Community of Practice for Supporting Families with Disabilities

12/02/2025

A new survey by the Survival Coalition of Wisconsin highlights the immense unpaid workload carried by family caregivers across the state. More than 525 respondents from across Wisconsin shared their experiences this summer, painting a stark picture of the challenges faced by families who provide essential caregiving to supplement paid care and fill in gaps when there is no one to hire or workers do not show up.

Almost all survey respondents are participants or are caring for people who are in Medicaid home and community based long term care programs, which provide personal care and home health staffing to make sure people can stay in communities and out of expensive Medicaid-funded nursing homes and other institutional settings.

You can read the full survey results below:
http://www.survivalcoalitionwi.org/wp-content/uploads/2025/11/2025-Nov-Survival-Coalition-Unpaid-Caregiver-Experiences-1.pdf

To stay up to date on how federal funding changes will effect caregiving, join us this Friday, December 5th for our federal funding webinar series.

12/5 registration: https://bit.ly/FedFunds125

06/19/2025

Explore different options for supporting someone to make decisions and choices, organized using the Charting the LifeCourse Integrated Supports Star. Strategies for money management, Personal safety, and general Decision-Making supports are listed and explained.

💡 Know your options. Choose your support.

Find the Supported Decision-Making tools here: https://bit.ly/3SyhyUL

06/18/2025

Family Voices and the Center for Transition to Adult Health Care for Youth with Disabilities are excited to share Moving to Adult Health Care: Leading Your Health Care Visits and Interactions. This toolkit helps young people understand how to take charge of their health care visits. Visit movingtoadulthealthcare.org/toolkits to learn more. Got Transition LifeCourse Nexus SPAN Parent Advocacy Network, Inc.

06/16/2025

06/11/2025

Traveling with a child with autism, especially one who is nonverbal or has elopement concerns, requires thoughtful planning and extra care. Check out this trajectory that shows how one family prepared for a beach vacation, keeping safety, comfort, and fun at the center of their plans. 🌴🐬

Thinking about planning a trip of your own? Our navigators are here to help 👉 https://umkcihd.tfaforms.net/f/MissouriF2F

06/11/2025

In this episode, Colby and Kim Spangler share how Supported Decision-Making opened the door to college, independence, and the creation of Alabama’s Colby Act. You’ll hear how they used Charting the LifeCourse tools to build a personalized team around Colby—and how that changed everything.

Watch on Youtube: https://youtu.be/9oeq6dN-QRs

Listen on Spotify: https://tinyurl.com/cah7xaf5

06/09/2025

Mothers of children with developmental disabilities experience long-term stress, adapting for many years but showing signs of ‘wear-and-tear’ starting around age 65, affecting their physical and mental health.

06/03/2025

Traveling this summer with someone who has medical needs? Planning ahead can make all the difference in creating a safe and enjoyable trip for everyone! 💦☀️

Check out this helpful Travel Tip Star that highlights different types of support that can help you prepare for the journey. Whether you're going across the country or just across town, having the right supports in place can make travel easier and more fun for everyone.

11/05/2024

Honored to facilitate a panel of passionate, powerful and strong family leaders, advocates and professionals at Association of University Centers on Disabilities national conference. The conference provided lots of sessions that highlighted the work of the CoP on Supporting Families and other work that supports the national agenda.

07/06/2024

Exciting step for caregivers of those with dementia and Medicare. One day, hopefully, this will be the norm for all families supporting loved ones with disabilities.

The government is launching an experimental program to ease the burden on caregivers of people with Alzheimer's. The idea is to keep patients healthier without exhausting their families.

06/28/2024

The LifeCourse Nexus Training and Technical Assistance Center at the UMKC Institute for Human Development is hiring a Senior Project Coordinator for Supporting Families. Join the team and discover the joys of building capacity and creating a world where all people have opportunities to explore, problem-solve and plan their good life.

Apply here: https://bit.ly/3Kc8aln

WE ARE HIRING! ⭐

Join our team and discover the joys of building capacity and creating a world where all people have opportunities to explore, problem-solve and plan their “good life.”

We are seeking an experienced and resourceful leader to become a Senior Project Coordinator for Supporting Families with the LifeCourse Nexus. This position will have an integral leadership role in the National Community of Practice on Supporting Families (CoP), which works with more than 20 member states on initiatives leading to systemic change for families and caregivers.

Some duties include:
🟣 Manage and coordinate a portfolio of national and state projects focused on supporting families, caregivers of members who are aging or with a disability.
🟣 Identify and develop new and on-going projects and funding focusing on family and caregiver support with internal IHD staff and external partners.
🟣 Provide technical assistance and training to family-focused organizations and professionals to integrate and implement family support practices, including the LifeCourse framework and tools.

Apply Now 👉 https://bit.ly/3Kc8aln

06/25/2024

Join LifeCourse Nexus Director, Sheli Reynolds, on Jun 27, 2024 at 11:00 a.m. CT for Supporting Family Caregivers: The Changing Policy and Practice Landscape presented by Health Management Associates.

Register here: bit.ly/45FLIuU

UPCOMING WEBINAR: Hear Michelle Reynolds, Ph.D., from the University of Missouri-Kansas City’s Institute for Human Development as she joins with other notable speakers in a webinar focusing on:

SUPPORTING FAMILY CAREGIVERS: The Changing Policy and Practice Landscape

June 27, 11 a.m. CT
REGISTER AT: bit.ly/45FLIuU

Hosted by Health Management Associates, the webinar’s speakers also include:

• Greg Link, MA, Director of the Office of Supportive and Caregiver Services, Administration for Community Living

• Barry J. Jacobs, Psy.D., Principal, Health Management Associates

• Sharon Lewis, Principal, Health Management Associates

Speakers will discuss policy and practice advances and the potential impact these may have on enabling more Americans to live at home and in the community.



Administration for Community Living
Community of Practice for Supporting Families with Disabilities
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