NCSA Authentic Awareness Assembly
July 14, 2026, Washington, D.C.
Good morning. Before I begin, I’d like to thank Jill, Jackie, and NCSA National for their compassion and for allowing me to speak to all of you today.
A little over a year ago I sat in the Edlavitch JCC with so many of you, fangirling while listening to speeches by so many women whose writing and work I’ve admired over the years, truth and inspiration and a call to action by Jill and Jackie, Amy, Alison, and Judith. I left the conference and our day on the hill with new friendships forged, and a renewed determination to continue to fight for reforms regarding Medicaid and safety issues, among others, for my then twenty-one-year-old son Justin. I came home and told the women in HomeLife 21, my non-profit for residential change, that at last, we’d found our people.
I am grateful I didn’t know then, that despite all the work done by advocates, the bills created, the alliances formed with politicians, the writing and speaking on behalf of all our profoundly autistic children, one year later my son would still die horrifically, tragically, and unnecessarily at his adult day program, not even two years after he graduated high school.
I am grateful I didn’t know I had one year left before I would receive the phone call to race to a local hospital where my world as I knew it, would end.
A little while after Justin passed, a good friend in the autism world asked me if I would continue with my advocacy.
As I sat with her, I remembered waking up in a cold sweat a few nights before, with the thought that I was no longer a mom.
Justin has a younger brother. I reminded myself I was still very much mom to him.
That thought was quickly followed with my no longer being an autism mom.
My other child is autistic as well, but he is level one.
I am confident I don’t have to explain the difference to this audience.
And then the really chilling thought entered my brain at 3:00 in the morning.
I was no longer a profound autism mom.
And I realized, in that moment, that I no longer identified as a white, petite, blond woman.
I identify as a profound autism mom.
And I accepted in the wee hours of the morning that a still undetermined amount of time of neglect on a Wednesday morning, could rob me of twenty more years with my son.
But it could never steal my identity.
I will continue to stand with you.
For the audacity of Jill and Jackie and others to create this entity even within the face of opposition within our own community, because our fears for our children must be heard.
For the courage all of you with profoundly autistic children displayed in leaving your loved ones at home, for the work required to pull off these trips, for your plans B, C, D, and beyond.
For the faith required for those of you who brought your loved ones to DC, the bravery required by both you, and your children.
We are a community.
We are family.
I will always be honored to lend my voice to yours, to speak for so many of our children who cannot.
Honored to continue to speak, so that maybe one less mom in this world will receive the phone call that destroys her world too.
Thank you.
When tragedy strikes someone we care about, we want to DO something. It can be hard to know what the right thing is. One thing you can do to help us continue our crucial mission to develop safe, loving places for our loved ones with Profound Autism is to support NCSA and amplify the messages of their policy planks.
Specifically, they are:
Congress should direct and fund a comprehensive, multi-year federal study on the state of family caregiving for individuals with severe autism in the United States.
Center for Medicaid Services (CMS)
1) direct funds toward meaningful services
2) reform the Settings Rule and enforce safety oversight, and
3) collect data on unmet need.
You can read more about these policy planks here:
Finally, if these positions move you, if Kim’s story moves you, and you want to lend your voice to help, click here to find your Member of Congress to send them a message.
Feel free to copy and paste the message below or write your own.
Dear (your MOC here),
I support the policy planks of the National Council on Severe Autism and urge you to support their call for two specific requests:
A Comprehensive Caregiver Study that would require no additional funding (it’s already in the Autism Cares Act)
Urge CMS to
adopt meaningful reforms (by sending the letter linked here) that would direct funds toward appropriate services for individuals with Profound Autism
to reform the Settings Rule so it better reflects the needs of those with Profound Autism
to collect data on the current unmet need for services (Empty Waivers).
Thank you.
Sincerely,
Thank you for standing with us.
Thank you for taking the time to use your voice to help.
With gratitude,
HomeLife 21
