Improving Access to and Equity of Care for People with Serious Illness: A Workshop

1. Improving Access to and Equity of Care for People with Serious Illness: A Workshop Roundtable on Quality Care for People with Serious Illness Session 4 Diane Rowland, Sc.D. Executive Vice President, Kaiser Family Foundation

2. A Policy Agenda to Improve Access to Care and Achieve Health Equity for People with Serious Illness • Making Medicaid More Available • Making Medicare More Affordable • Addressing Disparities for Vulnerable Populations

3. Making Medicaid More Available • Increasing access to home and community-based services • Reducing variations across states • Facilitating integration of services • Closing the coverage gap for low income adults

4. Key areas to support equity and access for people with serious illness under Medicaid. • HCBS eligibility • Maintaining federal Medicaid matching funds with no pre-set limit and offering enhanced funds for states to cover HCBS. • Re-authorizing ACA Section 2404 to permanently apply the spousal impoverishment rules to HCBS. • Direct care workforce • Supporting states in implementing wage increases and workforce development strategies for direct care workers. • Housing supports • Reauthorizing the federal Money Follows the Person demonstration to offer housing-related services and staff to support people moving from nursing homes to the community. • Quality measures • Advancing the development of HCBS quality measures to monitor and evaluate progress in LTSS rebalancing, community integration, and beneficiary quality of life.

5. Most Medicaid HCBS are provided at state option. Mandatory Optional Waivers SOURCE: KFF Medicaid HCBS Program Surveys, FY 2017.

6. Most Medicaid eligibility pathways for seniors and people with disabilities are optional for states. Optional SOURCE: KFF Medicaid Financial Eligibility Survey for Seniors and People with Disabilities.

7. Most states are spending half or more of their Medicaid LTSS dollars in the community, as opposed to institutions. Share of total FY 2016 Medicaid LTSS spending devoted to HCBS: ME VT WA NH ND MT MN OR MA NY WI SD ID MI RI CT WY PA NJ IA OH NE DE IN IL NV MD CO WV UT VA CA* DC MO KS KY NC* TN SC OK AZ AR NM GA AL AK MS LA TX < 40% (5 states) FL 40% - 49% (15 states) HI 50% - 59% (19states) ≥ 60% (11 states) U.S. = 57% SOURCE: S. Eiken, K. Sredl, B. Burwell, and A. Amos, Medicaid Expenditures for Long-Term Services and Supports in FY 2016 (IBM Watson Health, May, 2018).

8. A majority of states deliver Medicaid long-term services and supports through capitated managed care as of 2019. ME VT WA NH ND MT MN OR MA NY WI SD ID MI RI CT WY PA NJ IA OH NE DE IN IL NV MD CO WV UT VA CA DC MO KS KY NC TN SC OK AZ AR NM GA AL AK MS LA TX FL HI Joint Section 1115/1915 (c) MLTSS waiver (1 state) Section 1115 MLTSS waiver (11 states) Another MLTSS authority (14 states) No MLTSS (24 states and DC) SOURCE: KFF analysis of waivers posted on Medicaid.gov.

9. State implementation of Medicaid managed long-term services and supports programs can be complex. States’ Objectives for MLTSS Integrate Physical, Behavioral Health, and LTSS Coordinate Care for Complex Populations Incentivize HCBS and Manage Costs Challenges in MLTSS Implementation Lack of Community Housing Setting Payment Rates Provider Engagement Workforce Shortages Selecting Quality Measures Person-Centered Planning

10. Uninsured Rate Among Nonelderly Individuals, 2017 Source: KFF analysis of 2017 American Community Survey, 1-Year Estimates.

11. Medicaid Income Eligibility Limits for Adults in States that Have Not Adopted the Medicaid Expansion, January 2019 Parents (Annual Income Limit for a Family of 3) Childless Adults (Annual Income Limit for an Individual) 138% FPL 138% FPL SOURCE: Based on results from a national survey conducted by KFF and Georgetown University Center for Children and Families.

12. Making Medicare More Affordable • Capping catastrophic coverage for Part D • Broadening supplemental coverage through Medicaid • Providing options for high cost/high need populations • Filling benefit gaps

13. The Medicare Part D standard benefit design has no annual limit on out-of-pocket costs Total drug costs: Benefit phase: Catastrophic Coverage 5% 15% 80% $8,140 total /$5,100 out of pocket BRAND-NAME DRUGS: 70%: Manufacturer discount 25%: Enrollee share 5%: Plan share GENERIC DRUGS 37%: Enrollee share 63%: Plan share Coverage Gap $3,820 Initial Coverage 25% 75% $415 100% Deductible SOURCE: KFF, An Overview of the Medicare Part D Prescription Drug Benefit.

14. Nearly 1 in 10 Medicare Part D enrollees had drug spending above the catastrophic coverage threshold in 2016, most of whom received low-income subsidies—but 1 million did not Total Part D enrollment, 2016: 43.0 million SOURCE: KFF analysis of a 5% sample of 2016 Medicare prescription drug event claims from CMS Chronic Conditions Data Warehouse.

15. Medicare Part D enrollees can pay thousands of dollars out of pocket for specialty tier drugs, with the majority of costs for many drugs above the catastrophic threshold Expected Annual Out-of-Pocket Costs in 2019 for Selected Specialty Tier Drugs in Medicare Part D TOTAL median out-of-pocket cost ABOVE catastrophic threshold BELOW catastrophic threshold SOURCE: KFF, The Out-of-Pocket Cost Burden for Specialty Drugs in Medicare Part D in 2019.

16. Nearly 1 in 5 traditional Medicare beneficiaries, or 6.1 million people, have no supplemental coverage 30% Employer-sponsored insurance 29% Medigap 22% Medicaid 1% Other coverage 19% No supplemental coverage 2016 Total = 32.4 million traditional Medicare beneficiaries SOURCE: KFF analysis of Centers for Medicare & Medicaid Services 2016 Medicare Current Beneficiary Survey.

17. Questions remain about how well Medicare Advantage plans are serving high-cost, high-need people • Dual eligibles and Medicare beneficiaries with significant needs are more likely to disenroll from Medicare Advantage plans • Little is known about how well plans (including Special Needs Plans) serve those with serious illnesses • High disenrollment rates could be due to narrow networks, restrictions on care, high cost-sharing for needed services, or all of the above • People who switch out of Medicare Advantage may not be able to get a Medigap plan • Only 4 states provide continue guaranteed issue rights to all beneficiaries; nearly 1 in 5 people in traditional Medicare have no supplemental coverage • People enroll in Medicare Advantage because it covers many of the gaps in traditional Medicare • Out-of-pocket limit and Medicare-funded extra benefits

18. In most states, beneficiaries with pre-existing conditions may be unable to purchase Medigap if they want to shift from Medicare Advantage to traditional Medicare ME Guarantee issue protections (ages 65+): 4 states: Continuous or annual open enrollment 31 states: Expanded qualifying events 15 states + DC: Federal minimum standards only NY MA CT State requires Medigap insurers to offer policies to all beneficiaries age 65 and older, either continuously or annually (4 states) State and federal guaranteed issue protections are limited to specified qualifying events and one open-enrollment period (46 States + DC) SOURCE: KFF, “Medigap Enrollment and Consumer Protections Vary Across States,” July 2018.

19. Addressing Medicare’s benefit gaps would be an opportunity to address the needs of beneficiaries with serious illness Traditional Medicare does not cover: Dental services Eyeglasses or eye exams Hearing aids or exams Long-term services and supports No annual limit on out-of-pocket costs for medical services

20. Addressing Disparities for Vulnerable Populations • Health disparity: a higher burden of illness, injury, disability, or mortality for one group relative to another • Health care disparity: differences in insurance coverage, access to and use of care, and quality of care • Affect groups who have systematically experienced greater social or economic obstacles to health • Occur across a broad range of dimensions, including race/ethnicity, socioeconomic status, gender, age, disability, sexual orientation or gender identity, geographic location, etc. • Arise from a complex and interrelated set of individual, provider, health system, societal, and economic factors

21. What is health equity? Health equity: when all people have the opportunity to attain their full health potential and no one is disadvantaged from achieving this potential because of social circumstances. Source: Centers for Disease Control and Prevention, https://www.cdc.gov/chronicdisease/healthequity/index.htm.