MD Autism Project

The sweetness of spending time with friends in a loving, supportive and completely non-judgmental space.

Only love and light.

Experimenting..

Learning…

Growing…

Laughter..

All of your senses have been fulfilled but not overwhelmed

And then leaving with your heart fuller than when you arrived

Only nature, safety and beautiful souls can have this profound effect on you.

Why are we failing kids with regressive autism?

It's been 10 years since our community town.The room was filled with families, caregivers, and stakeholders. Every legislature from our district attended. The Maryland Department of Disabilities, attended. Discussions were intense & emotional. How could they not be? We were talking about our children, who suddenly regressed & lost skills. If a toddler regresses the physician advises us to "wait & see". If a young adult regresses that would be considered a stroke. We were ahead of our time yet again. Although everyone listened & seemingly cared. There was no action taken to help our community. Local nor federal legislatures would consider & treat this as a crisis. It would take another 10 years & a shakeup on the federal autism committee (IACC) before some assemblance of a foundation has been presented to HHS Secretary Kennedy for review & approval of next steps. After months of work and a 30 day public comment period they recently submitted over 300 pages of categorized strategies. We anxiously await. Every child in this presentation is now an adult. So much is at stake.

This is what self-directed programming looks like. Parents strategizing, creating opportunity all day, having fun, determined, laser focused on skill building, helping & supporting sometimes uncooperative bodies & individualized communication methods. All through very little sleep, aging, menopause, other health conditions whilst getting more & more pressure from the state on ridiculous regulatory requirements. We won't stop fighting.

Good Evening Speaker, Chair, and Delegates,

Currently, 1 in 28 boys in Maryland have an autism diagnosis. Now the Governor's administration and DDA want to cut the disability budget by $155 million. Even with the ever-so- slightest improvement of $125 million it's unacceptable and the most vulnerable citizens in our state will take a direct hit to their daily program. This is unsafe & irresponsible. It'll crush individuals & families that were forced to leave work force.

Make no mistake families are not getting rich by being a caregiver. I gave up a lucrative job at a prestigious university making almost three figures (including benefits) ten years ago. I have never been so resource poor in my life.

Eleven years ago we created this project and sent to MDH & Insurance Commission. We sat at the table with them. The children in this video are now adults. It’s beyond critical that we take action and refrain from any budget or hour cuts to self-directed.

I cannot emphasize enough how dangerous this is. Further, families are angry not having a seat in that room with DDA. A three minute testimony, emails, calls and videos are snippets of our daily reality. Our community is very well educated, articulate and innovative parents who want in on this discussion and rightfully so. If you were losing a life-line wouldn't you want to be in that room?

Respectfully,

DWG

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Repost of video and open letter sent to MDH and Maryland Insurance Commission 11 years ago. ⬇️

https://bit.ly/MDAutismProject

Dear Chair, Vice-Chair and Committee Members,

We choose self-directed for a myriad of reasons. Autonomy & agency is first & foremost. Medical & safety is next. Then the very specifics of an individualized program comes in.

Individuals with apraxia often have full-body apraxia; it's not limited to speech. Zero intellectual disability;
The brain knows what it wants to do
and body wont cooperate.
Thats where body-coaching comes in. It's repetitive, it's lifelong & must be consistent. I'm so proud of how hard my son works to accomplish his life-skills & daily goals.

Support staff making $20 an hour do not have this level of training. Nor do they have the training as a communication partner for my non-speaking son. Medical training is another whole situation with epilepsy. There is nothing black and white about any of this. We live in the gray.

Cutting disability benefits for self-directed services is reckless and dangerous. We will hold the state to this.

Respectfully,

DWG
Mother & Advocate

Advocacy Begins With Being Heard-

In we were not heard.

Dear Legislators,

This is what Self-Directed Services looks like.

It is meaningful. It is individualized. It is built around my son’s unique needs.

My son is nonspeaking and has significant motor planning challenges. He also lives with complex medical conditions, including epilepsy. Education and context matter. His needs are not generic — and neither is the support required to help him live, learn, and participate in his community.

When appropriate services don’t exist, parents create them.

What you are seeing represents years of relentless work — showing up every single day, building supports from the ground up, coordinating care, training staff, and refusing to let gaps in the system define my son’s future.

Self-Directed Services is not a luxury. It is not excess. It is what makes progress possible.

Please protect and strengthen this model for families like mine.

Sincerely,

DWG
Constituent/Advocate