Nina Rothschild, DrPH Needs Assessment Committee October 7, 2011

1. Ten Years Later: Planning Council/NYC DOHMH Initiatives Addressing the 2002 Needs Assessment Recommendations Nina Rothschild, DrPH Needs Assessment Committee October 7, 2011

2. Planning Council: Role and Responsibilities • The HIV Health and Human Services Planning Council of New York sets priorities and allocates resources for a broad range of medical and social support services to address the multiplicity of needs experienced by People Living with HIV/AIDS (PLWHAs).

3. Planning Council Role and Responsibilities • Planning Council members include health care and social support service providers, advocates, consumers, and governmental representatives, all of whom have input into the process of setting priorities and allocating resources. • The Planning Council provides guidance to the New York City Department of Health and Mental Hygiene (DOHMH) as it develops RFPs and provides guidelines for offering services to address identified needs.

4. Giving the Green Light forNeeds Assessment • In 2002, the Planning Council commissioned McClain and Associates, Inc., to conduct a formal assessment of the needs of PLWHAs in the New York Eligible Metropolitan Area (EMA). • In 2004, McClain and Associates delivered an update to the 2002 needs assessment.

5. Components of the 2002 Needs Assessment • Epi profile (esp. the prevalence of HIV/AIDS within specific sub-populations) • Appraisal of service needs within populations, incorporating input from PLWH, providers, researchers, as well as community representatives • Resource inventory (paints a full picture of services from a variety of funding sources) • A synopsis of provider capacity and capability (focusing on whether services listed in the resource inventory are available, comprehensive, and suitable for PLWH) • Examination of service gaps (looks at data on needs, resources, and obstacles in order to facilitate the process of setting priorities and allocating resources)

6. 2002 Needs Assessment: Findings • Clients needing numerous services (especially women with children, the homeless, AODs, MICAs, immigrants/undocumented, recent detainees/releasees, and the unconnected) confront challenges when attempting to avail themselves of opportunities and sort out the demands of multiple agencies and sources of funding.

7. 2002 Needs Assessment: Suggested Strategies • To address the complicated needs of these populations and offer more coordinated care for high-need clients, the 2002 needs assessment suggested several strategies: • Intensive case management • Co-located services (one-stop shopping) • Low-threshold services (minimal barriers) • Enhanced referral arrangements between agencies • Transportation services not limited to one ride per day or permitted only in the context of primary care visits (for less ambulatory clients)

8. 2002 Needs Assessment: Findings • Homelessness has an especially harsh effect on very vulnerable individuals and creates obstacles that inhibit clients’ ability to participate in a broad range of services, including their ability to remain in care and to make the most effective use of opportunities offered. Managing the new medications can be particularly tricky for homeless individuals if they don’t have refrigerators and a place where they can prepare food.

9. 2002 Needs Assessment: Suggested Strategies • The 2002 needs assessment highlights the importance of diminishing the number of homeless individuals in general and homeless PLWHAs in particular but doesn’t offer a specific plan of action.

10. 2002 Needs Assessment: Findings • Providers are culturally insensitive and may hold stigmatizing attitudes toward various populations, including youth, men who have sex with men (MSM), substance users, and individuals suffering from mental illness.

11. 2002 Needs Assessment: Suggested Strategies • To address issues of cultural sensitivity, the 2002 needs assessment promotes training of providers, engaging peer outreach workers, and incorporating clients into decision-making about designing and implementing programs (e.g., community advisory boards, or CABs).

12. 2002 Needs Assessment: Findings • Clients from several populations have insufficient knowledge, including not comprehending how to engage with the health care system and not possessing accurate information about side effects associated with combination medications.

13. 2002 Needs Assessment: Suggested Strategies • To address this lack of information, the 2002 needs assessment suggests developing different approaches according to the particular population and engaging the schools in the effort (to reach youth) and utilizing peer educators (to reach drug users).

14. PC and DOHMH: Up and Running • Working collaboratively, Planning Council members and staff of the NYC DOHMH have developed several programs and projects to address needs identified in 2002. • These programs and projects include: • medical case management/care coordination to promote entry into and maintenance in care • housing services to reduce homelessness, enhance quality of life, promote engagement with the health care and social support system, and facilitate adherence to medication regimens • the Positive Life Workshop for PLWHAs grappling with their diagnosis or with returning to care • the consumer focus groups and Consumer Advisory Board Survey to gain client input into program design and implementation

15. Medical Case Management/Care Coordination • The PC allocates approximately $31 million to the medical case management/care coordination program ($26 million in base funds and $5 million in MAI funds), launched in 2009. • Care coordination creates a medical home and offers resources to health care providers to manage HIV as a chronic illness.

16. Medical Case Management/Care Coordination • Care coordination and primary care must be co-located or offered by organizations that have entered into a formal agreement and established a care network. • Case management can take place face-to-face, by phone contact, and through any other forms of communication.

17. Medical Case Management/Care Coordination • Key care coordination activities include: • Initial assessment of service needs and development of a comprehensive service plan • Evidence-based health promotion and treatment adherence intervention • Support in accessing social services and benefits and coaching • Patient navigation to retain PLWHAs in treatment and care

18. Medical Case Management/Care Coordination • In FY 2010, 3,191 clients received Base-funded medical case management • YMSM of Color: 1.8% • LGBT: 22.8% • Women of Color: 35.1% • Immigrants: 10% • In FY2010, 594 clients received MAI-funded medical case management • YMSM of Color: 0.7% • LGBT: 9.9% • Women of Color: 37.4% • Immigrants: 7.2%

19. Housing Services • Permanent, transitional and emergency housing is provided through Ryan White and through HOPWA (Housing Opportunities for People with AIDS) funded programs in combination with City tax levy funded rental assistance for PLWHA.

20. Housing Services • The Planning Council allocates approximately $10 million to housing, including emergency rental assistance, housing placement assistance, transitional housing, and housing referral coordination for PLWHA in commercial SRO hotels and in need of harm reduction. In FY 2010, the following numbers of clients received services: • Emergency Rental Assistance: 312 • Housing Placement Assistance: 568 • Transitional Housing: 569 • Housing Referral Coordination: 258

21. Housing Services • As of 2009, 75.5% of HIV-positive individuals who accessed HIV services in the NY Eligible Metropolitan Area lived in stable housing (own or rent). • Most Ryan White-funded housing placement services are reimbursed on a performance basis to encourage placement into permanent housing.

22. Housing Services • The Planning Council’s Integration of Care Committee is meeting later in October to begin to develop a new housing services directive. • Committee members will examine different housing models, listening to presentations from housing providers and reviewing published literature on the topic, to develop a model of care that addresses the needs of the PLWHA population.

23. Housing Services • NYC DOHMH, in partnership with Voices of Community Activists and Leaders (VOCAL) and the Corporation for Supportive Housing (CSH), is proposing to develop an Integrated HIV/AIDS Housing Plan (IHHP) for New York City. • The goal of the IHHP is comprehensive planning and coordination of local resources to meet the housing and service needs of low-income PLWHA in NYC.

24. Housing Services • DOHMH is proposing two HOPWA (Housing Opportunities for People with AIDS) activities as Special Projects of National Significance (SPNS): • A permanent housing placement program to facilitate accessibility of affordable housing • A support service program to promote sustainability of permanent housing

25. The Positive Life Workshop • Positive Life Workshop • Launched in Fall 2011 • Workshops are coordinated by DOHMH and led by peers • HIV education workshop series for persons recently diagnosed with HIV or out of the care system for the previous nine months • Goals are empowerment and skill-building • Provides participants with knowledge, motivation, and skills to bolster the immune system, improve treatment adherence, limit risk behaviors, and develop health enhancing routines.

26. The Positive Life Workshop • Topics covered include immune health, introduction to self-management and beliefs, adherence, addressing co-factors, health action planning, introduction to social health, physical health, body care, nutrition, risk behaviors, drug and alcohol use, sexual health, HIV disclosure, stigma, stress, grief and depression, emotional health, patient-provider relationship, self-monitoring, and more.

27. The Positive Life Workshop • The pilot of the Positive Life Workshop was just executed on September 28, 29, and 30. • A total of 10 introductory workshops and 6 intensive workshops are planned per calendar year. • In the introductory session, 18 attended and 17 graduated for a retention rate of 94%. • For the intensive follow-up course, 11 attended and 9 graduated for a retention rate of 82%.

28. Consumer Input • The HIV Health and Human Services Planning Council of New York actively seeks out consumer input to enhance services. • Forums for consumer input include consumer focus groups and Community Advisory Board (CAB) surveys to determine priorities, unmet needs, and barriers to care for PLWHAs.

29. Consumer Input • A total of ten consumer focus groups in 2009 were held in each borough, for men and for women, for transgender individuals and for youth, in English and in Spanish, to understand better what aspects of the HIV/AIDS health care and social support system meet PLWHAs’ needs and what could be improved.

30. Consumer Input • Currently, the Planning Council is conducting a survey designed to understand better the operations of agency CABs for eliciting and utilizing consumer input on program services. • Information from this survey will contribute to guidelines and recommendations for New York City’s portfolio of 90 Ryan White-funded agencies’ CABs. • The information will clarify operational procedures and provide information about the best consumer recruitment, engagement, retention in care, input, and feedback practices.

31. Re-examining Need • The Needs Assessment Committee is currently embarking on another needs assessment with assistance from DOHMH staff. • With information obtained from this needs assessment, the Planning Council and the DOHMH will be able to continually refine the process of setting priorities and allocating resources in order to create a system of care to address the multiple medical, psychosocial, and support service needs of PLWHAs.