Abt Associates
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ABSTRACT
This survey was developed to better understand how informal caregivers of non-elderly people with disabilities and chronic health conditions successfully assist their loved ones when they do not receive substantial support from the formal disability system. Informal caregivers of people with disabilities often provide medical, behavioral, financial, and other daily supports beyond what most families provide. Yet, for those that do not interact with HHS programs, their needs, challenges and successes are poorly understood. By surveying this population, HHS can gain an understanding that may help the agency better design programs to help individuals avoid extensive services, or to better serve individuals who do require assistance. The survey questions span six domains: (1) caregiving responsibilities; (2) needs of care recipients and caregivers; (3) experience with the formal system; (4) compensation strategies; (5) expectations and planning towards the future; and (6) demographics.
DISCLAIMER: The opinions and views expressed in this report are those of the authors. They do not necessarily reflect the views of the Department of Health and Human Services, the contractor or any other funding organization.