Alphabet Soup
Making Sense of The Disability Support System for Adults in America
If your young person has a disability, even high functioning autism, they may qualify for support from the government, provided they meet certain criteria. Our disability support is an essential safety net for people who are unable to work. Unfortunately, the system is complicated, fractured, and has multiple ways of derailing even the most educated, determined parent.
While it’s complicated, the benefits are great. It’s worth plowing through the system and sorting out the alphabet soup — SSI, DDD, DVRS, PPP, and all that. It eliminates the dependency, vulnerability, and risk of being disabled in America. It provides options in a capitalist system that will never hire neurodiverse young people. The funds are available to those who understand the system, who learn the rules and keep good records.
I’ll try to simplify things here today:
SSI - First Steps
The first step is to apply for Supplemental Security Income (SSI). Because this is a program aimed at low income individuals, the young person can never have more than $2,000 in their bank account. The government doesn’t care how much you earn, because this is a program for the young person, not you.
The young person has to have a documented severe disability that will interfere with “substantial gainful activity.” In other words, if your young person won’t listen to a boss, has bad judgement, and can’t handle change in routine, they may never be employed and will qualify for SSI.
It takes almost a year to get through the system proving that your young person has a severe disability and no money. There are interviews on the phone and in person. Lots of documents have to be scanned and submitted. There are months of waiting and then sudden demands for paperwork. A lawyer might be needed to create a Special Needs Trust or to appeal a bad decision.
Do it. Keep good records and folders with your documents. Find good people who can answer your questions, when you hit road bumps.
Medicaid - Opens the Door
In most states, by completing the SSI application, you automatically qualify for Medicaid. It’s one application. In other states, there’s another step in the process. Why bother with Medicaid when you already have health insurance through your job? Hint: It’s not about the health insurance.
Medicaid provides a block grant to the states for additional support for people disabilities. Then the state adds their own funds to the pot. Once you have Medicaid, then it’s time for the next step in the process, the state paperwork.
State Systems
So, the first steps in the process begins with the federal government when your child turns 18 and is eligible for SSI. Your journey continues at the state level, when Medicaid distributes its funding there.
Believe or not, you will have to prove to a whole new group of bureaucrats that your young person is really disabled. You’ll answer the same questions and spend another year on duplicate paperwork. That’s the way it is.
Every state handles their disability system differently. Some are more generous than others. Some states, like New Jersey, have multiple different departments within the state government supporting disabled adults. The Department of Labor might provide internships at Stop and Shop, while The Department of Human Services provides the funding for day programs. Yes, you have to apply to each department for funding.
After qualifying for the state benefits in my state, the funding is given a third party intermediary, which then distributes the funds either for private services or directly to the parent — whoever is providing the care, gets the money.
The money is there, but a parent must ensure that the funding trickles its way down from the federal government to the state government to your young person to pay for their care and support.
Thoughts on the Big Picture
Getting disability payments in the US involves two layers of government — federal and state. Within a state, different departments within the state bureaucracy could provide services. It’s redundant and wasteful, federalism at its worst. It rewards the smartest and most persistent caretakers; others get nothing.
How many homeless people actually have a medical issue and could be receiving for this help? Rather than living in a tent on the sidewalk, they could live an apartment with medical oversight and enjoy a full fridge. I’m sure that many could be getting support, but they lack that determined, educated parent to wade through three years of paperwork.
If everybody who was eligible for these services was actually enrolled, it would be very costly. I don’t have any answers. My job is just to help other autism families.
The Great Leap and The Autism College Connection, LLC does not provide legal, accounting or tax advice. This newsletter has been prepared for informational purposes only, and is not intended to provide, and should not be relied on for legal, accounting or tax advice. You should consult your own tax, legal and accounting advisors before engaging in any transaction.
LINKS
I’m going to be offering private consultancy services soon. If you live in New Jersey and want more help with this process, please contact me.
Yesterday was World Autism Day! An extra hug for my dude. He’s going to Landmark College for six weeks this summer — his first time away from home— and then he’ll finish his IT degree at our community college in the fall. So proud of him.
What would you do if your child was “THAT KID” — the behavioral kid in third grade? Great article in The Cut by Anya Kamenetz.
“The effects of the pandemic include increased anxiety, stress, depression, and trauma that have not gone away. There’s been no return to normal.” In a recent federal survey, 84 percent of public-school leaders agreed students’ behavioral development has been negatively impacted by the pandemic. (Perhaps the most extreme example of the behavioral plague in city classrooms: a recent string of student-inflicted stabbings.)