Even if your voice shakes…

On January 5, 2023, I testified before Members of the Virginia General Assembly who serve on the House and Senate Finance and Appropriations Committees as part of their Virtual Public Hearings on the 2022-2024 Biennium Budget. 

I testified in support of The Arc of Virginia’s Developmental Disability Coalition’s Legislative Agenda. 

Here is the bulk of my testimony:

Good Morning Members of the General Assembly, 

My name is Susannah Clarke Taylor… 

My daughter… is 11 years old and she has Charge Syndrome, which includes multi-sensory impairment, such as blindness and deafness, as well as overall cognitive developmental delay. She also has Lennox-Gastaut Syndrome which is a very rare and very severe form of childhood epilepsy involving multiple types of seizures that are extremely difficult to treat. 

The severity of my daughter’s needs makes it nearly impossible for me to be gainfully employed outside of my home and to still be “on-call” for my daughter 24 hours a day.

At last year’s budget hearings, I had the privilege of advocating that a budget amendment be passed allowing parents of minors with disabilities to be their own child’s paid personal care attendant. That budget amendment was passed, and I cannot thank you enough for listening to the concerns of so many Virginia parents who were in dire need of this important support. It has made an enormous difference to all of us.

I am so grateful that [my daughter] qualifies for the CCC+ Waiver. I don’t know what our family would do without it. But she won’t always be a child and I must plan for her future. In less than a decade, she will need DD Waiver services so that she can continue to learn new skills, gain access to her community, and receive residential support. 

But currently… there are over 14,000 people waiting for a DD Waiver in the Commonwealth of Virginia. [My daughter] is just one of them. Yes, at 11 years old, it is already necessary for her to be on the waiting list. Please support funding the additional 500 waivers recommended by Governor Youngkin that will bring a total of 1100 new waivers effective July 1, 2023.  It is not nearly enough to serve everyone in need, but to those 1100 people— people who were once children with disabilities like my daughter…—  but who are now adults with disabilities— those waivers will make all the difference in the world. 

Additionally, it is extremely important that Virginia have a skilled workforce to serve children and adults with developmental disabilities.  With the severe workforce shortage, Virginia needs to develop creative approaches so that the general public is aware of the job opportunities, and that those jobs pay a livable wage, so that we are not losing interested and qualified personnel to other industries.

In short, please support The Arc of Virginia’s Legislative Agenda so that Virginia’s most vulnerable citizens… are not left neglected, and have the supports they need to live meaningful lives, both now, and far into the future.

Thank you.

My new favorite quote is by Maggie Kuhn, founder of the Gray Panthers (often erroneously attributed to Ruth Bader Ginsburg because she herself often quoted it):

“Leave safety behind. Put your body on the line. Stand before the people you fear and speak your mind- even if your voice shakes.”

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