The early bird gets the benefits

My husband and I take an exercise walk outside early in the morning on most days.  In these sultry Midwest days of summer, the literal “early birds” are up by 4 or 4:30am twittering and, yes, getting their worms.  By 9 am, when the above-ground temperatures have reached the 90s°F, the worms have either burrowed way too deep to be plucked out or have succumbed and shriveled up.  Any late-rising robins are out of luck until the next day.  As cliched as the saying is, it continues to be true in real life.

The birds aren’t the only ones who are better off starting early.  Young adults with intellectual and developmental disabilities set themselves up for the best in life when they take the steps to qualify for each benefit for which they are eligible as soon as they first meet those eligibility criteria.  For many youth, the age of 18 is an inflection point at which they become eligible for Supplemental Security Income (SSI), which is the disability benefit, available to people with little or no work history under Title XVI of the Social Security Act.  While this benefit does not require any Social Security credits—which must be earned by paying FICA tax—it does require that the applicant have low income and few assets.  When an applicant is under the age of 18, the parents’ income and assets are considered, keeping many youth ineligible.  Once the young person has reached 18, only his/her own income and assets are considered, opening up eligibility.  Similarly, Medicaid, which can fund a variety of disability-support services, requires the applicant to have low income and few assets.  Medicaid also considers the income and resources of the entire family when the youth is younger than 18.

Note that Medicaid eligibility under the Affordable Care Act (ACA) expansion considers the income or all members in the same “tax household” as the applicant.  Thus, unless youth with disabilities request to be enrolled in Medicaid under the Aid to the Aged, Blind and Disabled (AABD) category, they may be asked to provide income and asset information for their parents and may be denied, based on those income and asset figures.  If the youth are not claimed on their parents’ tax return, then the parents and the youth are NOT members of the same tax household, and the parents’ income and assets should be irrelevant.  Furthermore, if the youth requests Medicaid access under the AABD category, rather than the ACA category, the income and assets of their parents are always irrelevant, once they are 18 years old.  Youth with disabilities covered under All Kids, the Medicaid program for low-income minors, may continue that coverage until age 19, when they can become eligible under AABD.

Thus, age 18 (for SSI) or ages 18-19 (for Medicaid) are inflection points for youth with disabilities, and I encourage them, with assistance from their families, to apply for those benefits soon after their respective birthdays.  There are several reasons that applying sooner is better than later.  First, most youth who are still in school have ample evidence of their disabling conditions.  While the Individual Education Plan (IEP) alone does not constitute the “medical evidence” that the Social Security Administration requires, it can substantiate the level of support that the youth needs to accomplish various tasks, as well as substantiate the youth’s ability to “understand, remember or apply information; interact with others; concentrate, persist and maintain pace; and adapt and manage oneself,” which are some of the criteria that Social Security uses to determine whether a person meets the criteria of “intellectual disability”, or “autism spectrum disorder”.

In addition, because school districts frequently require updated neuropsychological evaluations to maintain all supports and services, when a young person is just 18 and still completing high school, s/he will have recent scores for tests like the Weshler Adult Intelligence Scale (WAIS) and the Vineland (or any similar) test of adaptive behavior.  Knowing the importance of applying for Social Security and Medicaid benefits at 18 or 19, some school districts will work proactively to schedule testing such that the reports are available by the time of application.  Tests that measure IQ and adaptive behavior can provide important evidence of intellectual and developmental disability.

Finally, most young people, who are still in high school or are still within the public school system in post-high school transition programs, have very little paid work experience; and when they have engaged in vocational training or work-based learning, their need for supports and accommodations have been documented.  These two factors are important because when evaluating for any disabilities in adults, the Social Security Administration, especially, is largely concerned with the extent to which any diagnosis limits the applicant’s capacity to work and earn.  If a student applicant has very little evidence of employment and a well-documented need for supports and services as they engage in vocational training, it will be hard for the SSA to determine that the student CAN engage in what they call Substantial Gainful Activity (SGA).  Being unable to engage in SGA is the first step towards receiving a disability determination. 

Youth with intellectual and developmental disabilities need varying levels of public benefits to live their most independent and self-determined adult lives.  In most cases, though, at least some benefits will be necessary, particularly once parents, siblings, and other natural sources of support age and move into different stages of life.  Just as those 4-4:30am robins are most likely to eat well by catching the worms early, youth who apply for key benefits as soon as they are able are most likely to secure those pillars of support early as well.