1. The Olmstead Decision and Community Integration: Medicaid’s Role New York State Association of Community and Residential Agencies Annual Leadership Conference December 5, 2014

2. Figure 1 Olmstead was brought by two women with cognitive and mental health disabilities who remained institutionalized in Georgia, despite the fact that their treatment teams had determined that their needs could be met in the community The Olmstead plaintiffs argued that their circumstances violated of the Americans with Disabilities Act’s community integration mandate: –State and local governments are prohibited from disability-based discrimination and must provide services “in the most integrated setting appropriate to the needs of people with disabilities” –State and local governments must make “reasonable modifications” to policies, practices, and programs to avoid disability-based discrimination, unless doing so would constitute a “fundamental alteration” the nature of the service, program, or activity The Olmstead Plaintiffs and Their Claim Photo credit: Atlanta Legal Aid Society

3. Figure 2 Unjustified institutional isolation of people with disabilities is a form of discrimination under the ADA –in order to receive needed medical services, people with disabilities must, because of those disabilities, relinquish participation in community life that they could enjoy given reasonable accommodations, while people without disabilities can receive needed medical services without similar sacrifice Community-based services must be offered, if appropriate, if a person with a disability does not oppose moving from an institution to the community, and if the community placement can be reasonably accommodated, considering the state’s resources and the needs of other people with disabilities The reasonable modification standard would be met if a state demonstrates that it has a comprehensive, effectively working plan for placing qualified people with disabilities in less restrictive settings and a waiting list that moves at a reasonable pace The Supreme Court’s Decision in Olmstead

4. Figure 3 NOTE: Total LTSS expenditures include spending on residential care facilities, nursing homes, home health services, and home and community-based waiver services. Expenditures also include spending on ambulance providers and some post-acute care. This chart does not include Medicare spending on post- acute care ($73.3 billion in 2012). All home and community-based waiver services are attributed to Medicaid. SOURCE: KCMU estimates based on CMS National Health Expenditure Accounts data for 2012. As the Primary Payer for Long-Term Services and Supports, Medicaid Plays a Key Role in Community Integration Medicaid, 50% Other Public and Private, 22% Out-of- Pocket, 19% Total National LTSS Spending in 2012 = $294 billion

5. Figure 4 Most Medicaid Home and Community-Based Services Are Provided at State Option, 2010 3.2 million$52.7 billion 807,659 951,853 1,403,736 $5.7 billion $10.2 billion $36.8 billion Mandatory Home Health State Plan Services Optional Personal Care State Plan Services Optional § 1915(c) HCBS Waiver Services SOURCE: Kaiser Commission on Medicaid and the Uninsured, Medicaid Home and Community- Based Service Programs: 2010 Data Update (March 2014), http://kff.org/other/report/medicaid- home-and-community-based-services-programs-2010-data-update.http://kff.org/other/report/medicaid- home-and-community-based-services-programs-2010-data-update Total:

6. Figure 5 NOTE: “Aged/Disabled” comprises the following enrollment groups: aged, aged/disabled, and physically disabled. “Other” comprises the following enrollment groups: children, individuals with HIV/AIDS, individuals with mental health needs, and individuals with traumatic brain and spinal cord injuries. Percentages may not sum to 100 due to rounding. SOURCE: Kaiser Commission on Medicaid and the Uninsured, Medicaid Home and Community-Based Service Programs: 2010 Data Update (March 2014), http://kff.org/other/report/medicaid-home-and-community- based-services-programs-2010-data-update.http://kff.org/other/report/medicaid-home-and-community- based-services-programs-2010-data-update Medicaid § 1915(c) HCBS Waivers Can Be Capped, Resulting in Waiting Lists, 2002-2012 53%47%45% 64% 53% 47% 45% 53% 68% 64% 61% 62% 63% 58% 3% 1% 6% 5% 6% 10% 8% 9% 10% 192,447180,347 206,427260,916280,176331,689393,096 365,553 428,571 Total: 511,174 523,710 43% 51% 53% 41% 42% 26% 30% 29% 32% 28%

7. Figure 6 SOURCE: Kaiser Commission on Medicaid and the Uninsured, Faces of People on HCBS Waiver Waiting Lists (March 2014), http://kff.org/medicaid/report/medicaid-beneficiaries-who-need-home-and-community-based-services-supporting- independent-living-and-community-integration/. http://kff.org/medicaid/report/medicaid-beneficiaries-who-need-home-and-community-based-services-supporting- independent-living-and-community-integration/ Medicaid HCBS Waiver Services Play An Important Role in Supporting Beneficiaries’ Community Integration Curtis Age 20 Topeka, KS Margot Age 38 Charlotte, NC Carolyn Age 25 Miami, FL ResidenceLives with his motherLives with a friendLives with her mother Time on Waiting List Recently started receiving services after 12 year wait Still waiting 18 months after inter- state move to be near family Received services after waiting for 9 years HealthMental retardation, autism, and sensory integration issues Cerebral palsy with spastic quadriplegia Chromosomal condition affecting growth, mobility, behavior, and intellectual functioning SituationAttendant services help with basic living skills at home and in the community; will eventually need group home residential placement Has master’s degree in social work but unable to work due to health; has had 6 inpatient hospitalizations since her move, which she believes were preventable with sufficient home health aide hours Needs behavioral therapist and job coach to succeed at sheltered workshop and attendant services and wheelchair ramp to facilitate community access

8. Figure 7 $93 $100 $113 $121 $123 68% 37% 63% 42% 58% 55% 45% 32% 55% 45% 54% 46% Medicaid LTSS Spending is Increasingly Devoted to HCBS as Opposed to Institutional Care NOTES: Home and community-based care includes state plan home health, state plan personal care services and § 1915(c) HCBS waivers. Institutional care includes intermediate care facilities for individuals with intellectual/developmental disabilities, nursing facilities, and mental health facilities. SOURCE: KCMU and Urban Institute analysis of CMS-64 data. (in billions) $109 41% 59%

9. Figure 8 NOTE: Individuals who used both institutional and community-based services in the same year are classified as using institutional services in this figure. SOURCE: KCMU and Urban Institute estimates based on MSIS and CMS-64 FY 2010 data. Among Beneficiaries Who Use LTSS, a Larger Share of Non-Elderly People with Disabilities Live in the Community Than Seniors

10. Figure 9 Recent case themes, highlighting Medicaid’s key role in Olmstead implementation, include: –providing community-based services instead of institutionalization; –providing services in the most integrated setting to enable people with disabilities to interact with non-disabled peers to the fullest extent possible; –providing community-based services to prevent institutionalization for people at risk; –replacing sheltered workshops with supported employment; and –eliminating disability-based discrimination within the Medicaid program Olmstead Implementation 15 Years After the Supreme Court’s Decision SOURCE: Kaiser Commission on Medicaid and the Uninsured, Olmstead’s Role in Community Integration for People with Disabilities Under Medicaid: 15 Years After the Supreme Court’s Olmstead Decision (June 2014), available at http://kff.org/medicaid/issue-brief/olmsteads-role-in-community-integration-for-people-with-disabilities-under- medicaid-15-years-after-the-supreme-courts-olmstead-decision/. http://kff.org/medicaid/issue-brief/olmsteads-role-in-community-integration-for-people-with-disabilities-under- medicaid-15-years-after-the-supreme-courts-olmstead-decision/

11. Figure 10 NOTE: Total counts equal the number of states that are approved by CMS to participate in the option as of Nov. 2014. States with pending state plan amendments or demonstration proposals are not captured in this figure. Washington is approved for both capitated and managed fee-for-service financial alignment demonstrations. SOURCES: CMS, Medicaid.gov, and state websites. Medicaid Offers A Number of Options for States to Increase Beneficiary Access to HCBS

12. Figure 11 SOURCE: Kaiser Family Foundation, Faces of Dual Eligible Beneficiaries (July 2013). Medicaid Plays a Key Role in Community Integration Wanda Age 78 Tulsa, OK Virginia Age 72 Oklahoma City, OK Don Age 41 Owossa, MI ResidenceLives in subsidized senior housingLives alone at homeLives in an apartment HealthMuscular and skeletal problems, degenerative joint disease in lower back, hip replacement, and poor circulation in legs Uterine cancer, hypertension, acid reflux, hernia, poor circulation in legs Developmental disabilities, impulse control disorder, neuroleptic malignant syndrome Medicaid’s Role in LTSS Helped her transition from nursing home to community after two year stay post-surgery; case manager coordinates in-home aide and transportation services Provides regular home visits by nurse and personal care aide Enables him to self-directs his LTSS by hiring his own in-home caregivers and move from group home to his own apartment

13. Figure 12 NOTES: *MI has 1 waiver for seniors and people with physical disabilities and another waiver for people with I/DD. **Analysis includes states with § 1115 or § 1915(b)/(c) capitated MLTSS waivers. Other states may have capitated MLTSS programs through § 1932 state plan or § 1915(a) waiver authority. SOURCE: KCMU analysis of approved waiver terms and conditions, available at www.medicaid.gov.www.medicaid.gov State Interest in Delivering LTSS Through Capitated Managed Care Waivers Is Increasing MLTSS waiver includes seniors, people with physical disabilities, and people with I/DD (5 states) MLTSS waiver includes seniors and people with physical disabilities (13 states) No MLTSS waiver** (31 states plus DC)

14. Figure 13 Expanding Medicaid financial eligibility criteria (NJ, NY, RI, VT) Providing HCBS to people at risk of institutionalization (AZ, DE, HI, NY, RI, TN, VT) Allowing spouses as paid caregivers (AZ, VT) Including financial incentives for health plans to provide increased HCBS (HI, IL*, OH, TN) or provisions that increase state funding of HCBS (KS, VT) Requiring health plans to have strategies for NF to community transitions or NF diversion (KS, NJ, NM) Some Managed LTSS Waiver Provisions Are Aimed at Increasing Beneficiary Access to HCBS NOTE: *IL’s provision is in concurrent § 1115A authority. SOURCE: KCMU analysis of approved MLSS §1115 and §1915(b)/(c) waiver terms and conditions, available at www.medicaid.gov.www.medicaid.gov

15. Figure 14 Some existing quality measures, such as the National Core Indicators, ask beneficiaries to rate aspects of their services, such as: –The extent of community integration where they live, work, and spend leisure time –Opportunities to exercise choice and self-determination Some of the financial alignment demonstrations for dual eligible beneficiaries require states to report on measures related to LTSS rebalancing, such as: –The number or percent of beneficiaries living in institutional or community-based settings –The number or percent of beneficiaries transitioning between institutional and community-based settings –The number or percent of beneficiaries experiencing a decrease in authorized personal care hours. LTSS rebalancing measures remain a gap in evaluating HCBS quality, and additional work is needed and underway in this area. Some LTSS Rebalancing Measures Exist, But Further Development is Needed

16. Figure 15 The ACA’s new and expanded options to rebalance LTSS spending toward HCBS can be incorporated into states’ Olmstead plans - Money Follows the Person and Community First Choice include enhanced federal funding - The Balancing Incentive Program includes reforms such as the development and expansion of no wrong door/single entry point systems and core standardized assessments to achieve greater equity among different populations receiving Medicaid HCBS CMS’s new definition of “home and community-based setting” seeks to ensure the fullest integration for people with disabilities CMS’s 2013 guidance on Medicaid managed LTSS waivers specifies that these delivery systems reforms must be administered consistent with Olmstead and the ADA’s community integration mandate Looking Ahead, Medicaid Will Continue to Offer States Options to Facilitate Community Integration

17. Figure 16 For more information on Medicaid and health reform, visit… www.kff.org