Supporting Families: Formal HCBS Supports for Informal Family Caregivers of People with IDD

Unpaid (informal) family caregivers provide vitally important supports to people with intellectual and developmental disabilities (IDD), but receive little support or training. This study’s aim was to examine how states across the nation supported informal family caregivers in their Medicaid Home- and Community-Based Services (HCBS) programs for people with IDD. To do so, I examined fiscal year (FY) 2021 Medicaid HCBS 1915(c) IDD waivers to determine trends in how they allocated respite, family support services, and family training and counseling, and how they permitted paying family caregivers to provide services. HCBS waivers provided respite services to relieve unpaid caregivers, family support services to relieve caregivers and enhance family functioning, and family training and counseling services to strengthen caregiver abilities and self-efficacy. In FY2021, states projected spending $947.4 million on respite services for 174,406 people with IDD, $433.3 million on family support services for 14,159 people with IDD, and $9.3 million for family training and counseling services for 8,744 people with IDD. In addition, states also supported family caregivers by allowing them to be paid to provide certain HCBS services to their family members with IDD; 1,843 HCBS services, or approximately half of HCBS services in FY2021, allowed family members to be paid to provide services to people with IDD. Through integrated supports, states can maximize the quality of life of both people with IDD and their families.