Central Texas hiv/aids planning Area



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Survey participants ranked Medication Assistance (AIDS Pharmaceutical Assistance) as the most important service that would help them engage or remain in care. Ninety-five percent of survey participants rated Medication Assistance as very important, with another 3 percent rating the service category as somewhat important. Fifty-eight percent of participants reported ever using Medication Assistance (40% current use, 18% past use) while 40% of participants had never used the service. Of the participants who had never used medication assistance, 60% (55% of the total sample) reported that the service was available and 75% (64% of the total sample) reported that they did not want or need medication assistance. For this reason, AIDS Pharmaceutical Assistance funding has remained stable or decreased slightly in all HSDAs, as sub-grantees have worked diligently to help clients enroll in alternative sources of HIV/AIDS medication assistance, such as the Texas HIV Medication Program (THMP) and pharmaceutical patient assistance programs.


Following closely behind Medication Assistance is the need for Case Management (for the purposes of this assessment, Medical and Non-Medical Case Management were collapsed in to one service category). Ninety-one percent of participants rated Case Management as very important to engaging and remaining in care, with an additional 5% reporting this service as somewhat important. An overwhelming majority of participants (92%) reported ever using this service (89% current use, 3% past use) while only 8% of participants had never engaged in case management services. Though the level of unmet need (the percentage of participants who have never accessed case management services, but reported a need for case management) appears high at 53%, the actual proportion of participants with an unmet need for case management services is about 10 individuals (about 4% of the total sample). More important for understanding the need for this service is the feedback participants gave regarding what they felt was missing from Case Management services. Though participants did not provide any additional services to be added to this category, it is clear that clients have noticed the strain that large caseloads have exerted on the case management system. Participants reported wanting more funding in this service category to allow agencies to have more case managers, smaller case loads, longer case management visits, and better communication between case managers and clients. In response, BVCOG has encouraged sub-contractors funded for case management to utilize an acuity tool and administer regular comprehensive reassessments to identify those clients who are ready for graduation from case management services in order to increase the time available for clients that truly require case management to remain in care. BVCOG has also increased funding in the Temple-Killeen HSDA to retain case management staff, and will investigate reallocations to increase funding in this category for other providers further along in the Ryan White Part B 2012-2013 contract year.
Participants ranked Transportation as the third most important service necessary for clients to engage and remain in care, with 91% of clients rating this service as very important and 5% as somewhat important. Fifty-seven percent of participants reported using transportation services at some point (42% current use, 15% past use), with 43% never using this service. Of the participants who have never used this service, 71% reported that they do not need transportation assistance and 68% knew that the service was available. As subcontracted agencies have been diligent in offering clients transportation assistance when clients mention transportation issues as a barrier to making medical and support service appointments, it appears that this need is largely met for the CTHASA under the current funding schema. However, the portion of participants who do experience barriers reported living in rural areas, having no way to pay, information/language issues and fear of disclosure as being barriers to accessing transportation services. Participants also requested more rural transportation and alternatives to utilizing local public transportation systems, which often present an additional challenge, as clients are immunocompromised and many are disabled. As mentioned earlier in the needs assessment section, the BVCOG planner is currently partnering with the Austin Area Comprehensive HIV Planning Council on a directed assessment of client transportation needs. The Ryan White Part A administrative agent’s transportation policy currently prohibits the provision of gas vouchers to clients living near public transit lines. This may be an opportunity for Ryan White Part B funds to better coordinate services with Part A funding and provide comprehensive coverage for differing client transportation needs throughout the Austin HSDA. For the first time in 2012-2013, BVCOG is funding the primary HIV/AIDS medical provider in the Austin area (which treats both urban and rural clients) for medical transportation to increase the agency’s capacity to provide transportation assistance to rural clients, increase the transportation options of clients living within the urban center, and improve client attendance at appointments.
The fourth most important service was Food Bank. Eighty-five percent of participants found this service to be very important, and an additional 10% rated the service as somewhat important. Sixty-one percent of participants reported using food bank services at some point (40% current use, 18% past use). Of the 39% of participants who never utilized Food Bank, 55% said the service was available to them, and roughly half (51%) expressed a need for this service. This appears to indicate an unmet need for Food Bank for about 20% of the entire sample, which will be discussed in greater detail in the following sub-section on unmet need in the CTHASA
Dental Care (Oral Health Care) was ranked as the fifth most important service to engaging and remaining in care, with 91% of participants rating the service as very important and 5% rating the service as somewhat important. Eighty-two percent of clients reported having used dental care services at some point (61% current use, 21% past use), with 18% reporting that they had never used the service. Of the 18% of participants who had never used dental care services, 62% reported that they needed dental care and 73% reported that dental care was not available to them, or that they were unsure whether the service was available. Though this means that only roughly 13% (36 individuals) of clients surveyed did not know that dental services were available, Oral Health Care’s status as a core medical service, the importance of regular dental care to overall health, and the high ranking of importance that participants gave the service category makes meeting this need a high priority for BVCOG. More detailed discussion on the nature of this specific unmet need, as well as the response of BVCOG and its sub-contracted agencies is in the following section on unmet need.

Needs Assessment: Unmet Need Estimates
To assess which client needs (both core medical and support) may be unfulfilled in the current CTHASA funding schema, participants were asked the following questions for each service category: (1) whether they use the service, (2) whether the service is available to them, (3) what barriers to accessing the service exist, and (4) the importance of this service to remaining in HIV medical care. To better understand client perceptions of the service categories and identify gaps in services, participants were also asked if they felt anything was missing or not currently provided under that service. Respondents were determined to have an unfulfilled need for the service if they responded that they had never used the service, they needed the service, and the service was not available to them. Though nearly two-thirds (65%) of survey participants reported no unmet needs under these criteria, the number of unfulfilled needs identified per participant ranged from zero to eleven. The majority of those who reported an unmet need identified just one service category that was unmet. The following four service categories (Dental Care/Oral Health Care, Emergency Financial Assistance, Health Insurance Assistance and Food Bank) have the highest unmet need in the needs assessment. Over fifty percent of participants who reported never receiving the following three services expressed a need for those services. Two of these service categories (Dental Care/Oral Health Services and Food Bank) are also ranked in the top five most important services for helping PLWHA engage in or remain in care, and two (Health Insurance Assistance and Dental/Care Oral Health Care) are core medical services. As mentioned in the service ranking section, case management appears to have a high percentage of unmet need, but actual proportion of clients reporting a need for this service and with no history of accessing it is quite small.
The service with the highest level of unmet need across all HSDAs is Health Insurance Assistance. Of the 75% of participants who reported never using this service, 57% reported that they need Health Insurance Assistance. This means that of all 275 participants surveyed, about 43% (118 individuals) have an unmet need for this service. It is unusual that this service category received a comparatively low ranking of importance (9th out of 15 services), when having health insurance coverage often removes or reduces the need for clients to utilize services like Outpatient Ambulatory Medical Care and AIDS Pharmaceutical Assistance. One of the greatest barriers to accessing this service appears to be client knowledge of its availability, 52% of participants with no history of using Health Insurance Assistance were unsure whether it was available to them, and another 17% said this service was not available to them, meaning that nearly 70% of clients did not know that Health Insurance Assistance is an available service. Only 31% of clients were aware that Health Insurance Assistance was a service they could request if needed. This is one of the findings that informed the service system improvement goal of increasing client self-advocacy, which is reported in greater detail in Section Three.

Of the top ten services ranked most important, Emergency Financial Assistance is not funded in the CTHASA, as there is greater need for funds in the core medical categories. Sixty-one percent of participants who reported having never used Emergency Financial Assistance also reported having a need for this assistance. The high level of need for Emergency Financial Assistance, and the high level of unmet need for the service, raises questions as to what the nature of these financial emergencies is. Future needs assessment activities will examine this need more closely to determine whether it is already being met under core categories like AIDS Pharmaceutical Assistance that are already funded and, if so, what barriers prevent clients from accessing those services.


The other core service in which participants surveyed reported a high level of unmet need is Dental Care/Oral Health Care. Sixty-two percent of participants reported who have no history of accessing this service, reported a need for it. The most striking contributing factor is that nearly three quarters (73%) of clients who have never used the service were either unsure if dental assistance was available to them (24%), or believed it was not available (49%). For those participants who were aware that the service is available to them, other barriers, including inability to pay, transportation, care quality, few providers are willing to work with HIV positive patients, and difficulty scheduling appointments in a timely manner were cited as reasons for not accessing dental care.
In response to the needs assessment findings for oral health, BVCOG and the subcontracted agencies have worked to address the high unmet need in several ways; agencies have been more proactive in assisting clients with scheduling dental prophylaxis appointments, and stressing the importance of oral health to all clients. Additionally, a number of clients with specialty needs were identified during this process, and have since completed or have pending treatment plans. This was particularly successful in the Temple-Killeen HSDA, where the provider successfully completed an Oral Health Care waiting list for clients with extensive specialty care needs, and was then able to sustain a reduction in funding for this service category while still providing assistance for prophylaxis/maintenance dental care and any new specialty care needs. BVCOG has also applied for Ryan White Part B Supplemental Funding on behalf of the Concho Plateau HSDA provider, to further their efforts to work through an Oral Health Care waiting list. A substantial reallocation toward the end of the Ryan White Part B 2011-2012 contract year was also completed in the Waco HSDA to assist four clients with completing specialty dental treatment plans. This same provider also received a funding increase for 2012-2013 in this service category to meet the high unmet need. BVCOG will continue to monitor this service category in all HSDAs, and provide necessary funding changes and guidance to ensure clients continue to have access to this vital service.
Fifty-one percent of participants who reported never using Food Bank assistance stated they had a need for this service (this translates to about 20% of survey respondents). Participants reported several barriers that may contribute to the level of unmet need for Food Bank services, many of which relate to the centralized location of food banks in more urban areas. This is particularly problematic when serving clients in rural areas, where transportation to and awareness of food banks and food pantries may not be available.
Though not a core service category, each HSDA receives BVCOG funding for food bank services. As shown in the section of this document that discusses current care resources, the Waco HSDA has two very successful community-based food banks (one specifically for PLWHA), in addition to the Meals and Wheels program, which provides food and transportation to seniors and people living with disabilities. As sufficient resources exist in this HSDA to provide clients with this type of assistance, the Ryan White Part B and State Services funding in this service category is typically used to purchase nutritional supplements (though reserving BVCOG food bank funding for nutritional supplements is not unique to the Waco HSDA). However, the Waco HSDA also had the highest percentage of survey participants reporting they were unsure whether Food Bank services were available to them. This could represent a skewing in the survey data as it is unclear whether survey participants thought that they were speaking to availability of this resource in their community, or from the subcontracted provider. Future needs assessment tools will be revised to draw a distinction between questions asking about community resources and those inquiring about assistance available from subcontracted agencies. BVCOG will continue monitoring this service category, and will make funding and guidance changes as necessary to ensure that client needs continue to be met. One of the goals for service system improvement in this comprehensive plan is to increase client self-advocacy; this includes providing subcontracted agencies with guidance for developing standardized client information packets to be provided at intake and as needed, which would include information on available resources and services, such as food bank, in the HSDA. .
Needs Assessment: Out of Care Respondents

One of the more challenging populations to access for needs assessment is the out of care population. Only two participants in the needs assessment survey were classified as being out of care (no CD4 count, viral load test or filled prescription for ART/HAART within the past 12 months). When these two individuals were asked what caused them to fall out of care, one responded that financial reasons contributed to cessation of care, and both gave responded that “other” reasons had played a role. These participants also suggested financial assistance for appointments and medications and assistance in working with insurance companies would be helpful for returning to care.


To gain a fuller perspective of what factors commonly contribute to PLWHA falling out of care in the CTHASA, as well as to help identify those at greater risk for falling out of care, all survey participants were asked whether they had stopped receiving medical care for more than six consecutive months some point after receiving a positive diagnosis and, if so, why. Nearly one quarter (23%) of participants reported stopping care for more than six consecutive months; reasons included not being sick, so they did not require medical care (19%), financial reasons (15%), active alcohol/substance use or relapse (11%), medications had too many side effects (11%), did not want to take medication (8%), transportation (6%), did not believe treatment was effective (2%), and trouble keeping appointments (2%). Interestingly, 65% of participants who were out of care for more than six months also selected “other” as a factor. While some of the reasons stated, such as working in the trucking industry or having a difficult time accepting a positive diagnosis are specific to the individual, others may indicate opportunities to improve HIV service provision in the CTHASA. For example, one reason some clients gave for falling out of care for more than six months was because they had moved and had a difficult time finding out what services were available and where to access those services. The BVCOG Planner had an impromptu discussion with a client previously served in the Bryan-College Station HSDA who went without ART medication for over a month after coming to the area because she was never linked with the subcontracted agency to receive assistance. These reports may indicate a need to strengthen referral networks in the CTHASA, which is discussed in more detail in Section Three. Examining what helps PLWHA who fell out of care to return to care (positive deviance) is also instrumental when developing appropriate interventions to increase the number of clients in care in the CTHASA. Following up on reasons for leaving care for six months or more, participants were asked what helped them return to care. The majority of responses indicated that a medical crisis and the prospect of dying motivated them to come back to care. Others indicated that encouragement from doctors, the desire to live and be with their family and friends, moving to a new area and finding out about available services, and religion helped them come back to care.
An additional reason for PLWHA failing to engage or remain in care includes the individual’s prioritization of immediate basic needs over medical care. A relationship exists between receiving supportive services like food and housing, and an increased likelihood of receiving care. 11-12 Unfulfilled needs for these services have also been found to be primary factors in delaying care13. Maslow’s hierarchy of needs suggests that individuals with unfulfilled immediate physiological needs perceive those needs as more important and urgent to fulfill than unfulfilled longer term safety needs14. For PLWHA (particularly PLWHA populations that are already marginalized), this may result in the need for secure housing and food taking precedence over longer term safety needs, such as remaining in treatment to improve or preserve health. Being unable to access basic needs leads to a deprioritization of treatment adherence and medical care seeking.15 Though core medical services are the primary focus of the Ryan White system of care, support services are essential for enabling clients to continue valuing and accessing those medical services. This is particularly true for rural HSDAs where availability and access to support service resources declines.16

Needs Assessment: Gaps in Care Services
The survey instrument asked about barriers for accessing services, however, the information provided in the analysis does not provide a clear explanation as to the reasons for specific unfulfilled need. A gap in care can result from the need for a service that the Administrative Agent does not fund, cannot fund, or of which the Administrative Agent is unaware. Tables presenting the Ryan White and State Services funded services that are offered in each HSDA are available in Appendix D. As these are directly funded services, gaps in care services for these service categories are unanticipated. Many other services are offered through referrals to other agencies, organizations, and services in each community. Difficulty may arise, however, from lack of client knowledge about the services and resources available in his or her community, which is addressed in Section 3.
One gap in care services that BVCOG identified was the need for clients to access multiple modes of transportation in and around the city of Austin to attend medical appointments. A rural Austin HSDA provider receives transportation funding to assist clients living in rural areas in picking up medications and attending appointments in the urban center. However, non-rural clients in the Austin TGA relied on Ryan White Part A funding for transportation assistance. Through discussions with an Austin HSDA provider and evaluation of that provider’s annual client satisfaction survey, parking and transportation issues were identified as a primary contributor to high no-show rates for medical appointments. Transportation policies for utilizing Ryan White Part A funds guide subcontractors to provide clients with bus passes if the client lives in close proximity to a bus line. However, preliminary findings from the 2012 needs assessment focus groups reveal that clients require a variety of transportation options to increase medical appointment attendance. For example, depending on the resources at a client’s disposal, a client may be better able to attend his or her medical appointment with a taxi voucher or gas card, rather than a bus pass. For this reason, BVCOG began funding a provider within the Austin TGA for Ryan White Medical Transportation and closed this gap in care services.
Providers are required to form partnerships with other agencies in their area to meet client needs for services and prevent gaps in care. Though a rural Austin HSDA provider receives transportation funding, much of this allocation was expended in assisting clients with transportation to pick up medication refills and resulted in an increased gap in transportation services for clients requiring assistance to attend medical and supportive service appointments. In response, BVCOG facilitated a subcontractor partnership that allowed this provider to retain its transportation allocation for helping rural clients to attend appointments. Another provider that shares clients with this rural provider often receives medications from a local 340B pharmacy and mails these medications to this rural provider. Another innovative strategy being explored to close this gap is the use of local and corporate mail-order pharmacies.
Another example of a subcontractor partnership that filled a gap in care services is the partnerships between the Temple-Killeen HSDA provider and community mental health resources. Though clients receiving services in the Temple-Killeen HSDA have a relatively high need for Mental Health services, and 40% of respondents have received a formal diagnosis of a mental health condition, the contracted provider has cultivated partnerships with local mental health providers for low or no-fee services, to the extent that this service category no longer requires BVCOG funding.
Needs Assessment: Barriers to Care Services

The 2009 comprehensive needs assessment differs from previous needs assessments in the way that barriers to care services have been evaluated. In the past, participants were asked to provide a barrier type (Information, Personal/Cultural, Service Delivery System and Access/Availability). This answer format was easily analyzed, but gave little context for the barriers and yielded few opportunities to address those barriers. For each of the 13 service categories17 examined for barriers, the survey tool allows clients to select agency-level barriers (hours of operation, not feeling welcome), financial barriers, familial/interpersonal barriers (caring for other family members; concerns about disclosure to family members, friends and partners; intimate partner violence; concerns about taking resources away from other clients), linguistic-cultural barriers, legal and immigration concerns, or describe a barrier not listed. Participants also had the option to state that they did not want or need the service, which accounted for the majority of barrier feedback from participants.


Most Frequently Reported Barriers

Service

Barriers

Medication Assistance

Financial barriers; Did not know about service

Case Management

Immigrant/illegal status; Did not know about service

Transportation

Financial barrier; Did not feel welcome; Information not available in client language; Rural residence; Cut back in service; Concerns about disclosure

Food Bank

Hours of operation; Information not available in client language; Food bank closures; Denial of services due to no HIV diagnosis, Embarrassment

Dental Care

Financial barriers; Transportation; Did not know about service

Short Term Housing Assistance

Did not know about service; perceived that agency lacked funding to provide assistance

Permanent Housing Placement

Did not know about service

Health Insurance

Financial barriers; Information not available in client language; Did not know about service

Rental Assistance

Hours of operation; Needs of other family members; Disclosure concerns; Information not available in client language

Counseling

Financial barriers; Transportation; Hours of operation; Not feeling welcome; Information not available in client language

Psychosocial Support

Hours of operation; Needs of other family members, Did not know about service; Service not available in area

Nutrition Education

Did not know about service; Financial barriers

Legal

Did not know about service; Financial barriers
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