SSI: A Critical Support for Disabled Children and their Families

Nov 08, 2011

By Elizabeth Kenefick

Families taking care of children with disabilities can face significant financial burden, particularly when they have low- and moderate incomes.

One such family, the Bentleys, traveled all the way from Covington, Ky., recently to testify before the House Ways and Means Subcommittee on Human Resources about how SSI benefits for their 8-year-old son have been a critical lifeline. From birth, the Bentley's eight-year-old son Will had difficulty keeping liquid in his mouth and was slow learning to speak. By age 3, he was having violent seizures that affected his short-term memory. The growing list of diagnoses and necessary appointments and medications overwhelmed the family both financially and emotionally. His mother described the family's ordeal:

"I had never applied for SSI before because my husband and I really wanted to support Will ourselves. We quickly learned that the dream that we had of our family would never be. I surrendered my career and we adapted our life to living it so that Will's needs were met. Before he was granted SSI in 2010, we could barely afford the gas to drive him to his therapies and appointments with his specialists. Now, SSI allows us to focus on what Will needs...For a parent with a child with a disability, the wealth of support that comes from SSI and Medicaid is a dream come true."

Ms. Bentley's story was presented during a hearing on the Supplemental Security Income (SSI) benefits for disabled children. SSI provides up to $674 a month in cash assistance to low-income blind and severely disabled adults and children. In 2010, the Social Security  Administration paid almost 8 million recipients about $50 billion in SSI benefits, of which more than $9 billion was paid to the families of about 1.2 million disabled children.

Research by Susan Parish, Roderick Rose, Michal Grinstein-Weiss, Erica Richman, and Megan Andrews shows that families with disabled children are more likely to be poor than families with non-disabled children. Even controlling for income, researchers found that families with children with disabilities are more likely to experience economic hardship than other families. These families face additional financial burdens associated with caring for these children such as therapy costs and specialized daycare. They are also more likely to experience food insecurity and housing and utility hardships.

SSI has received criticism in recent years however, due to an increase in the number of children receiving benefits, and the share of children receiving benefits on the basis of mental health issues.  At the hearing, the Government Accountability Office reported preliminary findings that the increase in the child SSI caseload can be explained by a myriad of factors including "SSA's and child advocates' outreach efforts, improved access to health insurance for children, the rising number of children living in poverty, and increased diagnosis of certain mental impairments."  

The hearing grew heated at times, but members agreed on key points, including that SSI is a critical support for families of disabled children, but SSA needs to review the eligibility of approved cases more frequently.  Members also agreed that youth receiving SSI need better supports to help them transition into employment and economic security as adults.

As Congress considers the future of this program, it must consider how to fix the flaws in this program without putting extremely vulnerable children at risk.



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