The Northern Virginia HIV Service and Financing System

1. The Northern Virginia HIV Service and Financing System Assessing Resources to Address an Era of Constrained Funding

2. NOVAM submitted a proposal to the Washington AIDS Partnership on behalf of Northern Virginia (NOVA) HIV programs • The Partnership funded NOVAM in July 2005 • NOVAM partnered with Positive Outcomes, Inc. and VORA to undertake the assessment • The assessment was designed to assist funders and HIV programs to achieve optimal HIV funding by maximizing insurance payments and other funds and to inform region-wide HIV planning and care coordination

3. Acknowledgements Andrew Oatman, Barbara Lawrence, Brenda Hicks, Brett Minor, Brian Jennings, Dr. Charles Konigsberg, Jr., Chris Delcher, Christine Ingle, Cindi Jones, Reverend Daniel Brown, Dave Chandra, Dr. David Wheeler, Debbie Dimon, Debra Rowe, Dena Ellison, Dent Farr, Diana Jordan, Evelyn Poppell, Faye Bates, Gary Race, Geraldine Stile-Killian, Harry Miles, Honorable Jay Fisette, Jan Gordon, Jim Harvey, Joan Wright-Andoh, Johanne Messore, John Ruthinoski, Joseph Santone, Kathleen McEnerny, Lawrence Frison, Leo Rouse, Luau Temprosa, Mari Parr, Dr. Marsha Martin, David Shippee, Dr. Gary Simon, Nancy Sinback, Peggy Beckman, Robert Kenney, Robert Moon, Roberto Nolte, Ron Wilder, Ronnie Parker, Dr. Reuben Varghese, Shannon Glatz, Sue Rowland, Tae Lee, Tanya Ehrmann, Terry Smith, and Toni Howard We also acknowledge the considerable contribution of NVRC staff: Michelle Simmons, Nicolette Sheridan, and Stacy Balderston

4. What questions did we try to answer? • What is the likely impact of population changes in NOVA on future demand for HIV-related services? • What are the trends in per capita HIV funding in NOVA? How do these trends compare with other jurisdictions in VA and DC? • How do the priorities reflected in NOVA Title I spending compare with other jurisdictions in the metropolitan Washington EMA? • What is the distribution between core and non-core services, as defined by the HRSA HIV/AIDS Bureau? • How do these priorities compare with other Title I EMAs? • What is the impact of reduced or flattened funding on the HIV care system in NOVA, including the impact on HIV+ consumers, HIV clinics, and other HIV programs? • How effective are efforts by NOVA HIV programs in obtaining third party payment, reducing duplication of services, and easing insufficient HIV clinic and other service capacity? • Can other health and social support systems help to support NOVA HIV services? • Can greater efficiencies or other systematic changes be adopted to optimize future HIV funding in NOVA?

5. What else did we do? • POI provided TA to NOVA funders, clinics, and HIV service program • We worked with them to identify and address immediate barriers to the effective funding, organization, and management of HIV services • Offered examples of “best practices” used in other EMAs • We attempted, but were unable, to measure the utilization patterns of HIV+ Northern Virginians in CARE Act-funded programs • Deficiencies in XPRES data precluded us from conducting these analyses • We focused on HIV outreach, counseling and testing, clinical, housing, case management, and other psychosocial support services • We did not address NOVA HIV prevention activities • We did not assess the quality of services provided by NOVA HIV service organizations or the extent that HIV+ clients are satisfied with their HIV care

6. Received orientation to the NOVA HIV system from NVRC staff Reviewed reports, articles, data, and other materials Conducted a services inventory to identify agencies that provide HIV counseling and testing, clinical, housing, and psychosocial services, the services they provide, their service areas, and funders Used a previously field-tested HIV clinic assessment tool to conduct on-site assessments and TA at four HIV clinics Conducted a semi-structured field-tested key informant tool to guide interviews conducted with funders, government officials, NVRC staff, HIV service organization staff, clinicians, and consumers How was the assessment conducted?

7. Gathered MORE information to document anecdotal information gathered during site visits and interviews Analyzed HAB funding allocation data to compare Title I and II actual and proposed funding allocations by service categories for NOVA, other jurisdictions in the Washington Metropolitan EMA, and other EMAs Made a presentation at the Executive Committee to get feedback from the Northern Virginia HIV Consortium Met with NOVA local public health officials and legislators Consulted extensively with HAB project officers, NVRC, and DC AHPP (HAA) staff to Clarify policies and gain feedback on the findings and proposed recommendations How was the assessment conducted?

8. We attempted to gain an understanding of the distribution of HOPWA funds awarded to NOVA via DC, assess services purchased, and estimate per capita HOPWA funding for NOVA and DC We were unable to obtain AHPP data reported to HUD We attempted to estimate per capita HIV services funding for NOVA, the Norfolk EMA, other VA jurisdictions, and DC County and city jurisdictional allocations to HIV were difficult to ascertain and DC data were not available We attempted to assess the impact of the recent HIV clinic crisis on out-migration of HIV+ Northern Virginians to other NOVA HIV programs or to DC for care XPRES data could not be used to assess the actual number of unduplicated clients served due to Unique identifiers assigned to more than one client and Significant amounts of missing data These data limitations also prevented analysis of HIV program-specific service volume or productivity analyses What did we not assess?

9. How is the Northern VA Region defined? • For this project, Northern Virginia includes • Arlington, Clarke, Culpeper, Fairfax, Fauquier, Loudoun, Prince William, Spotsylvania, Stafford, and Warren Counties • Cities of Alexandria, Fairfax, Falls Church, Fredericksburg, Manassas, and Manassas Park. • This geographic area is consistent with the federal Metropolitan Statistical Area (MSA) used by the federal government to award Title I funds

10. AIDS Response Effort, Inc. Alexandria Health Department Arlington County Department of Human Services Public Health Division Chase Brexton Medical Services City of Alexandria Health Department DC Administration for HIV Policy and Programs DC Primary Care Association Fairfax County Health Department Fairfax-Falls Church Community Services Board, Mental Health Food and Friends Fredericksburg Area HIV/ AIDS Support Services George Washington University Medical Center HRSA HIV/AIDS Bureau INOVA Juniper Program Korean Community Services Center Loudoun County Health Department MediCorp Health System NOVAM Northern Virginia AHEC NVRC Positive Livin', Inc. Prince William County Health Department Prince William Interfaith Volunteer Caregivers VA Department of Health, Division of HIV, STD & Pharmacy Services VA Department of Housing & Community Development VA Department of Medical Assistance Services VORA Whitman Walker of NOVA Wholistic Family Agape Ministries Institute Which agencies participated in the assessment?

11. Why is this report so long? • We were asked to address a large, complex set of questions • Attempted to address not only regional, but county and city-specific issues • Particular effort was made to substantiate anecdotal reports from key respondents with supporting documentation • We outlined specific recommendations related to future planning, policy, programmatic requirements, TA, and training activities • Developed recommendations based on POI’s knowledge of what has worked and not worked in other EMAs, states, and nationally • To the extent feasible, we specified the groups that might take responsibility for addressing the recommendations • Effort was made to create a “road map” for short and long-term action

12. Key Findings

13. Demand For HIV Services is Growing in NOVA • In recent years, the NOVA’s HIV care system of clinical, supportive, and housing services has experienced increased service demand • The number of new clients and frequency of their units of service are increasing • Existing clients are not moving into other systems, creating further demand for resources • Funding levels have not kept pace with the demand for services • Funds have been shifted from supportive services to medical care to address the need to sustain clinical capacity • While these facts are in play in other EMAs, NOVA’s unbalanced demand, capacity, and funding is particularly unusual for a US metropolitan region • NOVA has a much smaller network of HIV care providers than other metropolitan regions • Unusual mix of independent county and city jurisdictions • Reliance on other governments to gather and allocate funds

14. Historical Funding HIV Funding Levels Have Constrained Growth of the NOVA HIV Service System • NOVA’s HIV system has experienced a long period of inadequate funding- a phenomenon that is usual for a U.S. urban region • Due to the relatively small number of HIV programs, any crisis in one program has a disrupting effect throughout the HIV system • This situation has unfolded in HIV clinical services, as well as in case management services in the EMA’s outlying counties • The cascading impact of single-agency crises has been experienced elsewhere in the U.S., but usually sufficient capacity is available to move patients to other providers • Due to the recent HIV clinic crisis, Title I funds were shifted to primary care • DC allocated no additional Title I funds to address this issue, despite the availability of unspent funds • While “local” (county and city) funds were allocated to HIV clinics, it is unclear if clinical capacity has been sustained or expanded sufficiently to meet demand • The impact of the NOVA HIV clinic crisis continues to be felt throughout the HIV care system, one year after the precipitating events

15. Historical Funding HIV Funding Levels Have Constrained Growth of the NOVA HIV Service System • There is heavy reliance on CARE Act funds to support HIV services • In some local jurisdictions, other systems of care are unable to absorb additional clients • Examples: mental health, drug treatment, subsidized housing, homeless shelters • Available resources from these systems often cannot be accessed if a client does not reside in the “right jurisdiction”

16. How do these findings compare to other EMAs? • It has been difficult to gain access to resources in other systems due to significant cuts in local and state funds in the early part of the decade • Cuts particularly impacted drug treatment, mental health, subsidized housing, and public health services • Elsewhere, EMAs have been slow to shift funds from psychosocial service to clinical core services, except where required by HAB core service policies • Diverse funding streams found in other U.S. urban EMAs are not present in NOVA • The types of organizations commonly participating in HIV care elsewhere in the U.S. are not present in NOVA • Teaching hospitals participating in clinical trials, hospital HIV outpatient departments, community, dental school HIV clinics, minority-focused CBOs, HIV experienced sub-specialists, primary and secondary prevention programs • Community health centers tend to be more widely available than in NOVA

17. Impact of Financing on the Organization of HIV Services • The VA Medicaid impacts significantly the NOVA HIV system • VA Medicaid is a program lagging historically behind other states in its eligibility and payment policies • CARE Act programs pay for services that would otherwise be covered by Medicaid in other states • Northern Virginia is heavily dependent on DC and VA government officials to allocate funds through Title I and Title II of the CARE and HOPWA • The flat funding of VA Title II has limited NOVA support • Title I was just cut $2.5 million for the grant year beginning on March 1 • Unclear what the impact will be on the NOVA Title I allocation • The level of NOVA local government funds varies between jurisdictions, creating disparities in available services • Several jurisdictions have lost some local government support for HIV services; with many competing demands reported in the local jurisdictions • Limited efforts by HIV programs to seek federal or other funding • Sources of potential funding hampered by impression that single provider-grants meet the needs of the region • HIV programs report that any further funding cuts will undermine patients’ ability to sustain their HIV clinical regimens

18. HIV Financing in NOVA Led to Disparities in the Availability of HIV Services • While HIV+ Northern Virginians are offered a minimal set of core services, as defined by HAB • HIV+ DC residents may chose from a relatively wide array of HIV services • DC HIV+ indigent residents have significantly greater access to health insurance programs not available in NOVA • Important HIV services are available to only a small portion of Northern Virginians • Funds are limited for outreach, case finding, substance abuse treatment, mental health services, medication education, and adherence counseling and support • Geographic disparities exist in NOVA related to the availability of these services • Since most HIV clinics are at or near capacity, outreach and case finding might actually further stressing the HIV clinical system

19. NOVA’s Housing Crisis is Impacting Availability and Access to HIV Services • NOVA’s affordable housing crisis has had a significant on HIV+ Northern Virginians and other indigent populations • Some HIV+ Northern Virginians are reported to be unable to find affordable housing, leading them seek affordable housing in outlying counties in the region far from their HIV clinics or support programs • Lack of geographic accessibility of HIV programs is a growing problem, as many HIV programs are centralized in the inner-Beltway area • Some HIV+ Northern Virginians that move to outlying counties must change their HIV clinical providers, resulting in delayed intake and the need to establish a new clinical relationship • Due to the migratory patterns of HIV+ individuals, health departments in outlying Northern Virginia counties are hard-pressed to meet demand for HIV services • The region’s highly variable public transportation system compounds the negative impact of centralized services for HIV+ Northern Virginians • Particularly for clients without cars

20. Doing More For Less: Reality Among NOVA HIV Programs • We identified the need to attain greater efficiency and fiscal solvency among Northern Virginia HIV service organizations • Eligibility determination screening is not addressed adequately by many HIV programs • Poor screening methods, inadequate staff training, staff turnover, conflicting understanding of eligibility criteria, Medicaid denial requirements, and inadequate funding for legal services • Applicants allowed to opt out of disclosure of income and insurance coverage • Third party reimbursement billing practices must be addressed better • Adherence to HAB payer of last resort policies must be improved

21. Doing More For Less: Reality Among NOVA HIV Programs • Organizational processes and policies could be improved among some HIV programs • Some issues were addressed by POI through TA, with additional intervention needed by some HIV programs • Further capacity development is hampered by lack of funds • A systematic approach is not used by HIV clinics and case managers to remind patients about appointments or to locate patients that have dropped out of care • Once enrolled in care, efforts are needed to ensure patients are retained in care • These findings are NOT unique to NOVA, except for opting out of disclosing disclosure of income and insurance coverage

22. Doing More For Less: Reality Among NOVA HIV Programs • Stakeholders are unified in their desire to achieve parity in funding throughout the Washington metropolitan area to ensure that all HIV+ Northern Virginians are assured equitable access to high quality HIV care

23. NOVA Lacks a Coordinated HIV Care Continuum That Effectively Links HIV Programs • NOVA HIV programs tend to have a low degree of integration across agencies • Limited joint strategic planning, seeking and sharing of resources, communication about shared clients • Some agencies; however, have demonstrated greater degrees of integration • Limited efforts to seek joint funding, with equitable distribution of funds among partnering programs • “Hoarding behavior” is indicative of insufficient funding and growing competition for the same limited funds Current System

24. NOVA is an HIV System Under Construction • Current NOVA HIV planning processes were acknowledged by most respondents to be ineffective in achieving a coordinated HIV care continuum • These processes included the Title I Planning Council and the Consortium • A need to create a process that focuses on HIV care planning was identified by almost all individuals interviewed • Significant interest was expressed in better integrating services across funding streams and HIV care providers • Positively, local jurisdictions have demonstrated significant willingness to work together to address the need to increase HIV primary care capacity

25. Recommendations

26. Recommendations • The report outlines almost 90 detailed, targeted recommendations • Recommendations focus on • Establishing an effective HIV systems planning process • Building an HIV care continuum that systematically transitions HIV at-risk Northern Virginians from community and institution-based outreach to counseling and testing and to engagement in HIV treatment • Expanding the capacity of HIV clinical, case management, housing, and psychosocial support services to address the needs of HIV+ Northern Virginians, including emerging populations • Maximizing Medicaid and other sources of revenue • Activities designed to foster independence among HIV+ Northern Virginians

27. Recommendations • Adoption of these recommendations can help achieve effective planning, resource allocation, and care coordination in NOVA • Improved efficiency and adoption of better “business models” can help to optimize the limited funds available to HIV programs • Recommendations are based on HAB policy, best practices achieved by other EMAs, and activities undertaken by other HIV programs to create integrated HIV care networks • Adoption of the recommendations outlined in the report cannot substitute for additional funds to address NOVA’s insufficient capacity to meet current and future demand for HIV services among its neediest HIV+ NOVA residents

28. To this end, the report recommends • A task force to develop a new funding formula for distributing federal HIV care funds, including Title I and HOPWA, to NOVA, Suburban MD, and W VA • Setting a minimum standard of core services available to all eligible HIV+ residents in the Washington EMA to ensure equity and reduce disparities in availability and accessibility of HIV services • Developing an alternative approach to identify and appoint NOVA representatives to the Planning Council to ensure adequate representation of NOVA consumers and HIV care providers • Appointing NOVA representatives to a regional HOPWA planning and resource allocation body that will ensure accountability in HOPWA program management and funding allocations • Identifying additional local funds to support HIV services • Advocating effectively for additional State and local funds earmarked for HIV surveillance, prevention, and care

29. Next Steps

30. Building an Action Plan • Due to the dominance of regional funding for HIV care and housing, it is critical that other jurisdictions in the EMA also identify and adopt measures to achieve a more efficient HIV system of care • Efforts to ensure that CARE Act funds are the payer of last resort must be undertaken region-wide to free CARE Act funds to support HIV+ individuals with no other source of funds or services not covered by Medicaid or other payers • Consistent with federal policies, CARE Act and HOPWA funds should be used to address short-term, transitional needs to the full extent possible • Isolated efforts in NOVA to accomplish these changes will only result in further disparities and put their HIV service organizations in further financial peril

31. Building an Action Plan • An action plan is needed to address the recommendations and sustain the positive momentum achieved by stakeholders • NOVAM is seeking WAP funds to help develop and implement the action plan • Developing an action plan will require consensus building among stakeholders to identify and implement system-wide short and long-term activities • HIV service programs should undertake their own planning efforts to address recommendations directed at them • A system-wide timetable should be developed for implementation of the action plan • Evaluation strategies should be used to ensure that the timely implementation of the recommendations • Facilitated processes may be needed to ensure that group efforts are goal-oriented, focused, and that turf issues and competing interests are addressed • The action plan must be specific, identify stakeholders responsible for implementation, and address geopolitical, financing, and organizational barriers to implementation

32. The (HIV) diagnosis is changing and our care model has to change too. We need to reexamine things and develop another model. Time is passing us by. We have an enormous intellectual undertaking ahead of us. County health department staff person

33. Questions and Discussion