Tuesday, December 1, 2015

LENS and Life, week of 11/24

Zero sites today, because it's Thanksgiving week and doctors deserve days off too.  I don't feel any more irritable than usual, so perhaps the week on, week off thing will be a regular occurrence?  No idea. 

We're about 4 days into the sleep multivitamin thing.  I wake up repeatedly at night, which I did before starting all this stuff with melatonin.  However, I am at least not having grainy sleepy-sand around my eyes in the morning, so I presume it's doing something.  No idea what, but something.  I still don't wake up feeling rested and refreshed.  My doctor mentioned that I should probably pester my primary care person if I want to do a sleep study, because otherwise it costs upwards of $1000.  And it's likely to take months of visits, and possibly not even happen depending on what the doctors think. 

In any case, we're already pretty sure I don't have sleep apnea.  This is excellent, because sleep apnea can absolutely kill you.  Also you have to wear uncomfortable stuff to adjust for the fact that your breathing doesn't work right while sleeping.  I'd kind of like to pass on that. 

In less cheery news, I reapplied for Medicaid about a month ago and received a denial letter today.  It doesn't state specifically why, but since my (lack of) income isn't a problem, I'm calling them.  They can tell me why, and reinstate it immediately thanks very much. 

In career-related news, I'm keeping busy attending various autism and special-ed related events.  I certainly missed out on approximately a gadzillion headaches, growing up without knowing I was autistic.  My parents, too.  Yeeg. 

While I found much of the events depressing (they're geared towards younger people less able to blend in with neurotypical folks), there was a nice bright point that I'd like to highlight.  Last year, a law went into effect called the ABLE Act.  This is excellent news for pretty much any family with a special-needs or "different" member. 

The ABLE Act establishes what's basically a special kind of bank savings account.  The money in this account is exempt from Social Security resource checks that determine your eligibility for SSI, and can be saved or used pay medical expenses or other expenses. 

In short, the ABLE Act allows a person considered "disabled" to actually save money for their future.  One of the most valid complaints about Social Security is that it cripples people who actually want to get out of poverty.  If they have over $2000 ($3000 for families) in the bank account, they no longer qualify for assistance and are on their own.  Boy howdy, a whole $3000 dollars.  That's definitely enough padding for an entire family.  (/sarcasm)  Especially when they only have one half-broken car, and it breaks, and both parents are working and need transport... that's about the cost of one crummy used car.  Or, maybe enough to last a few months without support if they're lucky.  Or enough to make a down payment on some nasty high medical bills if someone gets into an accident.  Then they're all out of money and probably in debt to boot. 

As I understand it, most families and individuals on SSI have to stress about not making too much money, lest they lose their benefits.  And entirely unable to save up enough to safely get themselves out of it, thanks to how the law is written. 

So you see the problem here, and ABLE Act's solution.  At least for qualified disabled people.  There's a very wordy summary and Q&A here.

Beyond that, I've found out that while there are a few entry level position type job programs for autistic people and other folks, there aren't really things that appeal to me, or my web designer friend, or my friend who presently works at a phone survey place.  So we're all kind of in this uncomfortable place between the neurotypical people of our generation (can't find a job, where's a job I actually like?) and the folks less able to blend than we are (can't get anyone to hire us at all, because we don't do the song and dance very well). 

This makes me uneasy.  I'm trying to circumvent the song and dance of formal job applications by making my own career, but it's... concerning... to see how hard it is for autistic people that blend a little better to find something fulfilling.  Oh, there's lots of talk in the Special Education world about linking people with stuff they love, but very little actually doing that. 

I probably shouldn't be so hard on them.  It's not like neurotypical people find it easy to find a job doing what they love.  Or even knowing what they love.  It's just, it's so easy for us to slip through the cracks.  Because it's harder for us to be heard, and "out of sight, out of mind" is absolutely a truth you can rely on. 

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