CEHD News Tom Donaghy

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CEHD News Tom Donaghy

Patrick Mitchell (MNLEND, 2018-19), disability rights advocate

June 17, 2020
Patrick Mitchell.

Driven by the disparity between the rights people with disabilities have and the rights they can actually exercise, Patrick Mitchell is leading self-advocacy projects around Minnesota and pursuing a graduate degree in non-profit administration.

Mitchell is a master’s degree candidate at Metropolitan State University in St. Paul, a role he decided to take on after completing a Minnesota Leadership Education in Neurodevelopmental and related Disabilities (MNLEND) fellowship at the College’s Institute on Community Integration in the 2018–19 academic year. He also serves as program director for Advocating Change Together (ACT), a grassroots disability rights organization.

“ACT is a small self-advocacy non-profit with a big reach,” Mitchell said. The organization has six community organizers around the state who offer a variety of self-advocacy programs. One popular series offers 36 sessions on personal empowerment, disability rights, and connecting people with disabilities to their communities, for example.

Among the organization’s recent efforts is a “Tour of Homes,” that takes people with disabilities through several types of successful independent or near-independent housing arrangements. ACT also helps people with disabilities join recreational and other club activities in their communities.

Mitchell’s career has been shaped by a life-long interest in social justice and fairness. While an undergraduate student at University of Minnesota-Duluth, Mitchell worked at a group home for people with disabilities.

“It was shocking to see the more medical model, where there were protocols for various behavioral symptoms. It felt dehumanizing, and it stuck with me,” he said. “Later I had better experiences with the system, working as an employment coach. And then finding the self-advocacy movement was just really exciting.”

That passion is evident as Mitchell describes his work today.

“Hard-fought legal rights for people with disabilities mean little if they are used by the disability service system to promote segregation,” he said. “For some people, virtually their whole lives are planned by staff members at group homes and day programs, and the system reinforces that, leaving little room to make friends, socialize, and participate in the community outside that system. So many things prevent people from breaking out of that service bubble.”

Mitchell’s background added an important self-advocacy voice to the MNLEND program, and in turn, he said, he gained a more nuanced understanding of the medical and child development fields’ roles today. Cross-disciplinary work is a key MNLEND component that promotes sharing of the most promising practices and services among fields that serve people with neurodevelopmental and developmental disabilities. “It was great to be surrounded by talented, diverse professionals from the disability field,” he said. “We found a path between affirming peoples’ lives as they are and recognizing that there may be some ways to improve things.”

ICI’s TIES Center provides tips online to quarantined teachers and families

May 19, 2020

School districts, teachers, students and families are struggling as they try to close out the academic year online. Districts worry about complying with educational requirements, particularly for students with disabilities. Teachers grapple with students’ uneven access to technology and to support at home. Students try to pick up what learning they can, but there are concerns many of them are sliding backwards in their skills. Parents are overwhelmed balancing work and their new teaching responsibilities at home.

The TIES Center at the College’s Institute on Community Integration (ICI) is responding to these needs with a series of online articles that give teachers and families practical tips on navigating the educational process under quarantine conditions.

“We’re hearing about a lot of confusion and doubt about whether online learning is even possible, particularly for students with significant cognitive disabilities. We want to make sure educators and families alike know that it is, indeed, possible,” said ICI’s Kristin Liu, co-principal investigator of the TIES Center (TIES stands for Increasing (T)ime,(I)nstructional Effectiveness, (E)ngagement, and State (S)upport for Inclusive Practices for students with significant cognitive disabilities). TIES is a national technical assistance center on inclusive educational policies and practices.

The series offers a framework for using online tools to gradually boost students’ access to and engagement in virtual classrooms.

One article in the series shares the story of Olivia, a 13-year-old who loves music, science, and Disney and who also lives with autism. Her mom, Jen, is a fellow in MNLEND, ICI’s leadership development program in the neurodevelopmental disability field.

Jen shares her story of how quarantine life has affected Olivia’s sleep, daily routines, and stress levels. Then, the module offers some practical take-aways for teachers and parents, such as prioritizing lesson concepts, working school lessons into daily household activities, and deciding on a number of times a lesson will be attempted before moving on.

“We understand this is not an easy time for anyone in the field, and it’s been overwhelming for parents to figure out how to do distance learning,” said Gail Ghere, an ICI investigator who helped create the series. Written by a number of TIES Partners, each article is designed to support teachers, students and families. They start with educational activities to link skills with daily routines at home and progress to new online tools for more inclusive and academically rigorous virtual instruction. The series also acknowledges schools’ and families’ varied access to technology, offering hi-tech and low-tech options for learning strategies.

Even though the shift is still in its early stages and was a response to the pandemic, the potential exists to make long-lasting improvements in inclusivity for students with disabilities through the increased use of technology, Ghere said. When all students are using devices to contribute to a classroom discussion, for example, students using alternative and augmentative communication devices may be more comfortable participating in class discussions or chatting with a classmate without disabilities.

“These changes weren’t planned, but the fact is there is a lot of learning going on at the moment about how kids with disabilities can access curriculum and interact with their classmates,” Ghere said. “We want to build on that and not go backwards.”

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.”

MNLEND Fellows use their training in COVID-19 response

May 1, 2020
Whitney Terrill (MNLEND Fellow, 2019-20).

MNLEND Fellows from the College’s Institute on Community Integration shared stories of how their work is being impacted by the pandemic:

My team at the Minnesota Department of Human Services has become acutely aware of the need to prioritize, responding to urgent needs of people with disabilities and related stakeholders (like family, support staff, providers, and others) during this crisis above other once-priority projects. Our focus is on developing emergency policy solutions that make accessing disability services and maintaining disability services a priority for our state. As an agency, we have also been taking inventory of employees who have needed skills in preparation to be deployed to continue to meet the most pertinent public needs during the time. We have team conversations daily or every other day to be as responsive as possible to the current situation and to continue to also build our team’s morale and efficacy. This crisis is really testing our commitment and calling as public servants, and so many of us are rising to the occasion.
Whitney Terrill
MNLEND Community Fellow
Fiscal Policy Analyst, Disability Services Division, Minnesota Department of Human Services

My clinical environment has changed significantly as the COVID-19 crisis has evolved. We have transitioned our clinic visits from in-person to video visits in a relatively short time, which has helped us to maintain contact with our patients outside of the clinic. However, this transition has only applied to established patients, meaning that patients and families who have been waiting for more than a year to be evaluated for a diagnosis like autism spectrum disorder have been required to reschedule their visits, further lengthening the time until they can be evaluated. We are hoping to extend our video visits to new patients in the near future.

My patients who have autism and neurodevelopmental disabilities have had both challenges and successes. Some struggle with changes in schedule, as well as lack of interaction with special education teachers and therapists at school. Others, however, have thrived under a less demanding environment and are more happy than usual. Parents of children with autism are managing as well as they can, although they continue to make adjustments so they can more effectively support their children.
Adam D. Langenfeld, MD/PhD
Developmental-Behavioral Pediatrics Fellow
University of Minnesota

We are facing layers of complications. We are short-staffed, therefore the few professionals scheduled are overworked. This can result in other problems such as a lack of containment of the virus due to a shortage of personal protective equipment (PPE). Healthcare professionals are aware of the nationwide shortage of PPE and we are doing what we can to overcome this. Some of us have started sewing masks, but cotton fabric masks do not provide the required level of protection. In fact, these masks can create false protection against a deadly virus. Many of the patients we serve with disabilities are facing higher, multifaceted hardships due to many facilities and programs currently being shut down. We need more PPE or volunteers to sew masks for group homes, nursing homes, clinics, etc. We must keep our communities of people with disabilities safe by providing more PPE.
Muna A. Khalif
Community social worker/BH Case Manager 

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…

Opioid epidemic: ICI’s MNLEND will create statewide telehealth hub

March 19, 2020
Jessica Simacek, who manages ICI's Telehealth Laboratory, pictured onscreen with her son.
ICI’s Telehealth Laboratory is part of the network of Minnesota assets and organizations that will assist families all over the state who are dealing with the opioid epidemic. Lab manager Jessica Simacek is pictured onscreen with her son.

The Wyoming Institute for Disabilities (WIND) has tapped ICI’s MNLEND program to create a network of partner organizations across Minnesota that will enhance developmental screening, monitoring and education for families dealing with the effects of opioid exposure.

The effort is part of a national training initiative called Project SCOPE: Supporting Children of the OPioid Epidemic. Under the initiative, MNLEND will assemble a statewide interdisciplinary team to complete immersion training in ECHO-SCOPE, a guided practice model that uses knowledge-sharing videoconference networks led by expert training teams. The model brings the latest evidence-based training in disability and other services to families, educators, providers and administrators in their homes, schools and offices.

ICI’s Minnesota Leadership Education in Neurodevelopmental Disabilities (MNLEND) fellowship program will coordinate the effort, in cooperation with the ICI Telehealth Laboratory and its Learn the Signs, Act Early autism intervention team. Several of ICI’s external partners, including the state’s major health agencies, Hennepin County, the Minneapolis Public Schools Early Childhood Special Education Family Navigators Program and University of Minnesota’s Center for Advanced Studies in Child Welfare, are expected to be part of the network, which will launch in the fall.

“We’re creating a hub of statewide partners across disciplines so we can be a resource for each other to ensure children affected by opioids get access to early supports,” said Rebecca Dosch Brown, program director for MNLEND. “We need to share the development trajectory and evidence-based practices for optimal long-term development with families and others, such as foster families and professionals.”

Opioids accounted for 60 percent of Minnesota’s 694 drug-related deaths in 2017, according to the Overdose Detection Mapping Application Program. The number of children removed from their homes due to parental drug use increased by 128 percent between 2012 and 2016.

“While opioid use has increased significantly in Minnesota, our systems have not kept pace with the growing need to support families holistically,” Dosch Brown said.

Multiple developmental variables make pinpointing opioids’ long-term neurocognitive effects difficult. Last year, however, the official journal of the American Academy of Pediatrics summarized a professional panel of experts, noting emerging literature suggesting an association between neonates exposed to opioids in utero and longer-term adverse developmental and neurocognitive outcomes.

ICI’s Jennifer Hall-Lande is principal investigator for the project. Others on the team, in addition to Dosch Brown, include Pediatrics Associate Professor Rebekah Hudock; Chimei Lee, a pediatric neuropsychology fellow at University of Minnesota Medical School; Jessica Simacek (pictured onscreen with her son), ICI’s Telehealth Laboratory manager; and current MNLEND Fellow Whitney Terrill.

Each academic year, MNLEND brings together a cross section of fellows for an interdisciplinary leadership training program. Fellows are professionals, self-advocates, and family members from the greater community, as well as post-doctoral researchers and graduate students from more than 16 University of Minnesota academic disciplines. The LEND experience has allowed ICI to form relationships with a significant and diverse group of organizations, a key component of the Project SCOPE effort.

Preview: Prevalence data and autism awareness

March 19, 2020
Jennifer Hall-Lande at CDC headquarters in Atlanta, GA, where she trained as an Act Early Ambassador in 2016.
Jennifer Hall-Lande at CDC headquarters in Atlanta, GA, where she trained as an Act Early Ambassador.

World Autism Awareness day is April 2, kicking off a month of increased focus on the prevalence of and responses to autism spectrum disorder (ASD). The College’s Institute on Community Integration is one of 11 nationwide sites that make up the Autism and Developmental Disabilities Monitoring (ADDM) Network, a Centers for Disease Control and Prevention (CDC)-funded alliance tracking more than 300,000 8-year-olds in the United States. Every other year, ADDM sites report the prevalence and characteristics of children with ASD in multiple communities.

ICI’s Jennifer Hall-Lande (pictured at CDC headquarters in Atlanta, GA, where she trained as an Act Early Ambassador in 2016) is one of ICI’s lead investigators, along with ICI Executive Director Amy Hewitt and Amy Esler on the Minnesota ADDM project, a team that also includes project coordinator Libby Hallas-Muchow. As the team prepares for the release of the 2020 Community Report from the ADDM Network, expected shortly, Hall-Lande and Hallas-Muchow agreed to answer a few background questions about prevalence data and ICI’s work in this area:

Q. The latest ADDM Network data on autism prevalence is expected soon. Can you bring us up to speed on the trends in the data in the last few years?

A. ADDM data is valuable in helping us understand not only the rates of autism, but also the characteristics of children with autism in our community. This data informs public policy and how we can improve services and supports. First collected in 2000, the data has shown relatively steady increases in the prevalence of ASD. Through those years, there have been changes in the way we define and diagnose autism. We really view it now as a spectrum, and therefore more children have come into the prevalence data over time, though the most recent changes in clinical definitions do not appear to have significantly affected the numbers. A robust, ongoing prevalence trend in the data shows more boys than girls (approximately 4 males to 1 female) being identified on the autism spectrum. An ongoing area of focus within the autism community is in lowering the age of initial diagnosis. We know that we can identify signs of autism as early as age 2, but the average diagnosis age remains around 4.3 to 4.8 years of age, around the time of the start of kindergarten. One hopeful prevalence trend, however, is that nationally we appear to be making some improvements at identifying children with autism across diverse communities.

Q. April is designated alternately as Autism Awareness Month, or Autism Acceptance Month, reflecting differences in the advocacy community about language and approaches around autism. Where does ICI’s work fall into this discussion?

A. Autism is viewed through many different lenses and we’re pleased to see the attention and focus being paid to the needs of ASD from all stakeholders. Our prevalence work is widely used throughout the community and is a strong policy advocacy tool, which has implications for appropriating resources and interventions. So, our focus is on providing data, early intervention and training that helps policymakers, communities, families, and individuals make informed decisions and support children with autism and their families. We acknowledge the complexity around topics such as causation, but our specific task on this project is providing the prevalence data to better understand rates of autism in our community. This data is a powerful tool for both understanding ASD in our community, but also for planning services and allocating resources to support children with ASD and their families.

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…

MNLEND teams launch projects

March 19, 2020

Hosting a film series and discussions exploring cultural responses to autism. Asking families what services they need most. Evaluating and expanding a promising mentoring program.

These are just a few of MNLEND’s fellowship projects for 2019–20, marking a decade since the program’s inception. An interdisciplinary partnership of the University of Minnesota, MNLEND (Leadership Education in Neurodevelopmental Disabilities) brings together the College’s Institute on Community Integration (ICI), the College’s Educational Psychology Department, the School of Medicine’s Department of Pediatrics, and the College of Liberal Arts’ Department of Speech Language and Hearing Sciences.

The program also collaborates each academic year with a variety of other departments to train a cohort of fellows from the community at large and graduate programs across the university community, with the goal of creating the next generation of interdisciplinary leaders who will improve health and education outcomes for people with neurodevelopmental and related disabilities, such as autism.

As part of the experience, LEND fellows select and lead a project that matches their specific interests. Read more…

Engaging state partners on the DSP shortage

March 19, 2020
Julie Kramme presented on the critical shortage of direct support professionals during the University of Minnesota’s public engagement conference on March 5, 2020.

Julie Kramme (pictured) and Barbara Kleist from the College’s Institute on Community Integration (ICI) presented findings from a pair of surveys unlocking keys to the critical shortage of direct support professionals (DSPs) as part of the University of Minnesota’s recent public engagement conference, Partnering with Minnesota: Connecting the University with Urban, Suburban, and Rural Communities through Public Engagement.

The system-wide conference brought together faculty, staff, administrators and community partners from a wide array of disciplines to explore ways publicly-engaged research, teaching and outreach are addressing Minnesota’s most pressing issues. The day-long session, held at Coffman Memorial Union on March 5, included a keynote address by Jane Leonard, a nationally-known leader on rural, economic, and community development issues. She is President of Growth & Justice in St. Paul, a nonprofit organization focused on building a more equitable and sustainable economy.

Toward that end, Kramme and Kleist shared data from surveys of individual DSPs and organizations that employ DSPs to support people with disabilities in their daily lives. The surveys found that due to chronically low pay—averaging $12.61 per hour in Minnesota—71 percent of direct support professionals rely on government subsidies for health benefits, 30 percent use government assistance with energy bills, and 23 percent receive assistance for food. Slightly more than half of organizations offer health insurance to their full-time DSPs.

“Not surprisingly, there is a high turnover rate in this field,” Kramme said. “Many people love the work, but find it extremely difficult to think of it as a career when they are struggling to pay for basic necessities.”

Beyond the numbers, Kleist discussed promising recruitment and retention techniques ICI is working on with organizations in Tennessee, as well as legislative efforts to reclassify DSP work into a new standard occupational code, a move designed to elevate professionalism and pay in the industry.

“We are helping organizations understand what works and what doesn’t, based on decades of experience at this,” said Kleist. “Think of high turnover rates as money you’re never going to get back. We offer retention calculators, competency building skills, and a variety of solutions that can help organizations stop hiring the wrong set of skills over and over.”

A longtime friend returns

February 20, 2020
Mikala Mukongolwa teaching a child in her native Zambia.

What motivates someone to work in the disability field?

Having a profound impact on people’s lives is a common driver, and that passion comes to life as longtime ICI friend Mikala Mukongolwa of Zambia sits down to talk about her two-week visit in the United States this month, the latest in a series of information exchanges with ICI that began in 2004.

“When I first came here, I saw people with significant support needs living full lives. They had help, but they were doing so much on their own,” she said. “In my country there are still kids and young men and women being kept, sometimes locked and bedridden, in houses with no interaction. They need to be loved and they can do a lot if we give them just a little bit of help.”

Dig a little deeper, however, and one discovers what first ignited that passion long ago: gratitude and inspiration.

Mukongolwa’s uncle lost his sight at age 7. At the time, her father was a young adult who had to leave Zambia for work opportunities in Zimbabwe. Before leaving, he found a school specializing in education for the blind and made sure his younger brother attended, over the objections of other family members. That uncle went on to graduate from law school and work at a university in Zambia, and in turn look after Mukongolwa after his brother died.

“He was a very good singer and composed many songs in braille,” she recalled. “He made me want to communicate in different ways and reach people.”

She became an elementary school teacher, but early into her career felt ineffectual as she tried to help one boy in first grade learn to write and accomplish other grade-specific skills.

“His parents weren’t concerned, but inside I knew my heart wouldn’t feel well if this boy sits in my class and learns nothing,” she said. She reached out to a nearby college of special education for help with a few teaching tasks for that one student, and the tips worked. So began her eventual special education coursework, which led to her home-based work with students with disabilities and her long association with ICI. Channeling her uncle, she invents and sings little songs to break down math and other subjects for young learners.

“We’ve learned a lot from Mikala’s mentoring strategies for new teachers, among other talents,” said ICI Executive Director Amy Hewitt. “Our work together gives us a foundational knowledge that keeps us grounded in the notion that you can’t simply export special education to every country without understanding the cultural context.”

What does she do that’s different?

“I’m very hands-on,” said Mukongolwa, pulling up a video on her phone of herself, down on the classroom floor, teaching a counting song to students with disabilities. “Most people who are head teachers go in looking very smart, and in high heels. I’m not that person. I show teachers what I do rather than tell them. Learning should be fun.”

ICI helps support Mukongolwa’s work as a way to extend the reach of its mission to create communities worldwide that more fully include people with disabilities.

During her most recent trip, Mukongolwa collaborated with ICI staffers working on a grant proposal to bring training for direct-support professionals to the post-secondary education market in Zambia.

Mukonglawa was also invited to participate in sessions at the Therap national conference as a component of their Global Initiative. Therap is an online documentation system for service providers in health and human services fields and DirectCourse has been a long-time collaborator.

“A lot of teachers in my country ask me, ‘Where do you learn all this?’” Mukongolwa said. “We were the first [in Zambia] to come up with a child protection policy and to help parents better understand behaviors in their children with disabilities. All that knowledge came from DirectCourse. Without ICI, I would still be in the dark.”

Ripple effect: Sustaining ICI’s international reach

February 20, 2020
Check & Connect staff from the College’s Institute on Community Integration partner with Micronesian school officials and social workers to promote school engagement.

Returning home after a six-week U.S. State Department fellowship to study techniques for making education more inclusive for people with disabilities, a group of seven Ukrainian professionals built a network of more than 2,000 educators, administrators, parents and people with disabilities that is lifting the visibility of the disability community in Ukraine.

In the Federated States of Micronesia, local school officials and social workers are learning how to connect with parents of students at risk of dropping out, adapting a popular U.S. intervention program called Check & Connect to their own culture.

An entrepreneurial tailor in Kenya is adding a new $75 sewing machine that will allow him to employ another worker with disabilities to create school uniforms, demonstrating the economic ripple effect of even small dollars invested in job-skills training.

Woven deep in a global tapestry of conflict, protectionism, and uneven funding in 2020 are threads of cultural understanding—fostered by ICI staff members and their international partners—that are sustaining progress in the quest for the full inclusion of people with disabilities in their communities.

Developing relationships that can carry work far beyond the initial scope of government or private grants is one way ICI is making sustainability happen, said Renáta Tichá, director of ICI’s Global Resource Center for Inclusive Education.

“Part of our responsibility in working at ICI is to support and build capacity for inclusion and participation, not just in the United States but all over the world,” Tichá said. “If you’re not building relationships, discovering unmet needs and developing creative and culturally appropriate means to meet them, you’re not fully utilizing your skills.” 

Read more…

Mapping more cohesive services for people with disabilities

January 17, 2020

To qualify for vital public services, people with disabilities must demonstrate they need help with certain activities of daily living. But states have different ways of assessing these needs, and the process for qualifying for benefits is often opaque.

The Research and Training Center on Home and Community Based Services (HCBS) Outcome Measurement (RTC-OM) at the College’s Institute on Community Integration (ICI) recently launched a free, interactive national map of state service eligibility requirements, called the HCBS Assessment Tools database. The map appears on the RTC-OM website.

“Several states are redesigning their Medicaid waivers programs and they want to see what other states are doing,” said Matthew Roberts, an ICI research coordinator who is working on the project. The database is also viewed as important by staff at the National Institute on Disability, Independent Living, and Rehabilitation Research (NIDILRR), who suggested its development; the Administration on Community Living; and the Center for Medicaid and Medicare Services, which funds home and community-based services so that they can track the manner in which states are making eligibility and funding decisions. This database will be updated frequently, which will help all stakeholders better understand the processes and tools that are being used to support equitable service provision.

To build the database, researchers spent several months digging into state applications for Medicaid waivers, comparing them to the actual processes states are currently using to determine eligibility for services. They examined both eligibility for receiving services and the level of funding for which individuals qualify. Then they verified the findings with state officials, Roberts said. Users can easily click through the states to see how officials determine eligibility, funding and support needs of people receiving services. Data on service quality and outcomes also is available.

“We believe this will help people start a conversation about the best way to assess needs, rather than each state operating independently,” he said. “This is the first time a resource has been developed to identify specific measurement tools being used within state HCBS programs across the United States.”

The DSP shortage: Think local

January 17, 2020

Supporting people with disabilities is rewarding work, and it’s among the nation’s fastest-growing occupations, but the direct-support profession’s low pay and considerable demands are associated with crisis-level labor shortages that are lowering the quality of life of the people with disabilities that DSPs support. Without major changes in how organizations recruit, train, and support these professionals, the problem will only worsen.

Collaborating with state officials and provider organizations across Tennessee, the Institute on Community Integration (ICI) is conducting annual surveys of local wages, benefits, and retention efforts; developing a customized toolkit for organizations to use in recruiting and retaining DSPs; and providing coaching to organizations as they implement the toolkit. The tools include videos with realistic portrayals of a typical day for a DSP that have been effective in recruiting candidates who will stay longer on the job and who view the work as a profession.

“Working with TennCare and Tennessee Community Organizations is allowing us to apply our evidence-based expertise to a broad network of organizations across the state, creating promising strategies for strengthening the pool of DSPs,” said ICI’s Heidi Eschenbacher, principal investigator for the project, known as the TennCare Employment and Community First CHOICES Workforce Initiative. “Partial implementation of a strategy can lead to organizations concluding it failed, but our teams will work closely with organizations throughout the process, guiding selection and implementation of the hiring and retention tools that work best in each organization.”

Now beginning the second of the three-year project, ICI’s Research Training Center on Community Living shortly will launch a second annual survey as a way to measure short-term progress and expand it to a second cohort of organizations, said Barb Kleist, co-principal investigator.

In September, ICI Director Amy Hewitt, also a co-principal investigator, and TennCare’s Shannon Nehus kicked off the first workshops for participating organizations, along with a team of ICI staff that included Kleist, Claire Benway, Chet Tschetter, Julie Kramme, Sarah Hall, and MacDonald Metzger. In total, fifteen ICI staff members are working on the project.

Readers can inquire directly about the broader project.

Impact: Designing lives of their own

January 17, 2020

The new issue of Impact magazine from the College’s Institute on Community Integration (ICI) explores how people with disabilities are experiencing self-determination today, including how they are using Supported Decision-Making (SDM) and other strategies to replace court-appointed guardianship, improve their education, and design lives that better reflect their values.

“The whole concept of self-determination has changed dramatically in the 30 years we’ve been researching it,” said Brian Abery, co-director of ICI’s Research and Training Center on HCBS Outcome Measurement. “Today it is much more complex and includes supporting people with the most significant disabilities to have the amount of control they want over their lives.”

Abery and Renáta Tichá, co-director of ICI’s Global Resource Center for Inclusive Education, served as guest editors for the issue, along with Jonathan Martinis, senior director for law and policy at the Burton Blatt Institute, Syracuse University; and Karrie Shogren, director of Kansas University’s Center on Developmental Disabilities.

Articles include an update on state legislation and trends in using SDM to advance self-determination and other favorable outcomes in the lives of people with disabilities, visions of future directions from leaders in the disability community, and compelling personal stories of both self-determination and self-advocacy.

“I was told in high school that I could not continue my education because it was a waste of my time and my teachers’ time,” wrote Roqayah Ajaj, originally from Saudi Arabia and now a PhD student at the University of Minnesota. Despite several obstacles, including the challenges associated with blindness, Ajaj is pursuing her dream of improving education for people with disabilities.

The issue’s cover story highlights Ryan King and his family, who fought a lengthy legal battle to end Ryan’s court-appointed guardianship, replacing it with SDM.

Global perspectives on self-determination also are addressed.

“People with disabilities in countries such as Armenia, Russian Federation, Kazakhstan, Tanzania, and Kenya have begun to exercise self-determination in their lives,” writes Tichá, citing influences from the adoption of the 2006 United Nations Convention on the Rights of Persons with Disabilities.

In many areas of the world, however, self-determination and SDM in particular still are fledgling concepts, Tichá said.

“Given their different cultures and histories, you cannot expect self-determination to look the same in every country,” she said. “For many, the focus is still on the physical inclusion of people, and they haven’t moved to the point of advocacy. It’s not going to happen overnight.”

1Health adds MNLEND

December 18, 2019

The Institute’s MNLEND fellowship program was accepted as a designated 1Health Interprofessional Activity, the University of Minnesota’s interprofessional education curriculum initiative that brings together students from a wide range of health-related disciplines.

1Health challenges medical, dental, social work, public health and other students to cultivate skills in teamwork, communication, and collaborative care. These skills are integral to the medical community’s “triple aim” of improving patient outcomes, advancing population health, and reducing costs.

In selecting MNLEND, 1Health’s Interprofessional Education Team considered the program’s mix of learners from different professions, its explicit focus on interprofessional learning and the authenticity of its learning activities.

“MNLEND prepares future leaders to better serve children with neurodevelopmental and related disabilities, and this new designation helps us further expand our already diverse pool of potential fellows,” said Andrew Barnes, MD, MPH, medical director at MNLEND, and assistant professor of pediatrics at the University of Minnesota Medical School.

MNLEND, which stands for Minnesota Leadership Education in Neurodevelopmental and Related Disabilities, today spans more than 16 University disciplines and includes community members. Over the course of an academic year, its fellows prepare to navigate and lead in fields that will improve the quality of life for children and young adults with neurodevelopmental disabilities. The program is funded by the U.S. Maternal & Child Health Bureau.

New resources for English Learners

December 18, 2019

Students’ academic skills improve when their teachers and parents work as a team, studies show.

For families of English learners, including those whose children also have a disability, collaborating and advocating for their children can be a challenge. Beyond a possible language barrier, there may be cultural barriers and differing expectations about the role of parents in a child’s education. Some parents may also be working multiple jobs and find it difficult to meet with teachers and attend school events.

Despite the challenges, it is vital that parents and teachers work as equal partners in a child’s education.

“Parents know their children best, and can advocate for the supports that will fit their children’s unique needs. Parents of English learners sometimes need additional resources to understand their role and to be able to communicate with teachers,” said Kristin Kline Liu, director of the Improving Instruction for English Learners Through Improved Accessibility Decisions project at ICI’s National Center on Educational Outcomes (NCEO). “For their part, teachers also need to understand how to make parents of English learners feel like a valued partner in educational decisions.”

With funding from the Office of English Language Acquisition at the U.S. Department of Education, the Improving Instruction project team at NCEO is collaborating with the West Virginia Department of Education to create a multilingual print and audio toolkit for parents, teachers and other school officials that promote parent-educator communication and collaborative decision-making about accessible instruction and assessment for English learners and English learners with disabilities. An English version of the toolkit is available now and additional materials for parents will be available shortly in Chinese, Vietnamese, Arabic, and Spanish.

One Improving Instruction brief for parents, for example, offers sample questions parents can ask teachers about how their children are progressing in class and encourages them to share insight with teachers about how their children learn best. Another brief for principals discusses professional standards for finding qualified interpreters for educators communicating with parents who do not speak English.

The parent briefs also offer sample scenarios, such as “May,” a 10th grade student who is learning to speak English and has a visual impairment. The scenario spells out in plain language how her Individualized Education Program works and what tools she can use in class and on tests, such as large-print dictionaries and other materials.

“Teachers and parents need to make consistent decisions about which accommodations work best and which ones are acceptable in classroom and testing situations,” said Liu. “All of the guides will support families as they become equal partners in their child’s learning.”

Supporting Minnesota jobseekers with disabilities

December 18, 2019
Kelly Nye-Lengerman

Workers with disabilities are posting record-low jobless rates amid a strong economy, but they lag their co-workers without disabilities in both jobs and pay, and many of them live in poverty. Many also struggle to move beyond facility-based employment programs that originally promised to be a bridge to competitive employment, and the ones who did find jobs are largely clustered in low-paid occupations.

On several fronts this fall, ICI’s Community Living and Employment team is creating better opportunities for people with disabilities to use work as a pathway out of poverty and contribute meaningfully in community life.

This month, Governor Tim Walz and Lieutenant Governor Peggy Flanagan announced Kelly Nye-Lengerman’s appointment to the State Rehabilitation Council (SRC), effective December 10. Nye-Lengerman (pictured), director of ICI’s Community Living and Employment programs, will serve as Disability Advocacy Group Representative for a three-year term ending in January 2022.

The SRC guides the state’s Vocational Rehabilitation Services program, which serves people with disabilities statewide as they transition from center-based work programs to paid jobs in the community, a passion that guides much of Nye-Lengerman’s work. ICI staff are actively engaged with state agencies to improve how employment and transition services are delivered.

Among other active employment projects this fall, she and her ICI colleagues are collaborating on a two-year Disability Services Innovation grant from the Minnesota Department of Human Services to support and coach employment providers across Minnesota as they transition to competitive, integrated employment.

“People with disabilities want to use their gifts and talents in ways that provide meaning to their lives and sustainable income,” Nye-Lengerman said. “People with disabilities are an untapped resource for employers that can contribute to business, industry, and the economy. This grant provides a way to invest in building the capacity of disability services providers in our state who want to make competitive employment a reality for people with disabilities.”

Together with the Institute for Community Inclusion at University of Massachusetts-Boston, teams from both institutes are hosting monthly online meetings with groups of service providers to share strategies. They also provide individualized coaching on communicating with potential employers, supporting workers as they train for and seek competitive jobs, and guiding families through the transition. The project is known as the MN Training and Technical Assistance Project (MN-TAP).

Don Lavin, founder of Strengths@Work LLC and a longtime collaborator with ICI, has joined the project as a coach and will work with providers to demonstrate the value people with disabilities offer, particularly in tight labor markets, and their overall impact on the local economy.

Nye-Lengerman’s team also began work October 1 on a three-year grant that will further develop a survey that tracks the daily activities of employment professionals who support job seekers with disabilities. The project, led by the Institute for Community Inclusion at UMass-Boston, is funded by the National Institute on Disability and Rehabilitation Research.

Looking forward, Nye-Lengerman, along with ICI colleagues David Johnson and Amy Gunty, will soon release a national report of lessons learned from the Promoting Readiness of Minors in Supplemental Security Income (PROMISE) project. This report will highlight lessons from a randomized control trial of more than 13,000 youth with disabilities, aged 14-16, who receive supplemental security income (SSI). The goal of PROMISE is to reduce long-term reliance on SSI by providing coordinated services that improve education and employment outcomes. Nye-Lengerman and Gunty were members of the national PROMISE technical assistance center. 

“Everyone can work with the right supports, and employment can be a mechanism to full inclusion for all people,” she said. “ICI is committed to providing training, technical assistance, and research focused on employment policy and services in Minnesota and beyond.”

Thurlow’s leadership legacy: Fairness, wisdom in education

December 18, 2019
Martha Thurlow

Longtime colleagues weighed in this month on the legacy of Martha Thurlow, who stepped down recently after 20 years at the helm of ICI’s National Center on Educational Outcomes (NCEO). University of Minnesota President Emeritus Robert Bruininks, himself a former NCEO director, highlighted Thurlow’s foundational work to expand educational opportunity for children with disabilities. Noted leaders outside of ICI also praised Thurlow’s contributions at NCEO.

“Her passion and commitment, and her ability to bridge theory to practice, has truly improved outcomes for students,” said Sheryl Lazarus, who assumed the role of NCEO director October 1.

A prolific writer, Thurlow is still working on a couple of academic book chapters and will continue on with ICI under a retirement appointment.

“Seeing the work of NCEO reflected in federal education laws and in the work that states are doing to improve the outcomes of students with disabilities” are among Thurlow’s proudest achievements, she said.

“Anything I have accomplished is due to my many mentors and the colleagues I have worked with at ICI and NCEO through the years,” she said.

Reflecting on Thurlow’s time leading NCEO, former ICI director David Johnson recalled occasions when federal education officials sought out her opinion on special education policy. He described her imprint at both the federal and state levels of education policy as remarkable.

“When you think about accountability for including all students in standards and assessments, she has probably had more influence on making that happen than anybody else in the country,” Johnson said. See FULL story here.

Out of Africa, and back: A pathway to prosperity

November 21, 2019
Esther Ngina Njuguna

Each evening and every time it rains, Esther Ngina Njuguna gathers the few food items she sells at an open-air market on the outskirts of Nairobi, Kenya and gets them to safety. If she had a little shop with a roof and storage space, the widow and mother of two could sell more products and send her children to school.

Nearby, Teresia Aoko Bulimo, a tailor, is trying to form a team of workers with disabilities to sew uniforms for area schools. The hitch: traditional commercial space would add too much cost to the process.

Inspired by entrepreneurs worldwide who are repurposing old shipping containers into housing and pop-up shops, Daniel Chege is working on a plan to purchase and manage a few containers in Kiambu County that could house both of these fledgling businesses, and more, in a country where very few people with disabilities can find work.

It’s just one of several economic development initiatives Chege explored through a U.S. State Department-funded exchange program this month with his mentor, the Institute on Community Integration’s MacDonald Momo Metzger. Metzger is an education program specialist with deep experience supporting people with disabilities in person-centered careers and life planning.

This month, Metzger traveled to Kenya to support Chege’s work there and consult with local leaders on several economic development initiatives. The pair also met U.S. Ambassador to Kenya Kyle McCarter and other Embassy staff to discuss the projects.

In May, Chege spent a month in Minneapolis with Metzger and other ICI leaders, as well as representatives from area organizations, observing how they help people with disabilities create resumes and find jobs in the community.

“In Africa, the idea of people with disabilities earning their own wages is still very new,” said Metzger, who is originally from Liberia. “Most people think they can’t work, so we’re trying to create some awareness and change that assumption.”

Chege, Njuguna, and Bulimo are part of Murera Persons with Disability Welfare Association, a community organization aiming to assist its members to become self-reliant through economic opportunity.

Speaking to the group near the end of Metzger’s trip, Stephen Kahingo, Murera’s chairperson, said members of the organization learned a great deal from the exchange about bringing more inclusive employment to Kenya.

“We are so grateful for this golden opportunity to learn from you,” he said in thanking Metzger for the experience. “You came to share knowledge with us, and knowledge lives forever.”

Also during the two-week trip, Metzger and Chege met with the Vice Chancellor of DayStar University, Laban Ayiro, and others to establish a School of Education and Disability Studies. ICI will offer initial support for the proposed school and will collaborate on its development.

The Professional Fellows Program on Inclusive Disability Employment is sponsored by the U.S. Department of State Bureau of Educational and Cultural Affairs and implemented by the Association of University Centers on Disabilities, the Institute for Community Inclusion at UMass Boston and Humanity & Inclusion.