jessica Simacek uses audio-visual telecommunications technology to assist people with disabilities and their families, notably in Greater Minnesota.

Early identification, treatment, and intervention helps Minnesota’s children with autism and other neurodevelopmental disabilities reach their potential, but families can encounter waitlists up to a year for evaluation services. Part of the reason for this long delay is geography and journey time: Autism evaluation clinics are typically located in the Twin Cities, but families of children with autism live all over the state. Reducing waitlists can be critical for young children with autism because intervention is most effective while the young brain is still developing.

ICI’s Jessica Simacek (pictured), Adele Dimian, and Jennifer Hall-Lande, are collaborating with Amy Esler from the Autism Spectrum and Neurodevelopmental Disorders (ASD) Clinic at the University of Minnesota’s Department of Pediatrics to see if ICI’s telehealth laboratory can help shorten these waitlists and improve access to early intervention among children with autism. Telehealth refers to using telecommunications technology to support long-distance clinical healthcare, health management, and education via devices like smart phones and home computers. Telehealth also reduces the need to schedule appointments with providers; the technology can be synchronous or asynchronous, meaning people with disabilities and their families can either communicate in real time with a medical professional or leave audio-visual messages that professionals can see and hear later.

“Too many children and their families face barriers to accessing needed intervention services,” says Simacek, who has managed the lab since it began a year ago. “I investigate innovative interventions that are timely, efficient, and effective for children with neurodevelopmental disabilities. The ICI telehealth laboratory allows us to leverage technology to reach children and families who may live in rural areas or may be on lengthy waitlists for intervention. We also provide training and technical assistance on the use of telehealth, which allows providers, educators, and researchers to use telehealth to improve and extend their practices.” 

ICI and Hennepin County collaborate to improve early screening and intervention

December 20, 2018

Jennifer Hall-Lande, on behalf of ICI, has received a $50,000 Hennepin-University Partnership Fall 2018 Mixer grant for a new project, scheduled to begin January 1, 2019, supporting healthy development and enhancing early intervention outcomes for Hennepin County children. Known as “Building Healthy Children and Strong Families: Increasing Access to Early Screening and Early Intervention,” the one-year project — co-directed by Hall-Lande and Karen Adamson, a Child Well Being Area Manager for Hennepin County — will study screening rates in Minnesota’s largest county and follow up for early intervention services. “Hennepin County and the University of Minnesota both want to empower families and improve health, well-being, and educational outcomes for all children,” says ICI’s Hall-Lande. The project will connect autism resources and early intervention research from the University with the county’s best practices. “This project provides valuable data to evaluate progress on screening rates and early intervention access for Hennepin County children,” adds Hall-Lande. “We hope to increase access and improve lives of children and families.”

The project will evaluate family perspectives on early screening and intervention in Hennepin County, including cultural and contextual factors that affect access, and learn why families may or may not pursue early screening and early intervention. Finally, the project will determine the impact of the parent-to-parent navigator model on family engagement and participation in early screening and intervention follow-up, developing a parent-to-parent community support model for future use.

ICI film about school inclusion in Armenia receives award

November 19, 2018

Cover image of the film, "Education for Every Child: Armenia's Path to Inclusion."The documentary film Education for Every Child: Armenia’s Path to Inclusion, directed by ICI’s Jerry Smith, has received a Gold Award at the 2018 MarCom Awards, an international creative competition that recognizes outstanding achievement by marketing and communication professionals. The film explores the work of University of Minnesota researchers collaborating with UNICEF-Armenia and Armenian State Pedagogical University (ASPU) in developing fully inclusive schools for children with disabilities. “Beyond strategies for promoting full inclusion, this film shows the value of building strong partnerships and underscores ICI’s international reach,” says Smith.

The 28-minute film is part of Enhancing the Inclusion of Children and Youth with Disabilities in Armenia: University of Minnesota – Armenian State Pedagogical University Partnership (ASPU), a collaborative project between ICI and ASPU. The documentary features ICI researchers Brian Abery and Renáta Tichá, and Christopher Johnstone from the University’s College of Education and Human Development, who along with Smith and Associate Professor Susan O’Connor from Augsburg University in Minneapolis worked with their Armenian counterparts. Armenia is making education more inclusive, triggering a critical need for training, knowledge dissemination, and technical assistance to support this endeavor, and ASPU is the only university in the country that trains both general and special education personnel. Besides the film, the project has also: (1) published Inclusive Education Strategies: A Textbook, an Armenian/English language publication written by 13 U.S. and 12 Armenian authors; (2) revised four ASPU courses on inclusion for general and special education personnel; (3) hosted three webinars on supporting students with mild and more significant disabilities, as well as peer-assisted learning strategies; and (4) produced three learning modules, one each on co-teaching, Universal Design for Learning, and instructional strategies for inclusive classrooms.

Johnson receives George S. Jesien Distinguished Achievement Award from AUCD

November 19, 2018

David R. Johnson receives award from George Jesien.
David R. Johnson (right) receives award from George Jesien at AUCD conference.

On November 13, ICI’s David R. Johnson received the George S. Jesien Distinguished Achievement Award at the Association of University Centers on Disabilities (AUCD) Annual Meeting in Washington, DC. This national award recognizes an executive, faculty or staff member from a University Center for Excellence in Developmental Disabilities (UCEDD), Leadership Education in Neurodevelopmental and Related Disabilities (LEND) program, or Intellectual and Developmental Disability Research Center (IDDRC) who has demonstrated a distinguished career of excellence and leadership in support of AUCD’s mission to advance policy and practice for and with people living with developmental and other disabilities, their families, and communities.

Johnson, who directed ICI from 1997 until June 2018, was nominated by the current director, Amy Hewitt, and David O’Hara of the Westchester Institute. “Dr. Johnson has a lifetime of leadership, service, scholarship, published authorship, as professor and mentor,” they wrote in their letter to the AUCD Award Committee. “For nearly 40 years, Dr. Johnson has devoted his career to improving education and transition services for people with intellectual and developmental disabilities through research, demonstration, teaching, and education. Without question, Dr. Johnson has made significant contributions to dissemination of knowledge in the field of intellectual and developmental disabilities that have made an impact at a national and international level. His resume could come in chapters but has a simple theme: equality, access, and opportunity for all persons with disabilities.”

“David is the iconic scholar and gentleperson who has always been ready to help, to listen, and to offer support to friends, colleagues, and students alike,” said George Jesien, the former AUCD Executive Director for whom the award is named and who presented the award to Johnson. “His engagement in any discussion invariably raises the level of discourse, bringing new information, relevant historical facts, along with the rare ability to focus in on details while maintaining a thorough recognition of the big picture. David Johnson is an accomplished researcher, effective teacher and mentor, a highly respected administrator, and incredibly productive professor who is eminently qualified to be recognized for his commitment and contribution to the field of disabilities and to the AUCD network of centers.”

“I have enjoyed a wonderful, fulfilling career,” said Johnson (pictured at right with George Jesien) as he accepted the award. “And I have come to fully recognize that my work with the members of this organization influenced my conviction that our great universities are essential partners in advancing the public good through our interdisciplinary research and education, and sustained community engagement. It is important for us all to recognize that the work we do makes a difference in people’s lives.”

Johnson continues to work on ICI research and development projects focused on the transition of youth with disabilities from school to further education, employment, and community living. He is also professor and coordinator of graduate programs in evaluation studies at the College’s Department of Organizational Leadership, Policy, and Development.

New Diversity Fellowship: Applications due October 22

October 18, 2018

Diversity Fellowship staff.
Diversity Fellowship staff.

ICI’s Research and Training Center on Community Living (RTC-CL) has launched a new fellowship opportunity that aims to (1) increase the disability knowledge capacity within a community-based organization (CBO) that serves diverse and/or underrepresented families, and (2) inform ICI about how to increase staff/trainee diversity, support underserved individuals and families, and better serve diverse communities. Known as the Research and Training Center on Community Living Diversity Fellowships, the project began September 1 and is part of RTC-CL’s ongoing efforts to address the professional and educational disparities experienced by historically underrepresented communities in Minnesota. It will also expand the Center’s network to diverse staff and stakeholders. The Diversity Fellowship is funded by a one-year, $50,000 grant from the Administration on Disabilities’ Excellence in Developmental Disabilities National Training Initiative in the Administration for Community Living, U.S. Department of Health and Human Services.

This project will fund two Fellows. One will be a CBO staff member who serves underrepresented Minnesota families and is interested in the disability field. The other Fellow will be a graduate student or MNLEND (Leadership Education in Neurodevelopmental and Related Disabilities program) alumna/alumnus or a person with emerging expertise (which may include lived experience) in serving individuals with intellectual or developmental disabilities and their families, and who is interested in community work. Both Fellows will commit to a year-long project chosen in collaboration with their CBO and RTC-CL mentors.

Jennifer Hall-Lande (pictured at right) is the project’s Principal Investigator (PI) and Heidi Eschenbacher (third from left) is Co-PI. Other project staff are Rebecca Dosch Brown (left) and Anab Gulaid (second from left).

For further information on this opportunity, or to apply, please click here. Applications are due October 22 at noon Central Time.

ICI supports social inclusion of young Russians with disabilities

August 17, 2018

Brian Abery and Renáta Tichá in Moscow in 2015.
Brian Abery and Renáta Tichá in Moscow in 2015.

Brian Abery and Renáta Tichá (pictured in Moscow during a previous trip) from the Global Resource Center for Inclusive Education (GRC) at the Institute on Community Integration have launched a project known as Community Participation and Employment as Strategies for Social inclusion: A U.S.-Russian Dialogue. The project aims to enhance the social inclusion of youth and young adults with disabilities by developing community living and supported employment programs in the Moscow area. Funded by a one-year, $29,000 grant that began on June 22 from the Eurasia Foundation’s U.S.-Russian Federation Social Expertise Exchange Program, Tichá and Abery will work with a Russian nongovernmental organization called Journey Through Life to develop materials that support youth with disabilities to successfully transition from school to employment and community living. Activities will include staff from Journey Through Life visiting Minnesota for a 10-day period this fall to observe employment and community living programs, and GRC staff will travel to Russia to provide technical assistance to their partnering organization.

“Many Russian parents don’t see the point of educating children and youth with disabilities because options in Russia for supported community living and employment are virtually non-existent,” says Abery. “Working with nongovernmental organizations and parents on these transition issues can both enhance the quality of life of persons with disabilities and begin to change public attitudes towards this part of the population.”

Tichá agrees. “This project helps us continue our work in the Russian Federation by supporting the infrastructure needed for community living and employment for young adults with disabilities. This project builds on GRC’s previous work in the Russian Federation, which focused on community living, employment, and inclusive education for adults, youth and children with disabilities.”

New director and new five-year funding for Institute on Community Integration

July 16, 2018

Amy Hewitt.The College’s Institute on Community Integration (ICI) has begun its 33rd year of operation with the appointment of a new director, and the award of renewed five-year funding. On July 1, Dr. Amy Hewitt became ICI’s director, the fourth to hold that position since ICI was established in 1985. The Institute also received renewed federal funding from the Administration for Community Living, U.S. Department of Health and Human Services, which continues ICI’s designation as a University Center for Excellence in Developmental Disabilities (UCEDD).

For more than 30 years, Hewitt has worked to improve community inclusion and the quality of life for children, youth, and adults with disabilities and their families. She has been ICI’s training director since 2002, and is the director of both the Research and Training Center on Community Living and the Leadership Education in Neurodevelopmental and Related Disabilities (MNLEND) program, as well as co-director of the Rehabilitation and Research Training Center on Outcome Measurement. In the course of her work at ICI she has additionally directed numerous federal and state research, evaluation, and demonstration projects in the area of community long-term services and supports for individuals with intellectual and developmental disabilities, and their families.

A national leader in the disability field, Hewitt is president-elect of the Association of University Centers on Disabilities (AUCD) and a past president of the American Association on Intellectual and Developmental Disabilities (AAIDD). In Minnesota, she has served on the board of The Arc Minnesota, and several state level advisory and work groups, where she emphasizes community collaboration. She currently serves on the statewide advisory committee of the Minnesota Disability Law Center.

“I am honored, humbled, and looking forward to the opportunities and challenges to continue our mission-based work to improve policies and practices to ensure that all children, youth and adults with disabilities are valued by, and contribute to, their communities of choice,” Hewitt says. ICI’s renewed core funding as a UCEDD will support the Institute’s continued engagement in collaborative research, training, and outreach in partnership with service providers, policymakers, educators, advocacy and self-advocacy organizations, researchers, families, and individuals with disabilities around the world. The first year’s funding award is $547,000 in federal funds, with a $200,000 match from the University of Minnesota’s College of Education and Human Development.

New Impact focuses on direct support workforce and people with disabilities

June 28, 2018

Cover of Impact: Feature Issue on the Direct Support Workforce and People with Intellectual, Developmental, and Other DisabilitiesThe direct support workforce is crucial in providing daily supports to people with intellectual, developmental, and other disabilities in the U.S. as they live and participate in their communities. While demand for these supports has never been higher and will continue to grow, significant challenges exist in finding, keeping, and training Direct Support Professionals. The new Impact: Feature Issue on the Direct Support Workforce and People with Intellectual, Developmental, and Other Disabilities (pictured) examines the workforce challenges in our long-term care system and their consequences. It presents data on the direct support workforce; shares personal stories of what is and isn’t working for those delivering and receiving supports; looks at creative, bold actions being taken around the country to address workforce issues; and explores ways to ensure that quality supports are there for people with disabilities and their families in all our communities.

Impact is published by the Institute on Community Integration, and the Research and Training Center on Community Living, within the College of Education and Human Development at the University of Minnesota.