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Developing HIV/AIDS Model of Care for a Community Based Health Center

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The Charles Drew Health Center located in the Midwest was seeing an increasing number of People living with HIV/AIDS.  I worked with senior managment to develop a model of HIV care that would be appropriate for their clients.  The project had three objectives: To conduct a needs assessments among patients, 2) determine if HIV/AIDS primary care should be provided, 3) develop and HIV Model of care based upon the needs assessment.  This is the second report in this project and represents a needs assessment among patients of the Health Center and recommends a model of care.

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Developing HIV/AIDS Model of Care Appropriate for the Charles Drew Health Center
Presented to: Charles Drew Health Center September 2003
Submitted by: Partnership for Community Health, Inc. 245 W. 29th Street Suite 1202 New York, NY 10001 Primary Contact: Mitchell Cohen, PhD Telephone: 212 564 9790 x 26 Fax: 212 564 9781 Email: Mitchell@PCHealth.org
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Table of Contents INTRODUCTION ................................................................................................................................................1 METHODOLOGY ...............................................................................................................................................2 Phase I ...............................................................................................................................................................2 Review of Secondary Information ................................................................................................................2 Key Informant Interviews .............................................................................................................................2 Phase II ..............................................................................................................................................................2 Consumer Survey..........................................................................................................................................2 Executive Participation .................................................................................................................................2 REVIEW OF SECONDARY INFORMATION ................................................................................................3 North Omaha Demographic...............................................................................................................................3 HIV/AIDS Overview .........................................................................................................................................4 Need for Ryan White Funded Services..............................................................................................................5 Out-of-Care........................................................................................................................................................5 Care Environment..............................................................................................................................................5 Capacity .............................................................................................................................................................7 NEEDS OF PLWH/A ...........................................................................................................................................7 Demographic Profile of Sample ........................................................................................................................7 Stage of Infection...............................................................................................................................................7 Health Status......................................................................................................................................................8 Access to Medical Care .....................................................................................................................................8 Medical Outpatient Care ...............................................................................................................................8 Preferences and Reasons for Selecting a Provider ........................................................................................9 Dental Care ...................................................................................................................................................9 Other Support Services ...............................................................................................................................10 Quality of Health Care ................................................................................................................................10 HIV Prevention ...........................................................................................................................................10 Barriers .......................................................................................................................................................11 ASSESSMENT OF MODELS OF CARE AND OPERATIONS ...................................................................11 CDHC Mission and Services ...........................................................................................................................11 Current Models of Accessing Care ..................................................................................................................12 Appropriateness of the Models for HIV/AIDS Care .......................................................................................13 Outpatient Care ...........................................................................................................................................13 Case Management.......................................................................................................................................14 Testing and Referrals ..................................................................................................................................14 Other Models for CDHC to Consider ..............................................................................................................15 Preparing Populations for Care ...................................................................................................................15 Holistic Care Model....................................................................................................................................15 Barriers for CDHC...........................................................................................................................................16 Potential Funding Sources ...............................................................................................................................16 RECOMMENDED ACTIONS..........................................................................................................................18 Funding............................................................................................................................................................18 LOA for Referrals and Services.......................................................................................................................18 Outreach ..........................................................................................................................................................19 Counseling and Testing ...................................................................................................................................19 Community Heath Education and Risk Reduction ..........................................................................................19 Attachments Attachment 1 Secondary Sources of Information Attachment 2 Key Informants1 Attachment 3 List of Questions for Key Informant Interviews Attachment 4 Consumer Survey Attachment 5 Methodology for Consumer Survey Attachment 6 Analysis Tabulations for PLWH/A i
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Developing HIV/AIDS Model of Care Appropriate for the Charles Drew Health Center By Partnership for Community Health Presented to: Charles Drew Health Center September 2003 INTRODUCTION Charles Drew Health Center (CDHC) is a 330-funded community health center located in North/Northeast Omaha, Nebraska. In 2001 CDHC received a Ryan White Title III Planning Grant. The grant has three objectives: 1. To convene the patient needs assessment to provider and additional consumers within the African American Community . 2. Continue the work with the established planning task force who will be charged with reviewing the findings of the needs assessment, and make recommendation as to whether or not any Primary Care Service should be provided by Charles Drew Health Center to the HIV/AIDS population. 3. Develop an HIV Model of care based upon the needs assessment (consumers and providers) recommendations from the planning task force and key staff of CDHC CDHC requested that HRSA provide technical assistance for completing the third objective. Through a HRSA1 Technical Assistance (TA) program administered by Betah Associates, Inc.2, Mitchell Cohen, PhD from the Partnership for Community Health (PCH), a not-forprofit health care group specializing in HIV and AIDS, was contracted to assist in developing a model of HIV and AIDS care that would be appropriate for the CDHC. To achieve this goal, PCH conducted a two-phase project. The first phase assessed the current model of care and reviewed secondary information. Activities included meeting with CDHC staff and other providers in Omaha and reviewing secondary data and information such as Ryan White Title applications, epidemiological profiles, and existing reports and activities. The goal was to assess the current model of care and operations and suggest potential models of HIV/AIDS care. A report was submitted in September 2003. The second phase analyzed consumer need data which was collected by CDHC, reviewed and refined models of care suggested in the Phase I report with executives at CDHC, and developed recommendations on the models of care appropriate and agreed upon as feasible by the CDHC. This report includes the data analysis of the consumer survey and the final recommendations.
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Dr. John Maynard is the contract officer at HRSA for this grant. Mr. Wayne Hartzell is the project officer at Betah for this TA.
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METHODOLOGY Phase I Review of Secondary Information For Phase I, PCH reviewed several documents shown in Attachment 1. This allowed a regional overview of HIV/AIDS and a determination of the need and capacity of the existing HIV/AIDS care system. Key Informant Interviews Dr. Cohen from PCH conducted 20 key informant interviews on September 11 and 12, 2003 with persons listed in Attachment 2. Prior to interviews, key informants were sent the list of questions shown in Attachment 3. The final product of Phase I was a report summarizing the findings, including suggested models of HIV/AIDS care, delivered in September 2003. Phase II Consumer Survey For Phase II, PCH analyzed a consumer survey conducted by CDHC of 48 clients in their catchment area. The questionnaire developed by CDHC is shown in Attachment 4, and the methodology for the survey is shown in Attachment 5. Executive Participation Dr. Cohen met with Executive Director Dr. Richard Brown, Medical Director Dr. Gregory Ochuba, and Prevention Program Coordinator Ms. Jacqueline Cook to review findings and recommendations in the Phase I report and discuss the appropriate models of HIV and AIDS care that would be embraced by the CDHC. Consumer input from the survey was considered in deciding on appropriate models.
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REVIEW OF SECONDARY INFORMATION North Omaha Demographic Charles Drew Health Center, established in 1983, is a not-for-profit health care clinic located in North Omaha, Nebraska. As shown in Figure 1, North Omaha houses the majority of Omaha’s African American populations. The circle is the main clinic site. Figure 1 Map of CDHC Catchment Area
The CDHC targets members in its socio-economically distressed area. The ethnic profile of North Omaha is 54% African American, 42% Anglo, 1.9% Hispanic, 1.3% Native American, and less than 1% other ethnicities. This is in contrast to a state where African Americans represent 4% of the overall population, in contrast to the Omaha Standard Metropolitan Area where African Americans represent 8% of the population, and the city of Omaha where African Americans represent 13% of the population. It is estimated that up to 33% of all persons living in this area are uninsured and up to 39% of all eligible Medicaid persons in Nebraska live in this area. This is in contrast to an estimate that 9% of the population of Nebraska is uninsured. About half of its clients are uninsured, with just under 40% having Medicaid. Thirteen (13%) percent have private insurance or
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Medicare. Not only does CDHC have a track record that documents care to this special population, but it also has an experienced staff that is reflective of the clients they serve. HIV/AIDS Overview Nebraska has had HIV surveillance since 1995 through voluntary HIV testing. At the end of 2002, there was a reported 1,145 persons living with HIV/AIDS. However, this is a low estimate because it does not include those who tested HIV positive anonymously and does not include positive persons who have not been tested. Typically CDC uses an estimate of 1.6 times the number of living AIDS cases to calculate an estimate, yielding about 1,450 PLWH/A in Nebraska. Another estimate is that as many as 50% of those infected do not know their status, which would result in an estimate of about 1,440 PLWH/A. Add to that number those in Council Bluffs, Iowa who seek care in Omaha and it is safe to say that there are over 1,500 PLWH/A who might access the care system. Out of that figure roughly two-thirds live in the Midlands Health Planning Region which includes Omaha, Lincoln and Council Bluffs. That translates into nearly 1,000 PLWH/A in the Omaha area. Though the rate of increase has remained stable for the past two years in the Anglo population, the infection rate in the African American population is increasing. Minorities are disproportionately represented in the demographics of the HIV epidemic in the Omaha EMA. African Americans, who represent only 4% of the State’s population, represent 19% of the cumulative reported AIDS cases and 25% of HIV cases reported during 2002. In Omaha about 75% of clients are men and 25% are women. Roughly half are Anglo, about a third are African American, and 11% are Latino. The remaining 5% are other ethnicities including Asian Pacific Islander and Native American. Notably, the racial breakdown for those receiving ADAP shows that 22% are African American, which is lower than their proportion in the epidemic. About 58% who receive ADAP are Anglo and 19% are Latino.3 Risk group is more difficult to assess from the available statistics. Probably 50% to 60% are MSM or MSM/IDU. IDUs may be 10%, and they are disproportionately African American4, and therefore disproportionately in the catchment area of CDHC. That would leave the majority of the remaining 30% being heterosexual or of unknown status (plus the small number of pediatric and blood-related infections). Notably unknown status is the fastest growing risk group category. The trend in the epidemic indicates a growing number of cases among communities of color and women. In 1995 women accounted for only 10% of AIDS cases, but this has risen to 33% in 2002. People of color represented 24% of the 1995 AIDS cases but increased to 38%
The client profile of those in-care is estimated from the 2003 HIV/AIDS surveillance report and client profiles provided by Nebraska AIDS Project (NAP) and the University of Nebraska Medical Clinic (UNMC). 4 It is estimated that there are approximately 3,000 intravenous drug users in the state of Nebraska, 40% of which are African American.
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in 2001. Heterosexual contact without IDU accounted for a handful of cases in 1995, but up to 28% of the cases in 2001. Need for Ryan White Funded Services From available data, of the estimated 1,500 PLWH/A who access the Nebraska care system and the 1,000 PLWH/A in the Omaha area, between 900 and 1,100 PLWH/A access primary care and/or case-management services reimbursed by Title II or Title III. A summary report from HRSA indicates that in 2001, 382 clients were served under Title II. Just over 675 clients were served under Title III EIS for primary health care, and 866 received case management assistance. Three hundred persons received medication reimbursement through ADAP. The University of Nebraska Medical Center (UNMC) reports seeing 669 PLWH/A in 2002. The largest non-primary care AIDS Service Provider, Nebraska AIDS Project, funded though Title II and other private and State funding reports serving over 650 clients in the first 8 months of 2003. Many of these clients were also seen at the primary outpatient clinic at the University of Nebraska or at other clinics and private doctors serving PLWH/A. Most of the other clinics, however, see patients with insurance. Out-of-Care Estimates of out-of-care for Nebraska are not very precise. Conservatively it may be assumed that up to 60% of the HIV cases are among people who do not know their status or have tested anonymously and therefore are not reflected in the reported HIV statistics. That would mean that as many as 300 to 400 persons in the Omaha area are positive but are unaware of their status. Based on epidemiological trends in the epidemic and the fact that nearly half of the new chlamydia cases and nearly two-thirds of the gonorrhea cases in Douglas County are among African Americans5, it is safe to say that African Americans represent a disproportionate number of those cases. Many of those live in the CDHC catchment area. Care Environment Nebraska received about $3.8 million through HRSA and CDC for HIV/AIDS care and prevention. Table 1 shows how these funds are distributed. Table 1 HIV/AIDS Funding
HIV Prevention Ryan White - Title II Ryan White - Title III Ryan White - Dental Agency Centers for Disease Control & Prevention Health Research & Services Administration Health Research & Services Administration Health Research & Services Administration Amount $1,342,688 $1,610,116 $809,071 $18,039
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Key informant interview with Liz Berthold, Manager of HIV/STD at the STD Control.
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The CDC funds are allocated to state and local health departments and community-based organizations to finance counseling and testing programs, public information and health education/risk reduction activities, and monitoring/surveillance programs. Title II funds helps state health departments improve the quality, availability, and organization of HIV/AIDS health care and support services. This title also contains the AIDS Drug Assistance Program (ADAP), which provides low-income individuals with lifeprolonging medications. Nebraska received $1,610,116 in CARE Act Title II funds, which includes a proposed $947,262 for ADAP as well as $7,180 to support educational and outreach services to help disproportionately impacted communities of color improve their participation in ADAP through the Minority AIDS Initiative. Most of the Title II funds support general case management for PLWH/A. The main provider is the Nebraska AIDS Project (NAP), a statewide agency with over 60% of their clients coming from Omaha. NAP also offers transportation, outreach, mental health services, and various prevention programs directed at different at-risk populations. In addition NAP provides HIV counseling and testing services and conducts the greatest number of HIV tests in the State. NAP runs the Watanabe Wellness Center which offers a safe haven for PLWH/A. It provides aggregate meals (breakfast and lunches), a resource library with computers, and a living room for relaxation and social support. Massage and other complimentary therapies are also offered. NAP and UNMC jointly run the AIDS Education Training Center (AETC) grant. NAP received about $1.4 million in 2002 from programs. About 37% came from federal grants, 24% from special events, 22% from other grants and 12% from contributions. Title III supports Early Intervention Services (EIS) grants to provide services for lowincome, uninsured, and underinsured HIV-infected individuals. Title III also funds planning grants to help rural or underserved communities develop high-quality HIV primary care. Nebraska received $809,071 in Title III funds. University of Nebraska Medical Center (UNMC) receives all the Ryan White Title III funding for medical care and provides most of the outpatient medical care and dental care for HIV positive individuals within Omaha. UNMC is within a five mile radius of the CDHC and relatively accessible to patients. Creighton Medical Center also has a significant number of patients living with HIV and AIDS and is near the catchment area of the CDHC. UNMC spends about $736,000 to provide primary care and other programs. Physicians are not paid though these funds. In 2002 they received $528,500 from Ryan White Title III and $169,527 from third-party payers. The remaining amount came from other programs and sources. In addition to NAP and UNMC, the Douglas County Hospital provides mental health services to the uninsured. For additional information, the State Health and Human Services Department maintains a web site at ww.hhs.state.ne.us/dpc/resources.htm.
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Capacity In general, the Omaha area appears to have sufficient capacity to provide medical outpatient care to PLWH/A in the Omaha area. They may have sufficient dental care as well, but this needs further research. Recently added mental health professionals may fill a gap for needed services. While there may be sufficient capacity, other barriers may contribute to persons who know they are positive to be out-of-care or have delayed care. Particularly African Americans may feel that they are discriminated against or that current providers are not sensitive to their issues. Research into their needs and barriers is part of Phase II of this consultancy. NEEDS OF PLWH/A The needs of PLWH/A were determined from the 48 surveys among PLWH/A conducted by CDHC. Although the sample size limits the generalizability of the findings, 48 represents over 20% of all African American PLWH/A who seek care. Below key findings from the survey are highlighted. A full set of tabular analysis can be found in Attachment 6. Demographic Profile of Sample • The survey achieved the goal of interviewing PLWH/A in the CDHC catchment area. Thirty-nine out of the 48 (81%) participants are African American, the largest community in North Omaha. In general over 70% of PLWH/A are male and 71% (N=34) of the sample are male. The age profile is consistent with the middle-aged client base seeking HIV/AIDS services with 77% (N=37) thirty-six years old or older. High school is the highest level of education attained by the majority (68%) of the participants.
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Stage of Infection Figure 2 shows that almost 40% of the participants have had HIV for longer than eight years. However, reflecting the increased impact on the African American community, a large percent (21%) are new to the epidemic and have had HIV for less than one year.
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Figure 2 Length of HIV Infection
Less 1 yr 21% > 8 years 39% 1 to 3 years 12%
3 to 8 years 28%



Twelve of the participants (25%) have had an AIDS diagnosis. One has had a diagnosis for less than a year, six for three to five years, and five have had an AIDS diagnosis for more than eight years. Sixty-nine percent of the PLWH/A recall having had a CD4, with 18 of them having had a test in 2003. However, the majority of the participants are unaware of their CD4 count. Of the half who knew their CD4 cell count, over 40% said it was below 200, and this is consistent with the number who reported living with AIDS. Seventy-nine percent of the PLWH/A have had a viral load test; 58% have had a viral load test in 2003. Among those tested, 75% have had four or more viral load tests.
Health Status Nearly half (47%) of those in the sample report having moderate to very severe bodily pain over the past two months. However, 67% of the participants feel that overall their current health is the same or better than a year ago. Access to Medical Care PLWH/A were asked where and how they access HIV and AIDS care, including how it is paid for. About one third of the participants report having Ryan White as their medical care coverage. Thirty-two percent report having Medicaid, 21% have Medicare, and nine percent have private insurance. Medical Outpatient Care Figure 3 shows that 58% (N=27) of the PLWH/A consider their HIV specialist their primary health care provider. Ten PLWH/A consider their general practice physician their primary health care provider. Two participants report using the VA as their primary source of care
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and two mentioned using the university hospital. One participant reports not having a primary provider. Figure 3 Source of Medical Care
Do not have provider 2% Any provider at hospital or clinic 4% PA/ RN practitioner 4% Other 11% general physician 21%
HIV specialist 58%
Preferences and Reasons for Selecting a Provider The most common reasons for selecting these sites were expertise of provider, closeness to home, and staff sensitivity. • When asked where they would go if they could get health care anywhere they wanted, less than half (40%) of the sample named a site. Six said they would go to the University of Nebraska Medical Center, five would go to Charles Drew, two to NAP, and six would go to some other site. • When asked who they would go to if they could get health care from anyone they wanted 13 participants responded; 10 would go to a specific doctor, two would go to the VA, and the thirteenth would go to an expert. • The reasons for choosing these providers were level of expertise and staff sensitivity. The top reasons included the provider’s thoroughness and accuracy (40%), the attention, courtesy and respect shown by staff (40%), convenience of the location (38%), the availability of treatment (38%), and the provider’s skill and experience treating HIV infected individuals (38%). • If HIV related problems were to develop in the middle of the night 69% of the PLWH/A would go to an emergency room. Only 15% would call their primary doctor and eight percent feel that they would not know what to do. • On average, PLWH/A travel about four miles to get to their primary health care provider, with four participants traveling more than 10 miles. Dental Care The majority of the survey respondents received dental care, but continues to be a high need with 42% not seeking dental care. Compared to other ethnicities in the sample, African Americans are less likely to seek dental care. •
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Among PLWH/A who use dental care, 15 go to the local public health clinic, six go to a private doctor, and three go to the university medical center. A major barrier in seeking dental care is fear of lack of confidentiality. Other Support Services In addition to dental care and HIV care or prevention services, the participants also reported needing the following services shown in Table 2. • Case management is the most needed service followed by transportation, and medications. • Support groups and transportation have the greatest unmet need. • Women report higher needs for services than men. Table 2 Service Needs
Service Needed Social work/case management Transportation Pharmacy/Medications Counseling/support group Drug abuse treatment % in Need 92% 74% 73% 66% 28% Need not met 5% 25% 4% 27% 8%
Quality of Health Care Survey participants responded to several questions about the quality of their care. • • • The majority of the participants (65%) feel that the overall quality of their medical care is very good to excellent. Two-thirds also feel that their primary care provider’s knowledge of HIV/AIDS treatment is very good to excellent and 90% feel that their provider is well educated on HIV. Seventy-four percent of the participants feel that their providers are able to provide referrals when necessary.
HIV Prevention A series of questions were asked about HIV prevention and behaviors related to prevention. • Forty percent of the participants report disclosing their HIV status to their sexual partners. However, 21% report never revealing their HIV status, with men being more likely than women not to disclose their status. Seventy five percent of the PLWH/A feel they have enough information about HIV transmission. Men and PLWH/A older than 35 years of age are more likely to feel they have enough information than women or younger PLWH/A.

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Fifty-four percent would like more information about HIV transmission, with 72% being interested in more information about heterosexual transmission. Men and women are equally interested in this type of information. Yet, younger PLWH/A (i.e., less than 35 years) and African American PLWH/A are less interested in heterosexual transmission. Thirty-two percent would like information about mother to child transmission, and 31% would like information about MSM transmission. Forty-seven of the participants would like to receive information in person or through the mail. Women and younger PLWH/A would prefer to receive information by telephone.
Barriers Participants were asked about barriers to care in several items. Among participants who report fair or poor medical care, the main reasons for not receiving higher quality medical care included 1) not having transportation (57%), 2) not being able to afford medications (57%), and 3) not being able to afford quality health care (29%). While fear of loss of confidentiality was frequently mentioned in key informant interviews, only 4 participants report confidentiality as the main reason for not using the local health care provider. Lack of transportation represents a barrier for PLWH/A that prevents them from getting to their appointments. Table 3 shows the percentage of participants who report having difficulty getting to specific services because of their transportation needs. Table 3 Services Limited by Transportation
Service Support Groups HIV advocacy programs Social Services Doctor’s appointment % With Difficulty 57% 49% 43% 41%
ASSESSMENT OF MODELS OF CARE AND OPERATIONS CDHC Mission and Services The mission of the CDHC is to “provide quality comprehensive health care in a manner that acknowledges the dignity of the individual, the strength of the family, and the supportive network of the community. Today CDHC provides health care services at four different locations in North Omaha including its main clinic, two outreach clinics at a drug abuse facility and homeless shelter, and a WIC program site. Services include: • Medical care • Dental care • Mental health services • WIC
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Nutritional programs Optical care Pharmacy Radiological services Several community outreach/prevention activities including confidential/anonymous HIV counseling and testing.
With assets of about $4.4 million, CDHC receives 29% of its revenue from patient fees, 19% from grant activities, and 47% from unrestricted support from such agencies as the United Way. In addition the pharmacy adds 3% of the revenue and interest income contributes 1% of the revenue. The largest program is Omaha Healthy Start ($776,005) with a goal of reducing infant mortality in North and Northeast Omaha through case management, awareness, training and education targeted to pregnant women and women and fathers with children less than two year of age. The second largest source of funds is from the State’s Public Health Service (PHS) which contributes about $440,000 for medical and social services to the un- and under-insured. The third largest contribution to the budget is from third party and direct payment for services of about $247,000. Other sources of revenue are from WIC, HUD, Medicaid, dental services, and tobacco settlement funds. Current Models of Accessing Care CDHC offers a comprehensive array of health care services that provide a “one-stop shop” for residents of North Omaha. They include basic health care for adults and children as well as preventive screening and immunizations. CDHC combines several methods of accessing care to provide residents of North Omaha with multiple points of entry. For outpatient care patients access medical, dental, vision, and mental health care through a combination of appointments, drop-in, and/or follow-up. Patients see available clinic staff. Physicians are general practitioners. In addition to a clinic, CDHC has a very strong outreach model where they take services to clients. There are satellite clinics in a homeless shelter and a drug treatment program. There is limited use of a mobile van for outreach and education. For patients with chronic and ongoing health care needs, case managers assist clients with benefits and orchestrate continued individual and family care. A reported disadvantage in the current system is that waiting periods can be long and even scheduled appointments often have a long waiting period. It should be noted that this barriers has been recognized, and the implementation of a new scheduling system and protocols for seeing patients within 40 minutes should improve access to care.
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CDHC has a sliding fee scale based on income and family size. Given the current availability of low cost Ryan White reimbursed care, even a small sliding scale fee may be viewed as uncompetitive with other existing programs. Appropriateness of the Models for HIV/AIDS Care Outpatient Care The model of access to care at CDHC is not a strong candidate for incorporating HIV/AIDS medical services, either directly to the clients or based on referrals. Most PLWH/A have to receive ongoing and scheduled care, and long waiting periods and being seen by a general practitioner with limited HIV/AIDS expertise or experience will not be well received. An infrastructure will have to be created where HIV/AIDS specialists are on staff or hired as consultants and the new appointment system is customized to the needs of PLWH/A. The in-house pharmacy will be a great convenience to PLWH/A and will produce a modest profit for CDHC. However, the pharmacy will have to stock and be trained in the administration of HIV/AIDS medication, and the pharmacy and/or accounting office will have to become familiar with the ADAP formulary and filing for reimbursement. There are also specific Medicaid and Medicare directives for administering and billing for HIV/AIDS medication. The largest advantage the clinic has is proximity to and reputation for servicing African Americans. Still, the clinic will be competing with UNMC and other private doctors and clinics located in, or near, North Omaha. Although the number of African Americans infected are increasing, the clinic is likely to serve no more than 100 clients, and probably far less.6 In addition, a large proportion of African Americans living with HIV/AIDS are MSM or bisexual and, compared to the general African American population, disproportionately drug users. This means that CDHC staff would have to be aware of the special needs of these subpopulations. For clients to change clinics they would have to be dissatisfied with existing care, and there is little evidence from the consumer survey that they are dissatisfied. While a small minority of African Americans feel the existing system does not meet their specific needs, there is not evidence that there would be a large number of defections from UNMC or other private clinics for out-patient care. The proximity of UNMC to CDHC further suggests that proximity would not be a significant advantage for CDHC. If CDHC were to provide van transportation, it would be a significant enhancement, but the cost of providing a large number of clients with door-to-door service would be high.
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There are about 900 PLWH/A in the care system in Omaha. About 20% are African American. Of the estimated 180 African Americans in care, if a quarter were to migrate in CDHC and the majority of new African Americans chose CDHC, the total number of clients services would be under 100.
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For new clients to select CDHC, they would have to be convinced of high quality of care and expertise, and that may be a difficult reputation to establish in an environment where UNMC and doctors serving AIDS patients have a good reputation and there is ample capacity for new clients in the existing system. The cost of developing infrastructure would depend on the ability of CDHC to receive grant funds. This possibility exists and is explored later in this report. Case Management The case management model offers greater potential for incorporating HIV/AIDS services. This fits well with the overall model of care in Omaha and intensive case-management lends itself well to populations who need support for benefits and reminders and encouragement to maintain clinical visits. Currently staff at CDHC with the knowledge of the HIV/AIDS continuum of care in Omaha is limited. Additional case managers would have to receive training in HIV and AIDS. Clients who receive case management at CDHC could be referred to in-house specialists (provided the clinic develops an in-house expertise) or to other UNMC or other clinics depending on the clients insurance and ability to pay for services. This model would likely place CDHC in competition with NAP. Ideally a cooperative agreement could be established but given the funding structure for Title II, it seems unlikely. If other funding sources could be found, such as Title III or IV, there would be a good possibility of greater cooperation. Testing and Referrals Perhaps the best fit to fill a gap in HIV/AIDS services is fully incorporating HIV/AIDS testing and referrals into the outreach model. From the epidemiology and national trends, there are a disproportionate number of African Americans who are positive but do not know their status, or remain out-of-care once they are aware of their positive status. There is a large need in the community for identifying those persons who are infected with HIV but unaware of their status. CDHC has regular contact with many subpopulations that traditionally have relatively high levels of HIV infection. CDHC’s reputation in the community, and numerous social services provide an opportunity to reach the out-of-care including drug users, homeless, and uninsured African Americans. Reaching this populations is a high priority of HRSA, the administrative agency for the Ryan White Care Act. The general rise in bisexual, unknown, and heterosexual risk of those infected further suggest that the WIC program, healthy start (including women’s health assessment program) are likely to be fertile grounds for identifying undetected people living with HIV and AIDS. For those outreach programs to identify and reach high-risk individuals and then identify clinical symptoms require additional training and follow-up.
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As part of the outreach effort, CDHC could expand its testing and counseling including greater use of its mobile van. In addition, there is a need in the community to reach male bisexual, “down-low”7, and gay populations. This would be a new focus for CDHC, but could fill a gap in reaching an at-risk population. Other Models for CDHC to Consider Preparing Populations for Care Populations living with HIV and AIDS must monitor their infection on an ongoing basis and often maintain a complex medical regimen. Typically African Americans living in or near poverty and with no insurance access care access the care system for acute care, but do not have the resources or experience of using the system to prevent or maintain chronic diseases. In conjunction with other HIV/AIDS providers in Omaha, CDHC could engage in an educational campaign combined with case management that would encourage those living with HIV and AIDS to maintain their care and adhere to the medical regimen. Substantial barriers to accessing and maintaining care are: • Stigmatization of HIV and AIDS in the African American community. • Co-morbidities of homelessness and drug use that are disproportionately high in the African American community. Given the access to the African American community, addressing these barriers through outreach and community educations is a logical extension of CDHC’s services. The biggest barrier to the success of this model is the fear of being identified as a person with HIV and AIDS. Unless the African American community understands that HIV and AIDS are serious illnesses and not negative statements reflecting their sexuality and lifestyle, then the fear of being seen by peers while receiving services at CDHC will be a substantial barrier to overcome. Holistic Care Model CDHC could be a center that provides community-based holistic primary care services to PLWH/A for both acute and chronic illnesses. The co-morbidities of diabetes and high blood pressure, STDs, and other illness that often are diagnosed along with HIV should be treated, and these can be referred from HIV specialists to the CDHC. Along with treatment, CDHC’s pharmacy and its sliding fee structure can be a great asset for people needing to access HIV and non-HIV related drugs. The convenience of the pharmacy and availability of non-HIV medications suggests the expansion of pharmacy services.
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For a interesting discourse on the down-low culture access http://www.youthoutlook.org/stories/2003/07/15/beyond.the.downlow.the.east.bays.gay.black.club.html
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Also CDHC could provide enhanced mental and dental services to PLWH/A, although these services are available elsewhere. Other gaps that may have high needs are transportation and housing. CDHC could expand services in these areas, and that would greatly facilitate persons accessing and remaining in care. Barriers for CDHC For CDHC to consider enhancing HIV/AIDS treatment and care there are several issues that need to be addressed: • CDHC has to demonstrate to the current HIV/AIDS providers that it is committed to increasing services for PLWH/A and filling gaps, and that new initiatives have the full support of senior management. CDHC has to build stronger linkages for referrals to existing service providers. The linkages are two-way: 1) outreach and case finding have to be referred to primary care and case management providers for specialty HIV/AIDS care; 2) Providers of specialty HIV/AIDS care have to refer clients to CDHC for ongoing chronic treatment of non-HIV related diseases. Among the community CDHC must enhance its reputation as a provider of HIV/AIDS services. There must be a change in perception from a community clinic where there is a significant waiting period and that is often used because clients cannot afford or are unable to go elsewhere, to a clinic that provides quality HIV and AIDS care.


Potential Funding Sources Without new revenue sources, CDHC cannot expand HIV/AIDS services to PLWH/A. There are several possible sources and some federal sources are noted below. Several private and foundation opportunities also exist for funding care and prevention to PLWH/A. While an extensive search for funding opportunities is beyond the scope of this review, CDHC can obtain publicly available lists announcing funding available on-line by CDC, HRSA/HAB, and other AIDS organizations. As noted earlier, Nebraska receives about $3.8 million in Federal funds for HIV/AIDS care and prevention from CDC and the Ryan White Care Act. Competing with NAP for a share of the Title II funds would be possible, but difficult given limited resources and an expanding demand on services at NAP. Title III grants are provided directly to the providers. The planning grant application is due March 5, 2004 for a project period of one-year funding $500,000. Its purpose is to support efforts to plan for the provision of high quality comprehensive HIV primary health care in rural or urban underserved areas and communities of color. Although a Planning Grant
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application was not awarded in 2002, this report may provide the background for a successful grant. Another Title III funding opportunity is “Early Intervention Services Capacity Activity”. It is designed to support planning efforts to strengthen their organization infrastructure and enhance their capacity to develop, enhance or expand high quality HIV primary health care services in rural or underserved areas and communities of color. Capacity building grant funds are intended for a fixed period of time (one to three years) and not for long-term activities. Grants will not exceed $150,000 per successful applicant. The application deadline is for March 5, 2004. CDHC could also apply directly for Title III funds. Given the current infrastructure it may have a difficult time showing capacity. Title III Categorical Grant Program to Provide Outpatient Early Intervention Services with Respect to HIV Disease is due December 12, 2003 or October 15, 2004 for projects ending June 30, 2004 and March 31, 2005 respectively. Title IV funds organizations serving children, youth, women, and their families with the specific services of primary and specialty medical care, psychosocial services, logistical support and coordination, and outreach and case management. Unfortunately, Nebraska is not eligible to apply for 2004 funding as applications in 2004 are limited to those already receiving funds. Part F includes Special Projects of National Significance (SPNS) which will have a grant application available January 2004 for Demonstration Models of Outreach, Care, and Prevention Engaging Young (ages 13-24) HIV Seropositive Men of Color, responding to the rising trend in MSM being young men of color. This will fund 4-5 innovative projects, expecting each project to span five years with an award of about $2,000,000. The application is due March 22, 2004. Competition for these funds will be considerable. However CDHC’s population is ideal for this year’s SPNS grant. Other organizations that provide funding for HIV/AIDS include the National Institute of Health (NIH). NIH posted a public announcement for Inclusion of Women and Minorities in Clinical Research, which would allow CDHC to take a different path, making the organization solely responsible for planning, directing, and executing the proposed research project and receive up to $50,000- $500,000. CDC also funds surveillance studies for which CDHC could be eligible. Program Announcement 04017 Catalog of Federal Domestic Assistance Number: 93.944, Part IV, notes, each funded site will be expected to enroll at least 500 Men Who Have Sex with Men (MSM) and 500 Injection Drug Users (IDUs). Funded sites will also be expected to collaborate with CDC directly funded community-based organizations (CBOs) and CBOs funded by States/cites through the community planning process for allocating Federal HIV prevention funds, schools of public health, universities, ethnographers and behavioral scientists. The grant is due January 16, 2004.
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Other funding opportunities include SAMHSA/CSAT for grants to enhance and expand substance abuse treatment and/or outreach and pretreatment services in conjunction with HIV/AIDS services in African American, Latino/Hispanic, and/or other racial or ethnic communities highly affected by the twin epidemics of substance abuse and HIV/AIDS. There are not current RFPs applicable, but these sources should be monitored. There may be an opportunity to provide housing and emergency financial assistance to PLWH/A through Housing Opportunities for Persons with AIDS, HOPWA. States, cities, and local governments and nonprofit organizations may apply for HOPWA Competitive funding. Another grant opportunity for will be the Minority AIDS Initiative (MAI). There is no current RFP, but this opportunity should be monitored for the RFP in 2004 – 2005. Another potential funding source to enhance case management is to become involved with clinical trials. Provided sufficient numbers of PLWH/A can be recruited, CDHC could become a site that participates in various drug company trials. Protocols for the trials may include funding for additional case-managers or nurses on staff. RECOMMENDED ACTIONS Funding Identify grant opportunities and hire a consultant to assist in the writing of the most likely opportunities for funding prevention and care, particularly case management. LOA for Referrals and Services Create and launch a program where CDHC provides care to PLWH/A for non-HIV health care needs including chronic illnesses such as diabetes and high blood pressure. Develop formal LOAs with area AIDS Service organizations (ASOs) where CDHC provides referrals from testing and counseling to appropriate specialists and, in turn, ASOs provide referrals back to CDHC for ongoing maintenance of non-HIV related illnesses and health care needs. Develop LOAs with ASOs to provide transportation to medical, dental, and mental health appointment. Develop relationships with ADAP and other drug reimbursements programs, and include access to HIV/AIDS medication through the CDHC pharmacy. Develop a program of collaborative case management with NAP, UNMC, and other care providers for CDHC patients. Establish a protocol for case conferencing and sharing medical data.
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Start an African American support group for adherence at CDHC. Provide transportation and follow-up. Recruit participants with the assistance of NAP and UNMC for African Americans who have difficulty adhering to their medical regimen. Outreach Expand outreach programs and increase the use of the mobile van for counseling and testing. There may be an opportunity to collaborate with NAP and UNMC on outreach projects to identify African Americans and others in North Omaha who are infected and out-of-care. Apply for grants to reach African American bisexual and “down-low” populations and conduct targeted outreach to venues where these men meet. Counseling and Testing Train staff in all CDHC programs to identify high-risk persons for HIV and refer them for testing and counseling at CDHC. Community Heath Education and Risk Reduction Highlight the growing risk of STDs and HIV/AIDS in the African American community and CDHC capacity for confidential testing and counseling. Begin the process of having the public link CDHC with HIV/AIDS prevention and care. Seek funds for a campaign targeted to high-risk African Americans from local sources, including the Department of Health.
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Attachment 1 Secondary Sources of Information
1. ''ADAP Funding Information, FY 2002'' http://hab.hrsa.gov/programs/factsheets/adapfundtable.htm. July, 2003. 2. Brubaker, T., Dean, J. ''Nebraska HIV/AIDS/STD HIV Care and Prevention Consortium: 2003 Epi Profile'' HIV/AIDS Surveillance 3. Program, regulation and Licensure Nebraska Dept. of Health and Human Services. July, 2003.
4. ''CDC-NCHSTP-DHAP: HIV/AIDS Surveillance Report.'' 13(1), 2003. 5. ''Charles Drew Health Center 2001 Annual Report''. 2001. 6. ''Charles Drew Health Center 2002 Annual Report, Your Partner in Health Care''. 2002. 7. ''HIV/AIDS Surveillance Report: End of Year Report.'' 8(2), 2002. 8. ''Nebraska AIDS Project (NAP) News.'' 18(1), 2003. 9. ''Nebraska Health and Human Services System'' http://www.hhs.state.ne.us/dpc/resources.htm. July, 2003. 10. ''The Way We Care in Douglas, Sarpy Dodge, and Cass Counties'' United Way of the Midlands, Resource Directory. Sept, 2003. 11. ''Title II 2001 Client Report: Grantee (State): Nebraska''. 2001.
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Attachment 2 Key Informants
Charles Drew Health Center Name Title 1. Dr. Richard Brown CEO 2. Dr. Gregory Ochuba Medical Director 3. Jacqueline Cook Prevention Program Coordinator 4. Mark Reeson Human Resources Manager 5. Judith Hill Omaha Healthy Start (OHS) Project Director 6. Michelle Kenney WIC Coordinator (Manderson Location) 7. Camille Brewer Nurse Practitioner/TQM (Homeless) 8. Tarsha Jackson Chief Financial Officer 9. Glenn Tafe MIS Coordinator 10. Brenda Lincoln Health Information Manager 11. Dr. Jayashree Paknikar Family Practice Physician 12. Brenda Kyles Triage Nurse 13. James Hunter Community Development Coordinator (OHS) 14. Patricia Finklea Administrative Assistant 15. Elaine Rugeley Radiology Technician Nebraska AIDS Project (NAP) 16. Tim Sullivan CEO 17. Joe Gerstandt Director of Education and Prevention 18. Don Randolph Community Planning Chair UNMC 19. Tacy Kirendale Administrator / Case Manager Douglas County Health Department 20. Liz Berthold Manager of HIV/STD
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Attachment 3 List of Questions for Key Informant Interviews 1. An epidemiologist who can give me an overall picture of the HIV/AIDS epidemic in your catchment area. (Ideally one who is charge of, or can access the HIV/AIDS Reporting System (HARS)). Note that I am more interested in people living with HIV/AIDS than the overall cumulative figures of AIDS cases. I expect this conversation to last about an hour. 1.1. What are the trends of the epidemic (by gender, risk group, and race)? 1.2. What are the latest figures of PLWH and PLWA (by gender, risk group, and race)? 1.3. What is the projected growth in the number of PLWH/A (by gender, risk group, and race)? 2. Officers and managers at CDHC who would be developing and implementing a model of HIV/AIDS health care. We can meet a group of managers / Directors together or individually. Each conversation I think will last 60 to 90 minutes. I would like to obtain a: 2.1. History of involvement of CDHC in the community and for PLWH/A. 2.2. Assessment of the HIV/AIDS epidemic in your catchment area. 2.3. Views of the care needs PLWH/A have in general, and a profile of those who would be expected to access care at CDHC? 2.4. What gaps in services would providing care at the CDHC provide? 2.5. What are the barriers to care for PLWH/A? 2.6. What are the barriers to providing care at the CDHC? 2.7. What model(s) of care are appropriate for PLWH/A at CDHC? 2.8. What is the current model of care for patients? 2.9. What support services can the CDHC deliver? 2.10. What formal or informal links does CDHC have with HIV/AIDS care providers? 2.11. What is the financial commitment to implement a model of HIV/AIDS care? 2.12. Anticipated time table for implementation. 3. Clinicians at CDHC and at other care providers. It should take 30 to 45 minutes to ask these questions. 3.1. 3.2. 3.3. 3.4. 3.5. 3.6. Assessment of the HIV/AIDS epidemic in your catchment area. History of involvement of CDHC in the community and for PLWH/A. View of the care needs of PLWH/A in general, and those who would access CDHC? What is the experience/are the competencies of clinicians at CDHC to treat PLWH/A? What are the barriers to care for PLWH/A? What model(s) of care they feel is appropriate for PLWH/A at CDHC?
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3.7. 3.8.
What is the current model of care for patients? What support services can the CDHC provide to PLWH/A?
4. Directors/Managers of current HIV/AIDS Care providers. We can meet one or more persons at each organization either together or individually. Each session will last 60 to 90 minutes. 4.1. 4.2. 4.3. 4.4. 4.5. 4.6. 4.7. 4.8. 4.9. 4.10. Assessment of the HIV/AIDS epidemic in you catchment area. What are the care and prevention services available for PLWH/A in the community? Are there gaps in the services (by population or geographic area)? What are the needs of PLWH/A for services? What are the barriers to care for PLWH/A? History of involvement in the community and for PLWH/A. What are the gaps in services for PLWH/A? Would providing care at the CDHC fill any perceived gaps? What model(s) of care do they provide to PLWH/A? What models do they feel are appropriate? What support services (non direct care services) are available to PLWH/A in Omaha? Does CDHC have any links with your organization for HIV/AIDS care providers?
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Attachment 4 Consumer Survey
A Survey for People Living With HIV
In Nebraska
The purpose of this survey is to gather information about the quality, accessibility and availability of services for People Living With HIV or AIDS (PLWH/A) in Nebraska. The results of the survey will assist the Ryan White Title III Advisory Group in their efforts to increase and improve services for PLWH/A and therefore your participation is extremely valuable. Original surveys will be destroyed after the data has been accumulated and all responses to this survey will remain confidential. You do not need to put your name on this survey and no attempt will be made to determine your identity. YOUR CURRENT HEALTH 1. How would you describe your overall health today, compared to one year ago? Better Same Worse Not Sure
2. How often do you have viral load tests? _______________ Date of last test: __________
2. Do you know your CD4/T-cell count? __________________ Date of last CD4 count: ______________________________
3. How much bodily pain have you generally had during the past two months? None Very Mild Mild Moderate Severe Very Severe
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YOUR MEDICAL CARE
4. How would you describe the overall quality of your medical care? Excellent Very Good Good Fair Poor
If you answered the above question “Fair or Poor” please indicate the reason (s) why you are not receiving quality health care: I do not know where to go to get the care I need I cannot afford quality health care I do not have transportation to get the best care possible I can get good care but cannot afford the medications Other -_____________________________________________________ ___________________________________________________________ ______________ 5. Who do you consider your primary health care provider? General practice physician, such as a family doctor An HIV specialist who also treats your other health concerns A physician’s assistant or nurse practitioner Any provider available at a hospital or clinic site Do not have any health care provider Other ________________________________________________________ ____________________________________________________________ 6. How far from your home (in hours or miles) is your primary health care provider? ________ Hours ________ Miles 7. How would you rate your primary health care provider’s knowledge of HIV/AIDS treatment? Excellent Very Good Good Fair Poor
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8. What are the primary reasons you go to your particular health care provider? Convenience of the location of their office Availability of treatment when you need it Thoroughness & accuracy of their understanding of your health problems Their skill, experience in treating HIV infected individuals Explanations you get about your health problems and treatments given Attention, courtesy and respect shown to you by them and their staff The caring and support offered to you by them and their staff The overall quality of care and services received Other _________________________________________________________ ____________________________________________________________
9. If you do not use a local health care provider please mark the reason (s) why you do not? Just did not feel comfortable with anyone locally Couldn’t find anyone I felt was knowledgeable enough about my condition I believe I was refused treatment because of my HIV status No one could treat my condition and I was always sent to someone else Confidentiality reasons Other Please explain_________________________________________________________ _______________________________________________________________ 10. If you developed HIV related medical problems in the middle of the night, what would you do? Call local doctor Contact Case Manager Go to local hospital Go to local Emergency Room Nothing – Wait until the morning Hope for it to pass Call family/friend I do not know what I would do
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11. If you could get your health care anywhere you wanted, where would you go? __________________________________________________________________ __ Why? _____________________________________________________________ __________________________________________________________________ If you could get your health care from anyone, who would it be? __________________________________________________________________ Why? _____________________________________________________________
YOUR DENTAL CARE AND OTHER HEALTH CARE SERVICES 12. Where do you go for primary dental care? Local private Dentist Local public health clinic Do not seek dental care Other
13. If you do not use a local Dentist please mark the reason(s) why you do not? Just did not feel comfortable with anyone locally I believe I was refused treatment because of my HIV status I was refused treatment because of Medicaid issues Confidentiality reasons Other Please explain______________________________________________________ ____________________________________________________________
14. In the past year have you needed any of the services listed below in order to
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protect or promote your health? Please check whether you have needed or not needed the service, whether or not you have accessed that service locally or out of the panhandle, or whether you could not get that service. a. Pharmacy/Medications _______ Needed _______ Not needed _______ Obtained locally ______Couldn’t get _______ Obtained out of Ryan White
b. Counseling/Support Group _________ Needed _____Obtained locally ______Couldn’t get ________ Not needed _____Obtained through Ryan White Funding c. Drug Abuse Treatment ________ Needed _____Obtained locally ______Couldn’t get ________ Not needed _____Obtained through Ryan White Funding d. Social Work/Case Management _________ Needed _____Obtained locally ______Couldn’t get ________ Not needed _____Obtained through Ryan White Funding e. Transportation to Care _________ Needed ________ Not needed _____Obtained locally ______Couldn’t get _____Obtained through Ryan White Funding
f. Other (please name) _____________________________________________ _________ Needed _____Obtained locally ______Couldn’t get ________ Not needed _____Obtained through Ryan White Funding If you used any of the above services outside of Omaha please tell us why you did not use services in the Omaha area.
If you could not get any of the above services please explain what the barriers were for you in getting that needed service.
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15. In the next 1-3 years, what services do you think need to be more available to people with HIV/AIDS?
16. In the next few years if your situation changes (such as loss of job or loss of insurance) what services will you need that you currently do not need?
GENERAL QUESTION 17. Do you feel you have a good support system for yourself at this time? ____________ Yes ____________ No Would you participate in a support group for persons with HIV? ____________ Yes ____________ No If No, what makes you hesitant to participate in a support group for persons with HIV? ____________________________________________________________________ 18. What type of medical insurance coverage do you have? Don’t Know Private Insurance Medicaid Medicare No Insurance Ryan White 19. When you have sex with someone else do you always tell them about your HIV status? Always Sometimes Never
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20. Do you feel you have enough information about how HIV is spread to prevent infecting other people? ________ Yes ___________ No Would you like more information about how HIV is spread? ________ Yes ___________ No If Yes, what particular information would you like to have? Men having sex with men Injecting drug use Heterosexual contact Transfusion Mother to child How would you like to receive client information? (mail, phone, in-person, etc..) ________________________________________________________________
21. Are there any additional issues, comments, or concerns that are not covered in this survey that you feel are important?
23. What types of appointments do you have trouble getting transportation to? Support groups Doctor appointments HIV advocacy programs Social services 24. Do you feel your provider/doctor is well educated on HIV? Yes No Referring you when necessary Yes No
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STATISTICAL INFORMATION Education: ____Grade School _____High School _____College _____Graduate School ____ GED _____ Technical Degree Age: ____ 18 or under _____ 19-25 years _____26-35 years ____ 46-55 _____ Over 55 _____36-45 years
Ethnicity: ____Native American _____Hispanic _____Caucasian ____African American _____Asian _____ Other Gender: ____Male _____ Female
HIV since:______________________ AIDS since (if applicable)__________________ Where did you live when you tested positive for HIV? (City/State)__________________ County where you currently reside: ___________________________________________ Again thank you for your participation in this survey. Your responses will be very helpful in determining what services need to be made available to PLWH/A and in turn finding funding for those services.
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Attachment 5 Methodology for Consumer Survey Sampling A convenience sample of 48 PLWH/A was obtained through intercept interviews at CDHC, Nebraska AIDS Project, and outreach activities. The criteria were persons living in the CDHC catchment and the ethnic profile is shown in Table 1.
Table 1: Ethnic Profile Ethnicity African American Caucasian Hispanic Native American Other / Missing Total
No 39 2 3 2 2 48
Field Work Surveys were conducted over a 15-month period starting in June of 2002. Flyers were posted at NAP and CDHC asking African American HIV positive individual to complete survey. Seventy-five surveys were sent to Nebraska AIDS Project (NAP). Support worker offered the surveys to African American clients as they visited NAP during lunch hour, and case manager visits, and they were able to complete 21 surveys. CDHC provides HIV testing and counseling, including outreach to populations at risk. Seven interviews were completed at CDHC when individual tested positive for HIV. Twelve were completed during a PLWH/A support group at CDHC, and eight were completed during outreach activities. Data Entry and Cleaning Data Data from pre-coded questions and open-ended questions were coded and entered by PCH staff in New York. Data was checked for consistency, skip patterns, and out-of-range codes through printed outputs at PCH. Analysis The survey was analyzed using the statistical package Statistical Program for Social Sciences (SPSS). With a sample size of 48, with 39 African American and 34 males, no subgroups were analyzed. Analysis of the data was done by the “total sample” and, where appropriate differences by gender, age, or ethnicity are reported.
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Attachment 6 Analysis Tabulations for PLWH/A
DEMOGRAPHICS TOTAL MALE FEMALEAGE 20-35 N= current overall health not sure worse same better 1 2 3 4 12 below 200 below 500 below 750 below 1000 over 1000 None Very Mild Mild Moderate Severe Very Severe Poor Fair Good Very Good Excellent don't know where can't afford no trans can't afford meds other gen.practice physician HIV specialist 48 12.5% 20.8% 39.6% 27.1% 3.1% 15.6% 6.3% 71.9% 3.1% 40.9% 22.7% 18.2% 4.5% 13.6% 31.3% 8.3% 12.5% 39.6% 2.1% 6.3% 2.2% 13.0% 19.6% 43.5% 21.7% 14.3% 28.6% 57.1% 57.1% 25.0% 27.0% 73.0% 34 11.8% 20.6% 38.2% 29.4% 4.3% 13.0% 4.3% 73.9% 4.3% 53.3% 20.0% 13.3% 6.7% 6.7% 26.5% 8.8% 11.8% 44.1% 2.9% 5.9% 3.0% 15.2% 15.2% 45.5% 21.2% 12 8.3% 25.0% 50.0% 16.7% 0.0% 28.6% 0.0% 71.4% 0.0% 20.0% 40.0% 20.0% 0.0% 20.0% 50.0% 0.0% 8.3% 33.3% 0.0% 8.3% 0.0% 9.1% 36.4% 36.4% 18.2% 10 0.0% 40.0% 30.0% 30.0% 0.0% 25.0% 0.0% 75.0% 0.0% 50.0% 0.0% 50.0% 0.0% 0.0% 80.0% 10.0% 0.0% 10.0% 0.0% 0.0% 0.0% 11.1% 22.2% 33.3% 33.3% ETHNICITY Other 36+ Afr Am Ethnicity 37 39 8 16.2% 12.8% 12.5% 13.5% 20.5% 12.5% 43.2% 43.6% 25.0% 27.0% 23.1% 50.0% 3.7% 0.0% 12.5% 14.8% 16.7% 12.5% 7.4% 4.2% 12.5% 70.4% 75.0% 62.5% 3.7% 4.2% 0.0% 42.1% 43.8% 33.3% 26.3% 18.8% 33.3% 15.8% 18.8% 16.7% 5.3% 6.3% 0.0% 10.5% 12.5% 16.7% 18.9% 35.9% 0.0% 8.1% 5.1% 25.0% 16.2% 12.8% 12.5% 48.6% 38.5% 50.0% 2.7% 2.6% 0.0% 5.4% 5.1% 12.5% 2.8% 2.7% 0.0% 11.1% 8.1% 25.0% 19.4% 24.3% 0.0% 47.2% 43.2% 50.0% 19.4% 21.6% 25.0% 0.0% 40.0% 40.0% 80.0% 16.7% 23.3% 76.7% 0.0% 11.1% 0.0% 11.1% 55.6% 11.1% 11.1% 0.0% 50.0% 25.0% 75.0% 20.0% 26.7% 73.3% 8.3% 8.3% 8.3% 8.3% 50.0% 8.3% 8.3% 50.0% 0.0% 100.0% 50.0% 50.0% 28.6% 71.4% 0.0% 0.0% 0.0% 0.0% 0.0% 0.0% 0.0%
viral tests/year
CD4/ tcell count
rate bodily pain
quality of med care
If poor or fair to previous, why?
primary med provider distance from provider in hours
0.0% 100.0% 0.0% 33.3% 0.0% 0.0% 50.0% 100.0% 100.0% 66.7% 0.0% 0.0% 14.3% 100.0% 0.0% 26.9% 33.3% 42.9% 73.1% 66.7% 57.1% 11.1% 11.1% 0.0% 11.1% 44.4% 11.1% 11.1% 0.0% 0.0% 50.0% 0.0% 50.0% 0.0% 0.0% 33.3% 0.0% 33.3% 0.0% 33.3% 0.0% 0.0%
0 8.3% 0.25 8.3% 0.33 8.3% 0.42 8.3% 0.5 50.0% 1 8.3% 1.5 8.3%
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DEMOGRAPHICS
TOTAL MALE
FEMALEAGE 20-35
distance from in miles
N= 0.25 1 2 3 4 5 6 7 10 12 20 Poor Fair Good Very Good Excellent location availability thoroughness experience explanations courtesy support overall quality other
provider's HIV knowledge
48 2.8% 11.1% 25.0% 11.1% 16.7% 8.3% 5.6% 8.3% 5.6% 2.8% 2.8% 2.2% 6.7% 24.4% 33.3% 33.3% 37.8% 37.8% 40.0% 37.8% 28.9% 40.0% 31.1% 35.6% 4.7% 7.1% 14.3% 7.1% 14.3% 28.6% 21.4% 14.6% 4.2% 18.8% 68.8% 6.3% 10.4% 18.8% 8.3%
34 4.2% 12.5% 20.8% 16.7% 16.7% 12.5% 4.2% 0.0% 8.3% 4.2% 0.0% 3.0% 9.1% 27.3% 24.2% 36.4% 34.4% 50.0% 31.3% 37.5% 28.1% 43.8% 28.1% 31.3% 6.7% 11.1% 11.1% 11.1% 11.1% 11.1% 33.3% 14.7% 2.9% 20.6% 67.6% 8.8% 14.7% 11.8% 8.8%
12 0.0% 10.0% 30.0% 0.0% 20.0% 0.0% 10.0% 30.0% 0.0% 0.0% 0.0% 0.0% 0.0% 20.0% 60.0% 20.0% 54.5% 9.1% 63.6% 45.5% 36.4% 36.4% 36.4% 54.5% 0.0% 0.0% 25.0% 0.0% 25.0% 50.0% 0.0% 8.3% 8.3% 8.3% 83.3% 0.0% 0.0% 41.7% 8.3%
10 14.3% 14.3% 42.9% 14.3% 0.0% 0.0% 0.0% 14.3% 0.0% 0.0% 0.0% 0.0% 11.1% 44.4% 11.1% 33.3% 50.0% 25.0% 25.0% 37.5% 25.0% 25.0% 37.5% 37.5% 0.0% 0.0% 0.0% 0.0% 66.7% 33.3% 0.0% 30.0% 10.0% 0.0% 90.0% 10.0% 10.0% 30.0% 0.0%
ETHNICITY Other 36+ Afr Am Ethnicity 37 39 8 0.0% 3.7% 0.0% 10.7% 11.1% 0.0% 21.4% 29.6% 12.5% 10.7% 11.1% 12.5% 21.4% 14.8% 25.0% 10.7% 7.4% 12.5% 3.6% 0.0% 25.0% 7.1% 7.4% 12.5% 7.1% 7.4% 0.0% 3.6% 3.7% 0.0% 3.6% 3.7% 0.0% 2.9% 2.8% 0.0% 5.7% 2.8% 12.5% 20.0% 30.6% 0.0% 37.1% 36.1% 25.0% 34.3% 27.8% 62.5% 33.3% 41.7% 44.4% 38.9% 30.6% 41.7% 27.8% 36.1% 5.7% 9.1% 18.2% 9.1% 0.0% 27.3% 27.3% 10.8% 2.7% 24.3% 62.2% 5.4% 10.8% 13.5% 10.8% 36.1% 36.1% 44.4% 38.9% 30.6% 38.9% 27.8% 38.9% 5.9% 7.7% 15.4% 7.7% 15.4% 30.8% 15.4% 12.8% 5.1% 15.4% 69.2% 7.7% 12.8% 15.4% 10.3% 37.5% 50.0% 25.0% 37.5% 25.0% 50.0% 50.0% 25.0% 0.0% 0.0% 0.0% 0.0% 0.0% 0.0% 100.0% 12.5% 0.0% 37.5% 62.5% 0.0% 0.0% 37.5% 0.0%
why do you go to your provider
if you don't use local provider, why not? not comfortable not knowledge refused tx couldn't treat confidentiality other if had emergency HIV-related med problem who would you call? call doctor call case manager go to hospital go to ER nothing, wait til am hope for it to pass call family/friends don't know
34
© PCH September 2003 cdhc models 10-31.doc
`
DEMOGRAPHICS
TOTAL MALE
FEMALEAGE 20-35 36+ 10 40.0% 20.0% 20.0% 20.0% 20.0% 20.0% 20.0% 40.0%
N= if you could have any provider, where would you go? U of Nebraska medical center CDHC NHS other expertise/ knowledgeable location staff/ sensitivity other specific doctor expertise VA expertise/ knowlegeable staff sensitivity other local private dentist local public health clinic do not seek dental care other not feel comfort refused HIV status refused medicaid confidentiality other needed not needed couldn't get needed not needed couldn't get needed not needed couldn't get needed not needed couldn't get needed not needed
48 31.6% 26.3% 10.5% 31.6% 26.7% 20.0% 13.3% 40.0% 76.9% 7.7% 15.4% 25.0% 37.5% 37.5% 12.5% 31.3% 41.7% 14.6% 11.5% 7.7% 3.8% 26.9% 53.8% 73.1% 26.9% 3.7% 65.8% 34.2% 26.7% 28.2% 71.8% 7.7% 91.7% 8.3% 4.5% 73.8% 26.2% 35
34 25.0% 25.0% 16.7% 33.3% 20.0% 20.0% 10.0% 50.0% 75.0% 0.0% 25.0% 20.0% 20.0% 60.0% 14.7% 35.3% 38.2% 11.8%
12 33.3% 33.3% 0.0% 33.3% 40.0% 20.0% 20.0% 20.0%
ETHNICITY Other Afr Am Ethnicity 37 39 8 29.4% 23.5% 11.8% 35.3% 21.4% 21.4% 14.3% 42.9% 70.0% 10.0% 20.0% 20.0% 40.0% 40.0% 15.4% 30.8% 43.6% 10.3% 9.5% 4.8% 4.8% 33.3% 47.6% 66.7% 33.3% 5.0% 60.6% 39.4% 25.0% 29.0% 71.0% 9.1% 90.0% 10.0% 6.3% 72.7% 27.3% 50.0% 50.0% 0.0% 0.0% 100.0% 0.0% 0.0% 0.0% 100.0% 0.0% 0.0% 33.3% 33.3% 0.0% 0.0% 25.0% 37.5% 37.5% 20.0% 20.0% 0.0% 0.0% 80.0% 100.0% 0.0% 0.0% 100.0% 0.0% 28.6% 28.6% 71.4% 0.0% 100.0% 0.0% 0.0% 75.0% 25.0%
28.6% 28.6% 7.1% 35.7% 30.0% 20.0% 10.0% 40.0% 62.5% 12.5% 25.0% 50.0% 0.0% 50.0% 10.8% 32.4% 37.8% 18.9% 9.5% 9.5% 0.0% 28.6% 57.1% 76.2% 23.8% 5.3% 63.3% 36.7% 36.4% 30.3% 69.7% 14.3% 89.7% 10.3% 6.3% 69.7% 30.3%
Why would you choose that provider
if you could get health care from anyone, who?
80.0% 100.0% 20.0% 0.0% 0.0% 0.0% 33.3% 66.7% 0.0% 8.3% 25.0% 50.0% 16.7% 0.0% 66.7% 33.3% 20.0% 30.0% 50.0% 0.0%
Why would you choose that person?
primary dental care
if did not use local dentist, why?
in past yr. pharm/ meds obtained pharm/meds? in past yr. counseling obtained counseling? in past yr. drug abuse tx obtained drug abuse tx in past yr social work/CM obtained social work/ CM in past yr. Transportation to care
12.5% 12.5% 20.0% 12.5% 0.0% 0.0% 0.0% 12.5% 20.0% 25.0% 25.0% 20.0% 56.3% 50.0% 40.0% 73.7% 83.3% 50.0% 26.3% 16.7% 50.0% 5.6% 0.0% 0.0% 55.6% 90.9% 71.4% 44.4% 9.1% 28.6% 40.0% 0.0% 0.0% 27.6% 37.5% 0.0% 72.4% 62.5% 100.0% 12.5% 0.0% 0.0% 88.0% 100.0% 100.0% 12.0% 0.0% 0.0% 6.3% 0.0% 0.0% 70.0% 30.0% 90.9% 9.1% 87.5% 12.5%
© PCH September 2003 cdhc models 10-31.doc
`
DEMOGRAPHICS
TOTAL MALE
FEMALEAGE
N= obtained transportation? services to be made more available in next 1-3 yrs. couldn't get housing transportation financial assistance insurance (Medicaid/Medicare) Ryan White Care counseling/family support employment assist. other housing transportation financial assistance Ryan White Care counseling/family support employment assist. other
48 25.0% 34.8% 30.4% 21.7% 4.3% 4.3% 13.0% 8.7% 21.7% 20.0% 10.0% 50.0% 15.0% 5.0% 15.0% 15.0% 54.2% 76.6% 72.3% 8.5% 31.9% 21.3% 34.0% 21.3% 38.3% 40.4% 75.0% 54.3% 31.0% 24.1% 72.4% 24.1% 32.1% 47.4% 31.6% 47.4%
34 37.5% 31.3% 25.0% 18.8% 6.3% 6.3% 12.5% 6.3% 25.0% 30.8% 7.7% 61.5% 0.0% 0.0% 15.4% 15.4% 64.7% 76.5% 67.6% 8.8% 23.5% 23.5% 32.4% 24.2% 33.3% 42.4% 79.4% 59.4% 40.0% 35.0% 75.0% 30.0% 31.6% 55.6% 11.1% 66.7%
ETHNICITY Other 20-35 36+ Afr Am Ethnicity 12 10 37 39 8 0.0% 0.0% 37.5% 33.3% 0.0% 66.7% 66.7% 0.0% 0.0% 0.0% 33.3% 33.3% 0.0% 25.0% 25.0% 50.0% 0.0% 25.0% 25.0% 25.0% 40.0% 90.0% 70.0% 0.0% 30.0% 0.0% 40.0% 30.0% 40.0% 30.0% 70.0% 50.0% 0.0% 20.0% 40.0% 0.0% 60.0% 60.0% 60.0% 40.0% 31.6% 26.3% 26.3% 5.3% 5.3% 10.5% 5.3% 21.1% 20.0% 6.7% 53.3% 13.3% 0.0% 13.3% 13.3% 59.5% 72.2% 72.2% 11.1% 30.6% 27.8% 33.3% 19.4% 38.9% 41.7% 75.7% 57.1% 39.1% 26.1% 78.3% 30.4% 27.3% 46.2% 23.1% 46.2% 35.3% 29.4% 29.4% 5.9% 5.9% 17.6% 11.8% 11.8% 26.7% 13.3% 53.3% 6.7% 6.7% 20.0% 13.3% 53.8% 71.1% 69.2% 5.1% 28.2% 15.4% 33.3% 21.1% 39.5% 39.5% 76.9% 54.1% 22.7% 18.2% 68.2% 22.7% 28.6% 47.1% 35.3% 47.1% 33.3% 33.3% 0.0% 0.0% 0.0% 0.0% 0.0% 50.0% 0.0% 0.0% 40.0% 40.0% 0.0% 0.0% 20.0% 62.5% 100.0% 100.0% 28.6% 57.1% 57.1% 42.9% 12.5% 37.5% 50.0% 75.0% 50.0% 66.7% 50.0% 83.3% 33.3% 50.0% 50.0% 0.0% 50.0%
50.0% 50.0% 16.7% 0.0% 0.0% 16.7% 16.7% 16.7% 0.0% 16.7% 33.3% 50.0% 16.7% 0.0% 16.7% 25.0% 75.0% 83.3% 8.3% 58.3% 16.7% 33.3% 16.7% 50.0% 33.3% 66.7% 50.0% 0.0% 0.0% 75.0% 12.5% 37.5% 33.3% 55.6% 33.3%
if situation changes what services do you anticipate needing?
have support system would participate in HIV support groups have insurance kind of insurance…
private insur. medicaid medicare ryan white do you disclose your status? never sometimes always have enough prev info would like more info kind of info… MSM info IDU info Het info transfusion info mom-child info info via… by mail by phone in person
36
© PCH September 2003 cdhc models 10-31.doc
`
DEMOGRAPHICS
TOTAL MALE
FEMALEAGE 20-35 36+ 10 0.0% 0.0% 0.0%
N= topics of interest not addressed in survey… housing transportation financial assistance counseling/family support education youth services other
48 40.0% 16.7% 33.3% 16.7% 33.3% 16.7% 33.3%
34 33.3% 33.3% 33.3% 33.3% 33.3% 33.3% 33.3%
12 50.0% 0.0% 33.3%
ETHNICITY Other Afr Am Ethnicity 37 39 8 50.0% 33.3% 33.3% 33.3% 33.3% 33.3% 33.3% 33.3% 0.0% 33.3% 0.0% 33.3% 0.0% 33.3% 40.0% 80.0% 40.0% 40.0% 100.0% 66.7% 37.5% 12.5% 0.0% 25.0% 25.0% 0.0% 0.0% 0.0% 85.7% 14.3% 0.0% 0.0% 0.0% 42.9% 57.1% 0.0% 100.0% 0.0% 25.0% 37.5% 25.0% 0.0% 12.5% 71.4% 28.6%
66.7% 25.0% 50.0% 25.0% 0.0% 0.0% 25.0%
0.0% 0.0% 33.3% 100.0% 0.0% 100.0% 33.3% 0.0%
transportation problems with what kinds of appts? support groups doctor appoint. hiv advocacy social services have well- educated doctor receive referrals highest level of education grade school GED high school technical degree college graduate school age 19-25 26-35 36-45 46-55 over 55 time w/ HIV diagnosis Less 1 yr 1 to 3 years 3 to 8 years > 8 years length of AIDS diagnosis Less 1 yr 3 to 8 years > 8 years q25c. ethnicity native american hispanic caucasion african american other q25d. gender male female
56.8% 42.3% 90.0% 77.8% 40.5% 46.2% 20.0% 33.3% 48.6% 46.2% 60.0% 55.6% 43.2% 38.5% 60.0% 66.7% 89.5% 92.6% 88.9% 87.5% 73.5% 75.0% 66.7% 66.7% 8.5% 6.1% 8.3% 0.0% 21.3% 21.2% 25.0% 22.2% 38.3% 33.3% 58.3% 55.6% 8.5% 6.1% 8.3% 0.0% 17.0% 24.2% 0.0% 22.2% 6.4% 9.1% 0.0% 0.0% 4.3% 5.9% 0.0% 20.0% 17.0% 11.8% 36.4% 80.0% 48.9% 58.8% 9.1% 0.0% 23.4% 20.6% 36.4% 0.0% 6.4% 2.9% 18.2% 0.0% 20.9% 20.7% 25.0% 30.0% 11.6% 10.3% 16.7% 40.0% 27.9% 27.6% 33.3% 10.0% 39.5% 41.4% 25.0% 20.0% 8.3% 12.5% 0.0% 0.0% 50.0% 37.5% 75.0% 100.0% 41.7% 50.0% 25.0% 0.0% 4.3% 6.1% 0.0% 0.0% 6.4% 6.1% 0.0% 0.0% 4.3% 3.0% 8.3% 0.0% 83.0% 84.8% 83.3% 100.0% 2.1% 0.0% 8.3% 0.0% 73.9% 100.0% 0.0% 60.0% 26.1% 0.0% 100.0% 40.0%
48.1% 58.1% 40.7% 32.3% 44.4% 48.4% 33.3% 41.9% 89.7% 87.5% 79.2% 77.8% 8.1% 2.6% 21.6% 23.7% 35.1% 44.7% 10.8% 5.3% 16.2% 15.8% 8.1% 7.9% 0.0% 5.1% 0.0% 17.9% 62.2% 43.6% 29.7% 25.6% 8.1% 7.7% 18.8% 25.7% 3.1% 11.4% 31.3% 25.7% 46.9% 37.1% 9.1% 11.1% 45.5% 33.3% 45.5% 55.6% 5.4% 0.0% 8.1% 0.0% 5.4% 0.0% 81.1% 100.0% 0.0% 0.0% 80.0% 73.7% 20.0% 26.3%
37
© PCH September 2003 cdhc models 10-31.doc

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