Meeting the social service needs of alcohol and other drug (AOD) abusers who become infected with HIV is an enormous challenge. A population that already has complex social service needs because of AOD abuse now has additional needs as a result of HIV infection. Further, this population may not be accustomed to going outside of the AOD abuse provider community to obtain services.
The nature of HIV disease requires an individual to actively utilize many social services, including housing; home healthcare; entitlement programs for medical care, food, transportation, and childcare services; respite care and support for caregivers and families; and legal and advocacy services.
Meeting these needs in an appropriate, comprehensive, and coordinated manner is a challenge because HIV-related disease is a complex condition and the social service system is decentralized. Typically, agencies at different levels of government are charged with providing different services such as housing, child welfare services, or entitlements. As a result, providers often must work with many agencies, secure different types of documentation from clients, and make sure clients follow through with procedures to become eligible for or receive services. The process can be confusing, labor intensive, and frustrating. Regulations, procedures, and eligibility requirements sometimes differ within and among agencies, further complicating efforts to secure needed social services for clients.
Providing social services to HIV-infected AOD abusers requires a high degree of cooperation and coordination among agencies. By working together, agencies can utilize existing services more effectively and break down barriers preventing service delivery. Different provider agencies serving HIV-infected AOD abusers must become familiar with various services, procedures, and eligibility requirements; develop good working relationships; devise ways to use existing community resources; and develop new mechanisms and resources to better meet the social service needs of this population.
In addition, staff from each provider agency should receive training in cultural sensitivity and competence so that they can provide effective services to this diverse population. Different cultures respond in a variety of ways to drug use, homosexuality, and illnesses such as HIV disease, and staff should understand these issues and their effects on clients' beliefs and behaviors. Moreover, staff members should understand that they themselves have likely internalized many beliefs and values of their own culture that must be examined. (See accompanying box on Cultural Sensitivity and Competence.)
AOD programs providing services to HIV-infected AOD abusers should have a thorough knowledge of the broad range of needs of this population. They should keep in mind, for example, that after years of chronic substance use and distressing behavior many substance abusers have alienated their family members and severed ties with friends who might provide support. This isolation can affect the individual's emotional and physical health and create an obstacle to even the most integrated delivery of social services. Persons with HIV disease have a variety of special needs. Many persons with AIDS need daily intravenous infusions of medications, either self-administered or provided by a caregiver or home health aid. Many need appetizing meals or transportation to grocery stores and physicians' offices. Some need periodic care for their children or help with housework. Some individuals lose their sight and need assistance in daily activities. Some may need help caring for pets -- for example, walking dogs. Others may need assistance with legal problems with employers or landlords or with making a will or arranging for guardianship of their children. It is only when providers understand the many needs of this population that they can take constructive and creative steps toward meeting them.
Cultural Sensitivity and Competence
The following are steps that treatment programs can take to enhance their cultural sensitivity and competence:
Establishing liaisons with culturally specific community groups and services.
Making active efforts to hire staff who are diverse in ethnicity, sexual orientation, and cultural identification. A commitment to the recruitment of a diverse staff involves advertising vacancies in specialist publications and accepting that additional time may be needed to fill vacancies.
Training treatment staff about the lifestyles, value systems, and communication styles of ethnic, homosexual, and bisexual populations through inservice training, literature, and offsite workshops (Cabaj, 1989;Marin, 1989). Treatment staff may rotate through community clinics that serve specific populations to become more knowledgeable about education, prevention, and treatment in a culturally aware context.
Displaying nonjudgmental, culture-affirming attitudes. Asking questions that relate to the client's sexual orientation and link to his or her community affiliations (for example, through the church, through various cultural ceremonies, or through the acceptance of non-Western healing practices such as acupuncture, curanderismo, sweat lodges, and santerRa) provides a sense that members of ethnic and cultural communities and their practices are accepted. (Appendix D includes a questionnaire from the San Francisco AIDS Foundation to assess the level of an agency's cultural proficiency.)
In this chapter, the social service needs of HIV-infected AOD abusers in four areas are described. In the following chapter, strategies for integrating services to meet these needs are described.
The four areas discussed in this chapter are:
Housing (including supported housing programs, home healthcare, homeless shelters, and hospice care)
An individual's untreated AOD abuse may in itself lead to homelessness, a condition that becomes doubly critical when the individual is also HIV infected. Appropriate and affordable housing is often not available for those living with HIV. It is not uncommon for them to encounter substantial barriers that make it difficult to obtain adequate housing. These barriers may include discrimination, lack of financial resources or health insurance, and the need for support and assistance with activities of daily living.
Ideally, housing services should address both HIV disease and AOD addiction through the provision of comprehensive in-home services or through collaboration with other providers. Housing should be available for all HIV-infected AOD abusers, from asymptomatic to terminally ill persons, and from active AOD abusers to those in long-term recovery. Residential programs should provide a continuum of care because clients' needs vary at different stages in AOD or HIV treatment. It is unrealistic to expect programs to provide all the services that clients may need at different times. However, programs should establish referral mechanisms and internal policies and procedures that enable them to provide a continuum of care to AOD abuse clients who are living with HIV/AIDS.
In addition to referral mechanisms, collaborative relationships need to be established with outside agencies for additional resources and technical assistance. Residential programs and facilities also should provide training for staff in the complex needs of this population, both in terms of their AOD abuse and their HIV disease.
Residential programs should be aware that one of the priorities of the Ryan White CARE Act is to provide a comprehensive continuum of care to individuals with HIV disease and their families. Programs may wish to explore obtaining CARE Act funds to create home health services and hospice services for HIV-infected AOD abuse clients. (See summary of CARE Act in Appendix E.)
Several residential programs have been developed by therapeutic communities (TCs) to respond to treatment needs of persons with HIV/AIDS, and others may wish to model their services on these programs. Prototypes, a TC for women and children in the Los Angeles area, has revised some of its rules and procedures to provide a continuum of care and meet the special medical and other needs of HIV-infected women (see box on next page on custody). RAP, Inc., an Afrocentric TC in Washington, D.C., has established a special HIV/AIDS residence that includes people at different stages of AOD recovery and has adjusted rules and procedures to provide a continuum of care that meets the needs of HIV-infected residents.
Access to and availability of housing are two key issues for HIV-infected AOD abusers. Currently, in many communities, the demand for housing and residential treatment programs for HIV-infected AOD abusers far exceeds the availability of programs or slots.
In addition, existing HIV/AIDS residential programs often have regulations or requirements that make HIV-infected AOD abusers ineligible for their services. For example, programs may require that residents be free of AOD use for 6 to 12 months, have no convictions for sales of drugs or sex, have no mental health disorders, and do not receive methadone maintenance treatment. The latter requirement is usually related to the HIV/AIDS residential program staff's lack of familiarity with methadone maintenance.
Two models of independent-living residential programs for HIV-infected AOD abusers are "sober hotels" and Oxford Houses. Sober hotels were developed in San Francisco to provide single rooms in a downtown location for homeless men, many of whom are HIV infected and who are not currently abusing AODs. Oxford Houses are group residences for people in recovery from AOD abuse, managed by the residents with the assistance of professional staff. The first Oxford House was established in the Washington, D.C., metropolitan area in 1975, and there are now hundreds of similar recovery houses throughout the United States. Under Public Law 100-690 (the Anti-Drug Abuse Act of 1988), each State is required to establish a revolving fund to make loans to cover the first month's rent and security deposit for housing for groups of recovering individuals. Each new Oxford House group is given an Oxford House charter and receives assistance from a national office in operating a successful recovery house.
Active AOD abusers are the most difficult clients to house. A balance must be struck between empathy and harm reduction on one side and collusion and enabling on the other. Housing a known AOD user can be problematic for a residential program. It can create discipline and safety problems, as well as discomfort for the other residents. Some HIV/AIDS residences admit AOD users, with no particular requirements affecting them. Others may impose requirements. If a program does not impose sanctions for active AOD use, it may be aiding in the client's addiction and may jeopardize others' progress in recovery. On the other hand, requiring abstinence and/or participation in treatment (such as methadone maintenance or counseling) can present problems if an individual is too ill to comply; such requirements may jeopardize the individual's participation in a residential program.
Providers of residential services need education about opioid substitution therapy. Such education would help end the discrimination against methadone-maintained clients that still exists in some areas and would increase their access to residential and housing programs. Residential service providers should familiarize themselves with methadone maintenance treatment programs (MMTPs) and establish collaborative relationships with them to enable residents to remain in methadone maintenance treatment while they are in residence. Likewise, MMTPs should network with residential programs, educate them about their clients' needs, and establish collaborative relationships with staff of residential programs to increase their clients' access to these services. Three other Treatment Improvement Protocols (TIPs) in this series contain detailed information about providing opioid substitution therapy services -- methadone and LAAM -- and an array of adjunct services. These TIPs include State Methadone Treatment Guidelines, Matching Treatment to Patient Needs in Opioid Substitution Therapy, and LAAM in the Treatment of Opiate Addiction.
Community education is also needed to facilitate placing residential programs in neighborhoods conducive to the maintenance of a healthy lifestyle. At present, supported housing services are often located in areas with high rates of AOD use, challenging residents' continued abstinence. The Federal Fair Housing Assistance Act, the Federal Americans With Disabilities Act, and the Public Health Service Act authorizing the provision of substance abuse prevention and treatment block grants have removed substantial barriers to the establishment of special housing programs. However, community education by AOD treatment programs, residential programs, and advocacy groups is still essential to overcome the "not in my backyard" (NIMBY) syndrome.
Residential AOD treatment programs that are publicly funded or licensed should be aware that they are required to comply with the provisions of the 1990 Americans With Disabilities Act regarding housing accessibility for individuals with physical disabilities (National Council on Disability, 1993.) Appropriate modifications might include, for example, adding ramps and wheelchair-accessible toilet and bathing facilities. (See Access to Treatment section in Chapter 7.)
Symptomatic HIV-infected persons often require services in addition to those offered in traditional residential housing programs. Helpful efforts might include referrals to appropriate resources or incorporation of new services into existing residential programs. For example, residential programs can help residents arrange for take-home methadone or provide transportation to AOD treatment programs, medical appointments, and support group meetings.
Comprehensive and coordinated home healthcare services for HIV-infected AOD patients should include the following elements:
Coordination with public health nurses, home health aides, AOD counselors, and other individuals working with patients
Case conferences with the patient, family, and other health workers involved in the patient's care
Family counseling and education
A team approach: representatives from all institutions and disciplines should be involved in planning and monitoring home-based care.
Although home healthcare is an important part of the continuum of housing support services, it is often fragmented, with a confusing array of services, funding sources, and restrictions. Resources are often insufficient to meet needs. Coordination and collaboration among housing programs, social service agencies, and home healthcare agencies are essential to ensure the effective delivery of these services to HIV-infected AOD abusers.
For patients on opioid substitution therapy, home healthcare presents special problems. Home healthcare workers are typically not authorized to dispense medications. As a result, many individuals receiving methadone maintenance treatment must be hospitalized in order to be kept on their treatment regimen. However, the Food and Drug Administration grants waivers on an individual basis so that clients who are too sick to pick up their methadone can arrange for it to be picked up for them -- by home health workers or residential staff, for example.
Home healthcare workers could benefit from training in AOD abuse and HIV issues. Certified and/or approved training courses offered by agencies such as the American Red Cross may be utilized, or home health agencies may wish to develop inhouse staff training programs. In addition, home health staff should receive cultural sensitivity training to increase their level of comfort in dealing with people of different ethnicities, economic backgrounds, and sexual orientations.
A hospice program provides palliative care (care that enhances comfort and strives to improve quality of life) to individuals who are terminally ill. Hospices also provide around-the-clock supportive services to patients and their families or significant others.
Hospices originated in England as residential facilities; however, in the United States, 90 percent of hospice care is provided in the home. Hospice care typically involves a primary caregiver -- usually a partner or family member living at the same residence -- who is willing and able to provide ongoing care to the patient. Most hospices provide volunteers to help the primary caregiver.
Some hospices are inpatient facilities, either freestanding independent facilities or based in hospitals or nursing homes. Depending on their needs, patients may receive hospice care both in a hospital and at home during the end stage of their illness. Although most hospice care requires that the patient have a place to live, some hospices will provide care in residential facilities other than in a private home. Some hospices also provide a residence for homeless people.
Traditionally, hospice care was designed to deliver care in the end stage of a terminal illness. However, in response to the AIDS crisis, many hospices now accept AIDS patients at earlier stages of disease and are more flexible about accepting AIDS patients who are receiving medical treatment for opportunistic infections. Hospices do not accept patients who are receiving medical treatment to prolong life; however, they will accept patients who are receiving treatment to make them more comfortable. Hospice care would not be appropriate for asymptomatic or mildly symptomatic HIV patients.
Most hospices are Medicare certified and in some States they can accept Medicaid. In addition, many private insurers provide coverage for hospice care.
According to the report of the National Commission on AIDS Working Group on Social/Human Issues, "Affordable and appropriate housing is of critical importance to persons with HIV disease, yet an estimated 20,000 to 32,000 HIV-infected individuals are homeless. Many others are in immediate danger of becoming homeless" (National Commission on AIDS, 1991). Tuberculosis (TB) is a serious problem in many homeless shelters, and a significant percentage of people living in shelters are HIV-infected AOD abusers.
Despite the high incidence of AOD abuse among homeless people, homeless shelters are often not considered part of the AOD treatment system and are excluded from the service planning and delivery process. Medical care and AOD services provided in shelters are often inadequate. Many shelters require residents to leave the facility early in the morning and return in the evening; such policies are particularly problematic for residents who are ill, including those with HIV disease or TB. Shelter residents and staff may lack knowledge about the relationships between AOD use and infectious diseases, including HIV and TB. AOD treatment providers should make efforts to develop linkages with homeless shelters in order to overcome these barriers and provide services to this hard-to-reach population.
It is helpful to define "family" broadly to encompass both traditional and nontraditional families. Family may include significant others -- individuals who may be unrelated but who have a close relationship with the client and provide for the client's physical, emotional, and spiritual well-being. Family members and significant others should be encouraged to participate actively in treatment planning and medical care decisions regarding the client's AOD problems and HIV disease.
All family members who provide close support to the seriously ill member often need support themselves. Providing social service support for the family is a cornerstone in the provision of coordinated, comprehensive care to HIV-infected AOD abusers. For example, the provision of home-based services may be critical in enabling a family to remain together, and it may also be more cost-effective than institutionalization of the HIV-infected family member.
Case management is the process of linking patients with needed services, particularly when these services are located at different sites and provided by different agencies. Case management originated in the social work profession and has become a standard practice in the social services and mental health fields.
While there is no single, universally accepted definition of case management, the term can be broadly defined as a process in which the full range of services is identified to meet a person's psychosocial, economic, and health-related needs either directly or through linkage and referral. The case manager is the professional responsible for coordinating the patient's care and arranging access to needed services, often also serving as an advocate and broker. In the AOD treatment field, case management can involve arranging access to needed services that are not part of a client's formal treatment program such as aftercare, followup, family support, and referrals to other agencies. Four models of case management are described in the accompanying box, entitled "Role of the Case Manager: Four Models," including one developed by the consensus panel.
An important function of the case manager is to ensure that HIV-infected AOD abusers gain access to entitlement benefits, such as food stamps, Medicare and Medicaid, and supplementary income. Applying for eligibility for various programs and maintaining eligibility status often require special knowledge of program regulations and may involve completing forms and contacting a variety of agency personnel -- procedures that may be daunting or confusing, especially to a person who is ill. Case managers should develop a working knowledge of entitlement programs that may benefit HIV-infected AOD abusers. (See box on Entitlements and the Representative Payee Program.)
It is important to note that case management with any population involves a high level of skill and knowledge. Traditionally, AOD treatment providers have not hired enough professional social workers to carry out these responsibilities for substance abuse clients. In addition, they often do not provide adequate training to personnel, such as AOD counselors, who are assigned these duties. Case management with HIV-infected AOD abusers is labor intensive and requires specialized knowledge and skills. AOD providers will have to revise their expectations regarding caseload size and frequency and length of client contact when case managers are assigned to work with these clients.
Services for HIV-infected AOD abusers are typically provided by a variety of treatment agencies, each of which has different funding sources, regulations, and responsibilities for specific aspects of care. Case management plays a critical role in promoting a continuum of care by ensuring that clients are linked to needed services and are receiving appropriate therapy that does not conflict with their AOD treatment.
A variety of models of case management for HIV-infected individuals have evolved as a result of different funding sources and methods of healthcare financing. The report of the National Commission on AIDS Working Group on Social/Human Issues (1991) described the various models of case management as follows.
In some instances, case management is funded by the government, is hospital-based, and is primarily linked to discharge planning. Other case management programs, particularly those funded by the Health Resources and Services Administration (HRSA) and the Robert Wood Johnson Foundation (RWJ), are more community based and follow individuals both in the hospital and beyond. In some States, case management is provided by Medicaid programs, especially in States with home- and community-based waiver programs. Yet other programs have emanated from prepaid, managed care programs in health maintenance organizations (HMOs).
Effective case management for HIV-infected AOD abusers encompasses linkages with a full spectrum of services and agencies, including:
AOD treatment programs
Mental health services
Child welfare agencies, including foster care and protective services
Community resources, including AIDS service organizations, and churches
Legal services
Public entitlement programs
Perinatal addiction programs
Educational programs, including ones for children who are exposed to drugs in the community
HIV-specific health and counseling services
Programs that provide basic services, such as food, housing, transportation, respite care, and childcare.
Case management requires linkages among agencies responsible for different aspects of a client's care. It is recommended that formal interagency agreements be established that clarify the responsibilities of all the organizations providing services to clients. (See discussion of interagency agreements in Chapter 7.) Agencies should also have agreed-upon procedures for interagency communication and evaluation mechanisms to track the effectiveness and outcomes of case management on an individual's or family's health status. It may also be helpful to calculate the levels and types of staff, resources, and facilities needed to carry out effective case management, bearing in mind that clients' needs for intensive case management services will vary depending on their stage of AOD and HIV treatment.
Staff members of many social service agencies and community-based organizations perform outreach functions to deliver specific services to populations that may not otherwise seek or have access to services. AOD outreach workers play a key role in encouraging AOD abusers to seek and remain in treatment, comply with medication regimens, and reduce HIV risk behaviors such as unsafe drug-taking practices, unsafe sexual practices, and AOD abuse. Street outreach workers perform an essential public health role; they gather information critical to the development of effective public health policy and are on the front lines in terms of implementing health policy. Screening for infectious diseases such as HIV-disease, TB, and sexually transmitted diseases is an important function of outreach workers. Another TIP in this series, Simple Screening for Outreach for Alcohol and Other Drug Abuse and Infectious Diseases, provides an overview of this important aspect of the role of outreach workers.
Case finding, counseling, and creating linkages with other health and social services agencies are other important responsibilities of outreach workers. Like case managers, outreach workers may have a coordinating role among social service agencies, healthcare providers, community organizations, and AOD treatment facilities to ensure that clients obtain needed services. AOD programs providing services to HIV-infected AOD abusers should recognize the vital role played by outreach workers in serving many individuals in this population and should include outreach workers in staff planning meetings and case conferences and as active members of the program's interdisciplinary team.
For example, outreach worker participation in discharge planning can facilitate continuity of care for patients. An outreach worker who is in close contact with a client may be in the best position to determine whether a discharge plan realistically meets the individual's needs. In addition, when the outreach worker is involved in the discharge planning process, he or she can more easily track the patient after discharge.
Outreach workers may also provide:
Crisis counseling and referrals for emergency care to AOD abusers not enrolled in treatment
Assistance in securing transportation, childcare, and other services that may encourage AOD abusers to enter or reenter treatment
Monitoring AOD abusers' consumption of medications through home or street visits
Consultation and education to other social service agencies, healthcare providers, and community- based organizations on AOD abuse and HIV issues.
AOD outreach workers should be familiar with the community in which they work. For example, outreach workers performing HIV risk reduction education among heroin addicts must know where these individuals congregate (for example, in shooting galleries or abandoned buildings) and be comfortable working in these settings. Similarly, they can benefit from knowing about national organizations and hotlines. Both can be the source of helpful information and materials for use in community work.
Many AOD outreach workers are themselves in recovery from AOD abuse. Although support groups for all outreach workers are very important, workers who are in recovery have special needs that should be addressed in support groups. These individuals must be secure enough in their recovery process to resist relapse when their work brings them into close contact with persons who are currently abusing AODs.
Prototypes, a therapeutic community in the Los Angeles area and described in the box on the next page, is a program that successfully employs individuals in recovery to conduct outreach. This program hired and trained 25 local women, many of whom had been sex workers or partners of sex workers. Following their training, the women returned to their communities to educate other female AOD abusers about high-risk behaviors and encourage them to enter treatment.
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