State Policy Choices About Medicaid Home and Community-Based Services Amid the Pandemic
Issue Brief
Many, though not all, HCBS policies adopted under emergency authorities can be continued under regular program authorities. See CMS, State Health Official Letter #20-004, Planning for the Resumption of Normal State Medicaid, Children’s Health Insurance Program (CHIP), and Basic Health Program (BHP) Operations Upon Conclusion of the COVID-19 Public Health Emergency at p. 17 (Dec. 22, 2020), https://www.medicaid.gov/federal-policy-guidance/downloads/sho20004.pdf.
Due to the pandemic, KFF did not survey states in calendar year 2020, so this year’s survey also collected FY 2019 data to account for the missed year.
The four states that did not respond are the District of Columbia, Hawaii, Minnesota, and New Mexico. In certain areas, states’ previously reported data and supplemental research by KFF helped to calculate national totals.
Section 1115 HCBS waivers are included in our survey if the state does not have an accompanying Section 1915 (c) waiver.
Prior years’ data was used to supplement missing data for AR, CA, CT, DC, TX.
Findings in this section reflect waivers in all 50 states and DC. Prior years’ data was used to supplement missing data for states that did not submit complete survey responses, as indicated in the table notes.
AL, KS, and NC are excluded from this list because they have joint Section 1115/1915 (c) waivers, with HCBS authorized under Section 1915 (c). MI is excluded from this list because it has a Section 1115 waiver that operates concurrently with its Section 1915 (i) SPA. Additionally, our survey does not include new Section 1115 waivers in MN and VA approved in early 2020 (described further in the Capitated Managed Care section). We anticipate that these states will begin reporting data for the new waivers in our next survey.
However, RI’s most recent Section 1115 waiver renewal requires the state to transition HCBS authorized under Section 1115 to a Section 1915 (c) waiver or Section 1915 (i) state plan authority to the extent possible. The transition will take place over five years, from January 2019 through December 2023. CMS Special Terms and Conditions, Rhode Island Comprehensive Section 1115 Demonstration, #11-W-00242/1 at ¶ 32 (p. 35-36) (approval period Jan. 1, 2019-Dec. 31, 2023, amended Feb. 6, 2020), https://www.medicaid.gov/Medicaid-CHIP-Program-Information/By-Topics/Waivers/1115/downloads/ri/ri-global-consumer-choice-compact-ca.pdf. Rhode Island’s waiver renewal also provides that any new HCBS that the state wants to implement after January 1, 2019 must be authorized under Section 1915 (c) or Section 1915 (i). Id. at II (e), p. 13.
CA, DE, HI, NM, NY, TN, TX, and WA.
For the I/DD population, 45 states use only Section 1915 (c) waivers, four states (AZ, NJ, RI, and VT) use only Section 1115 waivers, and 2 states (NY and TN) use both waiver authorities.
For seniors and adults with physical disabilities, 39 states use only Section 1915 (c) waivers, nine states (AZ, DE, HI, NJ, NM, RI, TN, TX, and VT) use only Section 1115 waivers, and three states (CA, NY, and WA) use both waiver authorities.
Nearly all (21 of 25) states with TBI/SCI waivers use Section 1915 (c), while four (DE, RI, VT, and WA) use Section 1115. FL continues to serve people with TBI but consolidated its TBI waiver into its long-term care Section 1915 (c) waiver for seniors and people with physical disabilities in FY 2018. In addition, while it does not have eligibility criteria specific to people with TBI distinct from the criteria for adults with physical disabilities, the benefit package in NJ’s Section 1115 waiver includes services targeted to people with TBI.
Most (18 of 20) waivers that target children who are medically fragile or technology dependent are under Section 1915 (c), while two states (HI and RI) use Section 1115. States also may cover children with significant disabilities under the Katie Beckett/TEFRA state plan option. For more information, see KFF, Medicaid Financial Eligibility for Seniors and People with Disabilities: Findings from a 50-State Survey (June 2019), https://www.kff.org/medicaid/issue-brief/medicaid-financial-eligibility-for-seniors-and-people-with-disabilities-findings-from-a-50-state-survey/.
Most (11 of 14) mental health HCBS waiver states use only Section 1915 (c), while two states (DE and RI) use only Section 1115, and one state (WA) uses both waiver authorities.
Five of eight states using HCBS waivers to cover people with HIV/AIDS use Section 1915 (c) authority, while three states (DE, HI, and RI) use Section 1115 for this population. FL continues to serve people with HIV but consolidated its HIV waiver into its long-term care Section 1915 (c) waiver for seniors and people with physical disabilities in FY 2018.
MO reported this waiver as pending CMS approval, and it is not counted in our waiver total. CMS subsequently approved this waiver. MO Structured Family Caregiving Waiver, #1706.R00.00 (approved 9/7/21, effective 7/1/20), https://www.medicaid.gov/medicaid/section-1115-demo/demonstration-and-waiver-list/82356.
Findings in this section reflect waivers in all 50 states and DC. Prior years’ data was used to supplement missing data for CA, DC, GA, HI, MN, NM.
Sixteen waivers did not respond to this survey question.
46 waivers that require self-care needs did not respond to this question.
36 waivers that require household activity needs did not respond to this question.
Seven states (CA, DC, GA, HI, MN, NM, UT) did not respond to this question.
Prior years’ data was used to supplement missing data for AR, CA, CT, DC, TX.
42 C.F.R. § 441.510 (a), (b).
42 C.F.R. § 441.510 (d).
Prior years’ data was used to supplement missing data for CA, DC, HI, MN, and NM.
Prior years’ data was used to supplement missing data for CA, DC, HI, MN, and NM.
CT is one of a minority of states that elects the Section 209 (b) option, which allows states to use financial and functional eligibility criteria that differ from the federal SSI rules, as long as they are no more restrictive than the rules the state had in place in 1972.
CMS, Special Terms and Conditions, Washington State Medicaid Transformation Project, #11-W-00304/0 (approved Jan. 9, 2017-Dec. 31, 2022), https://www.medicaid.gov/Medicaid-CHIP-Program-Information/By-Topics/Waivers/1115/downloads/wa/wa-mtp-extension-ca.pdf. The benefit package includes caregiver assistance services, caregiver training and education, specialized medical equipment and supplies, health maintenance and therapy supports (including adult day health services and counseling), and personal assistance services (including personal care, transportation, home-delivered meals, and home modifications. Id. The transportation benefit is currently limited to transportation in conjunction with delivery of another covered benefit. WA has a pending wavier amendment that would expand the transportation benefit to including community events, regardless of whether they are in conjunction with delivery of another covered service, with a goal of increasing community access and decreasing social isolation. WA State Health Care Authority, Dep’t of Soc. and Health Servs., WA State Medicaid Transformation Project Section 1115 Demonstration Amendment Request at p. 6 (Jan. 15, 2021), https://www.medicaid.gov/medicaid/section-1115-demonstrations/downloads/wa-medicaid-transformation-pa4.pdf.
OR Health & Science Univ. Ctr. for Health Systems Effectiveness, Medicaid Transformation Project Evaluation Interim Report, prepared for WA State Health Care Auth. (Dec. 2020), https://www.medicaid.gov/medicaid/section-1115-demonstrations/downloads/wa-medicaid-transf-cms-approved-interim-evaluation-report.pdf.
CMS Special Terms and Conditions, MN 2020 System Reform Demonstration, No. 11-W-00286/5 (approved Feb. 2, 2020), https://www.medicaid.gov/Medicaid-CHIP-Program-Information/By-Topics/Waivers/1115/downloads/mn/mn-reform-2020-ca.pdf. The benefit package includes adult day services, family caregiver training and education, case management, chore services, companion services, consumer-directed community supports, home health services, home-delivered meals, homemaker services, environmental accessibility adaptations, nutrition services, personal care, respite, skilled and home care nursing, specialized equipment and supplies, non-medical transportation, tele-home care, and individual community living supports. Monthly service costs must not exceed 75% of the budget amount available for a person with similar assessed needs who is enrolled in MN’s Section 1915 (c) elderly care waiver. Id. This approval is not reflected in our survey total. We anticipate that the state will begin reporting data for this new waiver in our next survey.
Cost sharing is 5% of average monthly service costs for enrollees from 100-149% FPL, 15% for enrollees from 150-199% FPL, and 30% for enrollees at or above 200% FPL. Id.
OR Health Authority, Oregon Project Independence and Family Caregiver Assistance Program 1115 Demonstration Waiver Application (Nov. 1, 2021), https://www.medicaid.gov/medicaid/section-1115-demonstrations/downloads/or-1115s-projectindependence-application-pa.pdf. Enrollees would receive a limited benefit package of in-home supports or supports for people with family caregivers. Id.
The 12 states without any waiver waiting lists are AZ, DC, DE, HI, ID, MA, NJ, NY, RI, SD, VT, and WA. Prior years’ data was used to supplement missing data for CA, DC, HI, MN, and NM.
This total reflects individuals on waiting lists in 39 states reporting waiting lists for Section 1915 (c) and/or Section 1115 HCBS waivers. It includes partial FY 2018 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. FY 2018 data were also used for CT (children and adults with physical disabilities only), MN, NC (I/DD only), NH, and NM.
The 2018 total is revised, as of September 2021, based upon new waiting list totals in three waivers in Texas. The state attributes this change to improved reporting methodology. Additionally, Ohio (-66,500) and Louisiana (-31,000) reported large declines in waiting list numbers after adopting changes in their assessment policies. Both states instituted a new waiting list assessment tool for individuals in need of I/DD waiver services beginning in FY 2018. Ohio applied its new assessment tool to people on the waiting list prior to FY 2018 and anyone newly requesting waiver services. Based on the outcome of the assessment, individuals were either removed from the waiting list entirely (without receiving services), assigned a waiver slot, or were placed on a new waiting list. Louisiana applied its new assessment tool to people who were on its I/DD waiver waiting list to determine whether they require services now or in the near future to avoid institutionalization. Under the new policy, Louisiana offers waiver slots to people with the highest assessment score, and others are rescreened at regular intervals or upon request. The state does not consider these individuals to be on a waiting list for services.
Of the 39 states reporting one or more waivers with a waiting list, 29 reported average wait time for at least one waiver with a waiting list (AK, AR, CA, CO, CT, FL, IL, IN, IA, KS, KY, LA, MD, MI, MO, MS, MT, NE, NV, NC, ND, OK, OR, PA, SC, TX, WI, WV, and WY), and 10 (AL, GA, ME, MN, NH, NM, OH, TN, UT, VA) did not report average wait time for any waivers with waiting lists.
The five states that did not respond to this survey question are CA, GA, MN, NH, and NM.
Within a state, some waivers prioritize only one group, while other waivers may give priority to more than one group.
Within a state, some waivers may not have reserve capacity, while other waivers do. States with any reserve capacity in a waiver were counted in this total. Six waiting list states do not reserve capacity (IL, MI, NV, OH, OR, and UT) in any HCBS waivers. Five states did not respond to this survey question (CA, GA, MN, NH, and NM).
However, states can limit the number of people receiving Section 1915 (i) state plan services by restricting functional eligibility criteria for future beneficiaries if the number of people receiving services will exceed the state’s initial estimate.
Prior years’ data was used to supplement missing data for DC, GA, HI, MN, NH, NM, NY, and TX.
Prior years’ data was used to supplement missing data for DC, GA, HI, MN, NH, NM, NY, and TX.
Personal care services exclude skilled services that only may be performed by a health professional. CMS State Medicaid Manual § 4480, https://www.cms.gov/Regulations-and-Guidance/Guidance/Manuals/Paper-Based-Manuals-Items/CMS021927.html.
Id.
CFC enrollment in AK began in 2019.
CFC services include hands-on assistance, supervision or cueing, and services for the acquisition, maintenance, and enhancement of skills necessary for individuals to accomplish self-care, household activity, and health-related tasks. Health-related tasks are those that can be delegated by a licensed health care professional to be performed by an attendant.
Backup systems include electronic devices as well as individuals identified by the beneficiary to ensure continuity of services.
Transition costs may include rent and utility deposits, first month’s rent and utilities, bedding, basic kitchen supplies, and other required necessities.
These services may be covered to the extent that expenditures otherwise would be made for human assistance.
The remaining CFC states (AK, CA, MT, NY, TX) did not respond to this survey question.
Prior years’ data was used to supplement missing data for AR, CA, CT, DC, and TX.
AR did not respond to this survey question. Data were supplemented from state plan amendment #AR 18-0017, approved effective 3/1/19, https://www.medicaid.gov/sites/default/files/State-resource-center/Medicaid-State-Plan-Amendments/Downloads/AR/AR-18-017.pdf.
Five of 13 states did not respond to this survey question. The states that did not respond include AR, CA, CT, DC, and TX.
See Victoria Peebles and Alex Bohl, The HCBS Taxonomy: A New Language for Classifying Home and Community-Based Services, Medicare & Medicaid Research Review, vol. 4, no. 3 (CMS Office of Info. Products & Data Analytics, 2014), http://dx.doi.org/10.5600/mmrr.004.03.b01.
These findings include Section 1915 (c) and Section 1115 HCBS waivers. Section 1115 waiver services were assigned to the main population targeted by the waiver: seniors/adults with physical disabilities and/or people with I/DD. Prior years’ data was used to supplement missing data for CA, DC, HI, MN, and NM.
KFF, Premiums and Cost-Sharing in Medicaid (Feb. 2013), https://www.kff.org/medicaid/issue-brief/premiums-and-cost-sharing-in-medicaid/.
PETI rules apply to individuals are eligible for Medicaid by reason of a Section 1915 (c) HCBS waiver because they would be eligible under the Medicaid state plan if institutionalized, meet an institutional level of care, and would be institutionalized if not receiving waiver services. 42 U.S.C. § 1396a (a)(10)(A)(ii)(VI). They sometimes are referred to as the “217-group,” because they are described in 42 C.F.R. § 435.217.
42 C.F.R. § 435.726 (c).
CA, FL, GA, KS, ME, MS, SC, and VA.
Prior years’ data was used to supplement missing data for DC, GA, HI, MN, NH, NM, NY, and TX.
FL’s $2 copayment is per day, per provider, not per visit.
AK, AR, CA, CT, DE, GA, HI, ID, IL, IA, KS, KY, LA, MD, MA, MN, MO, NE, NJ, ND, OH, OK, OR, RI, SD, TN, TX, VT, VA, WA, and WI.
AZ, HI, IA, KY, LA, MD, MA, NJ, OK, OR, SD, TN, TX, WA, and WI.
CA and RI.
CMS Special Terms & Conditions, Alabama Community Waiver Program, No. 11-W-00358/6 (approved Oct. 21, 2021-Sept. 30, 2026), https://www.medicaid.gov/medicaid/section-1115-demonstrations/downloads/al-community-waiver-prog-ca.pdf.
Most states that use capitated managed care delivery systems for HCBS waiver services also use capitated managed care to deliver state plan HCBS. A small number of states report using capitated managed care to deliver state plan HCBS (primarily home health state plan services) but deliver HCBS waiver services on a FFS basis (data not shown).
CMS Special Terms and Conditions, Building and Transforming Coverage, Services, and Supports for a Healthier Virginia, No. 11-W-00297/3 (approved 1/1/20, amended 7/9/20) https://www.medicaid.gov/Medicaid-CHIP-Program-Information/By-Topics/Waivers/1115/downloads/va/va-gov-access-plan-gap-ca.pdf. This approval is not reflected in our survey total. We anticipate that the state will begin reporting data for this new waiver in our next survey.
These include a behavioral health need, two activity of daily living needs, or a complex physical health including developmental disability. Id.
These include homelessness or risk of homelessness, history of frequent or lengthy institutional stays or emergency room visits, criminal justice history, or history of housing loss due to behavioral health issues. Id.
These include unable to be gainfully employed for at least 90 consecutive days in past 12 months due to mental or physical impairment; unable to obtain or maintain employment due to age, physical/sensory disability or moderate to severe brain injury; more than one inpatient or outpatient SUD service in past two years; or at risk of mental illness and/or SUD deterioration including one or more of the following: persistent or chronic risk factors such as social isolation due to lack of family or social supports, poverty, criminal justice involvement or homelessness; mental illness or SUD care requires multiple provider types (behavioral health, primary care, LTSS, or other supportive services); past psychiatric history with ongoing treatment and supports necessary to ensure functional improvement; or dysfunction in role performance including one or more of the following: behaviors that disrupt employment or schooling or put employment at risk of termination or school suspension; history of multiple terminations from work or school suspensions/expulsions; cannot succeed in structured work or school setting without additional supports or accommodations; or performance significantly below expectation for cognitive/developmental level). Id.
Of the 50 states that allow self-direction in at least one waiver, 34 states provided the number of people who self-direct services (AL,CO, CT, DE, ID, IL, IN, IA, KS, KY, LA, MD, MA, MI, MS, MO, MT, NJ, NY, NC, ND, OH, OK, OR, PA, SC, SD, TN, UT, VT, VA, WV, WI, WY). The 16 states that allow self-direction but did not provide the number of people doing so are AZ, AR, CA, DC, FL, GA, HI, ME, MN, NE, NV, NH, NM, RI, TX, and WA.
Of the 37 states that offer the personal care state plan option, 19 allow self-direction. Twelve of the 19 states provided the number of people who self-direct services (CA, ID, ME, MA, MO, MT, NE, NJ, OK, UT, VT, and WA). The seven states that allow self-direction but did not provide the number of people doing so are AK, AR, MN, NV, NH, OR, and TX.
Other waiver target populations (children who are medically fragile or technology dependent, people with traumatic brain or spinal cord injuries, people with mental illness, and people with HIV/AIDS) account for a very small share (together about 1%) of people self-directing HCBS waiver services.
Prior years’ HCBS waiver data was used for CA, DC, HI, NM, and MN. Prior year’s HCBS state plan services data was used for DC, GA, HI, MN, NH, NM, NY, and TX.
Self-direction is a required part of the CFC benefit. Five CFC states (AK, CA, MD, OR, and WA) reported that they offer self-direction. The remaining CFC states (CT, MT, NY, TX) did not respond to this survey question.
The 32 states that allow legally responsible relatives to be paid providers for waiver services are AL, AK, AR, CO, DE, FL, HI, ID, IL, IN, KS, KY, ME, MD, MN, MO, MT, NH, NM, NC, ND, OH, OK, PA, SD, TN, UT, VT, VA, WV, WI, and WY. The 11 states that allow legally responsible relatives to be paid providers for personal care state plan services are AK, AR, CA, ID, IN, IA, MN, MT, NJ, OR, and VT.
A total of 39 states used Appendix K authority to temporarily permit payment for services rendered by family caregivers or legally responsible relatives in some or all Section 1915 (c) waivers, as of July 1, 2021. KFF, Medicaid Emergency Authority Tracker: Approved State Actions to Address COVID-19, https://www.kff.org/coronavirus-covid-19/issue-brief/medicaid-emergency-authority-tracker-approved-state-actions-to-address-covid-19/.
Prior years’ data was used to supplement missing data for CA, DC, HI, NM, and MN.
Prior years’ data was used to supplement missing data for DC, GA, HI, MN, NH, NM, NY, and TX.
The EVV requirement was part of the 21st Century Cures Act and applies to all personal care and home health services provided under state plan or waiver authority. Specifically, EVV applies to personal care services provided under Sections 1905 (a)(24), 1915 (c), 1915 (i), 1915 (j), 1915 (k), and Section 1115 and to home health services provided under 1905 (a)(7) or a waiver. 42 U.S.C. § 1396b (l)(5)(B) and (C).
The original legislation required states to comply with EVV requirements for personal care services by January 1, 2019, but subsequently was amended to extend the date to January 1, 2020. 21st Century Cures Act, § 12006, 130 STAT. 1033 (Dec. 13, 2016), https://www.govinfo.gov/content/pkg/PLAW-114publ255/pdf/PLAW-114publ255.pdf.
Effective January 1, 2021, a 0.5% FMAP reduction is applied to certain personal care services expenditures for states without compliant EVV systems.
42 U.S.C. § 1396b (l)(5)(A); see also CMCS Informational Bulletin, Electronic Visit Verification (May 16, 2018), https://www.medicaid.gov/federal-policy-guidance/downloads/cib051618.pdf; see generally Medicaid.gov, Electronic Visit Verification (EVV) (last accessed Jan. 21, 2022), https://www.medicaid.gov/medicaid/hcbs/guidance/electronic-visit-verification/index.html.
CMCS Informational Bulletin, Electronic Visit Verification (May 16, 2018), https://www.medicaid.gov/federal-policy-guidance/downloads/cib051618.pdf.
46 states responded to this survey question. The 5 states that did not are DC, GA, HI, MN, and NM.
42 C.F.R. § 447.204.
20 of 51 states responded to the survey question about reimbursement for home health agencies.
26 states responded to the survey question about reimbursement for registered nurses and 25 states responded to the question about reimbursement for home health aides.
22 of 37 states responded to the survey question about reimbursement for personal care providers.