Goliath: 1; David: 0

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I get it.  Nobody has any money.  What money there is needs to be spent wisely.  I get it; I do.

It just sucks to be on the small end of this balance.  Whenever cuts need to be made, its the elderly, the school children, special ed, retired and/or disabled veterans who take the brunt.  Pisses me off.

The part that irks me the most is when I have such little control over it.  Case in point: Maine wants to allow Jacob fewer services under Section 28.  This is his in-home supports.

Here’s how it works:  You get a letter in the mail saying we’ve reviewed your case, and guess what?  We’re shaving a few hours off the top.  You’ll be fine.  If you want to appeal, you have 10 days to do so.  We did.  You then get a date and a time to attend a conference call (appeal stage #2).  Every half hour, this harried MD who has only surface information about your case, listens to the arguments from you, the parent, your case manager and the Sect. 28 provider supervisor.

Here’s the rub.  He’s brand new; and didn’t write the plan he’s defending.  He’s probably got 50 (or more) other families he’s supervising the care of.  He can’t possibly be expected to bring the expertise needed to the table.  Even Jake’s Sect. 28 in-home worker had to recently resign her position for family reasons.  There’s just no experience on the call.

Every time the case manager, who’s awesome, btw, tried to speak up, the Doctor would politely set her statements aside and turn back to the New Guy.  My impassioned pleas that Jake’s worker, with whom he was very familiar and comfortable had recently left abruptly, he was beginning 6th grade, the gap between his social skills and those of his peers is ever-widening, and puberty is on our doorstop – didn’t count.

He could only state that the last guy who reviewed the case cited a rule under Section 28.07, stating that some of the services provided appeared to be custodial.  When asked to explain which services, or which goals; he could not.  He didn’t have any more information than we did.

So, in summary, a guy who is unfamiliar with Jake or Jake’s case is arguing for a reduction in services against a guy who barely knows Jake and Jake’s case.  I got to sit idly by, knowing we were losing our case.

Best part: “just document his worsening behavior or the widening gap caused by these reductions, and we’ll consider giving you back some more hours.”  Hahahaha!  My response?  “You expect me to believe that in this political and economic client, there’s going to come a day when you’ll give me back even a portion of what you’ve taken?”  Him: “Uh, it’s happened.”

I’ll just be sitting over here holding my breath.

Avoiding “custodial” or “maintenance” treatment for autism is the challenge.  Doctor went on to explain that service would obviously fade away because 1. he’d get better and no longer need therapy OR 2. he won’t get better, so he won’t need therapy anymore.  I understand and am simultaneously furious at that last part.  Endlessly repeating methods that don’t work is the definition of insanity.  But treatments and techniques are ever-expanding, and so is Jake’s autism.  He’s not 8 year old, third grade Jake anymore.  He’s a middle-schooler.  Soon, he’ll be in high school, 5’10”, and have hairy armpits.  His challenges and strengths will be very different then.  So will his goals. .

I guess for now we begin the process of documenting every hiccup and setback, slowly building our case for our next rebuttal.  Going up against “the man” for your kids over and over and over again may also be the definition of insanity, but what choice do we have?

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4 comments

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    • Wanda Bourgeois on October 4, 2013 at 5:28 pm
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    tho my daughter was not Autistic I hear from my heart and experience your frustration. We lost services because she functioned within grade level for academics. There is no grade level for social to be qualified. One of her nicer teachers that worked well with her called her eccentric in grade 9. Do keep a dated journal it will carry more to your hearing than the school reports. Good Luck

    • Autumn on October 4, 2013 at 1:37 pm
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    So sorry to hear this 🙁 We have been so blessed to have been offered more services than we are entitled to without a proper diagnosis. However, I have an acquaintance who recently gave up in-home for her severely autistic son because it’s was ” a drag” to be committed to specific times every week. Seriously ?? When families who want and need the care are losing or being denied services?? Hope your next battle is a victory !

    1. Thanks for the encouragement! We shall soldier on, as we always do.

    2. Thanks, Autumn. We understand that we can’t win every fight, but sometimes we get so overwhelmed by failure. It’s usually an afternoon-long pity party, then back in the saddle the next day!

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