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Beyond 50.03: A Report to the Nation on Independent Living and Disability: Executive Summary

(5) Family support remains strong, but the impact of such trends as greater longevity, more women in the labor force, and greater geographic dispersion is now hitting home. Either in person or "at a distance," families are finding themselves with new roles as caregivers to aging parents, spouses or siblings, aging children with developmental disabilities, and other relatives and friends. Caregivers age 50 and older often experience considerable stress as a result of their caregiving roles.

Strong social support from families and friends can protect against functional decline and help individuals cope with functional decline if it occurs. While contact between persons 65 and older with disabilities and their families and friends remains strong, it has declined since the mid- 1980s.

Larger social trends are affecting the composition of families and their roles as caregivers, including the growing number of women in the workforce who must juggle work and caregiving responsibilities. Among 50- to 64-year-old caregivers, 60 percent are working full- or part-time. In addition, significant economic sacrifices during peak earning years are common among caregivers 50 and older who have been in the workforce.

Parents caring for aging children with cognitive and developmental disabilities represent a growing group in the older caregiver population. This trend reflects the emergence of two-generation families in which parents among the older or oldest age groups are caring for children who are in their 50s and 60s.

A preference for family assistance for help with everyday tasks is even stronger among persons 50 and older with disabilities than among persons 50 and older in the general population. This preference declines somewhat when 24-hour care is needed.

Policy Implication: Strengthen supports for family and other informal caregivers. As we have seen, families and other informal caregivers provide the overwhelming share of long-term supportive services for persons with disabilities. Their unpaid efforts consume substantial human resources and may result in serious stresses in the caregivers' own lives. Providing respite care, adult day care, and tax credits makes sense for both ethical and economic reasons. In addition, caregivers in the workplace need support, such as adequate family and medical leave.

(6) Inadequate health insurance is at the top of the list of problems experienced by persons with disabilities 50 and older, including those with Medicare coverage. In addition to gaps in coverage, such as the lack of coverage for prescription drugs, problems range from inappropriate care for chronic conditions to lack of coordination between medical care and long-term supportive services for persons with disabilities.

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