Persons with human immunodeficiency virus (HIV) disease who are also substance abusers face a multitude of problems related to their health, addiction, and survival needs. These complex and multiple needs can only be met within a framework of a continuum of comprehensive care (Batki, 1990b;Sorensen and Batki, 1992). However, most alcohol and other drug (AOD) abuse treatment settings do not have the resources to provide the ideal "one-stop-shopping" model of service. Even when such ideal circumstances do exist, coordination and collaboration among a community of providers are still necessary to meet the needs of HIV-infected, substance-abusing clients.
Earlier chapters of this Treatment Improvement Protocol (TIP) describe interventions and recommend structures and procedures to provide for the medical, mental health, and social service needs of HIV-infected substance abusers. This chapter focuses on the linkages and collaboration needed to meet these needs more effectively. Suggestions are made for establishing and maintaining linkages among the many organizations -- Federal, State, and local government agencies and local treatment providers -- involved in providing services to HIV-infected AOD abusers.
In the first section, two important Federal initiatives are described that encourage collaboration and the establishment of service linkages among agencies involved in providing or funding services for HIV-infected AOD abusers. These initiatives are: 1) the 1993 Substance Abuse Prevention and Treatment Block Grants: Interim Final Rule (45 C.F.R. 96), which applies to all States and treatment providers that receive Federal block grant funds for the provision of AOD abuse services, and 2) the Ryan White Comprehensive AIDS Resources Emergency Act (P.L. 101-381), which provides grants to States and cities affected by the HIV epidemic.
The second section of this chapter reviews the roles of Federal, State, and local government agencies in policymaking and funding services for HIV-infected AOD abusers and describes strategies for establishing and maintaining linkages among government agencies. The role of treatment providers in enhancing collaboration and linkages is also discussed.
The 1993 Substance Abuse Prevention and Treatment Block Grants: Interim Final Rule contains a number of mechanisms for improving service delivery through enhanced collaboration and linkages. (See summary of regulations in Appendix B.) The Federal Government agency responsible for administering and implementing the Substance Abuse Treatment and Prevention Block Grants: Interim Final Rule is the Center for Substance Abuse Treatment (CSAT).
Requirements for States and treatment providers receiving block grant funds include:
Services for pregnant women and women with children. Programs receiving funding from the block grant's set-aside for pregnant women and women with children must provide primary medical care (including prenatal care and childcare); pediatric care; gender-specific substance abuse treatment and other therapeutic interventions (such as interventions concerned with sexual and physical abuse); and therapeutic interventions for children, as well as case management and transportation services to ensure that clients have access to these services.
Services for women. Programs receiving block grant funds for services to women must provide a "comprehensive range of services to women and their children, either directly or through linkages with community-based organizations," including case management, drug-free housing, and prenatal care.
Waiting list management. States must establish waiting list management programs that systematically report treatment demand and document the provision of interim services for clients who cannot be admitted to treatment within 14 days. At a minimum, such interim services must include counseling about tuberculosis (TB) and HIV.
TB services. Programs must provide TB services, either directly or through linkage with other providers, and develop written procedures for the implementation of these services.
HIV early intervention services. In States with 10 or more AIDS cases per 100,000 population, programs are required to establish linkages with a comprehensive community resource network of health and social service organizations to provide HIV early intervention services.
Evidence of coordination. Programs must demonstrate coordination of treatment and prevention activities with other appropriate services (for example, health, social, correctional, criminal justice, education, vocational rehabilitation, and employment). A memorandum of understanding (MOU) is the suggested method of establishing agreement among agencies.
Needs assessments and peer review. States must conduct statewide needs assessments to document needs and efforts to improve services and perform "independent peer review to assess the quality, appropriateness, and efficacy of treatment services provided in the State." At least 5 percent of programs providing services in the State must undergo peer review.
Congress enacted the Ryan White Comprehensive AIDS Resources Emergency (CARE) Act in 1990 to improve both the quality and availability of care for people with HIV disease and their families. The act provides emergency relief grants to cities and metropolitan areas disproportionately affected by the HIV epidemic (Title I) and formula grants to States for the provision of HIV-related healthcare and support services (Title II). (See Appendix E for a summary of the act.)
To encourage cooperation and coalition building, Title I of the CARE Act requires recipients of funds to set up HIV health services planning councils to plan, develop, and deliver comprehensive outpatient healthcare and support services for people with HIV/AIDS. The CARE Act is administered by the Health Resources and Services Administration (HRSA), an agency of the U.S. Department of Health and Human Services.
The CARE Act requires that membership of planning councils include persons with HIV/AIDS, healthcare providers, community-based service providers, social service agencies, local public health departments, State government representatives, nonelected community leaders, mental health providers, and hospital or healthcare planning agencies, as well as agencies that were grantholders for previous demonstration projects funded by HRSA and recipients of CARE Act Title III funds. The size of the HIV planning council is determined by the chief elected official (CEO) of the eligible metropolitan area.
Planning councils develop plans for the organization and delivery of HIV-related services and assess the efficiency of the administrative system in charge of allocating funds. Planning councils also make recommendations to the CEO on funding priorities. CARE Act grant recipients must participate in established HIV planning councils.
The structure and functioning of HIV planning councils can vary greatly (Bowen et al., 1992). For example, in San Francisco, the planning council's meetings are open to community members. Nonvoting members can participate in decisionmaking and advocate at council meetings for groups they feel are being overlooked.
Throughout this section on enhancing linkages, the focus is on agencies and what can be done at the organizational level to improve services for HIV-infected substance abusers. However, the importance of individual staff members in the creation and maintenance of linkages cannot be overemphasized. Agencies should have both formal and informal systems for making all staff members aware of existing linkages and the roles of all the agencies involved in the service continuum. In this way, individual clients will be assured of receiving services.
Furthermore, a primary factor in the success of linkages is the relationships that develop between individual staff members from linked organizations. Generally, these relationships develop in the course of people working together. However, programs should find ways to support and enhance these relationships; for example, program administrators can encourage their staff members to visit other agencies and meet staff with whom they interact. Inservice training or informational presentations on agency functions and the roles of various personnel can help ensure that all resources are being utilized.
The Federal Government's role in HIV/AIDS activities is to identify national priorities, provide coordinated funding for State and local activities, and facilitate the development of effective approaches to service delivery. The Federal government's function is to create an environment for collaboration and integration among agencies providing education, prevention, treatment, and research funds for activities related to HIV/AIDS and alcohol and other drug (AOD) abuse. In addressing treatment needs, the Federal role is to promote the integration and coordination of relevant services across Federal, State, and local levels of government, as well as among regulatory agencies, public and private institutions, professional disciplines, and cultural communities.
Inter- and intra-agency task forces are mechanisms used at the Federal level to promote collaboration and communication. The role of these task forces is to identify the multiple needs of, and public health risks presented by, the HIV-infected substance-abusing population. Activities of such task forces include long-range planning for the distribution of funds to treat and provide other essential services to HIV-infected AOD abusers; cross-training of medical and clinical staff to ensure competence in the assessment, education, and treatment of chemically dependent persons who have HIV infection or AIDS; and developing incentive plans for demonstrated collaboration among State agencies providing AOD, health, and welfare services.
Federal agencies involved with HIV/AIDS have traditionally operated independently of one another as they administer and regulate services related to AOD abuse, HIV/AIDS, and mental health. Funds are disbursed either according to specific categories of care or as block grants. This fragmentation has sent the message that substance abuse, HIV disease, and psychiatric disorders are separate and distinct conditions that can properly be addressed independently of one another.
Service provision at the community level often reflects this isolation of funding streams. For example, providers of primary medical care to HIV-infected persons often do not treat substance abuse problems. AOD abuse treatment settings are rarely equipped to evaluate, diagnose, or treat conditions related to HIV disease. Mental health service providers often are not able to medically treat AOD abusers or persons with (or at high risk for) HIV disease.
The President's Commission on HIV/AIDS was established in 1989 to increase awareness and understanding of HIV/AIDS and its impact on American society. The commission held public hearings and published a report on the impact of HIV/AIDS in America. In addition, Congress established the National Commission on AIDS to define specific priorities and approaches to dealing with HIV/AIDS. After producing a number of reports and recommendations, the National Commission concluded its work in 1993 when its legislative authorization expired.
The White House Office of National AIDS Policy Coordination was established in 1993 to coordinate Federal agency efforts and provide a high-profile focus on HIV/AIDS. However, individual Cabinet and agency level efforts have been in place for several years. Several Federal agencies, including the U.S. Food and Drug Administration and the Health Resources and Services Administration, have also established AIDS coordination offices or designated officials with responsibility for HIV/AIDS coordination efforts. Also in 1993, an Office of AIDS Research was established by Congress at the National Institutes of Health (NIH) to coordinate institute research activities on HIV/AIDS.
The Substance Abuse and Mental Health Services Administration (SAMHSA) established an AIDS office in 1994. SAMSHA's Office on AIDS, in conjunction with the AIDS offices in CSAT, Center for Substance Abuse Prevention, and the Center for Mental Health Services, is engaged in an ongoing process to further develop HIV-related programs within SAMSHA through:
A comprehensive and continuing assessment of unmet HIV-related needs of the populations targeted for the agency's services. These populations include people who have alcohol and drug abuse problems, those at risk for alcohol and drug abuse, those with mental health needs, and the seriously mentally ill.
Analysis of those unmet needs.
Recommendations for program development and enhancement of SAMSHA programs.
Federal agencies with a role in generating funding for services related to HIV/AIDS are listed in Exhibit 6-1. As shown, most agencies are within the U.S. Department of Health and Human Services.
Varying levels of coordination exist within and among different Federal agencies. For example, the Centers for Disease Control and Prevention (CDC) requires that applicants notify State health departments that they have applied for Federal funds. Once grant decisions have been made, Federal funding authorities notify States about decisions to award monies to designated projects in specific localities. Thus, similar projects in the same community may receive grants for the same type of activity, one directly from a Federal agency and another from the State.
The consensus panel that developed this Treatment Improvement Protocol recommends the following Federal policy changes to enhance collaboration among Federal, State, and local agencies:
Funding policies. More Federal agencies should adopt funding policies that give priority to entities with demonstrable collaborative projects and provide active technical assistance to organizations that want to engage in collaborative projects. Federal programs that currently require collaboration as a condition of funding include the 1993 Substance Abuse Prevention and Treatment Block Grants: Interim Final Rule, the Ryan White CARE Act's Title I and II programs, and CDC prevention programs.
Demonstration projects. Funding of demonstration projects should be extended beyond 3 years to allow funded projects time to demonstrate successful outcomes. Such a revision would reflect a new Federal collaborative commitment to State and local efforts.
Internal communications. Mechanisms should be created within Federal agencies to ensure communication and coordination among all HIV and AOD abuse programs.
Minimum standards. Minimum program components and standardized protocols of care should be established for programs providing services to substance abusers at various stages of HIV disease.
Technical assistance. Technical assistance in program planning, currently provided by CSAT and CSAP, should be expanded.
Training. Incentives should be provided to national professional health organizations and centers of higher learning to dedicate monies to train graduate students in the health and behavioral sciences in HIV/AOD abuse issues.
State-level collaboration is essential between States and Federal funding agencies, among State agencies, between States and local governments, and between States and community organizations or systems of care. Lack of State collaboration and planning leads to duplication of effort and inefficient use of limited financial resources. For example, many States receive Federal funds that they then distribute to local authorities and community-based organizations. However, some Federal grants go directly to local organizations without the knowledge of the State. Thus, it is difficult for States to have a comprehensive understanding of what, how, and where prevention, education, research, and treatment programs are being developed or established throughout the State.
Although many States have developed planning and collaboration mechanisms to address the care issues presented by HIV-infected substance abusers, such mechanisms may not be effective for a variety of reasons, including shortage of funds, interagency mistrust, a lack of trained personnel, and an absence of political directives requiring collaboration. As a result, programs may develop in a reactive, piecemeal, fragmented fashion. State agencies may also resist confronting the fiscal consequences of HIV disease. The establishment of formal relationships among State agencies to encourage the development of integrated and coordinated services for HIV-infected persons with AOD abuse would help to overcome some of these barriers. In particular, linkages should be established between State AOD and HIV planning committees.
The following are measures that States could implement to improve State-level collaboration.
Specific objectives. States should set specific
coordination and planning objectives that are consistent with the requirements of federally funded programs. These objectives should include protocols and minimum program components for the comprehensive care of HIV-infected substance abusers.
Community assistance. States should provide guidelines to communities on how to develop coordinated programs and assist communities in developing coalition-building strategies.
Cross-training. States should conduct cross-training of staff of key State departments.
Resource manual. States should develop a statewide HIV/AOD abuse resource manual that is updated quarterly, a comprehensive directory of AOD/HIV contracting agencies, and a uniform database that is consistent among providers.
Facilitate collaboration. States should make every effort to facilitate collaboration among departments that provide related services.
The purpose of collaboration at the local level is to facilitate the development of comprehensive service delivery systems that address the medical and psychosocial needs of HIV-infected AOD abusers. Linkages need to be created both "up" to Federal and State authorities and "down" to providers such as hospitals and community-based organizations.
Numerous barriers exist to collaboration at the community level. Agencies may lack knowledge of existing resources. Differing treatment philosophies and intense competition for scarce resources may breed mistrust among agencies. Some communities lack a mechanism such as a consortium to provide a forum for the development of linkages.
A consortium is a key mechanism in bringing about community-level collaboration. By bringing together representatives of government agencies, treatment providers, and community-based organizations, a consortium can facilitate interagency communication and act as a catalyst for a variety of activities. A consortium can be a vehicle for technology transfer and mentoring among providers. It can be especially useful in supporting newer, smaller community-based organizations.
A consortium collaboration process can be used to produce a long-term local plan for the provision of services to HIV-infected AOD abusers, taking into consideration community-specific needs such as language, cultural relevance, and community empowerment. By involving hospital-based HIV-related primary care and AOD abuse treatment institutions and promoting cross-training among AOD abuse treatment and HIV primary care, social services, and mental health providers, a consortium can facilitate the development of a network of highly trained professional staff capable of responding to the multiple, complex needs of HIV-infected substance abusers. A consortium might also establish an HIV early-intervention plan that included an HIV early- intervention medical center with a specific unit for AOD abuse treatment. Some consortia become involved in advocacy and in educating legislators about the needs of HIV-infected AOD abusers.
A consortium may be a local government-led body, a community-based forum directed largely by providers, or an effort coordinated by an advocacy group. Consortium membership should reflect the ethnic, gender, and sexually oriented diversity of the local community. Communities receiving funding under Title I of the Ryan White CARE Act must set up multidisciplinary planning councils (see Ryan White CARE Act, above).
The following strategies may be used by local governments to achieve collaboration among AOD-abuse and HIV/AIDS-treatment providers.
A representative group with designated goals. A collaborative body should be established that is driven by a designated goal or set of goals. Some consortia focus on making funding decisions to meet identified needs; others concentrate on identifying specific needs that, if met, would help create a comprehensive service system. Still others carry out advocacy efforts with government agencies.
Cross-training. Cross-training should be implemented to develop professional competence in HIV and AOD abuse issues. Cross-training may be sponsored by State entities, local governments or their agents (with Ryan White funding), or community-based organizations through memorandums of understanding (MOUs) or service agreements.
Technical assistance. Technical assistance should be given to providers so they can develop their ability to locate and successfully apply for State and Federal grants for prevention, research, and direct services.
In a comprehensive, coordinated system of care for HIV-infected substance abusers, AOD abuse treatment facilities are linked with collateral providers of medical, psychosocial, and other services. Linkages are typically established and funded with the assistance of local, State, and Federal entities. MOUs can be used to define and establish working relationships among agencies. See box on interagency agreements and Appendix H, Sample Memorandum of Understanding. Such agreements clarify relationships, roles, and responsibilities.
It is appropriate that AOD abuse treatment programs coordinate HIV care for their clients because program staff understand not only the chronic, relapsing, and progressive nature of addictive disorders but also the typical behavior patterns and communication styles of AOD abusers. Many HIV care providers lack training and experience in dealing with people who need AOD abuse treatment. Substance abusers in treatment generally feel more understood, accepted, and respected in AOD abuse treatment settings (Umbricht-Schneiter et al., 1994). These clients are sensitive to gestures, tone of voice, and other verbal and nonverbal messages signifying rejection or disapproval. When such messages are picked up, clients are less likely to meet appointments and follow through with self-care.
Mechanisms for securing linkages among providers include:
Case management. Institutional efforts to link functionally separate systems of care are essential to facilitating individual case management through which clients are linked to a wide spectrum of needed services. (Case management is discussed in Chapter 5.)
Educational outreach and cross-training. Cross-training on HIV and AOD abuse issues for professionals in primary healthcare, substance abuse treatment, social services, and mental healthcare is essential to the development and coordination of a continuum of services for substance abusers with HIV disease. The substance abuse treatment community has much to contribute to the education of professionals, community groups, private organizations, and government agencies about the interface between HIV/AIDS and substance abuse. Becoming a resource to the community through providing inservice training on substance abuse treatment issues and HIV disease is a way of establishing connections and gaining credibility with other healthcare professionals.
Joint ventures. AOD treatment facilities can cope with reduced revenues by linking with other treatment programs to obtain contracts with insurance companies and Medicaid as primary providers for the care of HIV-infected substance abusers.
Use of volunteers. Volunteers can be helpful in performing ancillary services such as transporting or accompanying clients to appointments, providing childcare, serving as interpreters, and helping to negotiate bureaucracies.
Agencies providing services to HIV-infected AOD abusers are advised to set up formal interagency agreements that clarify the institutional responsibilities of all the organizations from which clients will be receiving services. (Such agreements are currently being developed on a patient-by-patient basis.) These agreements may be called mutual service agreements, linkage agreements, or memorandums of understanding (MOUs).
Agencies involved in interagency agreements may include:
HIV/AIDS service organizations
HIV/AIDS healthcare clinics
Primary care physicians
AOD treatment and support services providers
Social services agencies
Public health departments (especially for CARE Act grants)
Home healthcare agencies
AOD prevention programs
Prenatal and postnatal care providers
Childcare agencies
Entitlement programs
Respite care providers
Aftercare providers.
An interagency agreement should describe the specific services each agency is expected to provide and the frequency with which services are to be provided. The agreement should also identify, by name and title, a contact person in each agency. Agencies should also devise and agree to an interagency communication mechanism. To avoid duplication of services (where more than one agency is providing case management services to the same client), the interagency agreement should describe a procedure for designating a "lead agency" for each patient; the lead agency is responsible for providing the case manager or case coordinator and for convening interagency case conferences.
Other issues that may need to be dealt with in interagency agreements include policies on sharing client information among agencies and the limits of each agency's responsibilities toward an individual client. Including such issues in a formal agreement may help to prevent disputes arising between agencies over "turf." It is recommended that each agency involved in an interagency agreement design a checklist of the services it has agreed to provide. The list can be used as a record of what services were provided to a client and when; it may be shared with the patient's case manager and with other provider agencies if appropriate.
Service agreements may be needed to cover medical emergencies arising outside of a clinic's service hours. Issues to be covered in these agreements may include preferential services for clients covered by the MOU, attending privileges at private or public hospitals for medical staff of AOD abuse treatment facilities, designation of registered nurses to act as liaisons between AOD abuse treatment providers and hospitals, and shared on-call status of medical staff after treatment hours. Several AOD abuse treatment facilities may pool their resources for this purpose.
Such service agreements should also address the need for a system to ensure that AOD-abusing clients with advanced AIDS have access to treatment when they become unable to walk or to monitor and follow through with treatment regimens. Agreement should be reached on care options such as the use of visiting public health nurses, home hospices, and mobile clinics that dispense medication. (See Chapter 5 for a discussion of home healthcare).
Coalition Building
Coalition building is one of the most effective ways of addressing the complex issues involved in meeting the social services needs of HIV-infected AOD abusers. Coalitions may take a variety of forms (such as consortia or task forces) and may focus on a variety of goals (such as advocacy or education). The following suggestions may help in creating strong, active, effective coalitions.
Coalitions should include a broad range of people, among them healthcare professionals, clients who use AOD/HIV services, community leaders, and political officials.
HIV and AOD abuse treatment professionals should actively participate in coalitions concerned with treatment and social services.
Coalitions should encourage and facilitate consumer involvement in service planning and delivery. For example, clients should be involved in helping to identify gaps in services. Empowerment is not only important for clients, but it also helps to advance the cause of AOD/HIV services.
Alliances with religious organizations may be particularly valuable in certain communities. In many African-American communities, churches can provide an often untapped pool of potential volunteers. Churches may also be able to provide much-needed space for AOD/HIV programs.
Appealing to people's enlightened self-interest is important when working with coalitions. For example, if an AOD program is interested in closing some of the numerous liquor stores that are close to a particular high school, it might be helpful to get parents of students at the school involved in the effort.
Maintaining linkages. Regular multidisciplinary interactions are important to maintaining and strengthening linkages. These can include weekly, interdisciplinary inpatient and outpatient rounds, interagency inservice training sessions, weekly HIV and substance abuse task force meetings of community- and hospital-based administrators and key clinicians, and monthly case conferences. It is also helpful when staff members visit settings that are frequently used by their clients, such as halfway houses, hospices, and hotels.
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