Community of Practice for Supporting Families with Disabilities

Community of Practice for Supporting Families with Disabilities Contact information, map and directions, contact form, opening hours, services, ratings, photos, videos and announcements from Community of Practice for Supporting Families with Disabilities, Disability service, 215 W Pershing Road, 5th floor, Kansas City, MO.

Regardless of how old an individual with ID/DD is and where they live, they are part of families who are critical to supporting, advocating and ensuring that each family member can live an interdependent life, fully integrated into community, as independently as possible, with positive relationships and meaningful days. This virtual community is to create a national dialogue about how families are

currently supporting their loved ones with an intellectual or developmental disability (ID/DD, how we can enhance their ability to access needed supports, and what gaps need to be filled to help families support their family member with a disability to achieve the life they want.

04/14/2026

Did you tune in to the 2026 Sarah Taub Memorial Webinar on paid family caregiving? If not, we’ve got you covered. The recording of the webinar (including a Spanish translation) and a webinar summary can be found on our website (link in comments). We’d love to hear your thoughts and questions about family caregiving – let us know in the comments below!

HSRI Nasddds ADvancing States

04/01/2026

The United States is at an inflection point. As our population ages, the demands on our long-term care system are accelerating; however, the system itself has not kept pace. What we are witnessing is often described as a “caregiving crisis,” but that framing understates the reality.

03/18/2026

The history of HCBS demonstrates that its growth is not, in fact, evidence of massive undetected fraud, but rather is based on decades of federal policy response to major demographic change, guided by national civil rights priorities and implemented with strict fiscal guardrails.

12/06/2025

I've seen what happens when the weight of caring for a loved one becomes too great

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.

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215 W Pershing Road, 5th Floor
Kansas City, MO
64108

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