Making the Case for SSI Eligibility When Your Child Has Autism

About the Author

Cindy Gardner is an attorney focused on serving families with special needs throughout Tennessee, including special needs trusts and conservatorships. She is a partner in the Special Needs Law Center (Maurer & Gardner, PLLC). She has served on the boards of The Arc Tennessee and The Arc of Davidson County and the Greater Nashville Area.

Our hope is that this weekly blog will offer information you want to know, so if you have a question you want answered about employment for people with disabilities or other mysteries of the world of work, please email me at janet.shouse@vumc.org.

By Cindy Gardner

What kinds of documentation do families need to apply for Supplemental Security Income when their child reaches the age of 18? This question often comes up as parents try to prepare for their child becoming an adult. However, for parents of children with autism, this question is often more difficult to answer because of the widely varying abilities of those on the autism spectrum.

As most of you know, Supplemental Security Income is a monthly benefit paid by the Social Security Administration to people with limited income and resources who are disabled, blind, or age 65 or older.  In 2019, that monthly amount is a maximum of $771.00 per month.

Unlike Social Security Disability Insurance benefits or SSDI, SSI benefits are not based on an individual’s prior work or a family member’s prior work.

In order to qualify for SSI, the individual (adult child):

  • Must be “disabled” as defined by the Social Security Administration;
  • Must have limited income– (prior to age 18, a parent’s income is “deemed” to the child, but upon reaching their 18th birthday, this rule no longer applies) and the parent’s income will not count against the child, if the parent charges rent to their adult child;
  • Must have limited resources– under $2,000, with certain exemptions (for instance, the house they reside in or a car), and;
  • Must file an application– (unless the child received SSI benefits prior to 18, in which case, they will automatically receive an “Age 18 Redetermination” within one year of their 18thbirthday to assess their eligibility under an “adult” standard, rather than a child standard).

Determining “disability” for an 18-year-old with autism, for purposes of SSI eligibility, may require a significant change in the way a parent looks at their child’s disability.  For instance, while in school, for purposes of IEP meetings, the “label” or specific diagnosis of a disability (for example, Asperger’s vs. PDD-NOS) often means less to a parent than the actual educational services, treatments, therapies, behavior interventions, and classroom accommodations that the child receives and what progress they are making year to year.

Upon applying for SSI, however, the parent will need to rely heavily on the school and medical records leading up to the child’s 18thbirthday to prove the disability.  To qualify for SSI, an adult on the autism spectrum, on the other hand, must have medical documentation of both of the following:

  1. Qualitative deficits in verbal communication, nonverbal communication, and social interaction; and
    1. Significantly restricted, repetitive patterns of behavior, interests, or activities.

AND

  1. Extreme limitation of one, or marked limitation of two, of the following areas of mental functioning:
  2. Understand, remember, or apply information– This area of mental functioning refers to the abilities to learn, recall, and use information to perform work activities. Examples include understanding and learning terms, instructions, procedures; following one- or two-step oral instructions to carry out a task; describing work activity to someone else; asking and answering questions and providing explanations; recognizing a mistake and correcting it; identifying and solving problems; sequencing multi-step activities; and using reason and judgment to make work-related decisions.
  3. Interact with others– This area of mental functioning refers to the abilities to relate to and work with supervisors, co-workers, and the public. Examples include cooperating with others; asking for help when needed; handling conflicts with others; stating own point of view; initiating or sustaining conversation; understanding and responding to social cues (physical, verbal, emotional); responding to requests, suggestions, criticism, correction, and challenges; and keeping social interactions free of excessive irritability, sensitivity, argumentativeness, or suspiciousness.
  4. Concentrate, persist, or maintain pace– This refers to the abilities to focus attention on work activities and stay on task at a sustained rate. Examples include initiating and performing a task that you understand and know how to do; working at an appropriate and consistent pace; completing tasks in a timely manner; ignoring or avoiding distractions while working; changing activities or work settings without being disruptive; working close to or with others without interrupting or distracting them; sustaining an ordinary routine and regular attendance at work; and working a full day without needing more than the allotted number or length of rest periods during the day.
  5. Adapt or manage oneself– This refers to the abilities to regulate emotions, control behavior, and maintain well-being in a work setting. Examples include: responding to demands; adapting to changes; managing your psychologically based symptoms; distinguishing between acceptable and unacceptable work performance; setting realistic goals; making plans for yourself independently of others; maintaining personal hygiene and attire appropriate to a work setting; and being aware of normal hazards and taking appropriate precautions.

As you can see, upon the child reaching the age of 18, an “adult” standard is applied to the applicant’s limitations, as they relate more to “work settings” rather than the classroom settings that parents have become so used to discussing in all those IEP meetings. Mentioning skills or deficits in the IEP, as they relate to a future work setting, will logically make it easier for the Social Security Administration worker to find limitations for purposes of SSI.

Furthermore, since documentation will be required to “prove” these limitations, it would be wise for a parent to also consider shifting some focus in IEP meetings (after age 15 or so), to quantify in writing these limitations as much as possible.  The Social Security Administration does not require documentation of allof the above examples, but they will look for limitations on the IEP, as well as medical records, using these examples as their “test” for eligibility for SSI.

So, while we would prefer to focus on the strengths of a student, if there is any indication that this student might, at some point, need SSI, the best way to help make the case for eligibility is to have clear records of the student’s limitations.

What is an “extreme” or “marked” limitation?   

The Social Security Administration has developed a five-point rating scale to evaluate the effects of a mental disorder, (No.1 – 4 above), consisting of:  none, mild, moderate, marked, and extreme limitation. To satisfy the paragraph B criteria, the mental disorder must result in extreme limitation of one, or marked limitation of two, paragraph B areas of mental functioning. Under these listings, the five rating points are defined as follows:

    1. No limitation (or none). You are able to function in this area independently, appropriately, effectively, and on a sustained basis.
    2. Mild limitation. Your functioning in this area independently, appropriately, effectively, and on a sustained basis is slightly limited.
    3. Moderate limitation. Your functioning in this area independently, appropriately, effectively, and on a sustained basis is fair.

Need TWO of these:

  1. Marked limitation.Your functioning in this area independently, appropriately, effectively, and on a sustained basis is seriously limited.

Or ONE of these (below): 

    1. Extreme limitation. You are not able to function in this area independently, appropriately, effectively, and on a sustained basis.

In summary, the Social Security Administration may interview parents as part of their determination of eligibility for their child to receive SSI benefits, but they will likely not just “take your word for it” of the limitations and severity of those limitations.  So, the key is to make sure, before your son or daughter reaches 18, the school’s records or medical records document those limitations.

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I want to thank Cindy for taking time over the holidays to write what I feel is important information for families to have. As we know, not every child with a disability needs or wants SSI, but many will need that kind of support. Too many families I know have struggled with obtaining SSI and have faced repeated denials and appeals because their son or daughter doesn’t seem “disabled enough” to qualify, yet they have experienced intense difficulties in completing post-secondary training or landing gainful employment. I hope this information can help families make a clearer case for those young people who do need the support of SSI. If you have questions or concerns, please contact me at janet.shouse@vumc.org.