For fledgling adults with disabilities, paperwork sometimes disrupts SSI payments

Each month, more than a million low-income U.S. children with disabilities receive Supplemental Security Income that helps them and their families cover the costs of food, clothing, housing and other necessities. When those young recipients turn 18, they must reapply for those needed SSI funds, a requirement that disability advocates fault for causing what can be an extended, if not permanent, loss of those needed funds. 

“I can’t emphasize enough how complicated, confusing and overwhelming it is for clients,” said attorney Claire Grandison, who leads the SSI Unit and Youth Justice Project at Community Legal Services in Philadelphia. “There are rounds and rounds of lengthy forms to complete, and we often see people lose benefits because the process is so difficult to navigate.”

And the difficulty is even greater for some subsets of disabled youth and young adults, said disabilities income and employment researcher David Wittenburg, of Mathematica, based in Princeton, N.J.  Simply turning 18, he said, does not mean that a young person is capable of understanding or completing the necessary paperwork for requalifying.

“The evidence indicates that youth with mental disorders are disproportionately likely to lose benefits,” said Wittenburg. Those in this category tend to have limited adult support and are often from single-parent families.

“A big concern,” Wittenberg said, “is whether they fall into the juvenile justice system or experience homelessness.” 

Omitted details sometimes result in loss of SSI income

According to Social Security, about one-third of children lose their SSI eligibility when they turn 18. A portion of those occurs simply because certain health conditions improve with time.

“Some disabilities are not life-long,” attorney Grandison said. “There are some mental conditions and physical disabilities that can improve through treatment.”

In other instances, youth can lose benefits when information that would weigh in their favor isn’t submitted. Grandison recalled a client with an intellectual disability who was cut off. Though his condition was well-documented throughout childhood, SSI did not have his evaluations from that period. Her agency retrieved the records, and upon appeal, SSI overturned their decision, and the young man was immediately reinstated.

“For others, we have to go through a lengthy appeal process which can take up to two years.”   

For those who don’t know someone who can help them fill out the necessary paperwork, don’t speak English and need forms translated, or don’t have computer skills or access to print out forms — especially now that some Social Security offices  temporarily are closed due to COVID-19 — requalifying for SSI can be extremely burdensome.

For help requalifying for SSI, contact your state office of disabilities for free legal resources in your area. 

“There are just a lot of barriers where people can get lost,” says Grandison. “A mistake or small misunderstanding can mean their appeal is denied when they were doing their best to cooperate.”  

Meeting SSI income and disability requirements

For a child to be eligible for SSI, the child must meet the family financial and personal medical criteria outlined by the Social Security Administration, which administers SSI. 

Medically, a child must have an impairment, or combination of impairments, that cause what is termed “marked and severe functional limitations.” A marked limitation means that the impairment seriously interferes with a child’s ability to independently initiate, sustain or complete activities in accordance with their age. A severe functional limitation means that the impairment is more seriously limiting. Fifteen types of disorders — ranging from anatomical, physiological and psychological abnormalities — fall under Social Security’s listing of impairments for children.

When parents or guardians apply for SSI for their child they are required to supply Social Security with detailed information about the child’s medical condition and how it affects their day-to-day capabilities, along with records from doctors, teachers, therapists and other professionals who are knowledgeable about the child’s condition. Social Security then forwards the information to a Disability Determination Services office in the state where the child resides. There, the agency’s doctors and other trained staff review the information and decide if the child is eligible for funds.

In some instances, further testing or an additional medical examination may be necessary, in which case Social Security pays the costs. Once a child is accepted into the SSI program, periodic reviews are conducted to verify that the child’s condition continues to meet the criteria for benefits. 

Annually, starting when they’re 14, recipients receive what now is a 24-page brochure, What You Need to Know About Your Supplemental Security Income (SSI) When You Turn 18. Arriving by mail a month before that milestone 18th birthday, the brochure outlines the redetermination process. It is designed to assess the now fledgling adult’s ability to become gainfully employed and includes resources for work incentives, grants and scholarships. Unless the recipient is married, family income and resources are no longer factored in.

Other resources include online guides Helping Young People with Disabilities Transition Successfully to Adulthood to assist parents and guardians; and the Red Book, a reference tool designed to provide a working knowledge of employment support and work incentives, along with information to assist youth and their parents, providers, or representatives locate national and community supports and resources.

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Julia Chance is a New York-based, journalist, author and teacher.