The Olmstead Act and Aging Parents of Adult Children with Disabilities: Important Considerations for Planners and Policy Makers

Background and Purpose:

More than 711,000 adults with disabilities live with a family caregiver aged 60 or older in the U.S.  Recent estimates show that one-third of all adults with disabilities over the age of 25 live in their parents’ households.  Three factors may affect this: 1) increased life expectancy of the general population that has been beneficial older adults as well as individuals with disabilities, 2) policies directed toward deinstutionalization, and 3) the lack of community resources for aging parents and adult children with disabilities who wish to live together.  Keeping individuals in least-restrictive environments is mandated by the Olmstead Act of 1999.

The research questions for this study addressed changes 10 years before and after the enactment of Olmstead:

1. How has the prevalence of these households changed, controlling for demographic characteristics?
2. What is the relationship between the health characteristics of aging parents and their adult children with disabilities?
3. What health-related services are used by these households?
4. How do demographic characteristics of these households predict health and service use?
5. Have the family demographic characteristics between caregiving and non-caregiving families (those who have utilized out of home placements) changed?
6. What changes in service utilization can be observed?

Methods:

The U.S. Census of Population (1990 to 2000) and American Community Survey (ACS) (2010) were used to examine the prevalence of older caregivers of adult children with disabilities.  The Survey of Income and Program Participation (SIPP) was used to examine changes in household service utilization prior to Olmstead and post-Olmstead using a longitudinal design with multiple panels.  Descriptive statistics were used to examine the individual and household characteristics for in-home versus out-of-home placements pre- and post-Olmstead.  Multinomial Regression models were used to estimate the effects of caring for a child with a disability on caregiver health/mental health, wealth, unsecured debt, hospitalization, emergency room visits, physician visits, out-of-home placement for adult caregivers and adult child with the disability.

Results:

Findings showed that 10 years prior to and after Olmstead the prevalence of these households increased steadily. Older parents who have disabilities are significantly more likely to have adult children with disabilities. Caregiving households are less likely to utilize physician visits, but rely more on hospitalizations, emergency room visits, and in-home supports.  Urban households utilize more in-home health and social services. Caregiving households had significantly higher unsecured debt and less wealth than households with out-of-home placements.  The use of health-related services was more pronounced after Olmstead.

Conclusions and Implications:

Findings showed the changing characteristics and needs of aging parents with disabled adult children 10 years prior to and 10 years following the passage of the 1999 Olmstead Act. Policy-makers and service providers will be better equipped to integrate aging and disability services that will bridge gaps across the continuum of care, ensuring the 1999 Olmstead Act mandate to provide least-restrictive alternatives to institutionalization. Future research might compare perceptions of quality of life of aging parents and their adult children with disabilities who are impacted by the Olmstead decision.