Dear Human of Virginia,

First of all, I wholeheartedly agree with all of the comments made by the Virginia Ability Alliance 

Secondly, I write to you as a desperate parent of a severely autistic non-verbal child, who is looking at decades of exhaustive living conditions ahead of me, living with and protecting my autistic son. I have learne recently that the state is now handing out fewer and fewer Community Living (CL) waivers, and is instead assigning increasing numbers of Family and Individual Service (FIS) waivers. However, FAMILIES LIKE MINE NEED MORE OF THE FORMER, AND LESS OF THE LATTER. 

To get a better sense of the level of disability we are dealing with, I ask you to please take a moment and read this piece I wrote that was recently published in the Washington Post. We are activist parents. We have fought for better school placements for our son and we have created a non-profit to address that employs people with intellectual and developmental disabilities. We fully embrace the idea that families in our position must do everything possible to help themselves and create our own opportunities for the children that we brought into this world. 

However, we cannot keep up this battle indefinitely. At some point, no matter how hard we work to keep our son safe, fed, and educated, we need help. We cannot maintain the energy needed to support our son until the very day that we die. We need help long before we ourselves are gone. Clearly, we will fight til we can't fight anymore. But the Commonwealth absolutely must step in sooner and with more Community Living waivers than it is currently offering to desperate families like ours.

While we are willing to develop our own group home living situations for severely disabled people like our son, we simply cannot afford to pay for him to live in such a place by paying out of our own pocket. And by the time he hopefully receives his CL waiver, he may be in his 50s, and I will be in my 80s. It is unimaginable to think of how "the system" will struggle to transition a severely autistic ~55 year old man into a group home situation, after living his whole life in one home. These transitions absolutely need to happen earlier in his life and in ours. Families like ours should not be left on our own for so many decades. It's simply untenable for countless reasons.

We have made all necessary arrangements to plan ahead for the care of our son, but we are only two people with the same clocks ticking on our lives as everyone else is offered on this Earth. We need help from the Commonwealth to ensure that our son has a stable living situation (via the Community Living waiver) LONG before we are too old to care for him. And we implore you to increase the number of CL waivers. The FIS waivers are simply not enough for citizens whose disabilities are profound. 

Thank-you so much for considering this request.

Sincerely,

Maya Wechsler, Mom, Advocate, Citizen of the Commonwealth