For Families of Disabled Kids, a Little Help Goes a Long Way

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When her son was born with a severe disability, a mother quit her job to become his full-time caregiver. Soon after, her marriage began to suffer. Her husband wanted another child, she didn’t. He wanted sex; she was too tired. Afraid he would abuse their son in frustration, she never left the two alone together. Now she was worried her husband was going to leave. Though he only earned minimum wage, she simply could not afford to let him go. 

Brown University professor Dennis Hogan presented this real-life story at a recent discussion at the Center for American Progress in Washington, D.C., to illustrate how raising a child with a disability can adversely impact a family’s emotional and economic well-being – especially those families already living near the poverty level. “The effects are really pervasive,” Hogan said. 

Typically, Hogan said, one parent drops out of the workforce in order to take care of the child and shuttle him to medical appointments, household income falls, food becomes more scarce, exhaustion kicks in, divorce rates rise and birth rates fall. In such instances, supplemental income provided by the government – at a maximum rate of $698 a month in 2012 -- plays an important role in replacing some of the family’s lost earnings, ensuring that children with disabilities get enough to eat, the therapy they need, and the chance to grow into productive members of society, panelists said.

Signed into law by President Richard Nixon, the Supplemental Security Income program celebrates its 40th anniversary this year. It provides financial assistance to 1.3 million children who meet strict requirements for family income and severity of disability. The program was designed to help families in a multi-pronged way, said Philadelphia attorney Rebecca Vallas: to meet the additional costs of raising a disabled child; to replace some of the income lost when a parent gives up a job or remains under-employed to provide care; to pay for food, clothing and shelter; and to create a more secure environment for disabled children to integrate into family and community life. 

An increase in income by just $3,000 a year results in these children making better progress in school, said LaDonna Pavetti, vice president for family income support policy at the Center on Budget and Policy Priorities. “That really continues into adulthood. They work more hours and they have more earnings.”

Vallas also stressed that research has upheld the effectiveness of the program. “SSI has been shown to reduce poverty and to increase economic security among children with disabilities as well as their families,” she said. “Studies show it’s not just a short-term increase in economic security, but a long-term reduction in poverty as well.” 

Some 40 years ago, it was socially acceptable for families to send children with disabilities to institutions that would care for them for the rest of their lives, according to a new report by the Center for American Progress, Maintaining and Strengthening Supplemental Security Income for Children with Disabilities. That model has been driven to near extinction by changing social attitudes and federal legislation like the Americans with Disabilities Act, the Individuals with Disabilities Education Act, and government assistance like SSI, which encourage children with disabilities to be integrated with mainstream kids.

The public expectation now is that families will care for their kids at home, and the SSI program is a cost-effective way to provide such care, Vallas said. A large, state-run institution can cost $16,000 or more a month, she said, compared to the $600 or so provided to a family every month to allow them to nurture their child at home. 

When the legislation creating SSI was under consideration, the House Ways and Means Committee said in a report: “Disabled children who live in low-income households are certainly among the most disadvantaged of all Americans and … they are deserving of special assistance in order to help them become self-supporting members of society.” 

By contrast, the budget resolution passed by House Republicans this year cuts benefits to families who have more than one disabled child, as if there are “economies of scale” at play when caring for disabilities, Pavetti said. Although the country faces financial challenges, the budget deficit should not be balanced “on the backs” of disadvantaged families, she said. 

Vallas agreed. “The early rational for SSI remains even stronger today than when it was signed into law in the ‘70s,” she said. “Medical advances have enabled more children with significant disabilities to not just survive into young adulthood but to have a chance at being independent adults.”

The report by the Center for American Progress recommends the SSI program improve access to vocational training and other employment opportunities to help youth with disabilities transition to the workplace more easily after they age out of SSI at 21. 

Establishing an independent income is particularly important for disabled youth, Pavetti said, as their income levels lag behind their mainstream peers’.

“These investments that we make in kids have incredibly long payoffs,” Pavetti said.