Summary
The National Strategy to Support Family Caregivers is a call to action to improve supports for the more than 63 million people within the United States providing informal, usually unpaid, care and support to aging family members and people of all ages with disabilities. The addition of family caregiving questions to the American Community Survey (ACS) would provide critical new data, at state and local geographic levels, on an ongoing basis to help inform implementation of the National Strategy, revisions, and other caregiving policies at the federal, state, and local levels.
The Recognize, Assist, Include, Support, & Engage (RAISE) Family Caregivers Act and implementation of the National Strategy provide an overarching statutory and policy basis for the addition of caregiver questions to the ACS. The U.S. Department of Health and Human Services (HHS) is charged with implementing the RAISE Act. The Secretary of HHS has designated implementation of the National Strategy to the Administration for Community Living. The Secretary in coordination with the designated agency overseeing the National Strategy could take the first step in this process by making a formal request for the addition of a caregiving question. This brief helps provide the rational, initial ideas for proposed questions, and value of adding questions.
The ACS question addition process is lengthy. However, much groundwork has already been laid that could be leveraged to help facilitate this process. The infrastructure of the RAISE Council and technical assistance entities assisting with implementation could assist the Census Bureau with question development and cognitive testing across the broad range of family caregivers. Instead of reinventing the wheel, the Census Bureau could closely coordinate with other federal agencies that administer surveys with established caregiving questions, such as CDC and the National Center for Health Statistics. This would not only help expedite the process, but also promote standardization and harmonization on a core set of questions across surveys in line with recommendations in the National Strategy.