MDA Transitions Survey Results

Survey confirms importance of family caregivers to adults with muscle disease

Article Highlights:
  • The MDA National Transitions Survey results show that more comprehensive supports and resources are needed both for family caregivers and for adults with muscle disease who desire more independent living options.
  • About 65 million people nationwide provide ongoing care for a family member or friend, and of those, 44 million are unpaid.
  • MDA's Advocacy office is working with policymakers to help reduce the existing hurdles for individuals living with muscle disease.
by Annie Kennedy on October 1, 2011 - 10:37am

QUEST Vol. 18, No. 4

In the recent National Transitions Survey conducted by MDA of our young adult and adult communities, 40 percent of respondents said their daily physical care assistance was provided by family caregivers; 41 percent indicated the majority of their transportation needs are met by a parent, spouse or family caregiver; and 26 percent included family financial support among their primary sources of financial funding.

While this is unlikely to be surprising for members of our MDA community, it does underscore a significant need for more comprehensive supports and resources both for family caregivers and for adults desiring more independent living options.

According to a survey conducted by the National Alliance for Caregiving in 2009, more than 29 percent of the U.S. population — 65 million people — provided ongoing care for a family member or friend. Of those, 44.4 million were not paid for this care and approximately 60 percent worked outside the home while providing care.

Among the policy issues currently being focused on by MDA are those with a direct impact on young adults and adults living with neuromuscular disease and their loved ones and caregivers.

On September 23, 2011, MDA hosted a day of dialogue with policymakers and community partners to discuss opportunities for improving federal and state resources, and to explore strategies for clearing away existing hurdles for individuals diagnosed with neuromuscular disease. Discussion highlights — as well as the MDA Transitions Action Plan that resulted from the discussion — will be posted soon on MDA’s Advocacy site.

To stay informed about opportunities to get involved in these efforts, as well as to receive advocacy updates, please register as an MDA Advocate today.

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