PITCH, Parent Initiative to Create Housing - KY

PITCH, Parent Initiative to Create Housing - KY Our group is working to create funding and housing options for adults with special needs in Kentucky.

08/20/2026

Community living was never supposed to mean families doing everything alone.

As the country moved away from institutions, people with disabilities were supposed to get the support they needed to live in their communities. But respite care, direct support workers, behavioral services, and other help can still be hard to find. Now, some of the support families do have is at risk.

We know from families and our own research what happens when services aren’t there. When services became harder to find, 81% of family caregivers told us they provided more support themselves. More than half reported very high stress, and half said caregiving put pressure on their finances.

A new Washington Post story follows Annie Morgan and her daughter Ava, who has Angelman syndrome. It offers a rare glimpse into what one family’s daily life can look like when the support they need falls short.

Families of people with disabilities already spend too much time piecing together services and filling gaps in a system that doesn’t provide enough support. They need more help to make community living work, not less.

Read Annie and Ava’s story: https://wapo.st/4g29uZ0

07/08/2026

Behind closed doors, millions of Americans are stepping into one of the hardest roles they’ll ever take on: caring for their aging parents.

06/21/2026

Families of people with profound autism: We need to hear from you.

As special education faces major changes, PAA is gathering real-world experiences from families across the country. What is working? What is failing? Are students safe, supported and able to access school?

Please take our brief, confidential survey and share it with others. Every ZIP code matters.

Take the survey: https://www.surveymonkey.com/r/WNX2W78

06/17/2026

I sent a letter yesterday to Governor Beshear and Secretary Stack urging them to stand with Kentucky families of children with Autism. When families gathered on May 27 to share urgent concerns about the lack of residential services and the challenges they face navigating Medicaid, no representatives from the administration attended. These families show up every day for their children, and they deserve a government that shows up for them.

Today at 1PM, the General Assembly’s Interim Joint Committee on Families and Children will hold a hearing on Autism and Autism services.

See full press release and the letter here. https://bit.ly/4vPdOzz

Click here to watch the committee at 1PM. http://ket.org/legislature

06/17/2026

Three minutes of your story can move federal policy.

This July, the National Council on Severe Autism carries family stories directly to Congress through two campaigns, each with its own ask:

1. Fix the Settings Rule. The Medicaid HCBS Settings Rule was built to advance community inclusion, and we support that goal. As written, it leaves the most severely affected without a reliable path to the intensive services they need. We are asking Congress to fix that gap. We need YOUR story about how the Rule is causing harm in your state for your family: text HCBS to (844) 967-4648 or visit ncsautism.quorum.us/campaign/HCBS

2. Count the Caregivers. No federal study has ever counted the families who provide a lifetime of severe autism care. Tell us what that care has cost you and your family. If we want to have care for our children when we're gone, we first need quality studies of what that care really entails so it can be replicated by others when we can no longer provide it. Record up to three minutes or write a few honest paragraphs: text CG to (844) 967-4648 or visit ncsautism.quorum.us/campaign/cg

Name your state. Name what you needed and could not get. Specifics are what make a lawmaker listen.
You cannot fix what you refuse to measure. Add your voice.

[There are TWO policy planks for D.C., so you can participate by sharing your story for one of your choice or both. You do not need to be registered for D.C. to participate.]

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Louisville, KY

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