In St. Louis, services for individuals with AIDS and other related diseases
are coordinated through the Missouri Department of Health and the Metropolitan
AIDS Program, which implements the statewide system locally. Service coordinators
determine eligibility, assess the need for service, offer prior authorization
of services for reimbursement, and monitor the provision of services. To
be eligible for services, an individual must be assisted by a case manager
affiliated with the Missouri Department of Health, Bureau of Special Health
Care Needs. There are 5 state case managers and 12 state approved affiliate
managers serving the St. Louis region who perform needs assessment for
clients, refer them to the various service providers, and help them receive
food stamps and other support. The Network keeps service provision costs
low and avoids duplication of services.
Current Services
The following are the primary service providers in the St. Louis Metropolitan area.
As of April 1, 1994, 2473 case of AIDS and 1558 cases of HIV were reported to the Centers for Disease Control for the St. Louis MO-IL metropolitan statistical area. Table 25 shows the actual reported cases in the St. Louis EMA (Eligible Metropolitan Area). On the Missouri side of the metropolitan area the reported number of AIDS cases totaled 2188, and reported HIV cases totaled 1330. On the Illinois side of the metropolitan area, AIDS cases totaled 285, and HIV cases totaled 228. Demographic characteristics indicate that 13% to 15% of the reported cases involved women, 40% to 45% involved minorities and over 70% of the cases involved people from age twenty to thirty-nine.
| Area | AIDS | HIV | Total |
| St. Louis side of metro area | 2188 | 1330 | 3518 |
| Illinois side of metro area | 285 | 228 | 513 |
| Total | 2473 | 1558 | 4031 |
However, for long-range planning purposes, the needs assessment study, commissioned by the St. Louis Metropolitan AIDS Program provides a better measure on which to base future planning for the HIV/AIDS population in the St. Louis metro area. Table 26 shows the estimated number of HIV/AIDS cases in the St. Louis EMA. The table indicates that the total HIV/AIDS population in the St. Louis EMA is 7087 individuals. Of these individuals 4477 are white, 2503 African American, 78 Hispanic/Latino, and 28 Asian and Native American. The group most affected by the virus is still Caucasian males. However, 1994 data shows that 60% of the newly reported cases of infection are among African American. In the African American community, males are still most likely to be living with AIDS, however, women are becoming a higher risk population. Among Blacks living with AIDS 12% are adult women while among whites 5% are adult women.
| Men | Women | Pediatrics | Total | % of cases | ||||
| Race/Ethnicity | AIDS | HIV | AIDS | HIV | AIDS | HIV | ||
| African-American | 428 | 1732 | 80 | 221 | 8 | 34 | 2503 | 35% |
| White | 676 | 3500 | 37 | 206 | 11 | 47 | 4477 | 63% |
| Hispanic/Latino | 9 | 63 | 2 | 3 | 1 | 0 | 78 | 1% |
| Other (Asians, Native Americans) |
5 | 18 | 2 | 3 | 0 | 0 | 28 | 0% |
| Total | 1118 | 5313 | 121 | 433 | 20 | 81 | 7086 | 100% |
The study commissioned by the Metropolitan AIDS Program was an initial attempt at a needs assessment of the AIDS population in the St. Louis EMA. Although many areas of need of HIV/AIDS affected individuals are being met, several areas show a need for improved service delivery or indicate a gap in services. Table 27 helps summarize the availability of services and the effectiveness in meeting the needs of the HIV/AIDS affected population. The table shows that primary medical care, dental care, drug reimbursement, food services, and transportation is provided to 80% or more of the population needing the services. The areas in which needs were not met for a large number of the HIV/AIDS population are: buddy/companion services, case management, client advocacy, day/respite care, direct emergency assistance, mental health care, and transportation. Direct emergency assistance is the need which is least met, with over 1400 individuals needing the assistance. Assistance will increasingly become crucial in the area of housing and related services. Currently, over 850 people report needing housing assistance services.
| Services | % of males in need | % of females in need | % of children in need | Total in need | # being served | # not being served | % not served |
| Adoption/foster care | 1 | 10 | 0 | 120 | 60 | 60 | 50% |
| Buddy/Companion Service | 25 | 2 | 50 | 1775 | 1010 | 765 | 43% |
| Case Management | 22 | 37 | 39 | 1650 | 960 | 690 | 42% |
| Client Advocacy | 38 | 55 | 41 | 2791 | 1590 | 1201 | 43% |
| Day/Respite care (children) | 1 | 48 | 10 | 341 | 176 | 165 | 48% |
| Dental care | 86 | 73 | 100 | 6037 | 5809 | 228 | 4% |
| Direct emergency assistance | 22 | 37 | 0 | 1621 | 162 | 1459 | 90% |
| Drug reinbursement | 26 | 25 | 4 | 1815 | 1494 | 321 | 18% |
| Food Services | 44 | 54 | 39 | 3169 | 2633 | 536 | 17% |
| Home Health Care | 16 | 11 | 25 | 1115 | 834 | 281 | 25% |
| Hospice Care | 1 | 1 | 0 | 70 | 14 | 56 | 80% |
| Housing prog./related services | 34 | 50 | 33 | 2498 | 1620 | 878 | 35% |
| Information dissemination | 5 | 2 | 29 | 362 | 0 | 362 | 100% |
| Mental Health Care | 36 | 22 | 6 | 2443 | 1719 | 724 | 30% |
| Primary Medical care | 94 | 100 | 100 | 6701 | 6455 | 246 | 4% |
| Rehabilitation services | 8 | 14 | 20 | 612 | 507 | 105 | 17% |
| Substance Abuse services | 4 | 2 | 1 | 269 | 134 | 135 | 50% |
| Trasportation | 32 | 89 | 5 | 2558 | 2057 | 501 | 20% |
| Other: Adult Day Care | 5 | 5 | 0 | 349 | 193 | 156 | 45% |
Of the total 7087 estimated cases, 3777 or 53% are under care. The estimated population not in care comprises both people who are unable to access services and people who do not yet need services. In the next five to ten years most of these individuals will enter the AIDS service delivery network.
In addition to closing the existing gaps in the service provision system, an ongoing challenge is insuring accessibility of services to specific populations. Women and minority populations have greater difficulties accessing services, in part because so many of them have less income. Services which were initially designed to serve a white gay male population are now being redesigned to serve a more diverse population, including minorities and women. With the face of the epidemic changing, the service delivery has to take into consideration the additional needs and challenges faced by people in poverty.
One of the greatest needs among this population is outreach and education. Outreach efforts need to communicate information in a way that is meaningful to gay men's experience, particularly the special concerns of closeted gay men. Many, because of fear of disclosure of their sexual orientation, fail to seek supportive services and become isolated and depressed. Mental health counseling is a need that many gay men wish to access but are unable to. Although white gay men who are HIV/AIDS affected show an overall higher income than other HIV challenged groups, many continue to need assistance in accessing services or in meeting insurance or house payments. Many white gay men, as a result of illness, run out of insurance but do not qualify for Medicaid and cannot purchase medication without assistance. Companion services still figure as a big need among this population.
HIV infection is also on the upswing for African American gay men. Many gay men of color are "closeted" and are married or bisexual. This factor poses a great risk to their partners because of unsafe sexual practices. A major obstacle to outreach among this population is the extent of denial about sexual orientation.
In general, women, especially those living in poverty, seek services later in the progression of the illness. Usually they are more likely to seek services for their children and other family members before they seek help for themselves. It can be inferred from Table 27 that a higher percentage of women are in need of services that are not prevalent such as adoption/foster care services, day/respite care and companion services. As the numbers of families affected by the illness increases, recognition of their needs is crucial. Currently, no specific program or paid position exists to coordinate these services.
Client advocacy has been identified as an expanding area of need among a greater percentage of women affected with HIV. Women and their families need help in dealing with legal issues concerning provision for their children's future care. These women need assistance in permanency planning in the form of adoption, foster care, or guardianship for times when they are sick or after they die. Other needs that women share with the rest of the AIDS population include tenant/landlord mediation , help dealing with credit issues, legal assistance to insure access to basic economic survival needs. However, strategies are often more complex because of their families impoverished conditions.
Additional obstacles are the lack of adequate child care services and coordinated mother/child health services. Obstacles lie in location, transportation, and lack of sufficient outreach. Lack of coordination between services for mother and children are also a barrier in the provision of this service.
Table 27 indicates the entire range of services needed to effectively deal with HIV/AIDS. Especially important are the following recommended initiatives:
Home health care services should be expanded. In addition to more paraprofessional and professional home health services, funding should be available to provide financial assistance to family members who are caregivers for persons with HIV. Since in-home service provision is considerably cheaper than hospital care, specific efforts should be made to facilitate in home care.
Emergency assistance funding needs to be expanded considerably since an increasing number of consumers starts out with limited financial resources. Funding in this area needs to assist individuals with housing-related costs, food, and basic supply expenses.
People at different stages of HIV disease are faced with different housing
needs. A study undertaken by Bear Stearn found that treating HIV/AIDS consumers
at their home costs about $2,820 per month, whereas a one month stay at
a hospital would total $23,190. Individuals need a range of options from
affordable housing referral to supportive housing.
Current Services
Currently only one organization is adequately equipped to provide housing services on the Missouri side of the EMA. Doorways is an interfaith program that has provided housing options since 1988. For the past seven years they have led the way in providing housing for individuals and families affected by HIV/AIDS. The organization provides referral and advocacy, emergency/transitional assistance, housing subsidies, and residential housing for individuals and families with HIV and AIDS. The agency operates several housing projects funded through a combination of private, local, state and federal resources. HUD funded programs include Permanent Housing for Disabled Homeless, Supportive Housing, and Section 811. Many of these projects involve rehabilitation or construction undertaken by Doorways. Doorways' philosophy is based on the belief that a safe, adequate home is the cornerstone of cost effective treatment of HIV illness. Persons who have suffered the physical and economic devastation of HIV illness can receive coordinated medical and social services while remaining as independent and self reliant as possible. The continuum of services model adopted by Doorways insures that clients access the most appropriate service reflecting their specific and unique needs.
The Illinois side of the EMA has not yet established a coordinated system of care comparable to the one in St. Louis. The St. Clair County Health Department has great difficulties in meeting the housing needs of its HIV/AIDS affected population. The East side of the EMA needs all the types of services sought by St. Louis providers; in addition, they need to establish a basic housing service agency to coordinate housing options.
Currently, the St. Clair County Health Department provides monthly rental
assistance subsidies of $100 and limited emergency assistance to prevent
eviction by paying past due rent and utility bills. Funding for these services
comes from Ryan White Title I and Title II grants. The Department also
coordinates housing assistance with supportive services funded from the
Ryan White Care Act programs. The Metro-East AIDS Task Force Services Subcommittee
is preparing a strategic plan for housing options that addresses gaps in
housing services identified by consumers and providers. Local agencies
and community leaders are reviewing both private and public funding avenues
for development of long-term housing options.
The following services are provided:
Both side of the EMA provide this service. Emergency funds provide short-term rental subsidy payments for stabilization of an immediate housing crisis. Often individuals are in need of a one time assistance to pay rent or their utility bills while waiting to become eligible for SSI and SSDI or they are in need of short term assistance to become current on debts and to avoid eviction or shut-off of utilities.
Transitional housing packages of $3,400 are provided through Doorways for establishing new housing for homeless HIV+ individuals and families. The transitional housing package can be used to cover expenses of a short term stay in a hotel, rental deposits, rent payments, utility deposits, repairs, moving expenses and basic occupancy costs. The Illinois side of the EMA identifies and creates transitional housing space for HIV+ individuals and families.
Currently, on the St. Louis side of the EMA, efforts are underway to provide emergency/transitional housing for multiple diagnosed HIV+ individuals (mentally ill and/or substance abusers) who are homeless or at immediate risk of homelessness.
An increasing number of people and families from the entire EMA needs access to information about housing options. This is especially true for people living in poverty, women, minorities, and larger families. The stigma associated with HIV/AIDS makes it difficult to identify adequate housing options. This problem is especially acute in St. Louis county where no landlord has been identified who is willing to provide housing for individuals and families affected by HIV/AIDS.
As more people become affected by HIV, more housing coordinators will be needed to meet the growing challenge. These coordinators will be faced with the dual task of identifying housing and reaching out to landlords who can provide adequate and safe housing for persons and families affected by HIV/AIDS.
Unless adequate funding is allocated, short term transitional housing will quickly outstrip the availability of services .Safe temporary shelter space equipped to provide services to individuals and families affected by HIV/AIDS is necessary. As more people in poverty enter the AIDS service network, the demand for emergency assistance and rental assistance will rise proportionately. This is especially true for the minority population in the St. Louis EMA. In general their needs for emergency assistance and occupancy needs arises much sooner than with a more affluent population. With this reality in mind, it is imperative to assist and support the African-American AIDS service organizations and to enable them to meet the fast emerging needs of their clients.
In the next five years, with a swelling population affected by HIV and a longer life-expectancy due to medical advancements, the need to help people maintain their homes will grow. More people will be needing assistance in maintaining their homes for increasingly longer periods of time. Continuous funding in this area will be crucial in averting a homeless crisis. Unless aggressive efforts are made to expand housing options, large number of individuals will be entering the homeless/shelter system in order to access basic services.
A specific challenge is to reach persons who have already lost their homes. Active outreach to shelters is necessary to identify these individuals and families. Lack of adequate funding and assistance fails to identify individuals in the shelter and homeless network who are eligible for services. This factor is already exacerbating the homeless crisis. Moreover, most shelters are inadequate for persons living with HIV disease. The stress involved in living in shelters and the increased chance of exposure to viruses and bacteria can prove lethal to individuals with a compromised immune system. Persons living with HIV/AIDS need to avoid crowded and stressful living conditions to minimize their chances of developing opportunistic infections.
Assistance is especially problematic for consumers with dual diagnosis. Individuals with multiple diagnoses, either HIV and mental illness or HIV and substance abuse, or both, have to negotiate a system which does not know what to do with them. Often consumers end up being bounced from one special care provider to another.
The need for residential programs is increasing. The growing number of individuals with HIV illness identified through the emergency transitional housing options is quickly outpacing the availability of independent living arrangements. The need for residential housing options is growing rapidly as individuals who are currently outside of the AIDS service delivery network are getting sicker and will start entering the system. If steps are not taken to design and develop additional residential programs in the immediate future, the St. Louis area will be faced with a severe housing and homeless crisis for people affected by HIV/AIDS.
As more women, minorities and IV drug users need housing services, housing options that reflect their unique circumstances will have to be developed. Women with children can find a supportive environment and better share their resources in a group home setting. IV drug users in recovery may find these housing option necessary in order to successfully continue their recovery. Group homes provide an ideal living arrangement to individuals who function better in social settings. Persons in recovery, gay men, women with children could all benefit from this type of housing option.
Currently Doorways is developing a 36 bed facility to meet this need.
However, the facility will immediately operate at 100% capacity. This indicates
the urgency in developing supportive housing programs to meet future escalating
need. This is especially true if outreach efforts to individuals outside
the service delivery network are intensified. Outreach will quickly identify
a large number of people without adequate housing who are in need of on-going
supervised care.
Recommendations
Increase funds for transitional housing packages which may include a short term stay in a hotel, rental deposits, rent payments, utility deposits, repairs, moving expenses and basic occupancy costs.
Increase funding for outreach to identify individuals who have lost their homes or who are at an immediate risk of loosing their home.
Establish temporary shelters that target persons and families affected by HIV. In order to meet the specific needs of HIV affected consumers, shelters need to offer privacy, toilet facilities, and private sleeping rooms. These shelter conditions need to be offered in conjunction with on site supervision (to deal with emergency cases) , primary care, service coordination, food and nutritional supplement, mental health services, and drug and alcohol rehabilitation.
Establish shelter space and transitional housing specifically to serve individuals with multiple diagnosis. The multiple needs of this population should be addressed simultaneously. Adequate space needs to be available in order to deliver HIV/AIDS specific services in conjunction with substance abuse treatment and/or mental health treatment.
Specific care should be taken to make sure that services in homeless facilities are responsive to the unique needs and conditions of the HIV/AIDS homeless population. Education regarding the spread of the diseases will need to be integrated with other services delivered.
Establish rehab and conversion funds to develop new residential programs to keep pace with the growing need.
Establish funds to develop group homes. Group homes for persons with similar experiences and needs may find it beneficial to live in a shared living environment.
Ongoing projects and future projects can be funded through a variety of ways. Development projects are and will continue to be supported in part by the Supportive Housing for the Handicapped Homeless (McKinney Program). All of construction and 80% of related operating costs can be secured through the HUD 811 Program. Additional sources of funding may be secured through the Missouri Housing Development Corporation, City of St. Louis CDBG, Private funding, and HOPWA. Sources for operational costs can be secured from the McKinney Program, State Cash Grant, and resident contributions. Sources for services are expected to be funded through Ryan White I, Ryan White II, State General Revenues, and HOPWA.
The overall cost to adequately meet the growing needs on housing services
in the St. Louis side of the EMA is estimated to be:
$ 4,532,000 in 1995
$ 2,240,000 in 1996
$ 2,694,000 in 1997
$ 2,859,000 in 1998
$ 3,061,000 in 1999
The cost per service category for the five year period 1995-99 is estimated to be as follows:
| Resource Identification, Housing Coordination, Outreach | $845,000 |
| Emergency/Transitional Housing | $3,405,000 |
| Ongoing rental/mortgage subsidies | $2,115,000 |
| Independent living residences | $2,416,000 |
| Supportive Housing | $6,405,000 |
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