Measuring What Matters Allocation, Planning, and Quality Assessment for the Ryan White CARE Act (2004) / Chapter Skim
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5 Estimating Resource Needs
5 Estimating Resource Needs
Pages 135-187
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From page 135... ...
Act (RWCA) attempts to direct funds to areas in the great est need of financial assistance through several of its discretionary grant programs, including Title I supplemental awards, Title II AIDS Drug Assistance Program (ADAP)
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. Reflecting this notion, Congress increased the weight assigned to severity of need in determining the supplemental award from 25 percent to 33 percent in the 2000 reauthorization (Ryan White CARE Act.
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Available resources Table 5-1 provides some examples of the types of measures that could be used to assess resource needs. TABLE 5-1 Examples of Measures of Resource Needs Factors Affecting Resource Needs Example Measuresa Disease Burden · Reported HIV cases · Reported AIDS cases · Incident reported HIV cases · Incident reported AIDS cases · Prevalent HIV infections (including undiagnosed)
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Prevalent known HIV infection is appropriate for estimating the clinical burden to apportion care resources. Current RWCA allocation formulas are based on estimated AIDS prevalence, based on data from states through their AIDS case-reporting systems.
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. Despite these limitations, data regarding regional variation in medical costs and prices could provide a useful complement to existing data in determining RWCA formula allocations and supplemental awards.
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The EMA in the state with poor Medicaid coverage will therefore have relatively fewer resources to devote to support services, since their RWCA funds must be used to cover basic primary medical care. TITLE I SUPPLEMENTAL AWARD PROCESS Congress divides Title I funds into two components, designating half for the formula-based awards and half for supplemental awards.
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. The detailed algorithm for determining final supplemental awards is not made public.
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· The level of unmet need among populations who are underrepresented in the CARE-funded system, based on utilization data for all covered services (HRSA, 2001a) .4 Comorbidity, Poverty, and Insurance Status The EMA must also provide information on the incidence of six comorbid conditions: tuberculosis, syphilis, gonorrhea, intravenous drug use, other substance use, and homelessness.
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3. The estimated number of persons in these special populations with HIV infection, including AIDS.
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Scientific soundness of the measure: 1. Validity: Does the measure capture what it purports to measure?
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4. Potential impact: Considering the prevalence and seriousness of the problem and the potential for improvement, measures of resources that could have the greatest impact on persons living with HIV infection are desirable.
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The Committee found considerable variability in the actual data sources and measures, and the quality of those data sources and measures, used by grantees to describe their severity of need. HIV/AIDS Epidemiology The first component of the severity-of-need section requires grantees to report data on AIDS incidence, AIDS prevalence, and HIV prevalence.
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6Kahn and colleagues (2003) reviewed 142 studies including all 51 RWCA Title I supplemental applications for FY2001 and 10 Title 1 FY2002 applications; 78 Title I and Title II needs assessments, comprehensive plans, and special studies by grantees; and 12 academic studies.
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. State health departments most often provided this information, although EMAs also relied on local health departments, state substance abuse agencies, and the federal Substance Abuse and Mental Health Services Administration (SAMHSA)
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that grantees are required to or choose to report in their applications. EMAs' relationships with these data providers also vary widely: some EMA representatives reported good relationships with state correctional facilities and substance abuse agencies, for example, while others reported difficulty in obtaining data from them (Ryan White CARE Act 2002 Grantee Conference, August 2223, 2003, Washington, DC: Meeting with Title I EMAs)
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Total prevalence rate 45 21 30 13 1 Primary & secondary 5 2 3 2 rate Infectious syphilis 2 1 2 Congenital rate 2 1 1 1 Early latent rate 1 1 1 Incidence rate 1 1 1 Did not report 1 Gonorrhea (Total EMAs Reporting = 50) Prevalence rate 49 20 33 14 1 Incidence rate 1 1 1 Did not report 1 Injection Drug Use (Total EMAs Reporting = 50)
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7 (state drug 4 (county 3 (SAMHSA) 7 abuse agency)
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substance abusers (no clear definition) Estimated number using 9 2 2 1 marijuana Use of illicit drugs 6 1 5 Methamphetamine users 6 1 3 Psychedelic/ 4 1 hallucinogen users Did not report 3 Estimated number 3 1 1 needing treatment for SA problem Inhalant users 3 1 Number of admissions 2 1 1 for SA treatment Smoking/tobacco use 2 Binge drinkers 2 1 Estimated number using 2 1 stimulants Meth, PCP, benzo, 1
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abuse agency) 1 (state drug abuse agency)
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Low-income and working poor families and individuals for FY2000 1 1 Not reported 1 POVERTY AND INSURANCE STATUS INDICATORS Insurance Status (Total EMAs Reporting = 51) Estimated # of people 48 12 2 without insurance, including without Medicaid
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3 2 (community 9 (census) 5 11 planning report)
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below poverty Not reported 1 CDC = Centers for Disease Control and Prevention CPS = Current Population Survey SHD = State health department DOL = Department of Labor LHD = Local health department HRSA = Health Services and Resources Administration SAMHSA = Substance Abuse and Mental Health Services Administration NIMH = National Institute for Mental Health
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1 (census) 1 CHSI = Community Health Status Indicators NIDA = National Institute for Drug Abuse DSS = Department of social services CBO = Community-based organization KFF = Kaiser Family Foundation BRFS = Behavioral Risk Factor Survey NHSDA = National Household Drug Abuse Survey SHAS = Supplement to HIV/AIDS Surveillance
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, although other EMAs used the Census Bureau's Current Population Survey (CPS) ,7 the Kaiser Family Foundation's State Health Facts,8 and other state agencies.
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The majority of EMAs obtained optional data on comorbid and other conditions from the state health department, while a few relied on data from CDC and other federal agencies such as the Substance Abuse and Mental Health Services Administration and the National Institute of Mental Health. Again, the lack of standardization of measures and inconsistency in the quality of the data makes comparison across areas very difficult.
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Number receiving mental 3 1 2 1 health services Estimated total severely 2 1 1 mentally ill Daily average in mental 1 1 health hospitals Mentally ill chemically 1 addicted Estimated # PLWH with 1 1 severe mental illness Multiply diagnosed 1 1 (SMI, SA, HIV) Mental illness based on 1 psychiatric hospital data Estimated # with 1 1 schizophrenia Estimated # with 1 1 bi-polar Estimated # with major 1 1 depression
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1 (National Alliance for the Mentally Ill) 1 (pysch hospital)
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Incarcerated 3 Number on parole or 1 probation Domestic Violence (Total EMAs Reporting = 2) Number of domestic 1 violence victims Case rate per 100,000 1 Other Venereal Diseases (Total EMAs Reporting = 2)
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ESTIMATING RESOURCE NEEDS 163 Other Federal or National Academic No Other State Other Local Org Research Source 1 2 (Bureau of Justice) 1 1 1 (fed/city justice dept)
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Birth rate among 1319 yo 1 1 women (1) CDC = Centers for Disease Control and Prevention CHSI = Community Health Status Indicators CPS = Current Population Survey NIDA = National Institute for Drug Abuse SHD = State health department DSS = Department of social services DOL = Department of Labor CBO = Community-based organization LHD = Local health department KFF = Kaiser Family Foundation HRSA = Health Services and Resources Administration BRFS = Behavioral Risk Factor Survey SAMHSA = Substance Abuse and Mental Health Services Administrations NHSDA = National Household Drug Abuse Survey NIMH = National Institute for Mental Health SHAS = Supplement to HIV/AIDS Surveillance
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ESTIMATING RESOURCE NEEDS 165 Other Federal or National Academic No Other State Other Local Org Research Source
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166 MEASURING WHAT MATTERS TABLE 5-4 EMAs Reporting on Populations with Special Needs FY2002 Recently/ Soon-To-Be African Released from EMA Homeless Americans Latinos Jail or Prison SUBPOPULATIONS DESCRIBED IN TABLE 6 OF THE SUPPLEMENTAL APPLICATION* Atlanta, GA x Austin, TX Baltimore, MD x Bergen-Passaic, NJ x x x x Boston, MA Caguas, PR Chicago, IL x x Cleveland, OH x Dallas, TX x Denver, CO Detroit, MI Dutchess County, NY Ft.
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ESTIMATING RESOURCE NEEDS 167 Rural Mentally Immigrants & Individuals Incarcerated Ill Undocumented Other x Surrounding counties Suburban residents x x Haitians x x x x Pediatric patients x Transgender x x x x 45 and over Deaf; Native Americans x x x x Relocated <2 yrs to C Valley Continued
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In addition, no reliable estimates exist for the overall size of several of the special populations, such as homeless or transgender populations, much less for the proportion of those populations with HIV. FINDINGS Applicants for Title I supplemental awards are asked to supply a tremendous amount of information about the epidemiology of HIV infection and AIDS, the prevalence of various comorbid conditions, poverty and insurance status, and populations with special needs.
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For example, the application asks grantees to provide HIV prevalence information for their area and for "special populations," but consistent estimates of HIV cases are not available at the EMA level, much less for special populations such as homeless or transgenders. Furthermore, many measures (e.g., comorbidities)
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In FY2002, for example, the correlation in per-ELC supplemental and base awards was 0.87, indicating a close correspondence between the base and supplemental awards. Although the use of idiosyncratic indicators of need makes comparisons across EMAs nearly impossible, discussions with Title I representatives suggest that some EMAs find the process of compiling a supplemental application useful for their own local planning efforts (Ryan White CARE Act 2002 Grantee Conference, August 2223, 2003, Washington, DC: Meeting with Title I EMAs)
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The first book presents data from 90 metropolitan areas in 30 states and the District of Columbia, including 354 counties and 171 cities. The data describe the health care safety net where 80 percent of Americans with family incomes below the federal poverty line live.
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All grantees now report data to HRSA using the Ryan White CARE Act Data Report (CADR) .10 The CADR asks grantees to provide information on hundreds of data elements, such as client characteristics, service provision, and the costs of providing care.
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Although the Committee did not find any direct measures of resource needs, the HIV Cost and Services Utilization Study (HCSUS) -- an interview study of a probability sample of noninstitutionalized HIV-infected U.S.
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The questionnaire consists of modules involving demographic-socioeconomic information; drug use history, both injected and noninjected; sexual behavior history, including information about STDs, and use of health care services; reproductive history and children's health of women with HIV infection or AIDS, and information on disabilities treatment and adherence. This information supplements the data routinely collected through national HIV and AIDS surveillance and is used to improve our understanding of a variety of issues related to the epidemic of HIV infections for use by prevention programs.
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ESTIMATING RESOURCE NEEDS 175 Funding Information Locations Year Total Arizona 2000 $1,937,637 Atlanta, GA 2001 $2,110,588 Austin, TX 2002 $2,903,831 Chicago, IL Delaware Denver, CO Detroit, MI Hartford, CT Houston, TX Jacksonville, FL Jersey City, NJ Kansas Los Angeles County, CA Maryland Miami, FL Minnesota New Haven, CT New Mexico Philadelphia, PA Richland and Charleston Counties, SC Tampa, FL Washington Houston, TX 2000 $243,061 Louisiana 2001 $559,364 Maryland 2002 $235,532 Michigan New Jersey Ohio Philadelphia, PA Puerto Rico Virginia Washington Continued
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The interview project incorporates standard behavioral surveillance questions on HIV testing, risk, care seeking, and other related behaviors. This project allows the evaluation of behavioral findings (including access to care, HIV and OI therapy adherence, client perception of value of therapies, disclosure of HIV infection, etc.)
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ESTIMATING RESOURCE NEEDS 177 Funding Information Locations Year Total Michigan 2001 $328,367 New Jersey 2002 $240,000 Seattle, WA Atlanta, GA 2000 $2,005,836 Bayamon, PR 2001 $2,371,683 Dallas, TX 2002 $2,094,018 Denver, CO Detroit, MI Houston, TX Los Angeles County, CA New Orleans, LA New York, City, NY Seattle, WA Continued
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The primary objective of the HITS is to identify the reasons that persons at risk for HIV infection may seek or defer HIV testing and HIV-related health care, and the role state HIV testing and reporting policies play in the decision, to assess whether HIV case reports underrepresent some populations and to improve HIV prevention planning. Additional objectives for HITS are to evaluate the influence of recent events, such as availability of drug therapies and new testing methodologies, on persons' decisions to seek HIV testing.
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ESTIMATING RESOURCE NEEDS 179 Funding Information Locations Year Total Arizona 2000 $199,999 California 2001 $1,252,205 Colorado 2002 $1,581,088 Florida Houston, TX Illinois Kansas Los Angeles, County, CA Louisiana Maryland Michigan Mississippi Missouri Nevada New Jersey New Mexico New York New York City, NY North Carolina Ohio Oregon Philadelphia, PA Portland, OR San Francisco, CA Seattle, WA Texas Vermont Washington Continued
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From page 180... ...
to HIV/AIDS registries in order to improve ascertainment of mother-infant pairs, and to collect supplemental information on both mothers and infants from a variety of medical records, including mother's prenatal care chart, labor and delivery chart, and the infant's birth chart and pediatric chart. In areas where HIV infection is not reportable by name a hospital-based approach to identify mother-infant pairs is pursued rather than the population-based approach which is feasible in HIV-reporting states only.
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ESTIMATING RESOURCE NEEDS 181 Funding Information Locations Year Total Alabama 2000 $1,866,553 California 2001 $1,874,431 Chicago, IL 2002 $1,814,324 Connecticut District of Columbia Houston, TX Los Angeles, CA Louisiana Maryland Massachusetts Michigan New Jersey New York New York City, NY North Carolina Ohio Pennsylvania Philadelphia, PA Puerto Rico South Carolina Tennessee Texas Virginia Boston, MA 2000 $199,999 Chicago, IL 2001 $319,593 Denver, CO Hartford, CT Los Angeles, CA San Francisco, CA
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Using these data, the Committee calculated a variable called "number of needs," which is simply the number of these questions that the respondent answered affirmatively. The Committee selected several county characteristics that it considered representative of the kinds of variables that are likely to be related to resource needs for HIV care.
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The predictive value of such variables needs to be tested. However, it is important to recognize that many of the measures that grantees now report on their supplemental applications might not be related to resource needs.
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Recommendation 5-3 HRSA/HAB should evaluate the feasibility and usefulness of using social area indicator models based on pub licly available data that are collected in standardized ways across jurisdictions, to estimate EMA-level resource needs for the Title I supplemental award. This approach also might be useful in assessing resource needs for other RWCA discretionary grant programs.
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Examples used in this report were needs and unmet needs reported by persons living with HIV infection and total costs of care. However, none of these measures captures the resource needs that are most appropriately provided by RWCA funds.
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Developing Epide miologic Profiles for HIV Prevention and Ryan White CARE Act Community Plan ning -- Grantee Training Meeting. Atlanta, GA: CDC.
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National ADAP Monitoring Project Annual Report. NASTAD, Kaiser Family Foundation, AIDS Treatment Data Network.
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