Community of Practice for Supporting Families with Disabilities

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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.

09/24/2026

Are you interested in starting a respite program in your state or community? Check out this new free resource from ARCH and the Respite Care Association of Wisconsin.

Respite has been identified as a significant need among the nation's more than 63 million family caregivers. Yet the availability of flexible, affordable, high quality respite care options are in short supply. This manual is designed for use by community and faith-based programs, State Lifespan Respite grantees and partners, state and local public and private agencies and organizations, and individuals interested in building respite capacity in their communities to meet the growing need.

Bringing Respite to Your Community, A Program Start-Up Manual, 2nd Edition includes new information and resources that reflect significant developments in the respite field, including release of the National Strategy to Support Family Caregivers; the growth of the Lifespan Respite Care Program to expand and enhance respite care services; expansion of innovative respite models and self-directed respite; and strategies to address the respite provider workforce shortage.

The manual provides step-by-step guidance on program planning; budget and funding; recruitment, hiring, training and retention of staff and volunteers; policies and procedures; daily operations; liability and insurance considerations; marketing and branding; and program evaluation.

Bringing Respite to Your Community, 2nd Edition, is available to download at no charge and is available in both English and Spanish. Read more and download the manual. https://archrespite.org/provider-resources/respite-start-up-manual/




Alabama Lifespan Respite Resource Network (tm)
New Mexico Caregivers Coalition
New Mexico Aging & Long-Term ServicesIll
Tennessee Caregiver Coalition
Tennessee Department of Disability and Aging
New York State Office for the Aging
NYS Caregiving and Respite Coalition
South Carolina Respite Coalition
South Carolina Department on Aging
State of Washington Aging & Disability Services
Nevada Lifespan Respite Care Coalition
Colorado Respite Coalition
Illinois Respite Coalition
Illinois Family Caregiver Coalition
Virginia Department for Aging and Rehabilitative Services
Massachusetts Lifespan Respite Coalition
Idaho Caregiver Alliance
Family Resource Network
Easterseals Delaware & Maryland's Eastern Shore
Easterseals Colorado
Family Caregiver Alliance of Rhode Island
Wisconsin Department of Health Services
Wisconsin Family and Caregiver Support Alliance
Respite Care Association of Wisconsin
OKCares
Nebraska Lifespan Respite Network
Montana Lifespan Respite Coalition
Susan Summers

09/20/2026

💙 ABLE Account or Special Needs Trust — what’s the difference?

Both can be important tools for helping protect the financial future of a person with a disability, but they work in different ways.

Our latest fact sheet breaks down:
âś… Who can have each one
âś… Contribution limits
âś… How they may affect benefits
âś… What the money can be used for
âś… Why some families may choose to use both

Take a look and save this information for future planning!

08/28/2026

As part of VBPD’s recent assessment of supports for family caregivers in Virginia, we found that siblings of Virginians with disabilities are often unsung champions for disability rights and advocacy. As parents age, siblings often assume greater responsibilities as advocates, decision makers and caregivers.

That’s why VBPD recommends that the state develops training programs to help siblings more smoothly transition into these roles with confidence and ease. Go to the full assessment for more details!

https://vbpd.virginia.gov/wp-content/uploads/2026/07/2026-Assessments.pdf

06/11/2026

My 21-year-old daughter and I were chatting the other day and one of her questions caught me off guard.

She asked if I had decided on an age when her brother would move somewhere outside of our home.

At first, I wasn't quite sure how to answer.

The truth is, I don't have a specific age in mind. What I do know is that I'd like any future living arrangements to be established before he turns 30. He's 23 now, and my reasoning has less to do with his age and more to do with mine. I want to be able to check on him regularly. I want to know the people caring for him. I want to advocate for him, troubleshoot problems, and make adjustments while I'm still here to do so.

Because if there's one thing every parent caregiver eventually has to confront, it's this:

We won't be here forever.

It's a thought I hate entertaining.

Like most parents of children with disabilities, my worry is two-fold.

On one hand, I don't want him to leave the safety, familiarity, and unconditional love of home. No one knows him the way we do. No one understands the subtle cues, the routines, the preferences, the triggers, and the countless little things that make his world work.

On the other hand, I know I can't be on call 24 hours a day forever.

At some point, every caregiver reaches a crossroads. We either make plans for the future, or the future makes them for us.

None of us want to think about aging, illness, burnout, or death. But avoiding those realities doesn't make them any less real.

So we plan.

Not because we're ready.

Not because we want to.

Because we have to.

And honestly? It sucks.

It feels unfair that after spending decades fighting for services, advocating for inclusion, navigating systems, and ensuring our children have every opportunity possible, we are also expected to solve the question that keeps us awake at night:

Who will care for them when we're gone?

The answer isn't simple.

In many parts of the country, the options for alternate living arrangements are limited at best. The kind of environments we envision for our loved ones—the ones where people are known, valued, respected, engaged, and loved—often require years of planning, coordination, and financial resources.

I have plans for Skyler's future. Every day, I'm taking steps to help make those plans a reality. But building a sustainable future doesn't happen overnight.

And even if every piece falls perfectly into place, the worry remains.

Will his future caregivers genuinely care about him, or will he simply become another shift on a schedule?

If he's upset or struggling, will someone take the time to understand why? Will they pull out the guidebook we've created and read the letter of intent that explains who he is beyond his diagnosis?

Will they seek to understand his communication instead of assuming he has nothing to say?

Will they laugh with him, tease him, celebrate his victories, and recognize the incredible person he is?

Will they see him the way we do?

I know there is no replacement for a parent caregiver.

No training program, certification, or handbook can replicate decades of love, instinct, and lived experience.

But what frightens me is the growing shortage of people choosing caregiving as a profession. The work is demanding. The pay is often inadequate. The turnover is high. Yet these are the very people who will someday become the bridge between our children and the futures we're trying so hard to build.

As caregivers, we spend years worrying about our children's futures.

The irony is that much of that worry isn't about where they'll live or what services they'll receive.

It's about whether they'll be loved.

Whether someone will take the time to know them.

Whether someone will see the humanity, humor, intelligence, personality, and potential that we've seen all along.

Those fears may never completely disappear.

But perhaps that's because love never does either.

The worry exists because the love exists.

And while I don't know exactly when Skyler's next chapter will begin, I do know this: every decision I make today is rooted in creating a future where he can thrive long after I'm gone.

Not because I'm ready to let go.

But because loving him means preparing for the day when I no longer have a choice.

05/28/2026

Important information about caregiving

In this Age-Friendly Health podcast series, host Katherine Ornstein welcomes Alison Barkoff of Milken Institute School of Public Health to the program to discuss the rising economic and social importance of family caregiving, recent federal policy shifts affecting Medicaid and caregiver programs, and new interventions at the state and private‑sector levels. Support for the Age-Friendly Health series is provided by The John A. Hartford Foundation. Link in comment.

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

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

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