Ensuring that all children, youth, and adults with disabilities, and those receiving educational supports, are valued by and contribute to their communities of choice. |
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A nurse, caregiver, driver, companion, and teacher – all for $14.50/hour
By Amy Hewitt, PhD
Director, Institute on Community Integration
President Biden’s recent, wide-ranging executive order to improve our nation’s care system represents the most comprehensive step any president has taken to support care workers and family caregivers and to make care more accessible to working families.
We applaud this commitment to the direct care workforce, which includes childcare workers, personal care assistants, caregivers in nursing facilities, family caregivers, and direct support professionals. DSPs support individuals with intellectual and developmental disabilities in living full lives in their communities. Their complex work includes many tasks performed by caregivers, nurses, teachers, therapists, and more. And yet, this role is not well understood and has been overlooked in some of the recent news coverage surrounding the executive order. Efforts made to strengthen and professionalize the direct support workforce – evidence-based training, credentialing, mentoring, career lattices – can help raise the status of everyone working in direct care and will make a tangible improvement in the lives of people with disabilities. The April 27 reintroduction of legislation to create a standard occupational code for DSPs was welcome news and
would create better understanding and measurement of the workforce. It would also help states determine more accurate reimbursement rates for support services.
Over the last three decades, through persistent advocacy, services for people with intellectual and developmental disabilities (IDD) have largely moved from segregated care in large institutions to a robust and highly varied network of community supports. Federal legislation codified the values of inclusion and access and the disability services field created a body of research and evidence-based practices that have resulted in meaningful advances in the self-determination and quality of life of people with IDD. Today, due to labor shortages and high turnover rates that pre-dated but grew far worse during the COVID-19 pandemic, many community programs for people with IDD across the country have started closing – some permanently. People in smaller residences are being moved to larger congregate facilities or back home to live with elderly parents. Waiting lists are growing. Most importantly, people with IDD, as well as their families, are experiencing
dangerous service disruptions that put them at risk of losing their hard-won lives in the community. The gains made over decades are being reversed.
Read more about improving the care system. |
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MNLEND Graduates Celebrate
When the Minnesota Leadership Education in Neurodevelopmental and Related Disorders (MNLEND) graduates receive their certificates in a ceremony on May 25, it will mark completion of the 15th cohort under the direction of the Institute on Community Integration. It also marks a significant milestone toward the national LEND program’s goal of providing long-term, graduate-level interdisciplinary training that improves policies and services for people with developmental disabilities.
“Comprehensive interdisciplinary programs that allow fellows to learn and engage with one another are rare, and rarer still are programs that engage community members as co-learners,” said Amy Hewitt, director of the Institute. “This commitment ensures that people with lived disability experience and those from diverse racial, ethnic, and linguistic backgrounds are full members of the learning community.”
This year, 28 fellows have earned full MNLEND certificates, along with seven intermediate trainees who joined the program for a more limited, focused experience. They come from University of Minnesota academic disciplines, including Public Health Administration, Law, Social Work, Psychology, Nursing, Occupational Therapy, Pediatric Dentistry, and many more; or are community members in disability-related professions, self-advocates, or family advocates.
Minnesota Governor Tim Walz congratulated the fellows in a video message that will be shared at the ceremony.
Read more about the 2023 MNLEND graduation. |
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ICI on the (Virtual) Hill
The Institute and partners from The Arc Minnesota recently met with staff members supporting Minnesota’s Congressional delegation as part of the annual Disability Policy Seminar, a virtual forum for advocating for high-priority issues that affect people with intellectual and developmental disabilities (IDD).
Participants included several fellows from the Minnesota Leadership Education in Neurodevelopmental and Related Disorders (MNLEND) program, Institute staff members, and several self-advocates.
“The people closest to the problem know it best and understand how to find solutions, so I’m grateful whenever my staff and I have the opportunity to speak with disability advocates and talk about ways we can make life better for those living with disabilities,” said U.S. Senator Tina Smith (pictured at left), who was represented at the event by a health policy staffer. “I look forward to continuing our work together and appreciate all their important advocacy.”
Macdonald Metzger, ICI’s director of outreach, said the annual event is a reminder to policymakers that the Institute is an important resource for them in understanding and advocating for issues important to people with disabilities.
Read more about ICI’s virtual visits to Capitol Hill. |
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Drawing on more than 30 years of research, training, outreach, and evaluation, Direct Support Workforce Solutions helps organizations develop and implement workforce strategies that reduce turnover; attract, recruit, and retain qualified talent; and engage and prepare their workforce to deliver high-quality services. |
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NCEO Brief 31: Gaps in the Accommodations Research Literature
Authors: Sheryl Lazarus, Martha L Thurlow, and Lane K Holden
Federal and state policymakers, as well as educators, rely on the accommodations research literature to evaluate how accommodations should be used to improve accessibility for students with disabilities. This Brief
consolidates information about gaps in this research with the goal of promoting wider interest in and additional research on accommodations. NCEO reviewed the accommodations research literature published between 1999 and 2021. Gaps in the research were identified in those summaries of the literature. The primary audience for this Brief is researchers and other persons or organizations interested in conducting or promoting research that supports a better understanding of accommodations. Graduate students looking to identify potential areas for research may also find this Brief useful. Published by ICI’s National Center on Educational Outcomes (NCEO). |
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1% Toolkit: Developing Assessment Participation Action Plans for State and District Leaders: NCEO Tools 13 and 14
The purpose of these resources is to provide tools for states and districts that wish to improve student assessment participation. The tools provide guidance on how state and district leaders can develop assessment participation action plans and describe a series of steps that support the development of the action plans. States and districts may customize the tools to meet their needs. These resources were developed through a collaborative process with the 49 states participating in NCEO’s 1% Cap Community of Practice during its bi-weekly webinar calls in 2021 and 2022. Published by NCEO. |
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Journal Articles Published
Stancliffe, R. J., Tichá, R., Pettingell, S. L.,
Houseworth, J., & Bershadsky, J. (2023). Current services and outcomes of formerly-institutionalized and never-institutionalized US adults with intellectual and developmental disabilities: A propensity score matching analysis. Journal of Applied Research in Intellectual Disabilities. Advance online publication.
https://doi.org/10.1111/jar.13103
Brotherton, M., Stancliffe, R., O’Loughlin, K., & Wilson, N. (2023). From mainstream employment to mainstream retirement: A randomised controlled trial of a transition to retirement intervention for adults with intellectual disability. Journal of Applied Research in Intellectual Disabilities. Advance online publication. https://doi.org/10.1111/jar.13111
Hughes, M. M., Shaw, K. A., DiRienzo, M., et al. (2023). The prevalence and characteristics of children with profound autism, 15 sites, United States, 2000–2016. Public Health Reports. 2023;0(0). https://doi.org/10.1177/00333549231163551 |
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Schleien Scholarship Accepting Applications
The Jason David Schleien Memorial Scholarship offers $3,000 to qualified students who actively promote the community inclusion of individuals with disabilities, disadvantaged youth, and other underserved populations. These activities could take place in the spring, summer or fall. Students must be enrolled full-time at the University of Minnesota’s College of Education and Human Development and report their experiences to the Schleien family after completing the project. Applicants should submit a one-page proposal to ICI’s
Nik Fernholz outlining their interest in the stated examples of areas of study and working with the relevant populations. Read more about this scholarship opportunity. |
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Jennifer Hall-Lande. Hall-Lande
presented MN-ADDM data at Help Me Grow on April 3, at the EIDBI Learning Collaborative on April 20, and at the Minnesota Autism Society annual conference on April 27 while introducing a keynote speaker. During the introduction, Hall-Lande also briefly spoke about MNLEND to the audience of professionals, parents, and self-advocates. On April 12, Hall-Lande gave the keynote address, “Updated autism prevalence data from the Minnesota Autism Developmental Disabilities Monitoring Network,“ at the annual Minnesota Autism Symposium. |
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National Center on Educational Outcomes. In mid-April, NCEO staff presented at two annual conferences in Chicago. On April 12–15, NCEO staff made three presentations at the annual meeting of the National Council on Measurement in Education.
Sheryl Lazarus (pictured) and Mari Quanbeck presented, “Correlation between AA-AAAS and LRE.” Yi-Chen Wu and
Martha Thurlow presented, “A Longitudinal View of States Meeting the 1.0% AA-AAAS Participation Requirement” and “Examining the Use of Text-to-Speech on the Grade 8 NAEP Mathematics Assessment.”
On April 13–16, the American Education Research Association (AERA) held its 2023 Annual Conference in Chicago and Lazarus participated in a presidential session titled, “Systems for Equitable Educational Assessment,” which contributed to the theme of this year’s meeting. NCEO staff made four additional presentations during the AREA conference. Kristin Liu presented, “Training Rural Teachers to Provide Equitable Instruction for English Learners” and a paper, “Rethinking Inclusivity, Equity, and Diversity for Rural Multilingual Learners.” Lazarus,
Andrew Hinkle, and Quanbeck presented, “Assessment Accommodations for Students with Sensory Disabilities: Research and Policy.” Wu, David Johnson, and Martha Thurlow
presented, “Future Goal Aspirations of Students with the Most Significant Cognitive Disabilities: Findings from NLTS 2012.” Virginia Ressa, Kascinda Fleming, and Thurlow presented, “A Synthesis of 20 years of Research: Students with Disabilities’ Perceptions of Accommodations.” |
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Chet Tschetter and Megan Sanders. In mid- and late-April, Tschetter (pictured) and
Sanders presented to frontline supervisors from the Community Provider Network of Rhode Island. On April 13 and 17, they presented the virtual frontline supervisor training, “Virtual kickoff and orientation,” to frontline supervisors. On April 25–26, Tschetter and Sanders presented the in-person frontline supervisor trainings, “Understanding your role, strengths, and areas for growth” and “A supervisor’s role in sustaining and building the workforce,” to frontline supervisors.” |
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Roger Stancliffe. On April 14, Stancliffe presented, “End of Life for people with intellectual disability: Key roles for nurses,” at the Developmental Disability Nurses Association Annual Conference in New Orleans. On April 14, he presented a half-day workshop on active support at the North Dakota Center for Persons with Disabilities at Minot State University. |
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Rebecca Dosch Brown. On April 17, Dosch Brown
co-presented, ”Untangling ageism and ableism to promote inclusion,” in Washington, D.C. at the annual leaders summit for Leading Age, a national care providers network for older adults. The collaborative session addressed the stigma associated with aging and disability in the aging and congregate care industry. The attendees discovered ways to identify, understand, and disrupt common forms of discrimination, and discussed pragmatic ways to respond to ageism and ableism to promote meaningful inclusion and belonging in older adult living communities. |
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Jolene Thibedeau Boyd, Michelle Smith, and Amy Hewitt. On April 26, Thibedeau Boyd (pictured) and
Smith presented a breakout session titled, ”Unleashing innovations to strengthen the direct support workforce: Leading practices from the 2023 Moving Mountains Award honorees,” at the ANCOR conference in Chicago with two representatives from Alpha Supported Living Services, the agency that won this year’s Moving Mountains Award. The two representatives were Scott Livengood and Stephen Lambert, who are the CEO and the Director of Human Resources, respectively, at Alpha Supported Living Services. The breakout session highlighted the initiative—Alpha Workforce Advocacy, Recruitment and Development (AWARD)—that won the Moving Mountains Award.
Hewitt presented the 2023 Moving Mountains Award earlier that morning (April 26) during the plenary session, ”Pioneering the next generation of workforce solutions: Presenting the 2023 Moving Mountains Award.” Desiree Loucks Baer of the National Alliance for Direct Support Professionals and Barbara Merrill of ANCOR co-presented the award. |
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Lucy Evans. On April 27, Evans
received the Civil Service/Bargaining Unit Operational Excellence Award from the University of Minnesota’s College of Education and Human Development. The award was presented at the College’s Spring Assembly and Recognition Ceremony. |
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Julie Kramme, Chet Tschetter, Jerry Smith and Pete McCauley. On May 9, ICI communicators received two of the 2023 Communicator Awards.
Frontline Initiative: The Diverse Voices of DSPs, published by ICI in partnership with the National Alliance for Direct Support Professionals and edited by Kramme (pictured) and
Tschetter, received an Award for Distinction from the 2023 Communicator Awards in the category of Public Relations. ”It’s Up to You. Protect Yourself and the People You Support,” a public service announcement campaign addressing COVID-19 vaccinations among DSPs produced by ICI’s
Smith and McCauley in partnership with NADSP, received an Award for Distinction in the category of Advertising Campaigns—Public Service & Activism for Film & Video.
The Communicator Awards is sanctioned and reviewed by the Academy of Interactive & Visual Arts, an invitation-only group consisting of top-tier professionals from acclaimed media, communications, advertising, creative and marketing firms. |
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From Pandemic’s Depths, A New Passion
Like a lot of college students, Emma Baldwin (they/she) struggled in the depths of the COVID-19 pandemic. Added to mental health issues and a new autism diagnosis, as well as having a close family member with fetal alcohol spectrum disorder (FASD), it was all a bit much. Even a dream study abroad stint in London was cut short by the pandemic lockdowns.
“As we all got sent home, it became clear just how dysregulated everything became,” Baldwin said. “If you struggle with emotional regulation in general, you were a goner for a couple of years.”
After graduating from the University of Minnesota with a bachelor’s degree in technical writing and communications, they went home to California for a short time to regroup.
“Ultimately, I knew I loved Minnesota and was ready to take a step in a definitive direction.”
That step led to St. Paul early last year, and a job as a training coordinator at Proof Alliance, an organization focused on preventing fetal alcohol spectrum disorders. The organization, which had helped Baldwin’s family in the past, delivers prenatal alcohol exposure awareness and education to pregnant individuals, those living with FASD, families, and others.
Baldwin is also actively serving on the Institute’s Community Advisory Council, offering expertise and feedback on critical initiatives, and on the St. Paul Mayor’s Advisory Committee for People with Disabilities.
Read more about Baldwin. |
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This email was sent to ICI staff by Institute on Community Integration, 2025 East River Parkway, Minneapolis, MN, 55414, USA. The University of Minnesota is an equal opportunity educator and employer.
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The University of Minnesota stands on Miní Sóta Makhóčhe, the rightful homelands of the Dakhóta Oyáte. ICI recognizes that the U.S. did not uphold its end of these land treaties. It is the current and continued displacement of the Dakhóta Oyáte
that allows the University to remain today. At ICI, we affirm our commitment to address systemic racism, ableism and all other inequalities and forms of oppression to ensure inclusive communities. |
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