Interest List

Sometime in 2009, I received some of the best advice I have ever been given.  The advice was this:  Get on the lists.

When you have a child with special needs, you quickly discover that you will be endlessly deluged by paperwork and that getting anything accomplished will often mean working through complicated constantly shifting rules that only a very few truly understand.  It's like trying to navigate an elephant through a quicksand field by walking on a tightrope with your eyes blindfolded. I don't remember where I was or even who gave me this valuable information about the lists, but I'm sure my reaction was something like that of a deer in headlights.  List?  What list? The medicaid waiver program interest lists for programs that will help you get services for your child, I was told.  So I got on the lists.  They're complicated. People (including the Mom of No) pay money to go to workshops that attempt to clarify the information. I'm not even sure that I understand all the intricacies myself.  Fortunately, I have a long time to figure it out.

The term "interest list" is actually a euphemism for "the longest waiting list you will ever be on". "Interest list" sounds better.  No one wants to be on a waiting list for eleven years, but calling it an interest list mitigates the pain.   I placed my son's name on two interest lists in 2009 and we are still waiting.  Every year I call the agencies who manage the lists to let them know that we are still interested.  This year, for a list known as CLASS (Community Living Assistance and Support Services), out of about 55,000 people in the state, we are somewhere around 17,500.  When do you think we might get to the top? I asked the person who took my call.  I'm not sure, she said.  Probably around 2020. 

Last year I even wrote my state representative, who, like most politicians in this state, portrays himself as an advocate for family values, because these are state-managed programs. I received, in reply, a letter that indicated in its substance and tone that this particular issue wasn't a priority.  A blow-off letter. Reading it, I wasn't even sure that the staffer who wrote the letter knew what a waiver program was . An 11 year waiting list (excuse me, interest list)  for families who need help isn't the kind of family values politicians are interested in.  Honestly, unless it affects you, it isn't the kind of issue voters get excited about. 

The particular services I am interested in are ones my son will need to support him as he moves into adulthood and his working life- help with finding a place to live, or job coaching.  Therefore, I can probably patiently wait until 2020.  Unfortunately, I am sure that there are plenty of families out there who can't wait eleven years.   I'm not just sitting idly by, however. I continue to work with my son on independence and self-advocacy because even when we get to the top of the waiting (interest) list, there's no guarantee he will actually receive any services.  Meanwhile, I have some perspective- when I'm placed on hold for what seems like forever, I can think to myself that I know it could be worse.  They could be placing me on an interest list.