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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Squeezed: Caregivers Report Less Help, More Stress
A new survey from the University of Minnesota and The Arc of the United States shows more than half of family caregivers are suffering from very high or extreme levels of stress, despite a nationwide work-from-home trend. Nine in 10 caregivers say their careers have been negatively affected by their caregiving responsibilities.
The 2023 Family and Individual Needs for Disability Supports (FINDS) survey of 3,118 participants across the United States was presented to the National Institute on Disability and Independent Living Rehabilitation Research.
“The shortage of direct support professionals is causing a lot of hardship for families,” said Lynda Lahti Anderson, co-author of the report, along with Sandra Pettingell. The authors are part of the Research and Training Center on Community Living at the University of Minnesota’s
Institute on Community Integration.
The survey explores the caregiving experiences of people with disabilities and natural caregivers, who are typically parents, siblings, or friends. Previous reports were released in 2010 and 2017. The Arc, a longtime ICI partner, collaborates with the Institute on survey design and distribution, and reviews the findings in the report.
“Managing the complex needs of people with disabilities with little government support and no training has left family caregivers stressed, isolated, and suffering financially,” said Julie Ward, senior executive officer, public policy, for The Arc. “Family caregivers are the backbone of our country’s care infrastructure, doing essential work to ensure people with IDD are treated with dignity, have the freedom of choice, and have good quality of life. It’s work that is unpaid and often unseen, and we hope this survey shines a light on the dire need for federal and state investment in supports and services.”
ICI Director Amy Hewitt said the data across all three surveys demonstrates the ongoing cost-shifting that families have absorbed as more people with IDD live independently in the community instead of in large institutions.
“Family members have paid a steep price for their loved ones with disabilities to live at home, and unlike those who care for aging parents, they typically provide this care for many years,” Hewitt said. “This negatively affects their careers and their long-term savings rates, as well as their own eventual Social Security benefits. As a society, we deemed institutions as unacceptable places for Americans with disabilities to live, but we haven’t provided the means to support their lives in the community by paying professionals acceptable wages to assist working families. And so, it falls to family members to fill the gap.”
In the survey, caregivers reported more difficulties getting respite care, and many who received pay for providing care during the COVID-19 pandemic have now lost that support. Nearly three quarters reported increases in out-of-pocket care costs since the last survey, and half agreed or strongly agreed they were under financial strain due to providing support to their loved ones. Nearly 70% said the ongoing shortage of professional caregivers, known as direct support professionals, had negatively affected them and their family members.
One family member, a single mother who works as a hospital nurse, shared that when her child’s support staff doesn’t show up for work, there are no other family backup caregivers.
“If she eventually loses her job because of these care situations, what is she going to do?” Lahti Anderson said. “These family members took a substantial amount of time to complete this survey because they want people to know how dire the situation has become. They want to be heard.”
Read more about FINDS. |
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Double Dose of Awareness
Amid worries about a fall surge in COVID-19 cases, the Institute on Community Integration has created a series of new public service announcements encouraging caregivers to get vaccinated. It will also distribute about 500 kits with information about COVID-19 and other infectious diseases, pain-relief devices for people with needle fears, and other items at upcoming fall events.
“Some people with disabilities, as well as older people, have an elevated risk of serious disease and hospitalization, and it can be debilitating,” said Lynda Lahti Anderson, an ICI research associate. “Meanwhile, direct support professionals (DSPs) may be working in multiple locations with people who are vulnerable, so making sure their vaccines are up to date is very important.”
The work is part of an ongoing partnership with the Association of University Centers on Disabilities (AUCD) to assist the Centers for Disease Control and Prevention with public health messaging about vaccines.
Meanwhile, the Institute recently released several new public service announcements in the “It’s up to you” series. The PSAs encourage DSPs to get their COVID-19 vaccines and to encourage the people they support to get them, too.
One video shares the story of Richard Chevrette (pictured at right with the person he supports), a retired heavy construction foreman who, looking for meaningful work in retirement, became a DSP.
“I was on the fence at first (about getting a vaccine), until I saw first-hand that Covid is very dangerous” Chevrette says. “The primary concern is the health, safety, and good life of the people you’re taking care of. It’s not you we’re talking about. It’s the people you support we’re talking about.”
Read more about the public service announcements. |
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ICI Collaborates in India
The Institute’s Global Resource Center for Inclusive Education (GRC) is helping to establish an assistive technology center at KL University in Andhra Pradesh, India and will collaborate on future inclusive education initiatives. The organizations will explore new assistive technologies and inclusion strategies that address critical needs in the disability community.
“This partnership has opened up new opportunities for ICI, including potential projects with national technology funding sources,” said Renáta Tichá (pictured fourth from left with KL University counseling staff), co-director of the GRC. “Equally important, it allows us to connect the social aspect of inclusion with their technological innovations in ways they hadn’t done before.”
The partnership will encourage faculty members to embark on socially-beneficial research, said Jayaprakash Jala, deputy director of international relations and associate dean of academics at KL.
“We recognize that one of the major problems to solve for our future is our preparedness levels for dealing with disability and old age,” he said. “To take on this challenge, we wanted to join hands with a university experienced in these issues, and we are excited about this combination.”
Pavan Kumar Bada, one of 28 global scholars who took part in a 2017 U.S. State Department fellowship hosted by ICI and Arizona State University, brought KL and ICI together.
“As a technological institution, KL has design and innovation courses. These students go out into the community to assess needs and solve real problems,” Bada said. “I knew this was the opportunity to use what I learned. It has given me a chance to advocate for putting inclusion ahead of everything else.”
Read more about the partnership. |
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Inclusive Higher Ed Moves Forward
The University of Minnesota’s Institute on Community Integration signed an agreement with the Minnesota Office of Higher Education (OHE) on October 15 to establish a technical assistance center that will create self-sustaining education options across the state for students with intellectual disability who want to earn postsecondary credentials. The Minnesota legislature has also earmarked $750,000 for annual competitive grants to institutions launching these programs.
“This is a key milestone in the effort to move Minnesota forward in expanding inclusive higher education opportunities for students with intellectual disability,” said Mary Hauff, who formed the Minnesota Inclusive Higher Education Consortium
(MIHEC) at the Institute. Hauff will collaborate with OHE to formalize the framework for expanding higher education options in Minnesota, offering guidance and training to colleges and educational agencies on providing inclusive higher education. Funding for the development of the Inclusive Higher Education Technical Assistance Center was secured in the Higher Education Omnibus Bill during the 2023 legislative session. The OHE will oversee the competitive grant process, with a first round of requests for proposals expected in the spring of 2024, with grants awarded before July of 2024.
MIHEC will present an online community of practice event from 3 p.m. to 4:30 p.m. on October 17, on “Inclusive Teaching, In Practice and Theory.” Community of practice sessions are for Minnesota college and university faculty and staff interested in inclusive higher education initiatives. |
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Jean Hauff is proof positive that students with intellectual disability can succeed in college. Learn about Jean's journey to pursue a postsecondary credential. MIHEC expands college options in Minnesota so that more Minnesotans with intellectual disabilities can go to college. https://bit.ly/3rN5Ziz |
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New Policy Research Briefs
Policy Research Brief is a series of briefs that summarize recent research on a range of policy issues affecting persons with intellectual and developmental disabilities. The briefs are published by ICI’s Research and Training Center on Community Living. Four Policy Research Briefs were released recently. |
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Policy Forum: Institutional Bias in Long-Term Services and Supports for People with IDD
This Policy Forum from October 3, 2023, discussed the Policy Research Brief titled, Institutional Bias in Long-Term Services and Supports for People with IDD. Slides from the presentation are included.
Discussants included Brian Begin and Sheryl Larson from ICI; Agnes Cole
(MNLEND Fellow, 2022–23); Michael Gamel-McCormick, Disability Policy Director, U.S. Senate Special Committee on Aging; and Heidi Hamilton, Disability Services Director, Minnesota Department of Human Services. Julie Bershadsky from ICI facilitated the discussion.
The Policy Forum is hosted by ICI’s Research and Training Center on Community Living. |
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NCEO Parent Fact Sheet 5: Engaging Culturally and Linguistically Diverse Families
Authors: Charity N Funfe Tatah Mentan PhD, Martha L Thurlow, Andrew R Hinkle,
Kristin K Liu, and Sheryl Lazarus
This fact sheet provides educators with strategies that will help them engage culturally and linguistically diverse families and their children. These strategies can help overcome the challenges of gaps in communication, cultural differences, culturally responsive teaching, and understanding home culture and individual students’ characteristics, including disability and English learner status. Additional strategies are provided for working with culturally and linguistically diverse families whose children have disabilities or are receiving English language development services. Published by ICI’s National Center on Educational Outcomes (NCEO). |
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NCEO Newsletter: October 2023 issue
The NCEO Newsletter is released quarterly. Effective communication is a cornerstone for fostering collaboration, understanding, and ultimately, student success. Recognizing the importance of communication, this issue features some of NCEO’s resources for parents and families. This issue of the newsletter presents articles on NCEO’s new Empowering Parents Toolkit; several powerful fact sheets that state education agencies, districts, and schools can use to engage parents and families and enhance their understanding of state assessments; various NCEO resources for parents; and other recently-published NCEO resources. |
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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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2023 Minnesota Gathering
In-Person and Online
October 24 and 26
October 24
Two locations in-person
North Region
Cloquet Forestry Center (near Duluth)
South Region
Wood Lake Meeting Center, Rochester
October 26
Online via Zoom
Person-centered practices assist people in creating a positive and meaningful life and build on people’s unique interests and strengths. The Gathering is your annual event to meet and learn how person-centered thinkers are planning, providing, and organizing services rooted in listening to what people want and helping them live in their communities based on their choices. Disability-related services, nursing homes, behavioral health organizations, family homes, and other human service programs are just a few examples of settings where person-centered strategies are used to improve quality of life. Scholarships to the Gathering are available.
Register for the Gathering. |
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Access Press Celebration and Fundraiser
Friday, November 3
5:30–8 p.m.
University of Minnesota
McNamara Alumni Center
Memorial Hall, first floor
200 Oak Street SE
Minneapolis
Emceed by KARE-11’s Boyd Huppert, who has done many stories about Minnesotans with disabilities, this event is a great way to connect with members of our community. Honor U.S. District Court Judge Donovan Frank, who won this year’s Charlie Smith Award. Listen to newspaper board members and staff pay tribute to the late Tim Benjamin, longtime executive director of Access Press. The fun starts at 5:30 p.m. with registration and reception. The dinner and program start at 6:30 p.m. Buy tickets online. |
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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 five Zoom sessions that include developing Individual Education Plans, planning transitions, balancing safety and the dignity of risk, communicating with teams, and supporting out-of-school activities. These sessions run through May 2024.
Learn more about Charting the LifeCourse and register. |
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Julie Kramme, Chet Tschetter, and Megan Sanders. On September 8, Kramme (pictured) and
Tschetter presented on Frontline Initiative at the National Alliance for Direct Support Professionals Conference in Pittsburgh, Pennsylvania. Kramme, Tschetter, and their audience discussed topics for future issues of Frontline Initiative
that are relevant to today's direct support professionals, and how audience members could get involved by writing an article or joining the magazine’s editorial board. On September 19–20, Tschetter and Sanders presented the frontline supervisor trainings, “Supporting Employees & Reflecting on Your Growth” and “Retention & Reflections” to supervisors from the Community Provider Network of Rhode Island. |
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Jerry Smith and Pete McCauley. On September 8, Smith
(pictured) presented new public service announcements encouraging vaccinations at the National Alliance for Direct Support Professionals (NADSP) Conference in Pittsburgh, Pennsylvania. Smith and McCauley produced the video series in partnership with NADSP. See the related feature story. |
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Lynda Lahti Anderson. On September 14, Lahti Anderson presented findings from the FINDS survey on the status of family caregivers to the Minnesota Department of Health’s Forum on Supporting Families. She was a member of the forum’s planning committee. |
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Sheryl Lazarus, Andrew Hinkle, and Kathy Strunk: On September 26–27, staff from ICI’s National Center on Educational Outcomes
(NCEO) presented at the U.S. Department of Education, Office of Elementary and Secondary Education’s 2023 State Assessment Conference that was held in Arlington, Virginia. NCEO director Lazarus (pictured), Hinkle, and
Strunk organized the strand on Best Practices for Reducing and Maintaining Appropriate Alternate Assessment Participation Rates. In this stand, Hinkle, Strunk, and Lazarus presented on “1% Bootcamp (Parts 1 and 2)”, “Eligibility for Participation in the Alternate Assessment”, “Root Cause Analysis and Continuous Improvement (Parts 1 & 2)”, “Monitoring Alternate Assessment Participation Rates,” and “Addressing the 95% Assessment Participation Requirement.” Also, during the conference, Lazarus presented in the Innovative Assessment Demonstration Authority (IADA) strand on “Including All Students in IADA.” |
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Eileen Klemm. On September 26–28, Klemm
presented a breakout session for the Communities in Schools-Virginia Network Summit & 25th Anniversary Celebration in Richmond, Virginia. The presentation titled “Check & Connect Readiness Tool” provided a demonstration of this online support module and described how the Check & Connect intervention can be integrated into the Communities in Schools model. |
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Tom Donaghy. On September 29–30,
Donaghy staffed the ICI booth at the Minnesota Self-Advocacy Conference in Prior Lake, MN, telling attendees about ICI’s Self-Advocacy Online website. ICI was a sponsor of the conference. |
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Uma Oswald, Katrina Simons, and John Smith. On October 5, writer/editor Alice Wong discussed her book Disability Visibility
and the critical need for disability justice with a panel of ICI staff and fellows at CEHD Reads. Hosted by the University of Minnesota’s College of Education and Human Development, this event took place at the University’s Ted Mann Concert Hall. Panelists (pictured from left to right) included Oswald (partially obscured), Isabelle Morris (MNLEND fellow, 2022–23, in white top), Simons, and
Smith. |
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Roger Stancliffe. The World Congress of the International Association for the Scientific Study of Intellectual & Developmental Disabilities (IASSIDD) invited
Stancliffe to be a keynote speaker in Chicago next August. IASSIDD is a non-state member of the World Health Organisation and the 2024 congress will emphasize research, policy, and service developments that advance the United Nations Sustainable Development Goals as they apply to people with intellectual and developmental disabilities. |
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Brynn Sexton
In May, Brynn Sexton stood with family and friends on the steps of the Minnesota State Capitol, celebrating the passage of legislation that established funds for inclusive higher education in the state. Earlier this year, testifying in favor of the legislation, she included a video of herself using American Sign Language (ASL) to make her portion of the proceeding accessible to deaf viewers.
“I am testifying because I want people with all disabilities to be able to go to college,” she said. “I am speaking up for myself and others to advocate for our dreams. When I testify in person, I use American Sign Language (ASL) to share my story because I want to go to college and get an ASL certificate. I want to get a job and live with family or someone I know.”
The new legislation will help the Minnesota Inclusive Higher Education Consortium (MIHEC) to increase initiatives that provide opportunities for students with intellectual disability to earn meaningful credentials, compete for jobs in the community, and live more independent lives. The Institute is the host organization for MIHEC.
Sexton, who has Down syndrome, is not deaf. She started signing when she was a young child as a communication tool, and kept going, studying ASL throughout high school. Today she is a student at Transition Plus, which provides training, education, and independent living services to post-secondary students. She has also taken an ASL course at North Hennepin Community College and hopes to take more in the future.
As she celebrated the legislation becoming state law, she spotted Nic Zapko, ASL interpreter to Gov. Tim Walz. They had a brief conversation, and Zapko shared her social media details with Sexton.
“I have seen her in a lot of videos with the Governor, and I really love the way she signs,” Sexton said. Zapko is noted for her animated, charismatic style as she provides interpretation. “Seeing her in person was eye-opening and we connected even though she’s a deaf interpreter and I’m hearing and have Down syndrome. We both have disabilities and we both love American Sign Language.” |
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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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