Stealth Services

“Wow that’s awesome!.. What is it?” Some variation of that refrain was what I heard most often when I told them about the call.

It’s the call that many special education families desperately need. It’s a call that many of those special education families never get. We have waited 8 long years for it. It was the call that informed us that Noah had finally been chosen to receive the ID (Intellectually Disabled) waiver from the state of Virginia.

We applied for it when Noah was 3 years old. At that time, we were told he was near the top of the list. Information is sparse, but some estimates that I have seen place nearly 8,000 Virginians on special education waiver waiting lists in Virginia. Last year they opened up 825 additional wavier slots in the budget for the state of Virginia. Surely he would make the cut this time. He is now 11 years old and still testing developmentally as a 12 to 18 month old. Nope. We were told that unfortunately he still didn’t make the cut. How could our extremely severe child not make that cut either?

At some point along the way I mostly lost hope. Since it was guarded so secretly, I began to doubt that there was even a list at all. I began to hear rumors that if my wife was a single mother he would have received a slot. I also heard that we make too much money for my son to qualify for the top tier. In essence Noah was likely passed over because his mom was married and his parents both had jobs (a teacher & a nurse?) – two things he had zero control over & that didn’t materially affect the severity of his disability.

If those things aren’t nebulous enough there is precious little information on what specifically the waiver covers. We had heard bits and pieces of information that told us that it would provide much needed, additional respite and attendant care hours as well as updated technology (ie: iPads, other communication devices). Special Education families should not have to spend inordinate amounts of time researching what services are available to their disabled child and what those services entail. The cynic in me believes that these are made purposely amorphous to reduce the accountability and potentially increase corruption. I’m working on my master’s degree in special education. If it is difficult for me to navigate and understand the available resources for special needs families, imagine families less fortunate than us. Families where grandparents are the caregivers, single parent families and poor families make up a large percentage of special needs families. How could their kids be getting access to all that their child deserves in shadowy programs such as this?

It is awesome for Noah. I’m thrilled that he has the potential for so much more help - even if some of the specificity of the help is a bit obscure. I just can’t help but think about the other 7,000+ kids still waiting for help..