State-level Medicaid 1915(c) home and community-based services waiver support for caregivers


      • Caregivers are performing complex nursing care procedures for care recipients.
      • Caregivers experience unintended consequences due to their role.
      • State-level Medicaid waivers can offer supportive services for caregivers.
      • State-based Medicaid waiver services for caregivers vary widely.
      • Knowledge of caregiver supports informs evidence-based policy advocacy.



      Informal caregivers encounter emotional distress, worsening personal health, and financial strain. The Medicaid 1915(c) Home and Community-Based Services (HCBS) waiver programs provide an array of services including support for caregivers.


      This policy analysis examined Medicaid waiver services offered to persons 65 and older among the 50 states and District of Columbia (DC).


      Data were obtained from Medicaid waiver applications for adults age 65 and older available at Data elements included number of waiver programs and services for supporting caregivers. Descriptive statistics were applied.


      Forty-three states including DC (84%) offered a Medicaid waiver for older adults; seven states (14%) offer two waiver programs; eight states (16%) had no Medicaid waiver. Payment to a relative or legal guardian caregiver was the most common service offered in 39 (76%) states. Other services included in-home respite care and adult day health care (35 states; 67%), out-of-home respite care (32 states; 63%), skilled nursing (28 states; 55%), paid spousal caregivers (18 states; 35%), caregiver training (15 states; 29%), and adult day care for socialization (7 states, 14%).


      This study identifies wide variability in caregiver support across state-based Medicaid waivers. Future research should evaluate effectiveness of the waiver programs in supporting caregivers and inform evidence-based policy advocacy for supporting caregivers.


      To read this article in full you will need to make a payment

      Purchase one-time access:

      Academic & Personal: 24 hour online accessCorporate R&D Professionals: 24 hour online access
      One-time access price info
      • For academic or personal research use, select 'Academic and Personal'
      • For corporate R&D use, select 'Corporate R&D Professionals'


      Subscribe to Nursing Outlook
      Already a print subscriber? Claim online access
      Already an online subscriber? Sign in
      Institutional Access: Sign in to ScienceDirect


        • American Association of Retired Persons [AARP] and National Alliance for Caregiving [NAC]
        Caregiving in the United States 2020.
        AARP, 2020
        • Barnett A.E.
        Adult child caregiver health trajectories and the impact of multiple roles over time.
        Research on Aging. 2015; 37: 227-252
      1. Centers for Medicare & Medicaid Services. (n.d.-a). Program History.

      2. Centers for Medicare & Medicaid Services. (n.d.-b). How is Medicare funded?

      3. Centers for Medicare & Medicaid Services. (n.d.-c). Eligibility.

      4. Centers for Medicare & Medicaid Services. (n.d.-d). Home & Community-Based Services 1915(c).

      5. Centers for Medicare & Medicaid Services. (n.d.-e). State Waivers List.

      6. Centers for Medicare & Medicaid Services. (n.d.-f). CAHPS Home and Community Based Services Survey.

        • Dawson W.D.
        • Bangerter L.
        • Splaine M.
        The politics of caregiving: Taking stock of state-level policies to support family caregivers.
        Public Policy & Aging Report. 2020; 30: 62-66
        • Mast M.E.
        To use or not to use: A literature review of factors that influence family caregivers’ use of support services.
        Journal of Gerontological Nursing. 2013; 39: 20-28
        • Miller C.
        • Kapp S.
        Family carers and wound care—Integrative review.
        Journal of Wound Care. 2015; 24: 489-497
        • Moorman S.M.
        • Macdonald C.
        Medically complex home care and caregiver strain.
        The Gerontologist. 2012; 53: 407-417
        • Musemeci M.
        • O'Malley Watts M.
        • Chidambaram P.
        Key State Policy Choices About Medicaid Home and Community-Based Services.
        (February 4) Medicaid, 2020
        • National Academies of Sciences, Engineering, and Medicine
        Schulz R. Eden J. Families Caring for an Aging America. National Academies Press, 2016: 23606
        • National Academies of Sciences, Engineering, and Medicine
        The Future of Nursing 2020-2030: Charting a Path to Achieve Health Equity. The National Academies Press, Washington, D.C.2021
        • National Alliance for Caregiving, & AARP Public Policy Institute
        Executive Summary: Caregiving in the U.S.
        AARP Research, 2015
      7. Reinhard, S., Young, H. M., Levine, C., Kelly, K., Choula, R. B., & Accius, J. C. (2019). Home alone revisited: Family caregivers providing complex care (pp. S747–S748).

        • Reinhard S.C.
        • Levine C.
        • Samis S.
        Home alone: Family caregivers providing complex chronic care.
        American Association of Retired Persons, 2012: 50
        • Rose M.S.
        • Noelker L.S.
        • Kagan J.
        Improving policies for caregiver respite services.
        The Gerontologist. 2015; 55: 302-308
        • Sabo K.
        • Chin E.
        Self-care needs and practices for the older adult caregiver: An integrative review.
        Geriatric Nursing. 2021; 42: 570-581
        • Sörensen S.
        • Duberstein P.
        • Gill D.
        • Pinquart M.
        Dementia care: Mental health effects, intervention strategies, and clinical implications.
        The Lancet Neurology. 2006; 5: 961-973
        • Wang M.-S.
        • Wu C.-F.
        Assisting caregivers with frail elderly in alleviating financial hardships.
        Social Work in Public Health. 2018; 33: 396-406
        • Watts M.O.
        • Musemeci M.
        • Chidambaram P.
        State variation in medicaid LTSS policy choices and implications for upcoming policy debates—Issue brief.
        Medicaid. 2021;