Key Questions About Medicaid Home and Community-Based Services Waiver Waiting Lists

Issue Brief
  1. Medicaid HCBS waiver authorities include Section 1915 (c) and Section 1115. For additional background on these authorities, see Kaiser Family Foundation, Streamlining Medicaid Home and Community-Based Services: Key Policy Questions (March 2016), https://www.kff.org/medicaid/issue-brief/streamlining-medicaid-home-and-community-based-services-key-policy-questions/.

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  2. This total reflects individuals on waiting lists in 39 of 40 states reporting waiting lists for Section 1915 (c) and/or Section 1115 HCBS waivers. It omits New York, which reports a waiting list for people with mental health disabilities but was unable to report the number of individuals on that list. It includes partial data for Alabama, which reported waiting list enrollment for seniors and adults with physical disabilities but reported enrollment on its waiting list for people with I/DD as unknown. It also includes partial data for California, which reported waiting list enrollment for its Section 1915 (c) waivers serving seniors and/or adults with physical disabilities and people with HIV/AIDS, but did not report enrollment on its Section 1115 waiting list for seniors and adults with physical disabilities. In addition, the following states did not respond to the question about whether there is a waiting list for the following target populations: Georgia for people with mental health disabilities, New Jersey for people with I/DD, New York for seniors and adults with physical disabilities and people with TBI/SCI, and Virginia for adults with physical disabilities.

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  3. Beginning in 2016, totals include Section 1915 (c) and Section 1115 HCBS waiver waiting lists; prior years include only Section 1915 (c) waiver waiting lists. Forty-eight states offer at least one Section 1915 (c) HCBS waiver; the remaining three (AZ, RI, and VT) serve all HCBS populations through Section 1115 waivers. Eight states (CA, DE, HI, NJ, NM, NY, TN, and TX) serve some HCBS populations through Section 1915 (c) waivers and others through Section 1115 waivers. For a timeline of when states began moving populations from Section 1915 (c) to Section 1115 waivers, see Kaiser Family Foundation, Medicaid Home and Community-Based Services Enrollment and Spending (April 2019), https://www.kff.org/medicaid/issue-brief/medicaid-home-and-community-based-services-enrollment-and-spending.

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  4. See supra., n.2.

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  5. See supra., n.3.

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  6. Each Section 1915 (c) waiver generally is targeted to a particular population, while a single Section 1115 waiver can include multiple populations, each of whom otherwise would have to be served under separate Section 1915 (c) waivers.

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  7. Kaiser Family Foundation, Medicaid Home and Community-Based Services Enrollment and Spending (April 2019), https://www.kff.org/medicaid/issue-brief/medicaid-home-and-community-based-services-enrollment-and-spending.

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  8. Total includes data reported by 27 of 40 states with waiver waiting lists. The other 13 states with waiver waiting lists were unable to report this data (AR, IL, KY, ME, MN, NV, NY, OH, OR, PA, TN, VA, and WI).

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  9. Thirty-seven of 51 states with waivers serving people with I/DD report waiting lists. Waiting list enrollment includes 36 states. The other state, Alabama, reports unknown enrollment on its waiting list for people with I/DD. In addition, New Jersey did not report whether it has a waiting list for people with I/DD.

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  10. Twenty of 51 states with waivers serving seniors and/or adults with physical disabilities report waiting lists. Waiting list enrollment reflects partial data for California, which reported waiting list enrollment for its Section 1915 (c) waivers serving seniors and/or adults with physical disabilities but was unable to report waiting list enrollment for its Section 1115 waiver serving these populations. In addition, New York did not report whether it has a waiting list for its Section 1115 waiver serving seniors and adults with physical disabilities. Virginia reported no waiting list for its waiver that serves both seniors and adults with physical disabilities but did not report whether it has a waiting list for another waiver for adults with physical disabilities.

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  11. Six of 18 states with waivers serving children who are medically fragile or technology dependent report a waiting list.

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  12. Eight of 25 states with waivers serving people with TBI/SCI report a waiting list. In addition, New York was unable to report whether its TBI/SCI waiver has a waiting list.

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  13. Four of 14 states with waivers serving people with mental health disabilities report a waiting list. Waiting list enrollment includes three states. The other state, New York, reports unknown enrollment on its waiting list for people with mental health disabilities. In addition, Georgia was unable to report whether its mental health waiver has a waiting list.

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  14. One of 10 states with waivers serving people with HIV/AIDS reports a waiting list.

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  15. Of the 40 states reporting one or more waivers with a waiting list in 2017, 27 reported average wait time for at least one waiver with a waiting list (AL, AK, AR, CA, CO, CT, FL, GA, IN, IA, KS, LA, MD, MI, MS, MT, NE, NV, NH, NM, NC, OK, OR, SD, TX, WV, and WY), and 13 (IL, KY, ME, MN, ND, NY, OH, PA, SC, TN, UT, VA, and WI) did not report average wait time for any waivers with waiting lists.

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  16. The exception is West Virginia.

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  17. Within a state, some waivers prioritize only one group, while other waivers may give priority to more than one group.

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  18. States implemented the ACA Medicaid expansion in January 2014, except for AK (9/2015), IN (2/2015), LA (7/2016), ME (1/2019), MI (4/2014), MT (1/2016), NH (8/2014), PA (1/2015), and VA (1/2019). ME and VA are counted as non-expansion states for the time period analyzed in this brief (2013-2017), as are ID, NE, and UT, which have adopted but not yet implemented expansion as of 2019. See generally Kaiser Family Foundation, Status of State Action on the Medicaid Expansion Decision (Feb. 13, 2019).

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  19. For additional background, see Kaiser Family Foundation, Streamlining Medicaid Home and Community-Based Services: Key Policy Questions (March 2016), https://www.kff.org/medicaid/issue-brief/streamlining-medicaid-home-and-community-based-services-key-policy-questions/.

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  20. In Olmstead, the Supreme Court held that the unjustified institutionalization of people with disabilities violates the Americans with Disabilities Act. Kaiser Family Foundation, Olmstead’s Role in Community Integration for People with Disabilities Under Medicaid: 15 Years After the Supreme Court’s Olmstead Decision (June 2014), https://www.kff.org/medicaid/issue-brief/olmsteads-role-in-community-integration-for-people-with-disabilities-under-medicaid-15-years-after-the-supreme-courts-olmstead-decision/; Kaiser Family Foundation, Medicaid Beneficiaries Who Need Home and Community-Based Services: Supporting Independent Living and Community Integration (March 2014), https://www.kff.org/medicaid/report/medicaid-beneficiaries-who-need-home-and-community-based-services-supporting-independent-living-and-community-integration/.

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  21. Previous analysis shows that nearly six in 10 (57%) nonelderly Medicaid adults have a disability but do not receive SSI benefits, meaning that they are eligible for Medicaid through another pathway, such as the Medicaid expansion in states that have adopted that pathway. Kaiser Family Foundation, How Might Medicaid Adults with Disabilities Be Affected by Work Requirements in Section 1115 Waiver Programs? (January 2018), https://www.kff.org/medicaid/issue-brief/how-might-medicaid-adults-with-disabilities-be-affected-by-work-requirements-in-section-1115-waiver-programs/.

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  22. Kaiser Family Foundation, The Affordable Care Act’s Impact on Medicaid Eligibility, Enrollment, and Benefits for People with Disabilities (April 2014), https://www.kff.org/health-reform/issue-brief/the-affordable-care-acts-impact-on-medicaid-eligibility-enrollment-and-benefits-for-people-with-disabilities/.

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  23. Most ACA expansion states opt to align their expansion adult benefit package with their traditional state plan benefit package, by offering all state plan services to expansion adults if medically necessary.

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  24. Kaiser Family Foundation, Key State Policy Choices About Medicaid Home and Community-Based Services (April 2019), https://www.kff.org/medicaid/issue-brief/key-state-policy-choices-about-medicaid-home-and-community-based-services.

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  25. These states include AK, IA, IL, KY, NE, OH, OK, TN, and TX.

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  26. Includes data reported by 28 of 40 states with waiver waiting lists. The 12 other states with waiver waiting lists were unable to report this data (GA, IL, KY, ME, MN, NM, OH, PA, TN, TX, VA and WY).

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  27. Medicaid finances 52% of long-term services and supports nationally in 2017. KFF estimates based on 2017 National Health Expenditure Accounts data from CMS, Office of the Actuary.

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