Published in the Spring 2007 issue of SSA Magazine

Future Tense

711,000: Intellectually disabled citizens that live with caregivers who are older than age 60.

What looms ahead for intellectually disabled people and their aging caregivers

by Harold Pollack

Americans with intellectual disabilities have made great progress towards full citizenship. Long shunned by local schools, children with intellectual disabilities have won the right to appropriate education at public expense. Once marginalized from workplaces and other aspects of common life, they have achieved legislation such as the Americans with Disabilities Act which symbolize and enforce inclusion. Mass media, once dominated by fearful or freakish imagery, now often depict intellectually disabled people as valuable and productive citizens. Once excluded from medical and social services, people with intellectual disabilities enjoy broad access to cash aid and other services: Inflation-adjusted public spending for people with intellectual disability has been rising 10 percent annually for 25 years and enjoys broad support.

Perhaps most striking has been in support for family care. In 1960, the birth of an intellectually disabled child was seen as a private tragedy. Parents were expected to care for the child as best they could, for as long as they could, or they placed the child into institutional care. Professionals typically advised the latter course. Periodic exposes revealed appalling conditions in state homes for the retarded and similar facilities. Yet in the absence of feasible alternatives, many parents saw institutionalization as the only available choice.

By the 1970s, however, the advent of Supplemental Security Income and the emergence of community services gave families real choices. Millions of people who might have been institutionalized in an earlier era came to live with their parents or in group homes, achieving higher functioning and better quality of life than was previously thought possible.

Growing Older

These achievements deserve celebration. Yet they left key vulnerabilities unaddressed. One serious problem arises from the sharply improved health of intellectually disabled people. Fifty years ago, infants born with intellectual disabilities typically died quite young due to cardiac defects and other morbidities. Over time, however, medical innovations produced dramatic increases in longevity. By the 1970s, the majority of people with intellectual disabilities were adults. Today, many will outlive their parents or live long enough that their aged parents can no longer provide proper care in the family home. Census data indicate that 711,000 intellectually disabled people (including 30,000 in Illinois) live with family caregivers older than 60 years of age.

Growing numbers of families feature a physically challenged 75-year-old parent who cares for and often is helped by—an intellectually disabled son or daughter. Every year, tens of thousands of aged caregivers die, ending the only caregiving arrangement an intellectually disabled person has ever known.

Surprisingly little research has been done about how families address inexorable realities of human frailty and death. Available data indicate that many families are unprepared. Many parents lack an explicit plan. Many have neglected the mechanics of wills, changes in guardianship, special needs trusts, and similar matters. In many ways, public policies and interventions make this transition harder and more painful than it needs to be.

The essential challenge is to make residential services sufficiently attractive and available that families are able and willing to choose these options while they are still capable of providing care at home. When a parent can form lasting partnerships with professional caregivers, she is spared many fears about what will happen once she is gone. Her child is also spared, because the sadness of a parent's infirmity or death will not be compounded by a simultaneous and drastic life change.

Obstacles in Policy

How can public policies help families navigate this transition? One obstacle is simple denial. No one likes to face the prospect of one's death or infirmity, particularly when the prospect implies a frightening loss of control over the care of one's child. Public care systems miss many opportunities to engage families in addressing these concerns.

Greater difficulties are posed by social service systems, which often provide little reason for caregivers to seek help. Long waiting lists for basic services pose large barriers for many families. Almost 60,000 people nationally are now on waiting lists for residential services. Given such scarcity, states understandably prioritize emergency cases, thus undermining efforts to make smooth transitions before a crisis hits.

Parents also need practical help in monitoring available services. Movement to community-based services presents caregivers with a bewildering array of choices they are ill-equipped to make well. Across the country, residential care is provided through 140,000 providers. Few caregivers can scrutinize whether they are getting the right services. The professionals charged to help families navigate care systems may be equally unable to find the best option in such a system.

In the end, one must confront the bad experience many families have with public caregiving systems. Despite decades of progress, many families experience available services as unhelpful and, often, inaccessible and unwelcoming. Despite steady increases in funding, states provide sufficient resources to keep clients clean and safe, but not much more. Workers on the front lines of community-based care earn an average hourly wage of $8.68, with corrosive consequences for morale, professionalism, and skill. In failing to show a human face, we encourage caregivers themselves to turn away, to use services grudgingly, to try to ride things out in the family home.

Harold Pollack is an associate professor in the School of Social Service Administration and faculty chair of the Center for Health Administration Studies.