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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New Impact: Sexuality and Gender Identity
As states curtail sex education and place restrictions on gender expression, the new issue of Impact underscores the rights and celebrates the sexual and gender identities of people with disabilities.
Articles call attention to the need for comprehensive education for people with intellectual, developmental, and other disabilities, and also for the natural and paid caregivers who support them. Legal and policy challenges and changing societal perceptions are discussed, as are current and historical discriminatory practices against people with disabilities in their pursuit of intimate relationships and marriage.
“I’m very proud and excited about the work presented in this issue,” said Rebecca Kammes, a postdoctoral fellow at the UCLA PEERS Clinic, who served as an issue editor. “The articles highlight the importance of discussing diverse experiences with sexuality and gender identity, and the positive effect of prioritizing conversations on this topic within the community.”
Several articles center on the intersection of disability and LGBTQ+ identity.
In one article, Eddie Harriel, Jr. of Chicago shares what it was like to come out as a gay man within his religious community.
“In my church, being gay isn’t something people talk about,” Harriel writes. “I’m still active in my church, and I’m still fighting battles about my identity. That doesn’t make me sad. It is just how it is…. My spirit says I cannot give up.”
Read more about the new Impact. |
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Advancing Inclusion in Taiwan
Institute on Community Integration director Amy Hewitt (pictured at the lectern) and Kelly Nye-Lengerman, director of the Institute on Disability at the University of New Hampshire, recently helped lead a conference in Taichung City, Taiwan that was focused on inclusive community living for people with disabilities.
A 2019 book they edited, Community Living and Participation for People with Intellectual and Developmental Disabilities, was recently translated into Mandarin Chinese, prompting the invitation by the Maria Social Welfare Foundation
to speak on different aspects of inclusion at the conference. In south Taiwan, Hewitt and Nye-Lengerman also visited several service and program providers, including programs similar to U.S. day programs, that are operated by the foundation.
Hewitt shared the latest U.S. statistics and strategies on self-determination, residential and in-home supports, aging, and the direct support workforce. Nye-Lengerman, a former director of ICI’s Community Living and Employment focus area and a University of Minnesota graduate, discussed employment strategies and person-centered planning for people with disabilities.
A critical aspect of the conference was bringing providers together to coalesce around a movement to increase community services in Taiwan. While there are community supports in Taiwan, they are not the predominant model of support.
“Just as we are in the United States, they are struggling to find staff to work in disability services due to low wages, demographics, and the difficulty of the work compared to similar-paying jobs,” Hewitt said.
Meeting with service providers, Hewitt and Nye-Lengerman observed a retail café staffed in part with people with disabilities from local day programs.
“I was impressed by the training programs we observed that actually led to competitive employment,” Hewitt said. “The entrepreneurial drive of the organizations was compelling. They owned community businesses that employed people without and people with disabilities.”
Hewitt and Nye-Lengerman both said they were struck by the relative importance of community and family needs and desires, compared with the more individualistic framework common in the United States.
Despite the differences, it was heartening to observe the enthusiasm building for competitive employment among people with disabilities, Nye-Lengerman said.
Read more about advancing inclusion in Taiwan. |
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New Frontline Initiative: Ethics in Your Toolbox
A powerful new issue of Frontline Initiative guides direct support professionals through the ethical dilemmas they face each day in supporting people with disabilities to live their fullest lives.
The new issue highlights the nine tenets of the National Alliance for Direct Support Professionals (NADSP) Code of Ethics, with videos created in partnership with the Institute on Community Integration that explain each one and articles that offer context and examples DSPs can use in their everyday work.
ICI director Amy Hewitt, who helped create the code in 2000, shares its history and the organizations that participated in its creation.
“DSPs who support people in the community will always be called upon to make independent judgments involving both practical and ethical reasoning,” Hewitt writes. “[The code] is a roadmap to assist DSPs in staying the course of securing freedom, justice, and equity for everyone they support.”
Joseph Macbeth, NADSP president and chief executive officer, shares a few of his own ethical lessons learned from early in his career as a DSP, and writes about the critical importance of having a code.
Given the high turnover in the DSP field, it was important to dedicate an issue of the online publication to highlighting the importance of the code for people who may not be familiar with it, said Julie Kramme, co-editor of Frontline Initiative.
In her article in the new issue, DSP Cheryl Nelson calls the code of ethics the most valuable guide in a DSP’s toolbox.
“This is a big, in-depth issue, with examples of decisions in each tenet of the code,” said Chet Tschetter, co-editor. “The people who created the tenets really thought about the different aspects of people’s lives and they understood this work isn’t all black and white, but has important nuances.”
Frontline Initiative also recently launched a podcast series, A Closer Look.
Read more about the new Frontline Initiative. |
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Surveys: COVID-19’s Heavy Toll
Staffing challenges, inadequate wage increases, burnout, and depression formed COVID-19’s legacy among the professionals who support people with disabilities in their daily lives, a new report from the Institute on Community Integration shows.
Direct support professionals (DSPs) worked more overtime hours and took on new duties during the pandemic as many of their colleagues were unable to work. Their average hourly wages grew 13 percent, to $16.58, during the April 2020 to July 2022 period, but it wasn’t enough to adequately cover living costs. By 2022, about two-thirds were working additional weekly hours due to the pandemic.
“Asking these professionals to continually add work hours and new responsibilities exacerbates burnout and accelerates the retention challenges that service providers have been battling for many years,” said Sandra Pettingell, an ICI research associate and lead author of the November report, Direct Support Workforce and COVID-19: What Happened Over 24 Months?
The report is a summary of four online national surveys ICI administered with several partners, including the National Alliance for Direct Support Professionals, ANCOR, The Arc, and NASDDDS. Nearly 9,000 DSPs and frontline supervisors (FLS) completed the first survey, the largest survey to date of this workforce. In total, roughly 25,000 surveys were completed.
At the 24-month mark:
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Nearly half (47%) of DSPs had not received COVID-19 augmentation pay or a bonus.
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52% had been diagnosed with COVID-19.
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16% of the DSP workforce had been vaccinated.
“In Covid’s early days, we knew that direct support professionals were, once again, about to be immersed in crisis. It was critical to understand how their work, their health, their mental health, and their home lives would be affected,” said Joseph Macbeth, chief executive officer and president of the National Alliance for Direct Support Professionals. “The NADSP team worked closely with ICI to get the word out to tens of thousands of DSPs through our robust social media forums and our connections within the provider community. It would have been a colossal failure for our field if we did not capture and publish the impact that the virus had on our workforce.”
Read more about the latest Covid report. |
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RISP Website Revamp
The website of ICI’s longest-running research study— the Residential Information Systems Project (RISP)—was updated to be easier to use. RISP’s new homepage has links to five key questions and to project announcements, Policy Research Briefs,
publications, state profiles, infographics, and customizable graphs. Visitors can sign up to receive updates. “We wanted to make it easy for people with disabilities, families, and others to find answers to their questions. Clicking on a key question takes the reader to a graphic and plain language answer,” RISP director Sheryl Larson (pictured) said.
Since 1977, RISP has gathered, maintained, and analyzed longitudinal data on Medicaid-funded long-term supports and services (LTSS) for people with intellectual and developmental disabilities. It describes state and national trends in where LTSS recipients live, examines the impact of Medicaid and other federal policies on state systems, and informs research, legislation, litigation, and policy. The project is part of ICI’s Community Living and Employment program area. A Longitudinal Data Project of National Significance, RISP is funded by the Administration on Community Living, U.S. Department of Health and Human Services, with supplemental funding from the National Institutes on Disability, Independent Living and Rehabilitation. |
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Sanju Koirala, a graduate student at the U of M - Institute of Child Development and a former MN LEND fellow, is interested in characterizing brain-behavior association over development and examining how that might differ in various neurodevelopmental and neurological disorders. https://bit.ly/47pHYgD |
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NCEO Tool 15: Multi-Tiered Systems of Support (MTSS) for Students with the Most Significant Cognitive Disabilities
Authors: Martha L Thurlow, Gail Ghere, and Kathy J Strunk
This tool provides information on the Multi-Tiered Systems of Support (MTSS) for students with the most significant cognitive disabilities for parents in the form of a fact sheet, and a set of frequently asked questions that provide additional details about MTSS. These parent resources are available for states to adapt and share with districts, parent organizations, and parents. This resource was developed through a collaboration with members of the TASH Inclusive Education Community of Practice and staff from 49 states and the Bureau of Indian Education who participated in the 1% Community of Practice. Published by ICI’s National Center on Educational Outcomes (NCEO). Part of
NCEO’s 1% Toolkit series. |
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Accommodations Toolkit
The Accommodations Toolkit provides easy-to-use summaries of the academic research literature on specific accommodations for students with disabilities as well as policy analyses. Published by NCEO, the Accommodations Toolkit
is organized by accommodation (e.g., tactile graphics, braille, test breaks, extended time), with a research fact sheet for each accommodation. The toolkit also includes a policy analysis that summarizes how each accommodation was included in states’ accessibility policies. The resources in the toolkit are designed to support the work of state education agencies, but may also be helpful to technical assistance providers, researchers, and others. The latest additions to the toolkit are about screen readers. |
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MIHEC Learning Community Webinars
This webinar series gives a glimpse of what going to college is like, how to prepare for college and learn about different colleges, and what is happening in Minnesota for students with an intellectual disability. The presenters are members of the Minnesota Inclusive Higher Education Consortium (MIHEC)
workgroup. Each presentation is followed by a question-and-answer period with webinar participants. To date, this year’s webinars include the following: |
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Self-Directed Supports Briefs
ICI’s Self-Directed Supports with Independent Support Services project evaluates a New York approach to self-directed supports and analyzes national trends in self-directed supports. The project examines how families navigate a self-directed approach when the primary caregiver can no longer provide support to the self-directed process. Collaborating with community partner Independent Support Services, Inc., the project collects data that integrates the views of key stakeholders, including individuals who self-direct, their families, and administrators/staff working in the field of self-direction. The project recently published the following briefs: |
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Journal Article Published
Houseworth, J., Pettingell, S. L., Bershadsky, J.,
Tichá, R., Lemanowicz, J., Feinstein, C., & Zhang, A. (2023). Examining choice and control for people with IDD over time.
American Journal on Intellectual and Developmental Disabilities, 128(6), 449–461. https://doi.org/10.1352/1944-7558-128.6.449 |
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Charting the LifeCourse Online Sessions
Begins November 22
10:30 a.m. - 12:00 pm Central Time
Charting the LifeCourse helps you plan a good life with your child or young adult. Develop supports that help your family member live the life they want. Join us for the first Zoom session on November 22 and learn to use Charting the LifeCourse to support the Individual Education Plan process. The other four sessions (which run from January through May 2024) explore planning transitions, balancing safety and the dignity of risk, communicating with teams, and supporting out-of-school activities.
Learn more about Charting the LifeCourse and register. |
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MNLEND Seeks Fellows for 2024–25 Year
ICI’s Minnesota Leadership Education in Neurodevelopmental and Related Disabilities (MNLEND) program is accepting fellowship applications for the 2024–25 year.
MNLEND is a 10-month interdisciplinary leadership training program in policy advocacy and evidence-based research and practices to develop new leaders to be skilled in systems-thinking, effective in interventions and practices, and able to improve quality-of-life outcomes for children and youth with neurodevelopmental and related disabilities. Benefits include a generous stipend, national networking opportunities, lifelong interdisciplinary connections, and interdisciplinary leadership development. The MNLEND 2024–25 cohort training runs from mid-August 2024 until mid-May 2025. People from underrepresented and/or underserved communities are strongly encouraged to apply. Funded by the U.S. Maternal & Child Health Bureau. The early admission consideration deadline is January 5, 2024.
Read more about MNLEND. |
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MIHEC November Learning Community Event: “High-Quality Inclusive Higher Education Initiatives”
November 28
3:00–4:15 pm Central Time
Register for this Zoom session
on creating an effective post-secondary education program for students with intellectual disability, from start to finish. It will be led by Edie Cusack from the College of Charleston in South Carolina. She established a successful four-year, fully-inclusive postsecondary education initiative with students participating in academic classes and living in residence halls. She will discuss planning, potential barriers, training, engaging all stakeholders, and measuring outcomes. Cusack will explain how to prepare faculty and staff and develop support systems such as tutors and mentors. She will also suggest how students and their parents can prepare for college while still in high school and share tips for the college search. Hosted by ICI’s
Minnesota Inclusive Higher Education Consortium (MIHEC). |
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Congress of the International Association for the Scientific Study of Intellectual and Developmental Disabilities
August 5–8, 2024
Chicago
The 17th World Congress of the International Association for the Scientific Study of Intellectual and Developmental Disabilities (IASSIDD 2024) will be held in Chicago from August 5–8, 2024. This is an exciting opportunity to learn about recent research findings and major advances in the biological, behavioral, humanities, and social sciences related to intellectual and developmental disabilities. IASSIDD looks forward to welcoming self-advocates to the conference, benefiting from their expertise and learning from their lived experience. Visit iassidd2024.org for more information. |
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Amy Hewitt, David Johnson, and Sarah Hall. From October 1–11, Hewitt (pictured),
Johnson, and Hall
participated in an American Association on Intellectual and Developmental Disabilities (AAIDD) delegation trip to Italy to research the structure and delivery methods of supports provided for people with intellectual and developmental disabilities. The trip included site visits to schools, clinics, and facility- and community-based services, and learning firsthand about the nation's approach through meetings with representatives of health, education, and social service systems, including policymakers, academics, clinicians, and educators.
Later — during the Association of University Centers on Disabilities (AUCD) 2023 Conference in Washington, DC, November 5–8 — Hewitt received AUCD’s George S. Jesien Distinguished Achievement Award. The award was presented in recognition of her 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. |
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Julie Bershadsky, Sandra Pettingell, Chet Tschetter, and Megan Sanders. On October 3–5, Bershadsky (pictured) and
Pettingell delivered an in-person SupportWise Data Portal Boot Camp for human resources and administration staff from Community Provider Network of Rhode Island providers. SupportWise Data is part of ICI’s Direct Support Workforce Solutions
, a national consulting group addressing the workforce needs of organizations providing community-based supports for individuals with disabilities. On October 19, Tschetter and Sanders hosted a virtual Cohort Connect for frontline supervisors from the Community Provider Network of Rhode Island. |
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Rebecca Dosch Brown. On October 6, Dosch Brown
participated in the University of Minnesota School of Public Health’s Rural Collective gathering in Duluth to hear about dementia research in rural and tribal communities and UMN Extension’s Tribal Family Health activities. She spoke to researchers from the University of Minnesota system campuses about MNLEND and ICI’s work in order to foster connections with UMN researchers focused on rural and tribal nations. Dosch Brown also gave Learn The Signs, Act Early materials to the researchers to take back to their community programs and rural and tribal clinics. |
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Brian Abery, Emily Unholz-Bowden, and Renáta Tichá. On October 10, Abery (pictured) and
Unholz-Bowden presented on “Guardianship, Alternative Forms of Substitute Decision-Making, and Supported Decision-Making” at the Annual Hennepin County Transition Extravaganza. On October 19, Abery and Tichá,
along with Utah State University colleagues Tim Reisen and Katie Emmett, presented in Reno, Nevada on “Community Collaborations for Employment Programs: Perspectives from Two States“ at the Annual Conference of the Council for Exceptional Children - Division on Career Development and Transition. |
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Ann Thompson. On October 18–20, Thompson exhibited and promoted Check & Connect at the Division of Career Development and Transition (a division of Council for Exceptional Children) in Reno, Nevada. |
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Jessica Bowman, Jennifer Sommerness, and Gail Ghere. On October 20, Bowman (pictured) and
Sommerness presented a full-day workshop on ”Inclusive Practices for All” for the Special Education department in Puyallup School District in Washington State. On October 20, Ghere
presented with members of the State of Washington Office of Superintendent of Public Instruction at the Washington State Association of School Psychologists on ”Inclusive Education for Students with Extensive Support Needs: School Psychologists as Leaders for Equity in MTSS.” On October 27, Sommerness co-presented on ”Enhancing Inclusion of Students with Extensive Support Needs in School-wide PBIS” at the PBIS Leadership Conference in Chicago. |
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Julie Kramme. On October 24, Kramme
presented in Des Moines, Iowa on direct support workforce staff stability data and facilitated a discussion with administrative staff from 15 provider organizations about workforce issues facing their staff as a part of a training evaluation project funded by Polk County Behavioral Health and Disability Services. |
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Mark Olson, Nicole Duchelle, Claire Benway, Nik Fernholz, and Jennifer Hall-Lande. The Minnesota Gathering for Person-Centered Practices
was held in person in Cloquet and Rochester on October 24, and online on October 26. Olson (pictured) and Duchelle helped organize the Gathering. Benway and
Fernholz planned and executed the event. Hall-Lande delivered the online welcome. ICI was among the presenters of the Gathering. |
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Barbara Kleist. On October 31, Kleist
began her term of leading The Arc/American Association on Intellectual and Developmental Disabilities (AAIDD) Policy and Positions Health Workgroup. This workgroup is reviewing and proposing changes to The Arc/AAIDD’s joint position statement over the next 4–6 months. |
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Yue Wu. On October 31, Yue
presented, “Understanding Parents Voices in Mainland China,” at the American Congress of Rehabilitation Medicine’s 100th Annual Conference in Atlanta. Her mixed-methods study analyzed how parents of children with disabilities viewed rehabilitation services in China and showed how regional differences in that country affected caregivers’ experience of having a child with disabilities. On November 1, Yue presented her poster, “The Feasibility and Efficacy of Tele-Music Therapy on Children with Autism Spectrum Disorder,“ at the same conference. |
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Fruitful Change
By the time Archita Jain (MNLEND 2022–23) was a third-year dental student, she already had years of experience working during high school and college at a community center with adults and children with disabilities. Many of the families she met shared their frustrations with the oral health care system.
“They would talk about how oral health was very poorly done,” she said. “They would talk about patients being put to sleep for the entire treatment and there was no real caregiving being done, which is really sad. I went to dental school because I wanted to be that provider who could be an advocate for them.”
Her original plan to be a general dentist took a turn last year, however, as she completed her Minnesota Leadership Education in Neurodevelopmental and Related Disabilities (MNLEND) fellowship.
“Week by week at LEND, I realized there is so much more to this. Hearing from fellows who had different experiences, and who had done extensive research and had different backgrounds, I always wanted more. At the same time, I was going through my surgery rotation and seeing the challenges of treating medically complex individuals. I started thinking back to my earlier experiences and realized how few spokespeople there are in surgery for people with disabilities, and that having providers in these spaces can truly make change that is more fruitful.”
Read more about Jain. |
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This email was sent to FYI subscribers, the directors of states' developmental disabilities departments, and registrants of the 2022 Reinventing Quality conference 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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