Medicaid and HIV

Key Facts

  • Medicaid is the largest source of insurance coverage for people with HIV, estimated to cover 42% of the adult population, compared to just 13% of the adult population overall.1,2
  • The number of Medicaid beneficiaries with HIV has grown over time as people with HIV are living longer and new infections continue to occur.3,4 In 2013, there were 282,100 beneficiaries with HIV compared to 212,900 in 2007, a 33% increase. The expansion of the program under the Affordable Care Act (ACA) has also increased coverage for people with HIV.
  • Medicaid spending on HIV accounts for 30% of all federal spending on HIV care and it is the second largest source of public financing for HIV care in the U.S.5 Spending has increased over time, reflecting growing numbers of beneficiaries with HIV and the rising cost of care.
  • Medicaid beneficiaries with HIV are more likely to be male, Black, dually eligible for Medicare and to qualify based on disability, compared to beneficiaries overall.
  • Medicaid covers a broad range of services, many of which are important for people with HIV and those at risk, including prescription drugs, inpatient and outpatient care, and preventive services.

Overview

Medicaid, the largest public health insurance program in the United States, covering health and long-term care services for 73 million low-income individuals, has played a critical role in HIV care since the epidemic began.6,7 It is the single largest source of coverage for people with HIV in the U.S., and its role has grown over time as people with HIV are living longer, new infections continue to occur, and the program was expanded under the Affordable Care Act (ACA).8,9 Medicaid is estimated to cover 42% of adults with HIV.10 By comparison, just 13% of adults in the general population are covered by the program.11 (See Figure 1.)

Figure 1: Insurance Coverage Among People with HIV and the General Population, 2017

Medicaid Beneficiaries with HIV

In 2013, there were approximately 282,100 Medicaid beneficiaries with HIV, compared to 212,900 in 2007 (a 33% increase).12 This number higher today due in part to the ACA’s Medicaid expansion, which has been a key factor in recent coverage gains among people with HIV.13 While Medicaid is a significant source of coverage for beneficiaries with HIV, this group represents less than 1% of the overall Medicaid population. The demographics of Medicaid enrollees with HIV vary significantly from the demographics of the Medicaid population overall:

  • Medicaid beneficiaries with HIV are more likely to be male (56% vs. 42%), Black (50% vs. 22%), and between the ages of 45-64 (54% vs. 13%) than the Medicaid population overall.14
  • A significant share (30%) are dually eligible for both Medicaid and Medicare, compared to just 15% of the Medicaid population as a whole; dual eligibles are among the most chronically ill and costly Medicaid enrollees, with many having multiple chronic conditions and requiring long-term care.
  • Beneficiaries with HIV also have a higher prevalence of certain co-morbidities:
    • Fourteen percent (14%) have a hepatitis diagnosis compared to just 1% of the general Medicaid population.
    • Half (48%) have a mental health or substance use disorder diagnosis compared to 19% of the general Medicaid population (see Figure 2).

Figure 2: Diagnosis of Substance Use Disorders (SUD) & Mental Health (MH) Conditions Among Medicaid Beneficiaries, by HIV Status, 2013

Medicaid Eligibility for People with HIV

Most Medicaid beneficiaries with HIV (65% in 2013) qualify for coverage through a disability pathway, compared to just 15% of the Medicaid population overall.15 The remaining share qualify through multiple other mandatory and optional pathways (see Table 1).

Prior to the ACA, to qualify for Medicaid an enrollee had to be both low income and “categorically eligible,” such as being a person with a disability or pregnant. This presented a “catch-22” for many low-income people with HIV who could not qualify for Medicaid until they were already quite sick and disabled, despite the fact that early access to treatment could help stave off disability and significantly improve health outcomes.

The ACA sought to fundamentally change this by requiring states to expand their Medicaid programs to nearly all individuals with incomes at or below 138 percent of poverty ($17,236 for an individual in 2019).16 However, a 2012 Supreme Court ruling on the constitutionality of the ACA effectively made expansion a state option.17 As of July 2019, 36 states and Washington, D.C. have adopted the ACA Medicaid expansion, where two thirds (64%) of people with HIV live. Fourteen states have not expanded their programs, where 36% of people with HIV live, most of whom are in Florida and Texas.18

Table 1: Medicaid Eligibility Pathways for People with HIV
Category Criteria Mandatory / Optional
SSI Beneficiaries States must generally provide Medicaid to those receiving Supplemental Security Income (SSI) benefits; some states elect the Section 209(b) option to use more restrictive eligibility criteria. To be eligible for SSI, beneficiaries must have low incomes (about 73% of the federal poverty level [FPL]), limited assets, and a significant disability. Generally mandatory, though as of 2018, 8 are more restrictive Section 209(b) states.
Children States required to cover children <19 up to 138% FPL; all states currently cover up to higher incomes, (upper limits ranging from 175% FPL in ND to 405% FPL in NY). Mandatory
Pregnant Women States required to cover pregnant women up to 138% FPL; most cover at higher limits with a median eligibility level of 205% FPL in 2019 Mandatory
Parent/Caretaker Relatives States are required to provide coverage to certain parents (known as Section 1931 parents). States that have expanded Medicaid fulfill that requirement. States that have not offer coverage at income thresholds ranging from 17% FPL (TX) to 100% FPL (WI) in 2019. In addition, three expansion states offer coverage above the ACA expansion level (IN, CT, & DC). Mandatory for Section 1931 parents with state option to expand beyond federal income minimum.
Low-income Adults ACA expansion group for adults under 65 years old up to 138% FPL, regardless of disability status. Mandated by ACA; effectively state option due to SCOTUS ruling.

(37 states offer coverage, 14 do not as of July 2019)

Seniors and Persons with Disabilities up to 100% FPL State option to provide Medicaid to seniors and people with disabilities whose income exceeds SSI limits, up to 100% FPL. Optional (21 states in 2018)
Medically Needy (MN) State option to extend Medicaid to those who meet categorical eligibility, such as disability status, but need to “spend down” by incurring medical expenses to meet state’s income criteria. Optional

(34 states as of 2018)

Buy-in for Working People with Disabilities State option to provide Medicaid to working individuals with disabilities at higher income/asset limits. Limits and income related premiums/cost-sharing vary by state (median 250% FPL in 2015). Optional

(45 States as of 2018)

SOURCES: Kaiser Family Foundation. State Health Facts. https://www.kff.org/state-category/medicaid-chip/; Musumeci, M., et al. Kaiser Family Foundation. Medicaid Financial Eligibility for Seniors and People with Disabilities: Findings from a 50-state Survey, 2019.  https://www.kff.org/medicaid/issue-brief/medicaid-financial-eligibility-for-seniors-and-people-with-disabilities-findings-from-a-50-state-survey/

Medicaid Spending on HIV

Medicaid is a means-tested entitlement program, jointly financed by the federal and state governments. In the traditional (non-expansion) program, the federal government matches state Medicaid spending at rates ranging from 50% to 77% (using a formula based on state per capita income).19 Under the ACA, the federal match for the expansion population is higher. It began at 100% in 2014, and is phasing down to 90% in 2020 and thereafter.

In FY 2019, federal Medicaid spending on HIV is estimated to total $6.3 billion, accounting for 30% of all federal spending on HIV care and representing the second largest source of public financing for HIV care in the U.S, after Medicare (see Figure 3).20 In addition, the states’ share of Medicaid spending on HIV was estimated to be an additional $3.8 billion in FY 2019.21 Medicaid spending on HIV has increased over time, reflecting growing numbers of beneficiaries with HIV and the rising cost of care and treatment. Between 2013 and 2019, federal Medicaid spending on HIV increased by 60%, rising from $3.97 billion to $6.3 billion.22 Still, in FY 2019 federal Medicaid spending on HIV represents less than 2% of total federal Medicaid spending.

Figure 3: Federal Funding for HIV/AIDS Care in the U.S., by Program, FY 2019

Medicaid beneficiaries with HIV have different spending patterns than beneficiaries overall, and spending on HIV treatment, due to the high cost of HIV medications, has an outsized impact on the program:23,24

  • Average annual per capita spending on Medicaid beneficiaries with HIV was $23,551 in 2013, about four times that of Medicaid beneficiaries overall ($5,871).25,26
  • While less than half of one percent of Medicaid beneficiaries have HIV, 8% of all Medicaid drug spending is on antiretrovirals (the drugs used to treat and prevent HIV).27

Medicaid Benefits

Medicaid covers a broad range of services, many of which are important for people with HIV and those at risk. Medicaid benefits are offered on a fee-for-service basis, through capitated managed care organizations (MCOs), or through a combination of these benefit designs.28

In some cases, people with HIV may not have access to all the health services needed to stay healthy through Medicaid alone and rely on supplemental coverage from other payers or programs, including the Medicare program for those who are dually eligible and the Ryan White HIV/AIDS Program, the federal grant program for people with HIV who are uninsured and underinsured.

While most states that have expanded their Medicaid programs have fully aligned the benefits in their traditional program with the benefits for the expansion population, there are technically different requirements between the two, with potential implications for HIV care and prevention.

Though many states elect not to impose any, states are permitted to require “nominal” cost-sharing by some groups of beneficiaries; other groups and services are exempt altogether.

Traditional Medicaid Programs

Under traditional Medicaid, states must cover certain mandatory services, specified in federal law, in order to receive federal matching funds, though they have some flexibility in determining the scope of services.29 (See Table 2.)

Table 2: Traditional Medicaid Service Categories
Required Services Include:30

  • inpatient & outpatient hospital services
  • physician and nurse practitioner services
  • laboratory services
  • nursing facility services
  • family planning, among others
Optional Services Include:31

  • prescription drugs (a benefit that all states cover)
  • dental care
  • personal care services
  • rehabilitation services
  • home and community based care, among others

In addition to the above, traditional Medicaid programs also cover preventive services including ones that are important to people with HIV:

  • Programs must cover “medically necessary” HIV testing (i.e. indicated due to risk) and may cover routine HIV testing (screening regardless of risk). As of 2015, 42 states and DC report covering routine HIV testing while eight only cover medically necessary testing.32,33
  • States must also cover pre-exposure prophylaxis (PrEP), the drug used to prevent HIV among those at increased risk.
  • Under the ACA, states are incentivized to cover a full suite of preventive services, including routine HIV testing and PrEP (starting in 2021), without cost-sharing in exchange for a 1% increase in the federally matching rate for those services.34 As of June 2019, 15 states have approval from CMS for this increase in exchange for offering these services without cost-sharing.3536

Medicaid Expansion Programs

Most enrollees who gain access to Medicaid through the ACA expansion receive the same benefits as traditional enrollees. However, there are technical differences and expansion enrollees must receive services that fall into the ACA’s ten “essential health benefit” (EHB) categories, many of which are important for HIV care (see Table 3):

Table 3:  Essential Health Benefit Categories
  • Ambulatory patient services
  • Emergency services
  • Hospitalization
  • Maternity and newborn care
  • Prescription drugs
  • Rehabilitative and habilitative services
  • Laboratory services
  • Preventive services and chronic disease management
  • Pediatric services
  • Mental health and substance use disorder services

Benefits within these categories are largely defined through a state-based benchmarking process using a plan of the state’s choosing from federally mandated options or from an alternative plan through a waiver. Most states have used a waiver to select the traditional state Medicaid plan as the benchmark and align traditional and expansion benefits.37 Preventive services are unique in that they are specifically defined to include services receiving an “A” or “B” rating from the United States Preventive Services Task Force (USPSTF), including routine HIV screening and PrEP, which must be offered without cost-sharing.

Medicaid Health Homes

The ACA also gave states a new option to provide Medicaid health home services to enrollees with chronic conditions (and receive a temporary enhanced federal match of 90% for the first two program years). Health homes encompass a range of services designed to help manage care for those who are chronically ill, such as comprehensive care management and care coordination. The law named several chronic conditions that could be targeted for health homes, and CMS considers others, including HIV, for states pursuing this option. As of March 2019, 38 health homes had been approved in 23 states and the District of Columbia. Among these, four states (WA, AL, MI, and NC) included HIV among other qualifying conditions for enrollment into the health home and one state, Wisconsin, designed a health home specifically targeted at beneficiaries with HIV/AIDS.38

Waivers

States also have the ability to seek waivers from certain Medicaid requirements. With approval from the federal government, states are permitted to use Section 1115 Medicaid demonstration waivers to experiment with approaches to delivering program benefits in ways that differ from what is allowed under statute, and could impact people with HIV. While waivers are not new to the program, under the Trump administration, CMS has certified waivers that have not been permitted by prior administrations, including those predicating Medicaid benefits on work requirements. Other recent waivers allow for purchasing of marketplace health plans for the expansion population, increasing cost-sharing, providing additional benefits or offering benefits to new populations (e.g., substance use treatment, family planning, etc.), and transforming how care is delivered or paid for.

States also have the option to apply for a “home and community-based services (HCBS)” waiver. Medicaid HCBS waiver authorities include Sec. 1915 (c) and Sec. 1115, both of which allow states to expand financial eligibility and offer HCBS to seniors and people with disabilities who would otherwise qualify for an institutional level of care. HCBS waivers have been important for people with HIV and are used by several states to serve this population. As of 2017, 10 states had an HCBS designed specifically for or to include people with HIV, serving over ten thousand people with HIV.39,40

Future Outlook

As the single largest source of health coverage for people with HIV, Medicaid has played a significant role for this population since the HIV epidemic began and its role has continued to grow. In particular, many low income people with HIV who could not previously qualify for Medicaid because they did not meet categorical eligibility criteria, such as disability, have gained access under the ACA. Going forward, it will be important to continue to monitor the impact of Medicaid coverage on people with and at risk for HIV, particularly given that several states are still deciding whether to expand their programs. In addition, assessing the impact of waivers will be important as states seek to offer coverage with different eligibility requirements than has previously been permitted. Early research has shown that some demonstrations, such as work requirements, may increase churn in the program, which could have particularly significant consequences for people who rely on access to care and treatment for survival.41 In addition, in order to harness the benefits of “treatment as prevention” (i.e. when someone with HIV has an undetectable viral load, achieved through use of antiretroviral treatment, HIV cannot be transmitted), it is important to ensure that people with HIV can remain in coverage and engage in care and treatment.

Endnotes
  1. Centers for Disease Control and Prevention. Behavioral. Medical Monitoring Project, United States, 2017 Cycle.

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  2. Kaiser Family Foundation analysis of American Community Survey data, 2017.

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  3. Kaiser Family Foundation. State Health Facts. Medicaid Enrollment and Spending on HIV/AIDS. (FY07-FY11). http://kff.org/hivaids/state-indicator/enrollment-spending-on-hiv/.

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  4. Kates, J. and Dawson, L. Kaiser Family Foundation. Insurance Coverage Changes for People with HIV Under the ACA. 2017. https://www.kff.org/health-reform/issue-brief/insurance-coverage-changes-for-people-with-hiv-under-the-aca/.

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  5. Kaiser Family Foundation. U.S. Federal Funding for HIV/AIDS: Trends Over Time. March 2019. https://www.kff.org/hivaids/fact-sheet/u-s-federal-funding-for-hivaids-trends-over-time/.

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  6. CMS. March 2019 Medicaid & CHIP Enrollment Data Highlights. https://www.medicaid.gov/medicaid/program-information/medicaid-and-chip-enrollment-data/report-highlights/index.html.

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  7. Kaiser Family Foundation. State Health Facts. Total Monthly Medicaid and CHIP Enrollment. December 2018. https://www.kff.org/health-reform/state-indicator/total-monthly-medicaid-and-chip-enrollment/?currentTimeframe=0&sortModel=%7B%22colId%22:%22Location%22,%22sort%22:%22asc%22%7D.

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  8. Kaiser Family Foundation. State Health Facts. Medicaid Enrollment and Spending on HIV/AIDS. (FY07-FY11). http://kff.org/health-reform/state-indicator-enrollment-spending-on-hiv.

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  9. See current status of state Medicaid expansion decisions: http://kff.org/health-reform/state-indicator/state-activity-around-expanding-medicaid-under-the-affordable-care-act/

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  10. Centers for Disease Control and Prevention. Behavioral. Medical Monitoring Project, United States, 2017 Cycle.

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  11. Kaiser Family Foundation analysis of American Community Survey data, 2017.

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  12. Kaiser Family Foundation analysis of Medicaid Statistical Information System (MSIS) data, 2007-2013.

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  13. Kates, J. and Dawson, L. Kaiser Family Foundation. Insurance Coverage Changes for People with HIV Under the ACA. 2017. https://www.kff.org/health-reform/issue-brief/insurance-coverage-changes-for-people-with-hiv-under-the-aca/.

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  14. Kaiser Family Foundation analysis of Medicaid Statistical Information System (MSIS) data, 2013.

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  15. Kaiser Family Foundation analysis of Medicaid Statistical Information System (MSIS) data, 2013.

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  16. U.S. Department of Health and Human Services, Office of The Assistant Secretary for Planning and Evaluation, 2019 Poverty Guidelines. Available at: https://aspe.hhs.gov/poverty-guidelines.

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  17. Kaiser Family Foundation. A Guide to the Supreme Court’s Affordable Care Act Decision. 2012. Available at: http://kff.org/health-reform/issue-brief/a-guide-to-the-supreme-courts-affordable/.

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  18. Kaiser Family Foundation. State Health Facts. Status of State Action on the Medicaid Expansion Decision. http://kff.org/health-reform/state-indicator/state-activity-around-expanding-medicaid-under-the-affordable-care-act; Kaiser analysis of data from State Health Facts and the CDC Atlas.

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  19. Kaiser Family Foundation. State Health Facts. Federal Medical Assistance Percentage (FMAP) for Medicaid and Multiplier. http://kff.org/medicaid/state-indicator/federal-matching-rate-and-multiplier/.

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  20. Kaiser Family Foundation. U.S. Federal Funding for HIV/AIDS: Trends Over Time. http://kff.org/global-health-policy/fact-sheet/u-s-federal-funding-for-hivaids-trends-over-time/.

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  21. Kaiser Family Foundation CMS correspondence.

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  22. Kaiser Family Foundation analysis of budget data provided by CMS via a special data request.

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  23. All spending detailed in this section is for fee-for-service Medicaid only.

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  24. Per person drug spending is calculated based on data from FFS beneficiaries only as the numerator and all beneficiaries as the denominator due to limitations with MSIS.

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  25. Kaiser Family Foundation analysis of Medicaid Statistical Information System (MSIS) data, 2013.

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  26. Kaiser Family Foundation analysis of Medicaid Statistical Information System (MSIS) data, 2013.

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  27. Young, K. Kaiser Family Foundation. Utilization and Spending Trends in Medicaid Outpatient Prescription Drugs. 2019. https://www.kff.org/medicaid/issue-brief/utilization-and-spending-trends-in-medicaid-outpatient-prescription-drugs/.

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  28. Recognizing the high cost of drugs, especially those used for treating certain conditions, such as HIV, some states “carve-out” prescription drug benefits from these plans, instead using their fee-for-service program to deliver this benefit. Of the 38 states that deliver some care through MCOs, 5 (CO, GA, MT, TN, WV) carve-out all prescription drugs and 4 (CA, MD, MI, and DC) specifically carve-out antiretrovirals used to treat HIV. See CMS. “Medicaid Drug Utilization Review State Comparison/Summary Report FFY 2017 Annual Report Prescription Drug Fee-For-Service Programs”. October 2018. https://www.medicaid.gov/medicaid/prescription-drugs/downloads/drug-utilization-review/2017-dur-summary-report.pdf.

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  29. CMS. Mandatory and Optional Medicaid Benefits. https://www.medicaid.gov/medicaid/benefits/list-of-benefits/index.html

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  30. Kaiser Family Foundation. Medicaid Moving Forward. 2015. http://kff.org/health-reform/issue-brief/medicaid-moving-forward/.

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  31. Kaiser Family Foundation. Medicaid Moving Forward. 2015. http://kff.org/health-reform/issue-brief/medicaid-moving-forward/.

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  32. AL, FL, GA, ME, MS, NE, SD, and VA.

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  33. Kaiser Family Foundation. HIV testing in the U.S. June 2019. https://www.kff.org/hivaids/fact-sheet/hiv-testing-in-the-united-states/.

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  34. Kaiser Family Foundation. HIV Testing in the United States, 2016. http://kff.org/hivaids/fact-sheet/hiv-testing-in-the-united-states/.

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  35. CA, CO, DE, HI, KY, LA, MT, NH, NJ, NV, NY, OH, OR, WA and WI.

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  36. Kaiser Family Foundation personal communication with CMS.

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  37. Baumrucker, E. Congressional Research Service. Medicaid Alternative Benefit Plan Coverage: Frequently Asked Questions. R45412. November 26, 2018. https://www.everycrsreport.com/reports/R45412.html.

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  38. CMS. State-by-State Health Home State Plan Amendment Matrix. March 2019. https://www.medicaid.gov/state-resource-center/medicaid-state-technical-assistance/health-home-information-resource-center/downloads/state-hh-spa-at-a-glance-matrix.pdf.

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  39. Musumeci, M. and Watts, M. Kaiser Family Foundation. Key State Policy Choices About Medicaid Home and Community-Based Services. 2019. http://files.kff.org/attachment/Issue-Brief-Key-State-Policy-Choices-About-Medicaid-Home-and-Community-Based-Services.

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  40. Musumeci, M., Chidambaram, P. and Watts, M. Kaiser Family Foundation. Medicaid Home and Community-Based Services Enrollment and Spending. 2019. https://www.kff.org/medicaid/issue-brief/medicaid-home-and-community-based-services-enrollment-and-spending/.

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  41. See for example: Rudowitz, R., M., Musumeci , and C., Hall. Kaiser Family Foundation. State Data for Medicaid Work Requirements in Arkansas. 2019. https://www.kff.org/medicaid/issue-brief/state-data-for-medicaid-work-requirements-in-arkansas/.

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