Abt Associates and Abt SRBI designed a survey for informal caregivers for individuals with disabilities. The work – for the Office of the Assistant Secretary for Planning and Evaluation (ASPE) in collaboration with the Administration for Community Living (ACL) – aims to better describe:

• The key characteristics of the caregiving that families and friends provide to people with disabilities under the age of 65;
• Demographic characteristics of these informal caregivers;
• Strategies used to provide supports outside of the formal disability system; and
• The assistance informal caregivers need to facilitate short- and long-term planning for a meaningful life for individuals with disabilities.

The Abt team conducted an environmental scan to review existing survey instruments in the field and develop an item bank of candidate questions, calculated detailed estimates of the prevalence of caregivers meeting the target respondent definition, analyzed potential sampling frames and administration modes, and drafted, cognitively tested and finalized the survey instrument itself.

Abt also developed a Paperwork Reduction Act (PRA) package for ASPE to submit in support of eventual survey implementation..