The Disability Support System

An Introduction to SSI

This summer, I’m working on a book about the transition process for students with autism. I’ve got 38,000 words, with a target of 60,000. Chugging along. This week, I worked on Chapter 5, which talks about the Disability Support System. I’m sharing the first part of the chapter, which covers part of the SSI process. I’ll publish the second of half this chapter next week.

If I make any errors, please let me know. Appreciate any feedback.

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First Steps in Accessing the Disability Support System (Chapter 5)

When our kids reach their last years of high school, we’re bombarded by new concepts and jargon.  We have to learn about special colleges, disability services, employment services, legal matters, and more. 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 can 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 have to be realistic and know that the world is not yet autism-friendly. Too many of our 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 a long time in 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 might be thirty before they get their first job. By getting into the disability system beginning 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 show 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 even drive their student to evaluators. The individuals themselves certainly cannot complete the paperwork. Sadly, some families might not have the time or the skills to complete all the requirements, so 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. 

Who Qualifies for SSI?

The first step in getting into the disability system is to apply for Supplemental Security Income (SSI) when your teen turns 18, and becomes an adult in the eyes of the government. Adults qualify for SSI if they are disabled, have limited income and resources, and have impairments that are expected to last more than a year. While the forms can’t be submitted until their 18^th birthday, preparation should start at age 17.

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 government doesn’t have a checklist of official diagnoses that they recognize. Autism may or may not be covered, depending on its severity. The government says that a disability must be significant enough to prevent a person from earning “substantial gainful activity,”meaning that they could not earn $1,550 per month from any job. What does that really mean? 

We all know that our kids are amazing. But while you are working on the disability paperwork, you have to ignore their gifts and focus on their deficits. So, close your eyes and imagine your son or daughter standing on their feet for seven hours in a row behind the counter at McDonald’s. Imagine the customers, who may include irrational people and mean people. How would your child react to someone who came into the restaurant and was drunk? Could your child put their phone down and ignore distractions to work consistently all day. Could they do all that without a teacher, you, or a job coach nudging them along? If you can’t envision your child working in McDonald’s, then you should apply for help. 

Is My Child Disabled Enough?

Some kids with autism are an obvious fit for the system. Their disabilities are significant enough, so it’s clear to everyone that employment is out of the question. Other autistic kids fall into a vast gray area. 

The gray area kids might be academically strong and score well on IQ tests, yet they have significant issues that would interview with SGA. The government makes decisions based on functionality, not SAT scores. In those cases, I tell those parents to go back to the McDonald’s mental exercise:

Can you imagine your child working in McDonald’s? Would your child always talk inappropriately to clients or a boss? Remember, they would get fired for just one incident. Could they sustain attention on a boring task for more than an hour? Do they have OCD or issues with anxiety? Would they have a meltdown or be in any way inappropriate, if their OCD is triggered or if they were having a bad day? 

Even if you answer yes to any of those questions, you need professional evaluations that reflect those concerns. If your autistic student has strong academics, a quick road towards getting SSI support is NOT guaranteed. We really need to prove that our kids, while talented in some areas, have disabilities that are still significant enough to create a serious barrier towards employment. Some parents have to appeal negative decisions. 

According to the Social Security Administration, 58% of people who applied for services for their adult children were approved in 2022; 63% were approved after an appeal process.^⁠1 But we’re not entirely sure why 42% are rejected^⁠2. It might because the government is getting tougher about determining the severity of a disability, or because the process is too complicated with many ways for parents to make errors. [fact check]

Parents of lower needs young people should not feel guilty about applying for support services. This safety net is NOT just for the most impaired people. SSI is supposed to provide help for anyone who can’t work as a result of a disability. The reality is that 85 percent of young people with autism, even those that finish college, are not employed. They have trouble getting through the interview. Their OCD and sensory issues may get them fired after a week. I know students with degrees from Drexel and American University who are at home playing Mario Kart, because nobody will hire them. So, if your student has autism, whatever the flavor, you should apply for services. 

Parents with students with more obvious impairments have their own challenges in the transition process. They might not worry about getting approval, but down the line, they have trouble finding the right services to support their young adults. Because benefits are based on the level of disability, those parents will also have to push themselves to accurately describe their children’s level of impairment in order to maximize benefits. 

None of this is easy. All parents will go through a grieving process while filling out these forms. You’ll have to tell strangers that your beloved child can’t make themselves breakfast or needs to be reminded to brush their teeth. You’ll be doing this, while your friends on Facebook are sharing pictures of their kids going off to college and going to the Prom. There’s probably nobody at the high school helping you with this process. This process feels very lonely. 

Muscle through the tough moments in the process and be good to yourself. Things will get easier. 

The Paperwork Trail

As I already mentioned, onboarding your kid onto SSI should start at age 17 with two easy tasks. First, drain your child’s bank account and put all the money into a separate bank account under your name. To receive government support, your child cannot have more than $2,000 in his name anywhere. Our lawyer told us to keep a zero balance in our son’s special needs trust until we had gotten into the system. 

Second, make sure you have recent school evaluations and medical paperwork with lots of information about attention, cognition, and other relevant information. You will also need official documentation for any coexisting conditions, ie. anxiety, OCD, epilepsy, depression, dyspraxia. Those issues that are so common with autism will interfere with employment, and it will be important to include that information in your application. 

The next step is to make sure that you have plenty of reports from medical professionals and school personnel. The year before they turn 18, you should review existing documents, see if they need to be updated, and get additional reports. Tell your doctors and your school why you need these reports, so their reports will be geared towards government workers. If the documentation includes information that is very employment-specific that would be even better. 

Your doctor and school evaluations should point out all relevant deficits. They might say that your son or daughter has:

• a poor attention span

• difficulties in social interaction

• difficulties in verbal and nonverbal communication and in imaginative activity

• restricted range of activities and interests

• difficulties understanding, remembering or applying information

• difficulties with concentration, persistence, or maintaining pace

• difficulties with adapting or managing oneself

You’ll want to start the application process as early as soon as your child turns 18, when they are most immature. Your kid will grow a lot between the ages of 18 and 21. You’ll be able to truthfully describe their impairments in more depth at age 18, than at age 21 or 25.  

Applying earlier is also beneficial, because your student should not accept any paid employment through the school or an agency, until after you’ve completed this application. I’ve heard of cases where an application was undermined by a one-month paid internship that was highly facilitated by school staff. To increase the chances of approval, you should apply before they get any job training. 

As you look around on the SSI website, you’ll see information about SSDI. Social Security Disability Insurance (SSDI). SSDI is for disabled adults, whose parents are over 65 and have filled for their social security payments. It’s more money, but that’s another issue for the future. Right now, SSI is your primary concern. 

Think of Your Kid On Their Worst Day

When your child turns 18, you’ll log onto the social security administration webpage and start the paperwork. It could take an entire year to get through the process, but that doesn’t mean a full 12 months of paperwork. You’ll submit forms, provide financial information, submit medical reports, and maybe even have an in-person interview, but it will be spaced out throughout the year.

Documents that you’ll need for SSI:

• The most recent IEP

• Birth certificate

• Doctors’ names, addresses, telephone numbers

• Prescription information

• Details about hospitalizations

• Guardianship paperwork, if available

• Financial records