Today we had our third application/interview to get G approved for ALTCS – Arizona’s Long Term Care System. When G turns three, she will age out of early intervention and no longer qualify for services through them. She will continue to get services through our school district, but therapies are limited and done in group settings. While those are great, a child with severe apraxia needs more.
If G is approved for ALTCS, they will provide therapy services when she turns three and will also provide additional therapeutic opportunities and things like augmentative communication devices (iPads), behavioral supports and possibly even a few hours of respite care. ALTCS provides full coverage for those services, compared to early intervention covering 50% of the cost (which with five days of therapy a week, adds up painfully fast). Basically ALTCS is huge in both the services it provides and the fact that it could at least help with the financial strain of raising a child with special needs. This whole special needs thing is a double whammy financially. First, it costs a lot to get the therapy kids need and I do not know of many special needs parents who haven’t taken a hit to their income – it takes a lot of time to provide those therapies, and that time for many, including myself, results in lost wages. You do the best you can, but it is a huge stress in addition to everything else that comes with this special needs thing.
She has been turned down twice. The first application was at about 18 months. She truly did not qualify at that time. We applied again at 24 months (the criteria changes every few months to reflect developmental milestones) and she should have been approved. I say should, because it turns out the state goes through your answers and uses anything they can to disprove them and thus disqualify them. Many of my answers were changed. For example, “can she jump using both feet at once”. No, absolutely not at that time. However they dug through records and found where an evaluator who met G once, for maybe 20 minutes, wrote she could jump. I don’t recall being asked if she could by that individual, and it didn’t state she could jump on two feet as the question stated, just “jump”. Never mind that I and her OT who she sees twice a week stated that she could not, it was written one time, incorrectly, but that was all it took. Never mind that the paperwork also stated that G was Caucasian (she’s Hispanic). If it’s written, it must be true (insert eye roll).
By requesting the records on which they based her denial, I discovered that many of my answers had been changed. Enough to take her from eligible to not eligible. I was not amused. If my child qualifies for services, services that can help her become a self sufficient adult whom the government hopefully won’t have to support one day, then she should receive those services. Combined my husband and I have worked, and paid taxes, for more than 50 years in the state of Arizona. This is the first time we have been in a situation where we could use assistance in return, and rightly qualified for it, and were denied it based on “adjustments” they made to our reality.
So we will see this time. As G gets older, she falls further behind, and should more than qualify. We now hurry up and wait. Our therapists and developmental pediatrician have all turned in documents stating where she is at (and that it is the same as what we’ve told them, that we aren’t lying or trying to pull a fast one) and that she should be approved for ALTCS and receive additional services. I’m praying this will come through, and will be one weight lifted, one less thing we have to worry about. Dealing with delays and problems is hard enough, going to therapy day after day is hard enough, supplementing those therapies at home is hard enough, the emotional toll is hard enough, it would be wonderful to have this one stressor taken off our list.