When our kids reach their last year of high school, we’re bombarded by new concepts and jargon. We suddenly must become knowledgable about special colleges, disability services, employment services, legal matters, and more. It took us fifteen years to totally understand IEPs and IDEA laws, and now we’re expected to learn new material. It’s totally rude, I know.
Adding to this challenge, we have to find the right places and people to teach about these matters. Other parents might learn about post-high school options from guidance counselors, friends, and neighbors. We don’t have the same resources. If we’re lucky, a slightly more experienced friend might show us the way, but most of us will learn the ropes by networking with strangers and through trial/error. We just figure out things as we go along.
Managing the disability support system is one of the challenges in our transition journey. It starts officially at age 18, but preparations should start a year earlier. It’s a several step process, which involves two levels of government, duplicate forms, long waits, and organization. The whole process, from beginning to end, can take two years or more. Frankly, it’s a pain in the ass, but it’s worth it.
If you make it through the gauntlet, your student will have an insurance policy to protect them in their future. Hopefully, they’ll eventually go to college, get jobs, have fabulous lives, and no longer need these benefits — that’s what we want for all our kids — but we must be realistic and know that the world is not yet autism-friendly. Too many neurodiverse kids are never employed, even those who ace all their college engineering classes. If they can’t find work, then this disability safety net will keep them out of poverty.
Our kids may need many years to complete college or getting job training. They have various challenges, so the traditional high school to college to job pipeline doesn’t usually work for them. Some of our kids may not get their first job until they are in their late twenties or early thirties. By getting into the disability system at age 18, they can use those benefits to support themselves during the long training period.
The first step is to explore whether your young person will qualify for disability benefits. Not all people with an autism diagnosis are eligible. It’s necessary to prove to the government that their level of autism would impede “substantial gainful activity.” Parents will need to provide evidence of their claims with medical documentation, lengthy questionnaires, and interviews.
The process is dependent on savvy parents, who can navigate the system, provide medical documentation, and drive their students to evaluators. Most of the beneficiaries cannot complete the paperwork independently, so family must do this task. Sadly, some families might not have the time or the skills to complete all the requirements. In those case, their kids don’t get this support. Our safety net for disabled people is in need of serious overhaul. Understanding that this is a flawed system, I hope that this book helps level the playing field as much as possible.
This chapter is a general overview of the entire disability system, which covers two levels of government and multiple disabilities. My goals are to help sort out the jargon with understandable definitions of key terms, like SSI, Medicaid, DDD, and more. I will provide a “to-do” timetable. I will explain who qualifies for the funding and why you should bother with this paperwork nightmare. I’ll provide some examples from my state, but I’ll keep the conversation aimed at a nation-wide audience. I’ll stick to the basics; this chapter is aimed at a beginner level parent.
- Overview of the Whole Process — Video — Navigating the Disability Safety Net
- How to Apply for SSI
The Autism College Connection 