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Supporting Family Caregivers

By Carli Friedman, CQL Director of Research

Family members that provide unpaid care (also called informal support) play a key role in promoting people with intellectual and developmental disabilities’ (IDD’s) outcomes and community integration. Yet, family caregiving can be taxing, with many family caregivers having little support, feeling isolated, and incurring significant expenses.

Due to the important role family caregivers play, in Medicaid Home- and Community-Based Services (HCBS), states have the option to provide services to support family caregivers. For example, respite and family support services relieve family caregivers by providing short-term intermittent support. States also have the opportunity to provide training and counseling services for unpaid family caregivers in their HCBS programs. In addition to these specific services, states have the option to allow family members to be paid to provide HCBS services to people with IDD.

The aim of this study was to examine how states supported family caregivers using Medicaid HCBS. To do so, I analyzed fiscal year (FY) 2021 Medicaid HCBS 1915(c) waivers and Appendix K waivers serving people with IDD.

Services to Support Unpaid Family Members

In FY2021, almost all states (96%) offered respite services, about half (53%) offered family training and counseling services, and only two states (4%) offered family supports. In total $1.39 billion was projected for these services for 197,309 people with IDD. For example, 20% of people with IDD were projected to receive respite service to support their family caregivers.  

Family Services Offered in FY2021

Services Offered in FY2021. % of states offering: 95.6% respite, 4.4% family supports, 53.3% family training and counseling. % of people with IDD projected to receive: 20.3% respite, 1.6% family supports, 1.0% family training and counseling. % of total IDD HCBS Spending: 2.2% respite, 1.0% family supports, 0.02% family training and counseling.

Paying Family Caregivers to Provide Services

In addition to offering specific services, states also took advantage of a service delivery mechanism which permits them to pay family members to provide services. In FY2021, almost half (48%) of the services offered permitted family members, including parents, siblings, children, and other relatives of people with IDD, to be paid to provide these services to their loved ones. The services categories that most commonly permitted family members to be paid as providers were respite services, transportation services, supports to live in one’s own home (e.g., personal care, homemaker, companion), and residential habilitation.

Percent of Service Categories That Permitted Paying Family Providers

% of services that allow paying family to provide services: Education 0.0% Recreation and leisure 0.0% Self-advocacy training & mentorship 20.0% Care coordination 20.4% Financial support services 23.8% Specialized medical equipment & AT 24.5% Family services 26.1% Health and professional services 26.9% Individual goods & services 27.0% Adult day health 47.2% Community transition supports 49.3% Prevocational 50.0% Day habilitation 54.7% Supported employment 55.0% Residential habilitation 55.6% Supports to live in one's own home 78.4% Transportation 85.4% Respite 85.6%

How states offered the ability for family members to be paid to provide services differed significantly across the United States. For example, while none of Florida or South Dakota’s services allowed family members to service as providers, 100% of services in Idaho, 95% of services in California, and 94% of services in Ohio permitted paying family caregivers to provide services.

Percent of Services That Permitted Paying Family Providers by State

% of services permitting paid family care by state: Alabama 23% Alaska 94% Arkansas 69% California 95% Colorado 70% Connecticut 28% Delaware 33% District of Columbia 19% Florida 0% Georgia 32% Hawaii 45% Idaho 100% Illinois 18% Indiana 88% Iowa 70% Kansas 18% Kentucky 22% Louisiana 23% Maine 20% Maryland 37% Massachusetts 82% Michigan 43% Minnesota 3% Mississippi 12% Missouri 46% Montana 73% Nebraska 87% Nevada 55% New Hampshire 61% New Jersey 55% New Mexico 40% New York 34% North Dakota 54% Ohio 89% Oklahoma 58% Oregon 40% Pennsylvania 45% South Carolina 57% South Dakota 0% Tennessee 29% Texas 64% Utah 38% Virginia 58% Washington 74% West Virginia 20%


“Due to increased growth in HCBS, a fragmented Long-Term Services and Supports (LTSS) system, LTSS workforce shortages, and an aging population, the need for caregivers will only further intensify. Although unpaid family caregivers are a critically important resource, providing approximately $470 billion worth of unpaid care, stronger safety nets and supports are needed for informal caregivers… states should expand both the availability and the outreach for these mechanisms for family caregivers as these supports not only have the ability to reduce the challenges of family caregivers, but also, by extension, improve the outcomes of people with IDD” (Friedman, 2023, pp. 25-26).

This article is a summary of the following journal manuscript: Friedman, C. (2023). Supporting families: Formal HCBS supports for informal family caregivers of people with IDD. Journal of Developmental and Physical Disabilities.