Does anyone play the game Jenga™ at home? Once the internet time has run out, it’s a favorite with my son, who enjoys a dexterity challenge and loud crashing noises. For those who have never played, the game involves stacking rectangular wooden blocks in a pattern where each layer contains three rectangles laid side by side to form a square with alternating layers arranged parallel to each other and perpendicular to the layer directly below or above. Once a tall narrow tower has been constructed in this fashion, players alternate removing one rectangular block at a time from anywhere within the tower stack except from the top and then placing the removed block on the top. Even if you have not played the game, you can probably guess when and how the game ends. Eventually, one unlucky player is going to be the one that removes the block that destabilizes the tower and causes it to crash.
Putting together supports for your child with a disability can feel something like playing a game of Jenga™. You work very hard while your child is going through school to build up a tower of supports both external, by enrolling your child in therapies and activities, and internal by building your child’s academic and social skills at home and at school. Then your child gets to transition age, which typically starts at 14 and continues through the maximum age that the youth can continue to attend high school in her/his state. For Illinois, transition continues through age 21. During transition, you build the tower higher and, one hopes, stronger by teaching the child practical life and work readiness skills and, ideally, providing the youth with real-life work experience in small doses.
But then comes the day that, as the saying goes, “the bus stops coming.” Your child, who is now a young adult, has aged out of school. The physical, speech and occupational therapy that your son or daughter used to receive through the school district is removed. The rhythm that structured most of each day and much of each year is gone. The environment for learning new skills from professionals is gone. The discipline of completing assignments and progressing through a curriculum towards goals is gone. If you and your son or daughter had a good relationship with one or more teachers, aids or administrators you have lost those non-parental figures who provided guidance and care for your son or daughter and insight and support to you. There is no ready, daily environment in which your son or daughter can interact with peers with and without disabilities. There is no lunchroom or student lounge to hang out in, no gym to work out in and no school sporting matches, theater, spirit week or other events to look forward to. If the school had provided or facilitated volunteer or work experiences, those are gone, too. It’s as if the Jenga™ blocks are being pulled out one by one.
But if you recall, in Jenga™, every block you remove successfully is then replaced on the top of the tower. If you do this well, the tower continues to grow and does not collapse. As your now young adult child moves into the world of adult services, you need to add back each of those pieces that has been removed by the end of school. One of the first steps in this process, which can actually take place at age 18 before your youth leaves school, is applying for Supplemental Security Income, or SSI. SSI is a means tested cash benefit that is available to eligible people with disabilities. To be considered eligible, the applicant needs to have a physical, mental or behavioral disability that is expected to last more than a year or end in death, and which prevents the applicant from engaging in Substantial Gainful Activity or SGA. SGA, in turn, is defined as work that pays more than $1,260/month. In addition, the applicant may not have more than $2,000 in countable resources in her/his own name. If eligible, the maximum Federal SSI benefit a person can receive for 2020 is $783/month if your son or daughter contributes to the household living expenses. Less if s/he does not. Some states supplement this amount.
It is something of a process to apply for SSI. At the very least, you have to assemble a stack of documents for your child with a disability that testify not only to the diagnosis, but also the limitations that diagnosis and related conditions place on the youth’s ability to work. In most cases, you and your child must sit through an intake interview that can last for several hours and in some cases, you are at first denied and must appeal. Some families consider the process and say: “All that work for $783/month or less?” Moreover, since many families have employment as a goal for their youth with a disability and since any earned income above $85 will reduce SSI immediately, the cash benefit of SSI for some youth will be short lived. Despite the potential hassle and the fact that work will erode the amount of benefit received, I strongly encourage every family I work with to obtain SSI if at all possible.
SSI is that linchpin Jenga™ block. Pulling it out makes the collapse of the whole support tower almost inevitable. Here’s why.
Medicaid, through what are called “waivers,” underwrites almost all adult services for people with disabilities. If your son or daughter is likely to need vocational/employment or residential supports in her/his adult life, the first question a service provider will ask is whether your son or daughter has Medicaid because, unless you can afford to private pay for those services year after year, the provider agency needs to bill Medicaid to get paid. Medicaid is the gateway to services and SSI is the gateway to Medicaid. In 40 state and the District of Columbia, SSI eligibility automatically confers Medicaid eligibility and in 34 states, Social Security informs the state Medicaid agency without the need for a second application or interview. The other seven states do require a separate application, but the applicant need meet no more restrictive criteria. But even in the remaining 10 states—and my home state of Illinois is one of them—the state Medicaid agency does rely heavily on the Social Security Administration’s definition of “disability” and most people who qualify for SSI will also qualify for Medicaid.
Beyond initial eligibility, a person with a disability who has qualified for and received SSI for even one month has a huge advantage when it comes to keeping Medicaid for life. This is due to provisions in the collection of Social Security regulations called the Program Operations Manual System or POMS. Section 1619(b) of the regulations provides that a person with a disability who once had SSI and related Medicaid eligibility and who subsequently loses SSI eligibility due to increased earned income retains her/his Medicaid eligibility. Section 1634 of the Social Security regulations provide that a person with a developmental disability diagnosed before 22, who loses SSI eligibility due to the receipt of a so-called “Childhood Disability Benefit,” or “CDB” (aka “Disabled Adult Child” or “DAC” benefit) from a parent’s work record, nevertheless retains eligibility for Medicaid. And elsewhere under section 503 of Public Law 94-566, the so-called “Pickle Amendment,” preserves Medicaid eligibility for a person with a disability who loses SSI eligibility because her/his unearned Title II Social Security benefits increase with a Cost of Living Adjustment (COLA). Thus, receipt of SSI for even one month can substantially insure a person’s Medicaid from many of the circumstantial changes that might otherwise remove it, causing the whole service and support tower to collapse.