1. Advocacy Issues in Implementing the HCBS Settings Rule November 6, 2015 Eric Carlson Melissa Harris Becky Kurtz 1

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3. Identifying Settings Likely to Isolate Relatively easy to identify settings that – Share building with nursing facility, or – Share property with public institution such as state hospital. Not so easy to identify “setting that has the effect of isolating individuals receiving Medicaid HCBS from the broader community of individuals not receiving Medicaid HCBS.” 11

4. “Private” Ownership Not Automatic Compliance E.g., CMS letter to Mississippi: – “Private home dwellings” may not automatically meet the characteristics of HCBS if all services are provided in that setting, or if residents are all or almost all persons with disabilities. Similar language in CMS letter to Washington. 11

5. Aren’t Many Settings Likely to Isolate? E.g., Day programs. Assisted living facilities. Suggestion: see this process as an opportunity to improve the quality of care, rather than as a risk of “losing” existing service providers. 11

6. What Is Integration? Regulation refers to isolation of persons receiving Medicaid HCBS, from persons not receiving Medicaid HCBS. – Integration must be with broader community, and not just with service recipients who are paying privately. 11

7. How to Determine Integration Geomapping? – Locating settings near institutions. – Locating settings near each other. Surveys. – But are surveys smart enough to get at the truth of isolation? 11

8. E.g., California Provider Survey (1 of 3) “Do participants regularly receive information regarding services in the broader community and access options, such as public bus/light rail, taxi/van services, special transportation providers, etc.?” 11

9. E.g., California Provider Survey (2 of 3) “Does the setting utilize access to the community as part of its plan for services?” “Does the setting offer participants an opportunity to seek employment in competitive integrated settings?” 11

10. E.g., California Provider Survey (3 of 3) “Does the setting encourage visitors or other people from the community to visit the setting?” 11

11. How Can Beneficiary Surveys Identify Isolation? Limitation: Beneficiary surveys are meant to validate provider surveys. – But difficult for beneficiary surveys to track provider surveys. A good question for a provider likely is not a good question for a beneficiary. 11

12. How to Determine Actual Integration? Suggestion: Focus more on what happens, rather than on theoretical rights: – E.g., When was the last time you left your home? – When was the last time you left your home to visit with a friend or family member? – What have you done outside the home in the last 30 days? 11

13. Reverse Integration Not enough to bring community members from the “outside” into the setting. – See, e.g., CMS’s response letter to Idaho: Test is whether beneficiaries have access to the community, not whether community has access to beneficiaries. 11

14. Consumer Choice Does Not Justify Segregation Beneficiary autonomy is important, but a beneficiary’s choice of a setting does not mean that the setting is community-based. CMS letter to NY: – “… beneficiary choice of the setting does not mitigate the requirement for the setting to comply with all provisions of the settings rule.” 11

15. Eviction Protections Eviction protections in provider-controlled settings must be at least as good as those in landlord/tenant law. Questions: – Is landlord/tenant law the best goal? – Are leases effective vehicles to raise standards? 11

16. Issues for Discussion 11

17. Dementia Care; Locked or “Delayed Egress” Settings In Q and A re: locked doors or alarms, CMS references modifications based on assessed needs. On the other hand, heightened scrutiny evidence is supposed to focus on the setting, not on severity of disabilities. 11

18. Size of Setting Size not determinative. States may choose to set size restrictions. – CMS, Questions and Answers Regarding Home and Community-Based Settings, Q #5 of Questions re: Residential Settings. 11

19. Assessments (1 of 2) Assessments should have broad reach: – All HCBS providers. – Mandatory. See, e.g., CMS letter to Alaska, asking for details on how state will get info from additional 79% of settings. Also CMS letter to MT, requiring follow-up when provider fails to respond to survey. 11

20. Assessments (2 of 2) Public should have access to assessment results. – See, e.g., Oregon Transition Plan: Amending Transition Plan to include assessment results, analysis, plan for remediation activities, and identification of sites for which state will be requesting heightened scrutiny review. 11

21. Ongoing Enforcment Being compliant is not enough; setting must remain in compliance. Not enough that state laws do not conflict with HCBS regulations; state laws and procedures must ensure continued compliance. – See, e.g., SC wrongfully focusing on laws that are “barrier.” 11

22. Questions 11