Unbeknownst to us, the following things were happening in December. It looks like Scrooge was working in shadows this year.
On December 1, a rule passed by our county that no one seemed to actually know about went into effect dictating that any family who made over 300% of some income limit (which we think is the poverty line, but no one actually seems to know this even now) would no longer be provided disability-related services for their children. Apparently this included us, though we still have no idea 300% of what.
Under these services, J has received 7 hours of developmental therapy per week. He has made enormous progress with his developmental therapist, who we think should be fast-tracked to sainthood. Originally he got 10 hours, and we found out later he should have gotten 12, but in September this was reduced to 7. We also have gotten case management services, which among a few other things essentially processes the paperwork and monitors the availability of CAP/Medicaid Waiver slots. Admittedly the latter is a tragic joke right now because the wait list is measured in several years at this point. There’s a growing dread among many of us that these slots may NEVER become available.
On December 21 – yes, three weeks after the rules went into effect – our case manager got a list of kids eligible for services, and J was no longer on it. No explanation, no warning, no nothing. This went into effect December 30. To make it worse, no one at our case management agency told us until December 28. So, the first time we knew of any of the above was 48 hours before we would lose all services. Oh, and pretty much everyone was on vacation for the holidays.
Ponder all that for a moment.
We were then told our only recourse was to file a financial hardship appeal. So here we are during the holidays, my best friend who I basically see twice a year is in town visiting, and there we are scrambling trying to fill out these forms and gather a pile of supporting documentation for our appeal. These included last year’s tax forms, proof of all our 2011 medical expenses, our health insurance info, copies of proof of residency documentation, and for good measure J’s 27-page IEP. I thought about pricking my finger and running it across one of the pages in case they needed some DNA.
We had no real optimism that this would work, but you have to do it. Obviously nothing was going to happen until January 3 when everyone went back to work. So we waited and started desperately trying to figure out what any plausible options might be. I looked at stuff around the house we could sell.
We were shocked to find out on the 3rd that we were granted a six-month reprieve. Our appeal was accepted at least until June 30th. After that, who knows. I guess our $12,000+ of medical expenses in 2011 were in some way persuasive. I suppose I should be thankful, but after all that groveling I’m feeling a bit short on dignity.
In the warped reality we live in, probably the only way we’ll get to keep services beyond that is either for the rule to be rescinded or temporarily lifted by legal order, or for one or more of us to get really sick and pile up a bunch more medical bills.
Yes we won what amounts to a proverbial stay of execution. Our future odds are pretty long, however. There are some questions as to whether our county is acting legally here, but that’s something we haven’t had a chance to explore much with anyone yet.
But there’s a much greater problem that frames the enormity and horror of this war over services and supports that affects every last one of us. Many states – ours included – are pillaging disability services budgets and cutting them into oblivion. There may be no more wait lists for things like CAP/Medicaid Waiver slots because there may no longer be anything to wait on.
These are bleak times, but we only have one choice – accept the challenge and fight. If we roll over, our children’s futures are in danger. Services lost may never be restored. I know we’re all tired, and it’s just one more damn battle to fight. We can take a little while, bemoan it, get depressed over it, stare at the wall, eat a dozen boxes of donuts, yell and be angry about it, and curse everyone we can think of.
Get it out of your system as best you can. Then get up off the floor, grit your teeth, set your jaw, and say two important words.
Game. On.
Posts that hopefully are similar:
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- A Journey of a Thousand Miles
- Holiday School Party – Things Worth a Thousand Words Edition
- Lessons from the Road – One Year Later
- Trying to Avoid Burnout as Autism Parents – Reflections on Doing Better
- What Does ‘Strong’ Mean to You?
{ 2 comments… read them below or add one }
It’s a full time job in itself keeping up with the paperwork, let alone anything else. I completely understand the wretchedness of it and it’s a never-ending deluge. We have drawfuls of paperwork. It’s just one of many fights. Take a deep breath and hang on tight – as if we can do anything else.
I hear you pain and frustration. I am an occupational therapist and we provide services under Medicaid. Each year for the past three years they have reduced our reimbursement rate, which was low to begin with. Periodically they review records and always find a problem – maybe it is information that is in the wrong place or they don’t understand what the note means – it is too simple, anyone can do it, or too complex, not reader friendly. At that point they will recoup all the money they have paid for that child’s therapy during a 6 month period – all of it! This is how the state is saving money.