MD Autism Project

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

Advocacy Begins With Being Heard.

In we were not heard.

Dear Chair, Vice-Chair and Delegates,

I’m reaching out again because my family — and thousands across Maryland — urgently need your leadership.

My sons are now 21 and 19, and I remain both a full-time caregiver and a longtime advocate. The governor and DDA's proposal to drastically cut services will cause real harm to people like my son Colin who depend on these supports for their health, safety, and daily survival.

These are not optional services. They are lifelines.

Please oppose these cuts and require DDA to work directly with families and self-advocates to create a plan that protects, not weakens, essential supports. Those most affected deserve a real seat at the table — not decisions made without us.

You can see in this photo my son is a nonspeaker. He uses this letterboard to communicate. His self-directed program is literally a lifeline.

I urge you to stand with Maryland’s disability community.

Sincerely,

DWG