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Caregivers Overwhelmed, Survey Reports

By Harry S. Margolis


The results of an on-line survey released by The Arc and the University of Minnesota’s Institute on Community Integration reports caregivers are overwhelmed by the demands of caring for loved ones. The Family & Individual Needs for Disability Supports (FINDS) Community Report is a bit skewed statistically both due to its on-line nature and its sponsorship by a disability, rather than an elder care organization, but its results are still quite instructive, if not surprising.

Stress on Caregivers

Here are some of the Report’s findings:

  • 80 percent of those who responded live with a family member with an intellectual or developmental disability.
  • More than half have no plan for what will happen if they no longer can provide care.
  • About a quarter are on waiting lists for government-funded services.
  • Most have had to reduce their work hours, turn down promotions or quit their jobs in order to care for loved ones.
  • Nine out of ten caregivers report being stressed with more than half of these are very or extremely stressed.
  • Caregivers provide an average of 57.4 hours of support a week with over half of caregivers of children providing more than 80 hours a week of care. Almost 40% of caregivers of adults also provide more than 80 hours of support a week.

What Would Help

When asked what kinds of support they do receive or would like to receive that would help them the most, respondents identified three primary needs:

  • Access to high-quality, affordable supports such as day programs, employment assistance, behavioral supports and both respite and long-term residential care.
  • Time for their own activities and for sleep.
  • Stable and long-term government-funded programs and financial assistance.

But No Help on the Horizon

In an article about the Report on the disabilityscoop website, Peter Berns, CEO of The Arc deplores the lack of support available for caregivers:

In every aspect of life — from education, to employment, to planning for a stable future — we as a society are failing in our support of caregivers of people with disabilities and falling short of our obligation to improve the quality of life of people with disabilities.

With the recent income tax cuts, the federal government has fewer, rather than more, resources available to provide the supports family caregivers need. State governments, hard pressed by increasing health care costs, cannot step into the breach. It’s hard to see how the situation for family caregivers will change without both a comprehensive policy of family supports and additional stable funding.

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