Illustration by Emily Marra
Social Security Benefits
As you get older and consider your options for education, employment and other aspects of community life, it is important to understand any disability benefits you may receive and how they might change as you transition to adulthood.
Types of Benefits
There are two main disability benefits programs, both managed by the U.S. Social Security Administration (SSA). These are Supplemental Security Income (SSI) and Social Security Disability Insurance (SSDI).
SSI – Most minors who receive SSA disability benefits receive Supplemental Security Income (SSI). SSI is a needs-based program to provide for basic living expenses, such as food, shelter and clothing. You do not need to have a work history to receive SSI. At age 18, someone receiving SSI benefits undergoes a review to determine whether their condition or illness meets SSA’s definition of disability for an adult.
SSDI – Unlike SSI, SSDI is an insurance program. When someone works, they pay into the SSDI system, and, if needed due to illness or disability, they and their dependents receive a benefit. Youth who receive SSDI usually do so based on the work record of a parent or grandparent who paid into the system and is now disabled, retired or deceased. Thus, a minor does not need to be disabled to receive SSDI. Also, this benefit can continue until two months after age 19 if someone is still enrolled in school. Someone receiving SSDI who is considered disabled under the adult definition of disability can continue to receive SSDI after they turn 18 for as long as they remain disabled.
Disability Definition – Minors vs. Adults
It is important to understand that the definition of disabled for purposes of SSA benefits is different for minors and adults.
Minors – A minor is considered disabled based on how a physical or mental condition or illness affects development and functioning in typical daily environments (i.e., school, home, community). As mentioned earlier, at age 18, a review is scheduled to determine whether the condition or illness meets the SSA definition of disability for an adult.
Adults – SSA considers an adult to be disabled when someone’s illness or condition prevents substantial work activity for 12 months or longer. In other words, the main consideration for adults is how the condition or illness affects the person’s ability to work. If you work, whatever your age, it is important to report your earnings to SSA. Earnings can affect the amount of your benefits and even affect eligibility for SSI or SSDI. If SSA later finds that you were paid too much or are no longer considered “disabled” because of work activity, you could be asked to repay benefits that you were overpaid.
Work Incentives
Fear of losing disability and health care benefits can be a significant barrier for transition age youth considering employment. Myths and misinformation about benefits are widespread among people with disabilities and their families. As a result, families may not encourage youth receiving benefits to work. But there are many work incentives that can offset your earnings. When reporting income, it is important to also report any work incentives that you would like for SSA to consider, to reduce a portion of your countable earnings. There is also a Student Earned Income Exclusion that allows an SSI recipient who is under age 22 and regularly attending school to exclude a portion of their earnings from being counted as earned income. For more information on work incentives, consult the Social Security Red Book.
Change in Disability Determination
If at some point a determination is made that the person is considered no longer disabled, SSA must send them a written notice of the decision, including all appeal rights. To continue receiving SSI benefits during an appeals process, the appeal must be requested within 10 days of the notice of discontinuance.
If SSA determines that the person is no longer disabled by their illness or condition, Section 301 (Continued Payment Under a Vocational Rehabilitation or Similar Program) may apply. Section 301 allows an SSI or SSDI recipient to continue receiving benefits if they: 1) were participating in a vocational rehabilitation or other approved employment program at the time their disability ended, and 2) the program will reduce the likelihood of needing future disability benefits.
Section 301 also applies to SSA benefit recipients aged 18-21 participating in an individualized education program (IEP) developed in accordance with the Individuals with Disabilities Education Act (IDEA).
There is another Social Security benefit called Childhood Disability Benefits (CDB), (formerly known as Disabled Adult Child (DAC)), that may apply to some transition-age youth with disabilities. Requirements for receiving CDB include being 18 or older, unmarried (with some exceptions), having acquired a disability prior to age 22, and being a child of a parent who is receiving Social Security retirement benefits or SSDI or is deceased. It is important to know that a disabled adult “child” is entitled to receive a special category of Medicaid (called “Protected Medicaid”) because they would continue to be eligible for SSI in the absence of the CDB benefit or increases to that benefit.