With more children diagnosed with chronic health conditions in recent years, Supplemental Security Income (SSI) has received increased attention from both Congress and the media. The SSI program for children was originally created to provide cash benefits to low-income families who have a child with a severe disability. Recent growth in the number of children served has led to concerns about the program’s size.
As pediatricians for over 30 years, we have treated hundreds of children, many with serious chronic health conditions, such as autism and spina bifida. We see parents struggling to provide a “normal” childhood in the midst of multiple doctor visits, specialty evaluations, and special therapies. Growing concerns about SSI ignore the fact that SSI for children is one of the best-suited programs to help respond to the rise in disability among children. If we want to help ease the burden of caring for children with chronic conditions – which disproportionately affects low-income families – a strong SSI program for children is essential.
Over the past half century the incidence of moderate to severe chronic conditions among children in the United States has increased fourfold to now include approximately 12 percent of all children. The SSI program also has expanded because of the much larger numbers of children with a widening variety of chronic conditions. In addition, following a Supreme Court decision in 1990, the Social Security Administration expanded the eligibility rules for children’s SSI benefits. This led to considerable growth in the program, which now includes 1.3 million children and youth.
The types of conditions that children enrolled in SSI have – including mental health and developmental conditions – generally reflect the wide range of conditions that exist in the general population. The SSI population, however, typically experiences more severe cases of these conditions.
Poor children are over 1.5 times more likely to have disabilities than non-poor children. Asthma, for example, occurs at higher rates and is often more severe among low-income children. Poorer children also have higher rates of many mental health and developmental conditions. National data put the rate of childhood disability at 11-12 percent for children in poor households, compared with just eight percent for kids in families with incomes over twice the federal poverty level. Yet fewer than two percent of U.S. children receive SSI benefits because the program limits eligibility to children with very severe disabilities.
Studies have consistently documented the increased costs of caring for children with disabilities, as well as how disabilities can take a bite out of household income. Many unreimbursed costs – irrespective of health insurance coverage – such as specialized diets, housing modifications, electricity for special equipment, and travel to specialized care providers, contribute to families’ financial burdens.
And parents often need to reduce or stop employment due to the care needs for their child, or forgo opportunities for higher-paying jobs because of limitations related to their child’s medical needs. Parents of children with a disability are at least 25 percent less likely to have a job outside the home than are other parents.
This combination of increased costs and lower income results in a greater need for financial support for families. The SSI program for children provides vital support to these families, even though the monthly cash benefit has a maximum of less than $600.
Although trends in childhood disability suggest that SSI should play a growing role as a lifeline for families, benefits are still hard for parents to claim. To receive SSI, parents and their providers (primary care, specialty, and often educational) must provide information to substantiate a claim. Ultimately, most children whose parents apply are denied SSI benefits, and those children who are approved typically have very severe disabilities.
The growth in the size of the program, the level of financial burden, and the number of children with chronic health conditions have drawn both congressional and media attention to the SSI program and its purpose. In the wake of this interest, some have voiced apprehension about the program. Concerns have included the problems of determining disability in very young children, the lack of disability reassessments as children mature, and whether or not children’s mental health conditions should be included in the program. Others have argued that SSI should be turned into a voucher system, rather than the current system of cash payments, with vouchers focused on health-related services.
These are the wrong responses. Any discussion about the SSI program for children should start by acknowledging that severe childhood disabilities have wide-ranging impacts, including very real financial burdens, on families. As a result, families need help with basic income needs, not just health-related services.
The SSI program provides a critical benefit for low-income families raising children with severe chronic health conditions. It is an important and necessary element of the safety net for these families who have major demands on their resources and time.To print a PDF version of this document, click here.James Perrin is a professor of pediatrics at Harvard Medical School and an associate chair of pediatrics at MassGeneral Hospital for Children. Ellen Perrin is a professor of pediatrics at Tufts Medical School and research director of the Division of Developmental-Behavioral Pediatrics at the Floating Hospital for Children at Tufts Medical Center.
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