Welcome back to Reading the Research, where I trawl the Internet to find noteworthy research on autism and related subjects, then discuss it in brief with bits from my own life, research, and observations.
Today's article is a report issued from Drexel University on the financial status of autistic people. Or, I should say, the lack of financial stability of most autistic people.
The poverty rate for autistic people is much, much higher than average. So is the under-employment rate, and the unemployment rate. There's reasons for this.
First, retaining the services of a therapist or team of care professionals (especially good ones) is incredibly expensive. There can be a lot of complicated medical issues that come with autism, including epilepsy, sleep issues, a barrage of allergies, and special dietary needs. Then there's services for behavioral and developmental support: Speech-Language Pathologist, school support services, therapist, and home support staff.
And naturally, sometimes the school refuses to provide what you need, and you also need to retain the services of a lawyer.
All of this adds up, and atop that mountain of expenses is the typical living expenses: a home, utilities, and food. How is someone supposed to afford all that?
Mostly, they can't. Unless your paycheck is in excess of $100k (so, almost no one), that mountain of expenses is impossible to handle on your own. But the services are still needed.
So the vast majority of families turn to social security programs. Medicaid, in particular. If the need can be demonstrated, the state will arrange (or let you arrange, depending on the specifics of the program) for support services, free of charge. Sounds great, right?
There's a catch. Not only is it incredibly hard to get the state to recognize you have legitimate needs, but also Medicaid programs tend to have a limit to household income. Above that limit, and you do not qualify for services.
That would seem fine, if the limit was $100k. But it's not. Instead, it's typically around the poverty line or below. Working class and middle class families are out of luck.
Say you're a family with a middle class income, maybe $60k. The support services you need will run you tens of thousands of dollars into debt every year, so you can't afford to pay. So then what? You still need the services.
The answer that many families have opted for is, "You quit your middle class job and get something that barely pays your bills, but puts you under the Medicaid limit."
The adult autistic version of this is, "Well, I might be able to climb the ladder in this company I'm working at or get training to get a better paying job, but if I do that I'll lose my SSI and support services, so I can't." That's of course assuming they managed to acquire a job with advancement prospects in the first place, which is statistically unlikely.
Usually autistic people (myself included) simply aren't able to get or keep a job of that level. We might be qualified, even exceptional, for the position, but when office politics comes calling we sink rather than swim, and are quickly let go for not fitting in or understanding. Here's a poem about this.
It's a bad situation, and it only gets worse as costs continue to rise, while Medicaid income limits remain the same.
(Pst! If you like seeing the latest autism-relevant research, visit my Twitter, which has links and brief comments on studies that were interesting, but didn't get a whole Reading the Research article about them.)
Today's article is a report issued from Drexel University on the financial status of autistic people. Or, I should say, the lack of financial stability of most autistic people.
The poverty rate for autistic people is much, much higher than average. So is the under-employment rate, and the unemployment rate. There's reasons for this.
First, retaining the services of a therapist or team of care professionals (especially good ones) is incredibly expensive. There can be a lot of complicated medical issues that come with autism, including epilepsy, sleep issues, a barrage of allergies, and special dietary needs. Then there's services for behavioral and developmental support: Speech-Language Pathologist, school support services, therapist, and home support staff.
And naturally, sometimes the school refuses to provide what you need, and you also need to retain the services of a lawyer.
All of this adds up, and atop that mountain of expenses is the typical living expenses: a home, utilities, and food. How is someone supposed to afford all that?
Mostly, they can't. Unless your paycheck is in excess of $100k (so, almost no one), that mountain of expenses is impossible to handle on your own. But the services are still needed.
So the vast majority of families turn to social security programs. Medicaid, in particular. If the need can be demonstrated, the state will arrange (or let you arrange, depending on the specifics of the program) for support services, free of charge. Sounds great, right?
There's a catch. Not only is it incredibly hard to get the state to recognize you have legitimate needs, but also Medicaid programs tend to have a limit to household income. Above that limit, and you do not qualify for services.
That would seem fine, if the limit was $100k. But it's not. Instead, it's typically around the poverty line or below. Working class and middle class families are out of luck.
Say you're a family with a middle class income, maybe $60k. The support services you need will run you tens of thousands of dollars into debt every year, so you can't afford to pay. So then what? You still need the services.
The answer that many families have opted for is, "You quit your middle class job and get something that barely pays your bills, but puts you under the Medicaid limit."
The adult autistic version of this is, "Well, I might be able to climb the ladder in this company I'm working at or get training to get a better paying job, but if I do that I'll lose my SSI and support services, so I can't." That's of course assuming they managed to acquire a job with advancement prospects in the first place, which is statistically unlikely.
Usually autistic people (myself included) simply aren't able to get or keep a job of that level. We might be qualified, even exceptional, for the position, but when office politics comes calling we sink rather than swim, and are quickly let go for not fitting in or understanding. Here's a poem about this.
It's a bad situation, and it only gets worse as costs continue to rise, while Medicaid income limits remain the same.
(Pst! If you like seeing the latest autism-relevant research, visit my Twitter, which has links and brief comments on studies that were interesting, but didn't get a whole Reading the Research article about them.)
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