A lot of our friends are scientists without (apparent) disabilities, and for some of them, their only assistance-dependent disabled friend is David. So they understandably wonder why David, with a Ph.D. in physics, needs SSI.
On the other hand, some of David's social workers also ask:
"Why does David need low-income housing, SSI, IHSS, and other government aid? Online trend websites claim he could make about $80,000 as a postdoc researcher."
The answer involves not the money from SSI itself, as much as the other resources which are only available to those who qualify for SSI. It also involves some Orwellian style mathematics, so get those thinkin' caps on, folks!
Before I go further, I want to be clear that I'm very grateful to live in the nation that cared enough for its poor disabled citizens to have created the SSI system. I'm not angry at the system, and am certainly happy that thousands of SSI social workers, who could have earned higher incomes elsewhere, have dedicated their careers to this program.
However, the current SSI program needs drastic updates, because it was created at a time when Savant Autistic people were warehoused in large institutions, and as in the film Rain Man, their academic and career potential was entirely ignored.
Today, autistic adults desire and legally have the right to attend college, pursue career dreams, and live in their own homes. SSI wasn't built for this, so we need to rebuild it.
So, here's the math:
David needs 24/7 protective supervision to stay safe at home and in his community. The employees providing this protection earn minimum wage- $10 per hour. In a 30 day month, that's 720 hours times $10, totaling to $7200.
$7200 per month, before food, rent, and other basics.
The annual wage of 24/7 personal attendant staffing is $7200 times 12 months, totaling to $86,400.
So, imagine David accepting a fellowship for $80,000. After paying his staff, he'll be in debt $6,400 before he pays food, rent, basics.
You see, a disabled person must qualify for SSI in order to have access to the tax-funded agencies that pay the paycheck to the staff that he or she needs to function at work and in the community. And in order to qualify for SSI, the disabled person must maintain a low income.
Just how low of an income is that? Well, according to the calculator at "CareerSource Brevard", David can earn about $1500 per month and still maintain SSI eligibility so as to receive the support services that he needs to survive.
Yes, you read that right, people--David Nisson, one of the biggest computational physics brainiacs around, must keep his monthly income below $1500 in order to pay for the staff he needs. To use a phrase common among my physics friends, "That feels counter-intuitive".
So, speaking of physics, one must wonder how many potential physicists out there dependent on SSI to fund their staff and other medical needs have no choice but to abandon their science careers?
Fortunately for David, things look hopeful. Right now, David is focused on learning basic life skills, in hopes that he will someday function well enough on a daily basis to live and work independently. If things work out the way they have for some others, David will be able to work without the need for so many hours of help. So far, his progress is showing promise of this.
However, many more mathematically savant autistic people who need full-time assistance for the rest of their lives are poor than are rich. Therefore, their staff and family members whose job it is to manage their funding need to stay constantly aware of keeping their income below the threshold for losing SSI.
What other option is there?
Reform efforts are underway, but the wheels of change move slowly. One step taken relatively recently is the new ABLE act. This program won't help David's monthly income situation, but it will be a big help for the many college students with autism and other developmental disabilities who have families who can afford to contribute to the ABLE accounts. California will have ABLE accounts available this coming summer, 2017. Please learn about CalABLE here:
http://treasurer.ca.gov/able/
Good news! David's Regional Center coordinator has assured us that this is only a temporary situation, and that once his Supported Living Services (SLS) are underway, Alta California will cover the SLS even if he earns $80,000 per year. So, once this goes through he will be able to earn a decent income and not have to worry about being in debt to pay for care.
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