• Contents
• Introduction
• Study 1: Ryan White CARE Act Reauthorization 2005: Title I and Title II Health Services Expenditure Patterns
• Study 2: Examination of Key Fiscal Issues Related to Grantees of the Ryan White Comprehensive AIDS Resources Emergency Act
• Study 3: Assessing the Impact of the Ryan White CARE Act Title II Emerging Communities Formula Grant Program

Study 3
ASSESSING THE IMPACT OF THE RYAN WHITE CARE ACT TITLE II EMERGING COMMUNITIES FORMULA GRANT PROGRAM

Boyd Gilman, Shawn Aldridge, Shelly Harris, Sonja Hoover, AND Sean Squire

Purpose of the Study

To evaluate the administration and implementation of the Ryan White Comprehensive AIDS Resources Emergency (CARE) Act Title II Emerging Communities Formula Grant program and to analyze its effect on planning and the delivery and use of services for people living with HIV and AIDS (PLWHA).

Background

The Emerging Communities Supplemental Grant program was created by Section 2620 of the Ryan White CARE Act Amendments of 2000 to provide relief to cities experiencing significant growth in their local HIV epidemics but ineligible for direct assistance under Title I of the CARE Act. Their ineligibility was the result of a combination of factors. The CARE Act Amendments of 1996 had changed the threshold formula for Title I eligibility from total cumulative AIDS cases (which included people who had died from the disease) to total AIDS cases reported over the most recent 5-year period for which data are available. Congress made this change to provide a more accurate estimate of the actual burden of care faced by communities. The intent of the authorizing legislation was also to limit the expansion of Title I cities and to address the evolving needs of potentially new Title I cities that had already established a developed infrastructure through the use of Title II funds.

At the same time that the Title I formula change was introduced, however, new highly active antiretroviral therapy (HAART) for HIV disease also began to be used widely. HAART dramatically altered local HIV epidemics. Successful application of new therapies in communities where access to those therapies was nearly universal and where people were being brought into care early in their HIV disease both slowed disease progression and significantly reduced the number of people developing AIDS. As long as eligibility remained based only on recent reported AIDS cases, not on combined HIV and AIDS cases, communities that successfully implemented the “early intervention” principles of the CARE Act were less likely to qualify for Title I funds even though their combined HIV/AIDS epidemics continued to grow. The Emerging Communities Supplemental Grant program was created to help correct this historical inequity in the CARE Act by providing vital resources to help these communities address their burdens of care.

Description

The Emerging Communities Supplemental Grant program defines emerging communities (ECs) as metropolitan statistical areas (MSAs) that were ineligible for Title I funds, had a population of at least 500,000, and reported to the Centers for Disease Control and Prevention (CDC) a total of 500 to 1,999 AIDS cases during the most recent 5-year reporting period. Qualifying communities are divided into two tiers: those reporting 1,000 to 1,999 AIDS cases (Tier 1) and those reporting 500 to 999 AIDS cases (Tier 2).1 The program is funded by withholding the greater of $10 million or 50 percent of the Title II funding increase from the base Title II award allotment. A minimum of $5 million is allocated to each tier and distributed proportionately among the qualifying communities on the basis of their percentage of total AIDS cases in that tier category. The purpose of the two tiers and the 50–50 split in program funds between them was to guarantee that a significant portion of the supplemental funding was directed toward the few communities with the largest incidence of HIV and AIDS and, thus, most likely to have been adversely affected by the change in the Title I eligibility criterion.

Methodology

One of the principal aims of the study was to investigate the impact of uncertainty and variability in program eligibility and funding on planning and the delivery and use of services for PLWHA. Specific topics of concern were as follows:

• Fluctuations in funding reflecting changes in Title II base appropriations
• Fluctuations in eligibility as a result of the number of reported AIDS cases
• Fluctuations in award amounts based on number of reported AIDS cases, number of qualifying communities in total, and number of qualifying communities in each tier
• The possibility of “penalizing” communities with declining numbers of AIDS cases by loss of eligibility
• Allocation of Title II base appropriations in States with EC funding
• The impact of Title III and IV grants and Medicaid benefits on the structure of the program and impact of funding fluctuations on the system of care
• The impact of funding fluctuations on long-range planning processes designed to determine and coordinate funding and service needs among all local areas
• Disproportionate funding to some ECs relative to Title I eligible metropolitan areas (EMAs).

The evaluation was based on multiple qualitative research methods, including a review of existing program documentation, telephone discussions with key informants in States and communities that either currently have an EC or had an EC that later lost its eligibility, and in-person discussions with a wider range of key informants in a subset of ECs previously contacted by telephone. Fifteen sites were chosen for the telephone discussions based on their tier eligibility pattern, geographic representation, and the number of ECs and EMAs in the State. Tier eligibility patterns were used to capture a range in annual funding variation. A disproportionate number of ECs were selected from States that (1) had a large percentage of their population living in rural areas, (2) were located in the South, (3) had relatively high rates of poverty, and (4) had a high proportion of racial and ethnic minorities. Many ECs are located in these States, and PLWHA in these States face significantly greater barriers to services than do those living in other regions of the country.2 Nonetheless, the sites selected for telephone discussions were drawn from all regions of the country. Follow-up site visits were conducted at five of the ECs contacted by telephone. The purpose of the site visits was to collect more in-depth information from key informants; follow up on issues raised during telephone discussions; and test the generalizability and validity of issues, concerns, and recommendations identified by informants.

During both data collection phases, four types of informants at the ECs were contacted: Title II directors, EC or consortium administrators, and provider and consumer representatives who were involved in the EC planning process. The data collection techniques consisted of semistructured, in-depth discussions. Discussion domains were based on the objectives of the evaluation and covered the following topics: (1) the impact of the EC program on other Title II programs in the State, (2) Title II and EC planning structures and procedures, (3) the impact of variability in eligibility and award amount, (4) the impact of the EC program on the delivery of services, (5) the impact of the EC program on access to and use of services, (6) the need for technical assistance from HRSA, and (7) recommended policy and program changes.

Limitations

The 40 communities that have qualified for funding under the EC program over the past 4 years vary widely in terms of their eligibility, funding, planning, and service provision. Although it was not feasible to include all ECs in the evaluation, information from the 15 sites chosen was nonetheless considered indicative of the key characteristics and issues confronting the EC program. Moreover, the EC program operates within the context of other CARE Act titles and non-CARE Act health service programs. An effort was made to capture the critical interactions between the ECs and these other programs, but a thorough study of the broad program effects and interactions was beyond the scope of this assessment.

Major Findings

The study’s findings are based on the experiences and perceptions of informants from the 15 communities included in the evaluation.

Many ECs experienced tremendous uncertainty and fluctuations in year-to-year eligibility. Of the 15 ECs included in the study, 1 remained in Tier 1 and 5 remained in Tier 2 throughout the first 4 years of the program. Of the remaining nine, changes in the number of reported AIDS cases caused two to fall from Tier 1 to Tier 2, two to fall from Tier 1 to Tier 2 and then to requalify for Tier 1, and four to lose program eligibility altogether.

Variation in program eligibility led to large fluctuations in annual funding amounts. ECs that became ineligible lost total funding, whereas those that regained eligibility had their funding restored, sometimes on a year-to-year basis. ECs that switched from Tier 1 to Tier 2 went from sharing a $5 million “pie” with sometimes as few as only 1 other community to sharing a $5 million tier allocation with upwards of 30 other communities. A commensurate increase in annual funding was realized if an EC regained Tier 1 eligibility. Even ECs that remained in the same tier throughout the 4-year period experienced major annual swings in funding as other communities moved in and out of the same peer group.

Variation in annual funding amounts created obstacles to effective planning. Unexpected declines in annual funding amounts made it difficult to engage in long-term planning, write contracts, hire providers, and implement monitoring and evaluation activities.

Variation in annual funding amounts disrupted the provision and use of services for PLWHA and engendered distrust among some providers and consumers in the community. Sharp decreases in annual funding amounts led to elimination of newly created services and damaged trust among community providers and consumers. Even unexpected increases in funding made it difficult to implement comprehensive plans, given the uncertainty in the availability of future funds.

The EC program exacerbated disparities in per capita funding usually associated with Title I, even between qualifying communities with similar numbers of AIDS cases. Per case funding amounts in the current year were $1,052 for Tier 1 ECs and $313 for Tier 2 ECs. As a result, one EC with 1,005 reported AIDS cases is receiving more than 3 times the amount of funding on a per capita basis than another EC with only 33 fewer cases. Moreover, the discrepancy in per case funding between Tiers 1 and 2 is widening over time as relatively fewer ECs qualify at the upper level.

The EC program may have fostered duplicative planning processes and structures. Four of the 15 States had EC-specific planning processes and structures to plan for EC funding. Two others conducted special EC planning activities during their first year of eligibility, but in subsequent years they incorporated planning for EC funds into established processes for base Title II funds. The nine other States felt that conducting EC-specific planning would be duplicative and reported that their established Title II processes were adequate for this purpose.

The EC program may have affected broader Title II planning processes at statewide and regional levels. Although respondents reported that the EC program had no effect on broad Title II planning processes, 9 of the 15 States redirected base Title II funding from other sources to EC areas to offset losses in EC funding for 1 or more years to minimize disruption in client services. Furthermore, shifts in MSA designations may affect not only EC eligibility but also State and regional planning. Three States identified challenges resulting from having ECs with MSA regions that differed from established health planning or consortia regions or from shifting MSA designations that could affect EC funding eligibility and, as a consequence, allocation of Title II base funding to EC and non-EC areas.

Late notice of EC award and receipt of EC funding affected programs’ ability to effectively plan for and use EC funding. Notice of EC award and actual receipt of funding came too late for some States and ECs to be able to incorporate the information into their established planning activities. This resulted in situations in which (1) awardees felt the EC funding was not planned for and, thus, not used effectively; (2) providers had less than a full year to expend the funds; and (3) the funding was placed in large but important programs that could quickly absorb the additional funds, such as the AIDS Drug Assistance Program (ADAP) or primary medical care networks, thus allowing the States to avoid having to return unspent monies.

Areas that have access to a mix of base Title II, EC, Title III, and Title IV program funds had the potential to develop comprehensive service programs. Having Title II, Title III, and Title IV programs and supplemental EC funding in one service region allowed programs to provide a more comprehensive service package while minimizing duplication of services, thus maximizing limited resources. Having Title III programs was viewed as especially beneficial because their existence allows at least a portion of Title II funds to be shifted from primary medical care to supportive services that help maintain clients in care. Joint planning among the title programs is critical for this approach to work, but it occurred with only a few of the 15 participating ECs. Supplemental EC funding was seen as a way of further expanding the ability to fill funding gaps and provide a more comprehensive package of services.

EC funds were used both to expand existing medical and support services and to establish a wide range of new services to infected populations with unique health care and other social service needs. Program money was used to fund a wide variety of services, including traditional services such as primary care, medication assistance, case management, housing, transportation assistance, emergency services, and food assistance, as well as new services to better meet the needs of communities with special needs. Innovative and special needs programs and services included permanency planning to assist children in the event of a parent’s death, transitional planning for people released from correctional facilities, substance abuse counseling and treatment, outreach and education, nutritional counseling, pastoral counseling, home visits to assist in medication adherence, and translation services.

The EC program contributed to an increase in client access to and utilization of medical and support services in qualifying communities. Program funds resulted in an increase in the number of people using services and an increase in the frequency and range of services being used by clients already in care. Waiting lists and times were reduced as a result of the availability of additional funds. The utilization of primary care services was enhanced by the availability of support services such as adherence counseling, child care, housing assistance, and transportation. Program funds were often used to target women, infants, and children; the homeless; substance abusers; migrant workers; minority populations; incarcerated persons; and other populations facing historical barriers to care.

Recommendations

Refocus Reforms on Title I

The CARE Act Amendments of 2000 included a provision establishing the EC program to help address funding disparities to non-EMA States caused in part by the Title I program. Although the program partially addresses these funding disparities, it creates the same type of funding disparities caused by Title I, but for urban and rural areas that do not qualify as eligible EC MSAs or that do not meet the EC AIDS case criteria. As such, the EC program imperfectly functions somewhere between the Title II base–funded program and the Title I program. The EC program is only a partial solution toward achieving greater parity and equity across communities. Reform efforts should instead focus on addressing the disparities and inequities caused by the Title I program. Although the Title I program played a critical role in mounting a rapid response in the major cities where the epidemic was concentrated in its early years, HIV and AIDS have now imposed a health care burden on every region of the country. Today, more appropriate mechanisms than the Title I program may need to be developed for funding HIV/AIDS services in large metropolitan areas while equitably addressing HIV/AIDS care needs in all urban and rural settings throughout the United States and its territories. It is against this backdrop that the following continuum of recommendations for the EC program is proposed.

Return EC Funds to Title II Base

Ideally, the EC program should be eliminated and the funds returned to Title II base appropriations for allocation to States as part of their general award. Given the funding inequities and disparities caused by double counting of AIDS cases among the CARE Act titles, however, HRSA should consider recommending the elimination of the EC program and the establishment of a new Emerging Community State Formula Grant Program using the funds that currently support the EC program. The purpose of this program would be to provide supplemental Title II funding to States with qualifying ECs under the rationale that States with communities currently defined as emerging communities may be disproportionately affected by HIV and AIDS. These funds would be planned for through the States’ established Title II planning processes, but there would be no requirement that they be used in the EC area. The only stipulation would be that the funds could not be used in Title I EMA areas in the State. These funds would essentially be supplemental Title II base funds and, as such, would not have to be tracked or reported separately.

The reasons for eliminating the EC program are as follows:

• The EC program disrupts existing long-range planning processes that have been designed to identify and coordinate funding and service needs among all local areas.
• EC planning is often burdensome to local communities and may be duplicative of existing Title II efforts, particularly when MSAs span multiple consortia, each with its own Title II planning structure and needs assessment and planning processes. MSAs that span State boundaries create uniquely onerous planning challenges.
• Double counting of AIDS cases creates funding inequities between ECs and non-EC areas and between States that have ECs and States that do not; it further exacerbates the funding inequities between States that have ECs and Title I EMAs and those that do not.
• The designation of an area as an EC does not necessarily identify a geographic area or jurisdiction with HIV/AIDS care and support needs that are significantly greater than those of a non-EC. Moreover, the use of MSA designation as a primary criterion is imperfect. MSAs vary greatly in their size and demographic composition, their designations are somewhat subjective, and their boundaries and composition shift over time. (This criticism can be applied to EMAs as well.)
• Although EC funds are earmarked for use in the designated EC area, State Title II programs have the option of using the funds to replace the base Title II funding going into the EC area and reallocate the base funds to other areas or uses, thus circumventing the intent of the program.
• Separate tracking and reporting of EC funds constitutes an additional and unnecessary administrative burden for local consortia and State programs.

The specific mechanics for replacing the existing EC program with a new Emerging Community State Formula Grant Program are as follows:

• Eliminate the two tiers and allocate the EC funds directly to the State as grantee based on the number of reported AIDS cases across all qualifying communities in the State as a proportion of the number of reported AIDS cases in all qualifying communities nationally.
• Phase in the funding changes resulting from the proportional allocation by limiting the increases or decreases to any given EC to 25 percent per year. Doing this will minimize disruptions to existing programs and minimize funding increases that may exceed the absorptive capacity of the local service system
• After the tier system has been eliminated, the current EC program should be dismantled through a similar phased-out approach, whereby funding to current qualifying ECs is reduced by 25 percent so that within 4 years, the current program has been eliminated completely. During this process, the funds can be reallocated to the Emerging Community State Formula Grant Program in the same fashion.
• During this phase-out period, the loss of funds to communities that become ineligible should also be limited to 25 percent per year to minimize disruption of services and damage to community trust. In this way, the removal of funds because of loss of eligibility would be gradual, spanning a period of 4 years. Once the current EC program has been eliminated and the new supplemental State program has been fully phased in, the temporary limits on funding decreases would end.

Reform the EC Program

Eliminating the EC program may not be feasible at this time. Short of eliminating the EC program, making the following refinements to the supplemental grant program would achieve greater stability and equity in funding. Most of the following recommendations entail changes to the authorizing legislation, which only Congress can make. Therefore, HRSA should include them in its recommendations to Congress under the FY 2005 CARE Act reauthorization.

• Eliminate the two tiers and allocate the EC funds proportionately according to the number of cases across all communities. To minimize disruption of services caused by the elimination of the dual-tier structure, increases or decreases in funding as a result of proportional allocation should be limited to 25 percent per year. Once the full effect of the tier elimination has been realized, this temporary funding guarantee should be terminated.
• Institute a general cap on annual funding reductions to minimize the disruption caused by unexpected withdrawal of funds when an EC loses eligibility. Under this temporary funding protection, ECs that lose eligibility because their AIDS cases fall below 500 would eventually lose all funding under the supplemental program.
• Release the number of CDC-reported AIDS cases for all current and newly eligible ECs by the October prior to the next CARE Act fiscal year so that communities can adequately prepare for the identification of needs and the allocation of funds.
• Make clear to States and ECs that they may carry over funds after the initial year of award. A carryover provision would facilitate needs assessment, contracting, and monitoring and evaluation procedures.
• Encourage States and communities to write provider contracts spanning 2 or 3 years at a time. Doing so would provide for better planning and greater continuity in the provision of care and help engender greater trust and commitment on the part of providers. Longer-term contracts would need to be made conditional on continued Federal appropriations for the EC program at the same level.
• Require that States disburse funds within a fixed period of time following award notification and that they provide contractors with adequate time to spend the funds. Delays in disbursement create major challenges in implementing provider contracts and delivering services. The notification, award, and disbursement process should be made more transparent and systematic, and States should be held accountable for disbursing funds within a time period specified by HRSA.
• Require Title I, II, III, and IV grantees that provide services in the affected geographic area to participate in the local EC planning process. Doing so would help facilitate the coordination and efficient use of EC resources.
• Replace the provision that guarantees the EC program one-half of any increase in Title II base appropriations with something more representative of the actual proportion of AIDS cases in qualifying MSAs. HRSA should urge Congress to reevaluate this allocation formula and tie the proportion of EC funds to the resource needs of ECs relative to non-EC communities.
• Use both HIV and AIDS counts in the allocation formula for EC funds. Including HIV counts in the allocation formula would help ensure that program resources are targeted to communities facing the greatest demand for medical and support services. It would also help ensure that resources are focused on subpopulations with the highest incidence of newly diagnosed cases. The last of the States and municipalities have just recently implemented an HIV reporting system to the CDC. Although the reliability, comparability, and completeness of the records have not yet been established, HRSA should consider using the EC program to pilot test the use of HIV counts for allocation of funds. (The Institute of Medicine recently submitted a major report to HRSA outlining the strengths and weaknesses of using HIV cases for resource allocation.3)
• Base allocation decisions on HIV and AIDS cases in active care. Doing so would focus funds on programs whose resources are actually being used. It would also provide an incentive for communities to reach out to infected populations that are currently not receiving care and are often disenfranchised from systems of care, and get them into treatment programs. Moreover, HRSA should base allocations on point of service to account for client relocation after testing.
• Review the EC definition, eligibility criteria, and funding formula to ensure that they adequately capture what constitutes an emerging community and that the formula allocates funding proportionately to the needs of the community. The allocation formula should reflect the community’s incidence and prevalence of HIV and AIDS, the incidence of poverty, the proportion of the population without health insurance, and the resource demands of the particular geographic area.3

References

1 An MSA is defined by the U.S. Office of Management and Budget as a county or group of contiguous counties that contains at least one city of 50,000 inhabitants or more or a county or group of contiguous counties that contains an urbanized area of at least 50,000 inhabitants and a total population of at least 100,000 inhabitants (75,000 in New England) based on the most recent census data. MSA boundaries and EC definitions may change based on shifts in demographics as measured by the census data.

2 National Alliance of State and Territorial AIDS Directors. Southern States Manifesto: HIV/ADS and STDs in the South: A Call to Action. Southern State AIDS/STD Directors Work Group; 2003.

3 Institute of Medicine. Measuring What Matters: Allocation, Planning and Quality Assessment for the Ryan White CARE Act. Washington, DC: National Academies Press; 2003.

Health Resources and Services Administration
HIV/AIDS Bureau
5600 Fishers Lane, Suite 7-05
Rockville, MD 20857
Telephone 301.443.1993
www.hab.hrsa.gov

 

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