One of our goals here at AKALAKA is to help sibling caregivers of artists, musicians, athletes, academics, entrepreneurs (AKA “individuals”) living with intellectual and developmental disabilities (I/DD) understand the complexities of disability services. If you become an AKALAKA member and participate in our introductory class, you will receive detailed lessons on how to navigate Medicaid’s Home and Community-Based Services (HCBS) waiver program. For now, we want to provide you with a brief overview of what HCBS are and how they can improve the lives of those with I/DD.
The purpose of HCBS is to allow eligible individuals to receive a variety of caregiving and medical services in their homes and communities rather than in institutions. HCBS are typically available for older adults and those with disabilities, illnesses, and substance use disorders (“Home and Community-Based Services”). We will be focusing specifically on how HCBS apply to those with I/DD.
Decades of research and court cases formed the Medicaid waiver program that allows states to provide HCBS within broad federal guidelines. During the majority of the 20th century, individuals with I/DD lived in Medicaid-funded institutions. However, researchers found that at least one third of these individuals could have lived at home if they had supportive services available in their communities (Duckett 123). That finding, combined with advocates bringing nationwide reports of dissatisfaction, neglect and abuse in institutions to the forefront, spurred federal legislators to direct funding towards homes and communities. In 1983, Congress added section 1915(c) to the Social Security Act. This allowed for individuals with I/DD to receive up to seven medical services in their homes instead of in institutions. These services included case management, homemaker, health aide, personal care, adult day care, habilitation, and respite care (“Home and Community-Based Services 1915(c)”).
HCBS are not exactly the same in every state within the U.S. While the federal agency, Centers for Medicare and Medicaid Services (CMS), partners with states to oversee Medicaid administration, the states themselves determine who is eligible for coverage and what types of services are available. Today, 47 governments, including Washington, D.C., have at least one 1915(c) waiver (“Home and Community Based Services Authorities”). States with a 1915(c) waiver must meet 4 requirements: 1) Provide waiver services that will not cost more than services in an institution. 2) Protect people’s health and welfare. 3) Ensure that provider standards meet the needs of the target population. 4) Follow an individualized and person-centered plan of care for 1915(c) services. Beyond these requirements, states can, at their own discretion, determine where the services can be applied within the state, which groups are eligible for the services, and how a person’s income factors into eligibility (“Home and Community-Based Services 1915(c)”). For example, someone who would typically be eligible for Medicaid if they were living in an institution can still receive HCBS, as long as the state allows it.
There have been 17 broad categories of services that HCBS has covered: case management, round-the-clock services, supported employment, day services, nursing, home delivered meals, rent and food expenses for live-in caregiver, home-based services, caregiver support, other mental health and behavioral services, other health and therapeutic services, services supporting self-direction, participant training, equipment/technology/modifications, non-medical transportation, community transition services, and other services (“Medicaid HCBS Taxonomy Category”). As you can see, the health of caregivers has not been left out of the picture. If you have not yet tapped into caregiver support services, you may want to contact your sibling’s case manager to determine what support you could receive!
We know that all of this information can be complicated and confusing. We encourage you to search online for information about your state’s 1915(c) waiver. A good starting place is Medicaid’s State Waivers List, which provides descriptions for each state’s waiver programs.
AKALAKA created a resource here for you to explore the various services your family may request for support. If you have questions about HCBS, please reach out to hi@akalaka.org or join our community of support and resources.
Duckett, Mary Jean and Mary R. Guy. “Home and Community-Based Services Waiver.” Health Care Financing Review, vol. 22, no. 1, 2000, pp. 123-125, https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4194688/. Accessed 12 December 2021.
“Home and Community Based Services.” Medicaid, Centers for Medicare & Medicaid Services, https://www.medicaid.gov/medicaid/home-community-based-services/index.html. Accessed 12 December 2021.
“Home and Community-Based Services 1915(c).” Medicaid, Centers for Medicare & Medicaid Services, https://www.medicaid.gov/medicaid/home-community-based-services/home-community-based-services-authorities/home-community-based-services-1915c/index.html. Accessed 12 December 2021.
“Home and Community Based Services Authorities.” Medicaid, Centers for Medicare & Medicaid Services, https://www.medicaid.gov/medicaid/home-community-based-services/home-community-based-services-authorities/index.html. Accessed 12 December 2021.
“Medicaid Home and Community-Based Services (HCBS) Taxonomy Category and Subcategory Definitions.” Medicaid, Centers for Medicare & Medicaid Services, 28 February 2014, https://wms-mmdl.cms.gov/WMS/help/TaxonomyCategoryDefinitions.pdf.