Finances and affordability of caregiving.

More than 51 million Americans have a disability. This represents nearly 20 percent of the U.S. population. Of Americans 65 and older, more than half have a disability. From a family perspective, nearly 29 percent of all American families (approximately 20.9 million) have at least one member with a disability. These numbers will only increase as people with life-long disabilities of all kinds continue to live longer, with the simultaneous increase in the number of people with age-related disabilities. This trend has significant public policy implications for state human service agencies.

Most people with a disability live at home and are cared for by their families. Some of these individuals will require significant supports their entire lives. The cost of family caregiving can be beyond the reach of millions of American families. Researchers have estimated that the overall daily living expenses for families with a child with a disability are 8 percent to 20 percent higher than their counterparts without a family member with a disability. Others have attempted to put a dollar figure on the increase and have estimated the out-of-pocket family costs for an individual with disabilities to be an extra $6,300 to $16,000 per year. However, few family caregivers are afforded a complete picture ahead of time of what the actual costs of care will be, and are unable to plan for the future as they would for other major life expenses, such as the purchase of a house or higher education.

Some of the supports and services states provide include direct payments to service providers that help families care for their relatives at home, pay for educational expenses and for specialized equipment. However, the levels of funding lag behind what is needed for the poorest families and families at the bottom half of annual earnings. Leading-edge support models allow people with disabilities and their families to control how funds allocated on their behalf are expended. This program design produces better outcomes.

The research supports what many families in a caregiving situation already know. In every state, families with members with disabilities are more likely than other families to have their economic prospects diminished. According to the U.S. Census, 29.2 percent of children with disabilities live in households with incomes below the federal poverty level, compared with only 17.3 percent of children who do not have disabilities. Only a fraction of public long-term spending has been directed towards family care. In 2004, 6 percent of community disabilities funding was allocated to family support services across the nation. This same year, only 22 states financed cash subsidy programs, with an average annual subsidy payment to a family equal to $2,853, well below the lowest estimate of the average cost of family care.

The financial strain of caring for a family member with a disability is not limited to low-income families. Middle-income families can also be challenged by the cost of disability and chronic illness and caregiving to the point of financial catastrophe.

In 2005, medical problem care costs contributed to at least half of all bankruptcies in the United States, and the average bankruptcy filer was a 41-year-old woman with children and at least some college education. Most of these debtors owned homes and were primarily classified as middle class by education and occupation. Medicaid and Supplemental Security Income were not originally designed for middle-income families, which places these caregivers in a precarious position. Not only do these families not qualify for medical assistance, but they are also a population not ordinarily in the system of support, Therefore, public outreach may be nonexistent at worst and awkward at best.

Providing public support and benefits to families that care for an individual with a disability is a policy-and-practice issue that affects a broad population across the income spectrum. Policy-makers must address the need of family caregivers across earning levels as well as be prepared to respond to the increasing demand for assistance as our nation's population ages.

The financial burden of caring for a family member with a disability is only one of the obstacles many family caregivers face on a daily basis. As program directors reach out and get to know these families better, many families will share the uncertainties of their lives--about whether their family member will ever get better or whether their caregiver responsibilities will prevent them from maintaining full-time employment. If asked why they have not reached out for public support, many will confide that they are just trying to get through each day, one at a time. Many of these families will express the fact that they do not need a stack of paperwork to fill out, or criticism for not knowing about the programs that have been available all along to provide assistance. They need real help and understanding. Our public policy must address these needs to strengthen American families.

Steven M. Eidelman is the Robert Edelsohn chair of Developmental Disabilities, co-director of the National Leadership Consortium on Developmental Disabilities, and professor in the College of Human Services, Education and Public Policy, University of Delaware. Tracy Davenport is a PhD student and research assistant at the University of Delaware focusing on the psycho-social aspects of illness and disability.