Fill Out the Disability Paperwork!

Qualify for tutoring, Uber vouchers, support for college, mentors, social skill groups

“The government will help pay for our son’s social skill classes and give him some spending money? Really? Will my son qualify”

Those were just some of questions that fellow parents asked me, over a round of beers and chicken wings at the local bowling alley last Friday night. Our five boys can manage college classes, but can’t decide as a group how to split the cost of a plate of nachos. So, we parents stayed in the background, having our beers at the bar, and swooped in from time to time to manage their collective action problems. At the same time, I told them about Ian’s new government benefits.

I finally finished my two-year paperwork steeplechase. Ian is officially registered with both the federal and state governments for disability services. Woot! For the past year, he gets around $8,000 from the federal government, which we use for his food, clothing, food, clothing, school supplies, and entertainment. Now that he turned 21, he will get a budget of around $30,000 to spend on a range of services.

In the future, Ian will hopefully finish his education, get a great computer tech job, and not need these services. But right now, he will benefit from that support on the road to that goal. We will also have a safety net in place, if his disabilities prevent him from working, or should we suddenly drop dead. So, why didn’t my fellow parents know about all this? Why were they hearing about these benefits just now?

Well, many of Ian’s friends fit into a grey area of disability - they have a developmental disability, but not an intellectual disability. They are extremely socially clueless, but can ace the calculus test. Those parents haven’t been educated about government benefits, and maybe aren’t fully paying attention to outside information, because they are naturally focused on their children’s strengths.

Also, they probably aren’t getting information from other parents, because some parents are not necessarily forthcoming about government benefits. Disabled parents are always fearful that their benefits might be taken away, if the political mood shifts, so they keep information private. Of course, the disabled community should work together harmoniously, but that’s not always how it works.

So, let me be very, very clear. If your child has a mental health, medical, or development disorder, which has been documented for a long time, they probably qualify for federal and state benefits, even if they do not have an intellectual disability. Start filling out the paperwork. It’s worth it.

Here’s my checklist for all the paperwork. Start the process at age 17-1/2. Finish at age 21. It’s not hard, but you do need to be organized and reach out for help from experts at key points in the process.

Every state has its own disability supports. Some states are more generous than others. I’m just starting out on the New Jersey system, but I can still give you the basics.

After filling out a long questionnaire, the state puts recipients in tiers that range from A to E, with E needing the most care. Ian, who has autism and epilepsy and plans to live at home, was classified as a Tier B. He’ll qualify for almost $30,000 worth of supports. A third party will help me locate and pay for state-approved peer mentoring, social skills therapy, tutoring, and uber vouchers to transport him to college. It’s actually fantastic. Everyone should have those opportunities.

It’s easy to see why those with complicated lives and low education levels would be slow to get these benefits for their disabled children. There is a lot of paperwork. One really must be very organized and learn all the lingo. Yet, there are others barriers that impact all parents, regardless of income.

Even middle class families aren’t applying for the benefits, because they don’t realize that there are great services waiting for them, and because they don’t know their children will qualify. Honestly, I wouldn’t have started this process myself, if I didn’t have a highly connected friend, who shared stories about others in the system.

I am extremely relieved to finish this paperwork and to hear about the next steps. Most of the time that I was working on these forms, I had absolutely no idea what was at the end of the rainbow. Now, I know. Now, we can move forward as a family. Folders of notes have been dumped or filed away. And I’m moving forward with my own goals that have nothing to do with disability issues.

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LINKS

We took Ian to Universal Studio for his 21st birthday. I wrote about that trip on my main newsletter:

The Weekend in Orlando

Ian built his own computer. Smart boy.