MAKING STRIDES IN DISABILITY LITERACY IN HEALTH SYSTEM TRANSFORMATION IN NEW YORK STATE

1. MAKING STRIDES IN DISABILITY LITERACY IN HEALTH SYSTEM TRANSFORMATION IN NEW YORK STATE WINNING AND IMPLEMENTING CIVIL RIGHTS PROTECTIONS IN MANAGED LONG-TERM CARE FOR PEOPLE WITH BOTH MEDICARE AND MEDICAID IN NEW YORK CIDNY 2015

2. MAKING STRIDES IN DISABILITY LITERACY IN HEALTH SYSTEM TRANSFORMATION IN NEW YORK STATE • Key initiative—managed long term care for dual eligible beneficiaries; • Strategies used to achieve inclusion of civil rights and disability competency; • Lessons learned—what works and what doesn’t work CIDNY 2015

3. MAKING STRIDES IN DISABILITY LITERACY IN HEALTH SYSTEM TRANSFORMATION IN NEW YORK What is the backdrop for this work in New York State? • 1995 Governor announces managed care direction adopted by all subsequent governors; • 1995-1998 Disability and other advocates coalesce to participate in planning process for managed care; • 1998 ADA compliance plan appendix for health plan contracts is adopted by State for all Medicaid contracts; • 2002, 2005, 2014 analyses shows that health plans lack understanding of their civil rights obligations and compliance plans demonstrate lack of compliance; • 1990—2015 Litigation and Department of Justice Settlements and health policy research cast light on health care disparities for people with disabilities, unequal access, remedial strategies; • 1996-2015 inculcate skepticism in media regarding managed care policies; • 1998-2015 creation of “ombudsprogram” creates a “listening post” for beneficiary concerns in mainstream managed care which includes people with disabilities; • 2011 changes in leadership at the Department of Health creates some opening for disability work; • Ongoing national conversation in the disability community regarding implementation of civil rights in health care; • Long-standing coalition work tradition in New York State; • Funding to support analytic work and advocacy activities. CIDNY 2015

4. MAKING STRIDES IN DISABILITY LITERACY IN HEALTH SYSTEM TRANSFORMATION IN NEW YORK Why are we concerned about civil rights law compliance for FIDA plans? • Within the dual eligible population, there are four identifiable high needs groups: (i) adults under age 65 with physical or sensory disabilities; (ii) those 65 or older with multiple chronic conditions and functional limitations; (iii) individuals with serious psychiatric disabilities and/or drug or alcohol disorders; (iv) individuals with cognitive limitations including intellectual/developmental disabilities or dementia. • People with disabilities face physical, communications, and other barriers at provider sites, such as architectural barriers, inaccessible exam tables and weight scales, lack of interpreters, inflexible office procedures. • People with disabilities often need reasonable accommodations and modifications of health plan and provider policies and procedures to have full and equal access to care due to psychiatric or cognitive disabilities as well as physical or communications disabilities—these populations are often overlooked. • Seemingly neutral health plan design practices can result in discrimination, e.g. call centers. • People with disabilities report being treated unfairly at practitioner offices because of their disabilities. They report that they face negative attitudes and lack of knowledge about treating people with their disabilities. CIDNY 2015

5. What does our civil rights law say?…Americans with Disabilities Act says • The Americans with Disabilities Act requires that affirmative steps be taken to ensure that people with disabilities are treated in a non-discriminatory manner. • Under Title II of the ADA, “no qualified individual with a disability shall, by reason of such disability, be excluded from participation in or be denied the benefits of the services, programs, or activities of a public entity, or be subjected to discrimination by any such entity.” • Title II also states “All governmental activities of public entities are covered, even if they are carried out by contractors. For example, a State is obligated by Title II to ensure that services, programs, and activities of a State park in operated under contract by a private entity are in compliance with Title II’s requirements.” CIDNY 2015

6. MAKING STRIDES IN DISABILITY LITERACY IN HEALTH SYSTEM TRANSFORMATION IN NEW YORK KEY STATE HEALTH TRANSFORMATION INITIATIVE— FULLY INTEGRATED DUALS ADVANTAGE (FIDA) CIDNY 2015

7. MAKING STRIDES IN DISABILITY LITERACY IN HEALTH SYSTEM TRANSFORMATION IN NEW YORK KEY STATE HEALTH TRANSFORMATION INITIATIVE—FIDA • “Receive full Medicare and Medicaid coverage, long term care services, Part D and Medicaid drugs, and additional benefits from a single, integrated managed care plan… • “Pay no deductibles, premiums, or copayments/coinsurance to the plan… • “Be able to access specialists directly. No need for provider referrals. • “Stay in your current nursing home even if you change FIDA plans. • “Have a Care Manager who can schedule doctor's appointments, arrange transportation and help you get your medicine… • “Have your Medicare and Medicaid doctors and specialists on your care team... • “Add your caregivers or anyone you trust, like your friends and relatives, to your care team. • “Use one FIDA Plan phone number for all questions regarding your benefits. • “Have the right to leave FIDA at any time and for any reason…” Excerpts from DOH web site www.health.ny.gov/health_care/medicaid/redesign/fida/ CIDNY 2015

8. MAKING STRIDES IN DISABILITY LITERACY IN HEALTH SYSTEM TRANSFORMATION IN NEW YORK What have we accomplished? • Collection of stories of the experiences of people with disabilities in health plans demonstrating non-compliance with the ADA; • Analysis of ADA compliance policies from all managed long-term care plans—demonstrating noncompliance; • Verbal and written support for ADA compliance from DOH helps capture funding; • Analysis of more than 100 policy and procedure documents from 5 FIDA plans—detailing what modifications would be required to bring about compliance; • MOU between CMS and NYS includes extensive provisions elaborating on the specific meaning of ADA compliance—moving beyond mere policy statements; • NYS contract with managed care plans includes extensive language concerning ADA compliance in all aspects of plan operation; • Health plan policies and procedures required to integrate ADA; • CMS to develop ADA-Plus provider survey; • Health plan provider training to include ADA and disability literacy concepts; • Training for health plan personnel; CIDNY 2015

9. MAKING STRIDES IN DISABILITY LITERACY IN HEALTH SYSTEM TRANSFORMATION IN NEW YORK Strategies Used— • Listening to beneficiaries — “nothing about us without us” –Develop database of stories and track record of attempting to address issues with plans; • Research—read about efforts to ensure ADA compliance in health care—DOJ settlements, scholarly articles, strategy conversations with colleagues, etc.; • Analytic work—if it moves-paper it—analyze all draft documents and available policy documents and identify concrete specific opportunities to show how to integrate compliance; • Multi-prong advocacy—seize the day to educate colleagues, the state and plans--participate in all available planning meetings and coalition activities; • Administrative advocacy for adoption of standards by CMS and State; • Attempt cooperation with plans—enlist voluntary participation in collaboration to identify ADA compliance and disability literacy opportunities; • Train top health plan managers at parent company, subsidiary and generate action plan-wide, e.g. database, training, plan procedures; • Develop training for plan personnel on plan policies and compliance concepts—key is experiential training; • Develop training for health plan providers and instruments for plan surveillance. CIDNY 2015

10. MAKING STRIDES IN DISABILITY LITERACY IN HEALTH SYSTEM TRANSFORMATION IN NEW YORK Lessons Learned— • Listen to stories and document them—create case studies; • Capture the attention of leadership through constant presence, analytic capacity, case documentation, strong coalition support; • Media access and potential for legal action creates effective backdrop; • Integration of civil rights concepts into structure of plans critical—multi-layer approach is key to implementation at front lines of care; • Education and training are important—but one-shots are likely to be ineffective; • Continuous individual and systems advocacy are essential for true implementation; • Health plan cooperation is sometimes robust—but can be ineffective as some plans drop out of collaboration preferring to “take their chances;” • Advocacy with CMS can be disappointing; • The analysis of plan practices and procedures is multi-layered and the devil and angels are in the details—this is never finished; • Design flaws in the planning process for the initiative can loom large in ADA compliance—for example failure of the State to engage providers in planning; • Ultimately, litigation may be required. CIDNY 2015

11. MAKING STRIDES IN DISABILITY LITERACY IN HEALTH SYSTEM TRANSFORMATION IN NEW YORK Coming soon: • Release of • sample plan document analyses to show other advocates and plans what integration of ADA concepts would look like; • recommendations for provider training; • Recommendations for ADA compliance surveillance of providers; • Promising practices trainings built on findings of ADA compliance project. For more information, contact Susan M. Dooha, Executive Director, Center for Independence of the Disabled, NY at sdooha@cidny.org CIDNY 2015