Recommendations to Guide the 2005 Reauthorization of the Ryan White CARE Act

NASTAD's recommendations to simplify and provide flexibility within the CARE Act focus on: reducing unfunded mandates, streamlining the application and reporting requirements, state match and maintenance of effort, WICY set-aside reporting requirements, unmet need, quality management, and prevention-care integration flexibility.

CARE Act Simplification

The CARE Act has a large number of requirements, including determination of unmet need, quality management, the Statewide Coordinated Statement of Need (SCSN), and comprehensive planning. Many of these requirements are unfunded mandates that place additional administrative burden on states. These mandates compel state health departments to engage in costly and time-consuming processes in order to fulfill the requirements of each mandate. For example, the requirement for states to develop a separate comprehensive plan is an unfunded mandate that is duplicative of other planning processes. This reporting requirement should be eliminated and the required information be requested as part of the Title II grant application.

Throughout a funding cycle, HRSA requires that progress reports and additional information be submitted. While state and local health departments recognize the importance of these reporting requirements, only necessary information should be collected. Often time, the elements are repetitive of the Title II grant application and/or the information is available through other sources. In addition, there are situations where data collected by states is not utilized, reported, or analyzed by HRSA.

• RECOMMENDATION #13 -- Reduce the administrative burden placed upon states.
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  • RECOMMENDATION #13a -- (Legislative) Make CARE Act Title I and Title II planning, application and grant cycles concurrent. This would improve collaboration and planning across Title I and Title II CARE Act grantees. It would also help to eliminate redundancies in planning, funding, and delivering HIV care services across jurisdictions.

  • RECOMMENDATION #13b -- (Administrative) Keep "Off-year" reporting requirements of the biennial application process to a minimum. This will allow states to focus on longer-term planning and the delivery of services to eligible clients. Reports should also be limited to quantitative data and a brief summary of new accomplishments and barriers.

  • RECOMMENDATION #13c -- (Administrative) Reduce or keep to a minimum unfunded mandates for activities such as determining unmet need, quality management, comprehensive planning and SCSN. Eliminating many of these legislative requirements or only requiring information once during a funding period would ensure that state and local health departments are able to allocate their financial and human resources in the most effective manner.

  • RECOMMENDATION #13d -- (Administrative) Provide additional funding for time-intensive requirements, such as determination of unmet need. This would allow health departments to ensure that they were complying in the most accurate and responsible way possible. Many of the unfunded mandates are time consuming for health department staff. These mandates use resources and staff time that might be more effectively used in another capacity. However, these mandates should not come before the provision of medical care and treatment to clients.

  • RECOMMENDATION #13e -- (Administrative) Eliminate many of the unnecessary reporting requirements placed upon Title II grantees. This would allow states to focus on providing vital services to HIV-positive individuals.

State Match and Maintenance of Effort

The CARE Act contains two provisions designed to assure state funding support for HIV care and treatment programs. To prevent federal funds from offsetting specific HIV-related budget reductions at the state level and to encourage increased state contributions to HIV care services, Title II contains a state funding match¹⁵ and maintenance of funds assurance¹⁶ requirement. The current economic situation has forced state governments to reduce funding for many state programs, including HIV/AIDS services. With the state match and maintenance of effort provisions, Title II programs confronting state budget cuts face the possibility of losing federal funds through the withholding or reduction of Title II CARE Act funding. This further penalizes already fiscally strapped states and may restrict access to care and critical, life-saving services.

Additionally, Title II administrators lack the authority to ensure maintenance of effort assurances are met. In determining maintenance of effort requirements, expenditures from numerous state agencies are aggregated to calculate the overall amount of state expenditures for HIV-related services. Title II administrators often have little to no control over other departments' budgets or expenses from year to year.

Because of a 1:4 state match requirement for ADAP Supplemental grant awards, some eligible states have been unable to access this targeted program designed to increase access to care in states with ADAP restrictions. This match requirement has resulted in a loss of funds to several state ADAP programs that are in dire need of additional resources.

• RECOMMENDATION #14 -- (Legislative) Continue state match and maintenance of effort requirements for states.
  • RECOMMENDATION #14a -- (Legislative) Maintain flexibility of allowable costs for state match and maintenance of effort requirements. NASTAD continues to support the flexibility of states to determine allowable, appropriate expenditures in meeting these mandates.

  • RECOMMENDATION #14b -- (Legislative) Eliminate match requirement for ADAP Supplemental Treatment Grant awards.

Women, Infants, Children and Youth (WICY) Funding Set-Aside

In the 1996 reauthorization of the CARE Act, Congress added language to Sections 2604 (4) and 2611 (b) to assure adequate proportional funding for the aggregate population of infants, children, and women with AIDS. In the CARE Act Amendments of 2000, Congress included additional requirements on proportional spending. The law obligates grantees to spend a percentage of their Title II grant on services for each priority population of women, infants, children, and a newly added group, youth (WICY) that is consistent with the percentage of each WICY population among persons living with AIDS within the grantee's jurisdiction.

The WICY provision is the only population-specific requirement in Titles I and II of the CARE Act. States and EMAs should have the flexibility to address the disproportionate impact of HIV on underserved populations by directing funding based on epidemiology, assessments of need, and existing resources supporting services for those populations. Title I and Title II are charged with the responsibility of ensuring services for all clients, not just WICY clients; however, the ability of states and EMAs to direct funding based on need is inhibited by funding set-asides that require the expenditure of a legislatively established percentage of dollars for specific populations. In addition, the burdensome requirements resulting from the WICY provision are not consistent with the legislative directive related to administrative simplification.¹⁷

• RECOMMENDATION #15 -- (Legislative) Eliminate the WICY proportional spending requirement from Titles I and II.

Unmet Need

As required by the CARE Act, states for the first time in FY2005 must assess unmet service needs in their jurisdiction and determine the estimated number of individuals who know their HIV positive status but are not receiving primary medical care.¹⁸ The CARE Act requires states to assess the needs of individuals not in care, to allocate resources based, in part, on this assessment, and to develop strategies to identify individuals not in care and "encourage" them to utilize services. States were first asked to describe the quantitative and/or qualitative methodologies they employ to assess individuals not in care in their annual CARE Act applications for FY2004. In 2003, HRSA announced that all states would be expected to use a methodology developed by the University of California at San Francisco in order to determine unmet need. No additional funding has been provided to jurisdictions to produce an unmet need assessment.

States have reported that quantitative and qualitative efforts to document unmet need are complex, challenging and prohibitive in many jurisdictions. Given the overwhelming difficulties that states have confronted in an effort to collect, analyze, and report data and related information on unmet need associated with persons not in care, and without sufficient resources to support such efforts, states are not well served by legislative mandates that require estimating unmet need. In addition, the data cannot be considered complete or comparable within and across jurisdictions; therefore, the data will not be meaningful and cannot be used at the federal level to support accurate estimates of unmet need. Neither the federal government nor Congress are well-served by this legislative mandate.

• RECOMMENDATION #16 -- Revise the provision requiring states to quantify unmet need.
  • RECOMMENDATION #16a -- (Legislative) Eliminate the legislative requirement to quantify unmet need to identify the number of persons who know their status and are not in care. Eliminating this requirement will not diminish the importance of conducting outreach to link persons with HIV to care, especially given CDC's Advancing HIV Prevention (AHP) initiative intended to identify and encourage entry into care of all persons living with HIV.

  • RECOMMENDATION #16b -- (Administrative) Short of elimination, maintain flexibility in methodologies of determining unmet need as well as data sources used to estimate need. However, it should be noted that providing this flexibility may pose difficulties for comparing data across jurisdictions.

  • RECOMMENDATION #16c -- (Administrative) Provide funding to states for the resource intensive process of determining unmet need.

Quality Management

Under the CARE Act, states and EMAs are required to establish a quality management program to assess the extent to which HIV health services provided to persons living with HIV/AIDS are consistent with the most recent Public Health Service (PHS) guidelines.¹⁹ HRSA's policies also mandate that all quality management activities conducted by the states ensure that strategies for improvements to quality medical care include vital health-related support services and that demographic, clinical, and health care utilization data are used to monitor the spectrum of HIV-related illnesses and trends in the local epidemic.

A 2004 Institute of Medicine (IOM) report²⁰ found that current quality management efforts are not guided by a common conceptual framework and measures are often not standardized. The report suggests developing a standardized set of measures and recommends that the Department of Health and Human Services "provide additional resources to HRSA and CDC to develop infrastructure for monitoring quality at the patient, clinic, and population levels." The report also found that Congress should "enhance flexibility in the administrative caps at the grantee level to promote infrastructure development."

• RECOMMENDATION #17 -- Revise the quality management requirements of the CARE Act.
  • RECOMMENDATION #17a -- (Legislative) Maintain states' flexibility to choose the quality management strategies that work most effectively in their jurisdiction. Quality management programs are often costly and time-consuming. It is imperative that states not be required to replace their established quality management programs with a federally mandated process. States recognize the value and necessity of appropriate quality management programs and many jurisdictions have already developed model programs that may be utilized across states.

  • RECOMMENDATION #17b -- (Legislative) Account for costs associated with quality management activities separately from administrative costs, as quality management is an integral part of service delivery. In order for states to provide effective quality management programs, they must be allowed flexibility in spending. Enhanced flexibility in the administrative caps would allow states to better direct their quality management activities to ensure the greatest level of accuracy and accountability. Additional funds have not been provided for quality management, so in order to establish these programs, many states diverted funds from services to develop quality management programs. Additional funding must be provided for states to continue to establish quality management programs.

  • RECOMMENDATION #17c -- (Administrative) Require HRSA to provide states with technical assistance to develop quality management programs for support services.

  • RECOMMENDATION #17d -- (Administrative) Provide funding to states to develop and maintain effective quality management strategies. HRSA must provide additional technical assistance support to state health departments and their staff on assessing quality management. States are interested in ensuring that the information they collect is reliable and detailed enough to provide their programs and HRSA with quality measures. To do this, states need increased technical assistance to work through the complicated process of measuring quality and responding with appropriate changes to enhance quality of services.

Prevention and Care Integration

The delivery of HIV prevention services in the primary care setting is increasingly considered the standard of care for persons living with HIV. In July 2003, CDC, HRSA, the National Institutes of Health, and the HIV Medicine Association of the Infectious Disease Society of America released the guidelines Incorporating HIV Prevention into the Medical Care of Persons Living with HIV. The guidelines present clear recommendations for clinicians regarding screening patients for risk, incorporating behavioral interventions into practice, referring patients to appropriate prevention services, and working with partners through partner counseling and referral services (PCRS). The care setting often presents a missed opportunity for the inclusion of HIV prevention services.

The CARE Act allows grantees to utilize Title I and II dollars on prevention, or Early Intervention Services (EIS), including risk reduction counseling and HIV testing, and Prevention for Positives programs. This allowance, however, is restrictive to most grantees who find it difficult to meet the payer of last resort requirements in order to utilize CARE Act funding for these programs.

• RECOMMENDATION #18a -- (Legislative) Provide states with more flexibility for incorporation of Early Intervention Services and Prevention for Positives programs into CARE Act programs.

• RECOMMENDATION #18b -- (Administrative) Recognize HIV prevention as a standard of care for persons living with HIV/AIDS.

• RECOMMENDATION #18c -- (Administrative) Encourage and provide technical assistance to providers to adopt standards based on incorporating HIV prevention into the medical care of persons living with HIV/AIDS.