The Problem
As the shortage of paid caregivers grows, families are increasingly forced to fill the gap. Many family members are reducing work hours, leaving jobs, or taking on full-time caregiving responsibilities. At the same time, a growing number of caregivers are aging themselves. This unpaid labor—often invisible in policy and funding decisions—creates significant financial strain, stress, and uncertainty for families supporting people with disabilities.
Action
The Council, serving as a co-lead of a statewide cross-disability coalition, launched a statewide survey of people with disabilities and their families to document the scale and impact of unpaid caregiving. A total of 525 individuals responded, providing critical data on caregiving responsibilities, economic impacts, and unmet support needs. The Council helped design the survey, analyze findings, develop a fact sheet summarizing results, and coordinate a statewide press event to share the findings with policymakers, media, and state Medicaid leaders.
Results
Survey results are now being used to inform policy advocacy and systems change. The Council is working with partners to advance strategies that recognize and support family caregivers, including quantifying unpaid caregiving hours within HCBS service plans and increasing funding for respite services. The data has strengthened the coalition’s advocacy with state leaders and raised public awareness about the essential role family caregivers play in sustaining community-based services.
What Made the Council’s Role Unique
The Council led the effort from concept to impact—initiating the project, developing the survey, analyzing results, and coordinating a statewide media rollout—ensuring that the experiences of family caregivers directly inform policy solutions.