Imagine that you are a middle-aged gas station manager with a worrisome health problem and a disabled child. Have you ever wondered how you would provide for that child in the event of your own death or disability? Now fast forward the tape. Have you ever been to the supermarket and spotted a balding man with Down syndrome pushing a shopping cart for his elderly mother? Have you ever wondered how he pays his medical bills or his rent?
In truth, no single or entirely comfortable answer exists to these questions. Intellectual disability is often accompanied by costly illnesses and social service needs. Even if someone spends his entire life in the house he grew up in, his family may eventually need public help to make ends meet. For many families, a little-known aspect of Social Security, awkwardly labeled the Disabled Adult Child program, makes a huge difference. I never thought much about this assistance until February 2004, when my mother-in-law suddenly died and we moved my wife’s intellectually disabled brother Vincent into our home. Moving him 700 miles from Oneonta, N.Y., to suburban Chicago was both a family crisis and a bureaucratic nightmare. His New York Medicaid suddenly wasn’t much use. His connections to local services were severed. There were forms to fill out, waiting lists to join, lawyerly letters to be written and more.
Exactly two things continued seamlessly: Vincent’s Social Security and Medicare benefits. If you pay Social Security taxes, you know that you earn credits toward your retirement benefits. You may not realize that you also have bought the largest life insurance and disability policy most Americans ever own. If you die or become disabled, your dependents will receive a monthly payment, indexed to the cost of living. Most child recipients receive such payments until adulthood. Those with severe and lasting disabilities receive these payments for their entire lives. In Social Security parlance, these latter recipients are considered “disabled adult children.”
About 921,000 men and women receive Social Security benefits as disabled adult children. Almost half, 430,000 people, are diagnosed with Down syndrome or other intellectual disabilities. Benefits are hardly lavish. Still, they can make the difference between poverty and self-sufficiency for hundreds of thousands of recipients. These benefits are important to caregivers, too. When my wife left the paid workforce to care for her brother, that Social Security check made a real difference. These same benefits now cover Vincent’s room and board at a modest group home a few miles from our family home.
As I ponder the quiet success of this program, four broad lessons stand out.
First, Social Security is a good deal. As late-night TV commercials might note, no medical examination is required, and you can never be turned down. People with preexisting conditions or with sick children pay no more than anyone else. By one 2001 calculation (updated for inflation), Social Security benefits are equivalent to a $496,000 life insurance policy, and a $434,000 disability insurance policy.
Second, such generosity is possible because Social Security is provided through effectively universal social insurance. Everyone is protected against unlikely but scary risks because no one can opt out from helping. To the uninformed public, such a requirement that everyone purchase insurance appears to infringe individual freedom. Actually, by allowing us to act collectively, this mandate allows us to protect each other from bad outcomes in life’s lottery that would crush any one family forced to bear that burden alone.
Third, the Disabled Adult Child program, like other aspects of American disability policy, was implemented by both Democrats and Republicans over many decades. Though hardly free of ideological conflict regarding the proper role of government, the politics of disability have been spared the worst partisan acrimony that disfigured our recent health care reform debate.
Consider this brief history: Disability insurance and related dependent coverage were added to Social Security during the Eisenhower years. Other key changes to Social Security were added in 1972. This Nixon-era legislation established Supplemental Security Income (SSI), a critical pillar to provide income security and health coverage to disabled Americans. Over time, Democrats such as Edward Kennedy and Hubert Humphrey worked effectively with Republicans such as Lowell Weicker and George H.W. Bush to enact the Americans with Disabilities Act and other key measures. Many politicians had children or siblings living with serious disabilities. Others, such as Robert Dole, brought very personal experiences of disability and rehabilitation.
Finally, programs such as the Disabled Adult Child program, admirable as they are, do not provide the economic and health security that people really need. Disabled men and women require diverse medical and social services that Medicare does not cover, or that Medicare covers only with punishing cost-sharing imposed on recipients.
These problems are especially acute in the arena of intellectual disability. Medicaid, not Medicare, finances most required services at the boundaries of health care, education, and social services. Families must therefore confront the many indignities and logistical challenges associated with means-tested public aid. This is not wise or humane social policy. During our current economic downturn, many people living with intellectual disabilities and their families are also enduring painful service cuts, as cash-strapped state and local governments are forced to trim important programs that serve the disability community.
Despite these limitations and challenges, this 75th anniversary year of the Social Security Act provides an opportunity to celebrate the ways America has opened its heart and its wallet to help our fellow citizens who live with physical or mental disabilities. We must build on this platform. We have a long way to go.