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Written by Dr. Sarah Anderson
Published on April 18, 2024
Research Highlights

Most patients who need home and community based care receive it through unpaid services.

Participants who hire family as caretakers have fewer service gaps and greater social connectedness and trust in the worker.

Most states allow caretakers to be paid through Medicaid if they meet certain criteria.

Most caretakers are unpaid.

Nationally, 7% of middle aged adults (estimated 2.9 million people) are caretakers for disabled or chronically ill family members (BLS 2021). On average, they spend 35 hours per week providing care.

Fifty percent of these caretakers care for their spouses, 25% care for their child (of any age), 15% care for a parent, and about 10% care for another kind of family member.

Compared to non-caretakers, caretakers are more likely to be women, Black or Latino, and have lower educational achievement. Caretakers are also more likely to live in poverty (23% vs 11%, respectively).

Among adults who have a caretaker but do not live in a nursing home or assisted living facility, 70% have unpaid caretakers (AARP 2020).

  • 33% of unpaid caretakers have no other assistance.
  • 31% of unpaid caretakers provide care with other unpaid caretakers only.
  • 14% of unpaid caretakers provide care with paid caretakers only.
  • 22% of unpaid caretakers provide care with paid and unpaid caretakers.


Self-directed services allow caretakers to be paid through Medicaid.

Long term service care assists individuals with activities of daily living such as eating, bathing, preparing meals, housekeeping, taking and managing medications, and more (KFF 2023). Home and community based services (HCBS), a component of long term service care, helps people live in their community and transition out of institutional settings (Medicaid a). Examples of HCBS include

  • Case management: a professional assesses the needs of the patient and develops and implements a service plan that coordinates resources and services for the patient (MO DHSS a)
  • Homemaker: performs household tasks such as cleaning, preparing meals, paying bills, running errands (MO DHSS 2021)
  • In home aide: focuses on the physical health of the patients by managing medications, assessing risk of hospitalization, helping prevent falls, communicate with clinicians, and more (MO DHSS b)
  • Adult day health services: patients receive care (e.g., medical care, physical therapy, counseling, education, recreation) and supervision in a facility during the day (MO DHSS c)
  • Respite care: service is provided to allow the caregiver time to do other activities but is not the primary form of care for the patient, this includes a home health aide coming to the patient’s home or the patient going to an adult day health facility (MO DHSS a)

Most long term service care, including HCBS, is paid through Medicaid (KFF 2022). Self-directed services (SDS) allow Medicaid participants or their representatives to choose who they hire for HCBS (Medicaid b). Individuals are responsible for hiring and firing, ensuring staff are qualified, training staff, confirming services were provided, and submitting receipts for items that replace human help (CMS 2015). The benefits of hiring family members include prevention of service gaps, increased trust in the worker, and enhanced social connectedness for participants (Caldwell 2022).


In MO, some caretakers are paid through Medicaid.

States administer SDS through home health or personal care Medicaid plans or through Medicaid waivers (Medicaid b). Nineteen states have Medicaid waivers that allow legal guardians to be paid for the care they provide if the Medicaid participant is physically, developmentally, or intellectually disabled (Figure 1).

MO has 11 Medicaid waivers that give various populations access to HCBS. Four of these waivers allow legal guardians to be paid for some of the care they provide. These four waivers are for people who are either aged or disabled. None of the waivers for people with intellectual or developmental disabilities allow legal guardians to be hired for HCBS.

  • The Adult Day Care Waiver and the Aged & Disabled Waiver do not prohibit legal guardians from being employed by the adult daycare facility where their charge is placed.
  • The Structured Family Caregiving Waiver allows legal guardians to adults 21 and over with Alzheimer’s or similar diseases to be paid for homemaker care services, attendant care services, medication oversight, and transportation to approved events (doctor's appointments, community activities).
  • The Medically Fragile Adults Waiver allows guardians to be paid for providing private duty nursing, which is when a registered nurse provides regular medical care for the patient and is employed to care only for the patient (UPenn).


Read our Science Note HCBS Workforce to learn about the paid workforce for HCBS.


Figure 1. States that allow legal guardians to be paid for providing care to people with physical disabilities (blue), intellectual/ developmental disabilities (IDD, yellow), or both (green). Data from KFF 2023 and Medicaid c.


Works Cited

AARP Family Caregiving and National Alliance for Caregiving. (2020). Caregiving in the U.S. Retrieved from AARP: https://www.aarp.org/content/dam/aarp/ppi/2020/05/full-report-caregiving-in-the-united-states.doi.10.26419-2Fppi.00103.001.pdf

Aughinbaugh, A., & Woods, R. (2021, March). Patterns of caregiving and work: evidence from two surveys. Retrieved from Bureau of Labor Statistics: https://www.bls.gov/opub/mlr/2021/article/patterns-of-caregiving-and-work-evidence-from-two-surveys.htm

Burns, A., Mohamed, M., & O'Malley Watts, M. (2023, September 19). Pandemic-Era Changes to Medicaid Home- and Community-Based Services (HCBS): A Closer Look at Family Caregiver Policies. Retrieved from KFF: https://www.kff.org/report-section/pandemic-era-changes-to-medicaid-home-and-community-based-services-hcbs-a-closer-look-at-family-caregiver-policies-appendix-tables/

Caldwell, J., Heyman, M., Atkins, M., et al., Experiences of individuals self-directing Medicaid Home and CommunityBased Services during COVID-19, Disability and Health Journal, https://doi.org/10.1016/j.dhjo.2022.101313 https://scholarworks.brandeis.edu/esploro/outputs/report/Experiences-of-individuals-self-directing-Medicaid-Home/9924110813801921/filesAndLinks?institution=01BRAND_INST&index=0

Centers for Medicare & Medicaid Services. (n.d.). Home and Community-Based Services 1915(c). Retrieved from Medicaid.gov: https://www.medicaid.gov/medicaid/home-community-based-services/home-community-based-services-authorities/home-community-based-services-1915c/index.html

Centers for Medicare & Medicaid Services. (n.d.). Self-Directed Services. Retrieved from Medicaid.gov: https://www.medicaid.gov/medicaid/long-term-services-supports/self-directed-services/index.html

Centers for Medicare & Medicaid Services. (n.d.). State Waivers List. Retrieved from Medicaid.gov: https://www.medicaid.gov/medicaid/section-1115-demo/demonstration-and-waiver-list/index.html?f%5B0%5D=waiver_authority_facet%3A1571%22%20%5Cl%20%22content#content#content

Chidambaram, P., & Burns, A. (2022, September 15). 10 Things About Long-Term Services and Supports (LTSS). Retrieved from KFF: https://www.kff.org/medicaid/issue-brief/10-things-about-long-term-services-and-supports-ltss/

Chidambaram, P., Burns, A., & Rudowitz, R. (2023, December 14). Who Uses Medicaid Long-Term Services and Supports? Retrieved from KFF: https://www.kff.org/medicaid/issue-brief/who-uses-medicaid-long-term-services-and-supports/

Department of Health and Human Servies and Center for Medicare & Medicaid Services. (2015, October). Self Directed Home and Community-Based Services: Understanding Your Role. Retrieved from Center for Medicare & Medicaid Services: https://www.cms.gov/files/document/hcbs-understand-role-self-dir-care-fs-102815pdf

Missouri Department of Health & Senior Services. (2021, November). Home and Community Based Services Policy Manual 3.45 Homemaker (Aged and Disable Waiver). Retrieved from Missouri Department of Health & Senior Services: https://health.mo.gov/seniors/hcbs/hcbsmanual/pdf/3.45.pdf

Missouri Department of Health & Senior Services. (n.d.). Adult Day Care. Retrieved from Missouri Department of Health & Senior Services: https://health.mo.gov/seniors/nursinghomes/adultdaycare.php

Missouri Department of Health & Senior Services. (n.d.). In-Home Quality Campaign. Retrieved from Missouri Department of Health & Senior Services: https://health.mo.gov/seniors/hcbs/qualitycampaign.php

Missouri Department of Health & Senior Services. (n.d.). Other Services Provided by the Area Agencies on Aging. Retrieved from Missouri Department of Health & Senior Services: https://health.mo.gov/seniors/aaa/other-services.php

University of Pennsylvania Penn Nursing. (n.d.). Private Duty Nursing. Retrieved from University of Pennsylvania Penn Nursing: https://www.nursing.upenn.edu/nhhc/workforce-issues/private-duty-nursing/

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