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CARE Act Title II Manual - 2003 Version

VIII. Program Guidance

4. Early Intervention Services

Introduction

1. Legislative Background
2. HAB/DSS Expectations
3. Components of EIS
4. Conditions for Funding EIS
5. Planning for EIS
6. HRSA Title III EIS
7. Models for Linking Prevention and Care
8. References

Chapter 4 

Early Intervention Services 

Introduction TOP

The CARE Act Amendments of 2000 place great emphasis on linking individuals with care immediately upon diagnosis and using support services to keep them in care over time. To support this goal, early intervention services (EIS) (i.e., HIV counseling, testing, and referral activities) are a fundable service under Titles I and II. Their goal is to expand efforts to identify people living with HIV disease (PLWH) who know their HIV status but are not receiving HIV-related services in order to bring them into care.

A related task for grantees is to enhance linkages with key points of entry into care. This refers to agencies that can deliver EIS and also help break down barriers to care by providing other services needed by clients, such as substance abuse treatment.

The anticipated long-term impact of EIS and key points of entry is to normalize screening for HIV in diverse social service and health care settings and to help reduce barriers to care for the traditionally underserved by expanding the network of referrals. Since many EIS-related services may already exist in the community, new EIS can be funded by Titles I and II as long as the grantee can demonstrate that other sources of funds are insufficient to meet current needs.

Legislative Background TOP

Section 2612(c) of the CARE Act states that Title II funds may be used to provide:

“(1) …individuals with HIV disease early intervention services described in section 2651(b)(2), with follow-up referral provided for the purpose of facilitating the access of individuals receiving the services to HIV-related health services. The entities through which such services may be provided under the grant include public health departments, emergency rooms, substance abuse and mental health treatment programs, detoxification centers, detention facilities, clinics regarding sexually transmitted diseases, homeless shelters, HIV disease counseling and testing sites, health care points of entry specified by States or eligible areas, federally qualified health centers, and entities described in section 2652(a) that constitute a point of access to services by maintaining referral relationships.”

“(2) CONDITIONS.—With respect to an entity that proposes to provide early intervention services under paragraph (1), such paragraph applies only if the entity demonstrates to the satisfaction of the State involved that—

(A) Federal, State, or local funds are otherwise inadequate for the early intervention services the entity proposes to provide; and

(B) the entity will expend funds pursuant to such paragraph to supplement and not supplant other funds available to the entity for the provision of early intervention services for the fiscal year involved.”

Section 2617(b)(6) states that the annual Title II application submitted by the State will contain information required by the Secretary, including an assurance by the State that:

“(G) entities within areas in which activities under the grant are carried out will maintain appropriate relationships with entities in the area served that constitute key points of access to the health care system for individuals with HIV disease (including emergency rooms, substance abuse treatment programs, detoxification centers, adult and juvenile detention facilities, sexually transmitted disease clinics, HIV counseling and testing sites, mental health programs, and homeless shelters), and other entities under section 2612(c) and 2652(a), for the purposes of facilitating early intervention for individuals newly diagnosed with HIV disease and individuals knowledgeable of their HIV status but not in care.”

HAB/DSS Expectations  TOP

Formal referral relationships are mandated by the 2000 Amendments, and EIS is permitted as an optional new Title II service category. EIS and maintaining appropriate referral relationships are closely interrelated because both expand the mechanisms available to eligible metropolitan areas (EMAs) for bringing HIV-positive individuals into care. HAB/DSS expects Title II programs to use these tools to reduce barriers and increase access to care, especially for people from traditionally underserved populations.

HAB/DSS expects Title II programs to address the need for early intervention services in their needs assessments and, where appropriate, in their service delivery plans. It also expects States to implement legislative requirements regarding referral relationships and points of entry.

Components of EIS  TOP

Title II-funded EIS includes the following components:

1. Testing. The first stage of EIS is testing to determine HIV status. The intent is to encourage testing that enables individuals to learn about their status early in the progression of the disease.

2. Counseling. Newly diagnosed individuals need counseling on living with HIV disease. Counseling should help them understand and modify behaviors that may compromise their health. In addition, it should encourage secondary prevention through such actions as self-disclosure to sex partners or needle-sharing partners.

3. Information and Education. Newly diagnosed individuals need practical information on living with HIV disease, including the availability and use of treatment therapies.

4. Referral to Services. EIS should provide referrals to appropriate prevention and risk reduction programs to individuals who are HIV-negative. It should provide referrals to primary care and case management to those who test positive. Of particular importance is referral for appropriate medical evaluation and clinical care, such as CD4 cell monitoring; viral load testing; antiretroviral therapy; and prophylaxis and treatment of opportunistic infections, malignancies, and other related conditions. Individuals who are HIV-positive should also be referred, as needed, for such services as oral health care, mental health care, substance abuse treatment, nutritional services, specialty medical care, and other health services—either directly or through a formal referral mechanism.

5. Feedback Mechanism. A feedback mechanism between the agency providing counseling and testing and the agency providing the medical care and support services should be established and used to follow up on referrals and ensure that individuals were able to obtain needed services. (These services are often provided by the same agency and in such cases require only a telephone call to another division within the agency.)

Conditions for Funding EIS  TOP

EIS is a fundable Title II service category when the proposed services do not supplant existing EIS funding and when existing sources of funds in a specific area of the State are inadequate to reach targeted underserved communities. Since several State and Federal programs currently fund an array of EIS programs, the CARE Act is very specific about how and when counseling, testing, and referral activities should be supported under Title II. If the State decides to contract for EIS, these services should be:

• Included in annual State planning activities
• Consistent with Centers for Disease Control and Prevention (CDC) guidelines for HIV counseling, testing, and referral (for the most updated copy of these guidelines, see CDC's counseling/testing resources web site)
• Consistent with the requirement that post-test counseling emphasize the responsibility of individuals with HIV to inform their sex and/or injection drug equipment sharing partner(s) about their status in order to reduce transmission, and
• Inclusive of established referral relationships to be maintained by EIS providers, including a mechanism for receiving feedback from health and social support service providers to which clients are referred.

Planning for EIS  TOP

Before deciding whether to prioritize and fund EIS as a service category, Title II States are expected to assess the need for EIS as part of their regular needs assessment and priority-setting process. As part of planning for this service category, all States must:

1. Identify those local points of entry for persons who know their HIV status and are not in care.
2. Include this information as part of the State’s comprehensive plan and use the information to guide determination of the optimal location and composition of EIS.

3. Carry out a resource inventory to collect information on current EIS providers in the State, including those funded by other Federal programs, including other CARE Act titles, and State and local governments.

4. Use this resource inventory and the points of entry referral information to assist planning bodies in identifying gaps in EIS and other services for those not in care and determining how to best fill those gaps. This may include funding an EIS service category.

5. If it is decided that EIS funding is necessary to increase access to care, integrate it into the service delivery implementation plan and the priority-setting and resource-allocation process.

Steps 1 and 2 above are required of all States regardless of whether EIS is funded. Once steps 1-5 have been followed, contacting for and monitoring providers of EIS services is the same as with other HIV service categories.

Life of Early Intervention Services
Under Titles I and II

Points of Entry and Eligible EIS Providers

In planning for the location and composition of Title II EIS, planning bodies and grantees should seek to expand the range of settings in which HIV-positive individuals are identified and brought into care. HAB/DSS also expects each State to ensure that formal relationships are established between funded providers and entities that serve as points of entry into the continuum of care. These agreements should ensure that Title II providers continuously seek out individuals who know their status but are not in care.

These points of entry locations include, but are not limited to, the following types of organizations:

• Emergency rooms
• Substance abuse treatment programs
• Detoxification programs
• Adult and juvenile detention facilities
• Sexually transmitted disease (STD) clinics
• Federally qualified health centers
• HIV disease counseling and testing sites
• Mental health programs, and
• Homeless shelters.

The points of entry locations should be among the types of entities considered for Title II EIS funding, as should other entities, such as:

• Public health departments
• Current Title I, II, and III providers
• Hemophilia diagnostic and treatment centers
• Migrant health centers
• Community health and family planning centers, and
• Nonprofit private entities that provide comprehensive primary care services to populations at risk of HIV disease.

Referral Relationships

In addition to using points of entry as potential EIS providers, the 2000 Amendments require States to establish and maintain relationships between those points of entry identified above and Title II-funded providers.

Role of the Grantee and Planning Bodies

Grantees and planning bodies should identify key points of entry based upon their knowledge of the State’s care system and those populations not in care. Referral relationships and linkages should then be developed with the key points of entry listed in the legislation. Relationships can be documented through contract language with Title II-funded providers, requiring them to establish ongoing relationships with local points of entry. In turn, relationships between Title II-funded providers and points of entry can be documented through memoranda of understanding, letters of support, or other written instruments that contain the following:

• Names of the entities involved
• Purpose of the agreement
• Timeframe of the agreement
• A clearly defined referral process indicating responsibilities of both parties, and
• A description of tracking or follow-up mechanisms to ensure that referrals are made and that individuals referred receive services.

As a Condition of Award, EMAs are required to tell DSS what method was used to establish and document ongoing relationships between Title I-funded providers and points of entry.

Role of the CEO

The Title II grant application asks the State how it defines and maintains referral relationships. The State chief elected official (CEO) must address this issue through two assurances contained in each annual grant application. They specify that:

1. Current planning information has been reviewed to determine whether established referral mechanisms are appropriate for bringing HIV-positive clients who are not in care into care.

2. The State is requiring funded providers to maintain appropriate relationships with agencies serving as points of entry into the continuum of care.

Models for Designing Early Intervention Services  TOP

EIS efforts have long been established by many State health departments and Federal agencies, including the CDC and the Substance Abuse and Mental Health Services Administration (SAMHSA). In addition, since the initial authorization of the CARE Act in 1990, Title III has funded community-based providers to develop and expand early intervention services. The experiences of these programs should be considered in designing and enhancing Title II EIS and should be included as part a comprehensive inventory of local resources that an EMA undertakes in planning for EIS.

• CDC. Publicly funded HIV counseling and testing services have been provided under grants from CDC through 65 local and State health departments since 1985. Both anonymous and confidential voluntary HIV counseling, testing, and referral services are available and have evolved to focus on individual, client-centered risk reduction counseling models. Recently revised CDC Guidelines for HIV Counseling Testing and Referral include many recommendations to ensure that HIV-infected individuals (as well as those at risk) have access to appropriate medical, prevention, and psychosocial support services. For more information on CDC and the counseling and testing guidelines, go to the CDC website.
• The Substance Abuse and Mental Health Services Administration (SAMHSA) oversees State block grants to support HIV early intervention services in substance abuse or mental health treatment settings. In addition, SAMHSA provides HIV/AIDS grants to develop effective outreach in urban areas highly impacted by substance abuse and HIV infection. For additional information on substance abuse treatment and block grants, see the SAMHSA website.
• Housing Opportunities for People with AIDS (HOPWA) funding for case management often allows local housing programs to incorporate some aspects of referral and information on living with HIV into outreach at homeless shelters and housing projects. See the HUD/HOPWA web site.
• The Federal Bureau of Prisons (BOP) and State and local correctional systems have responsibility for counseling and testing for most incarcerated populations and follow a wide range of HIV testing policies. Locally administered prisons and jails provide an important, but challenging, point of entry and opportunities for EIS. Counseling and testing policies vary greatly, as do the counseling elements and levels of confidentiality. CDC’s IDU/HIV Prevention Project showcases innovative programs for drug users who are involved with the criminal justice system, such as early intervention teams for in-jail services that offer multi-session individual counseling and referrals to services for HIV-positive inmates. Other health departments contract with community-based agencies to routinely provide confidential and anonymous HIV counseling and testing and linkages with community services and discharge planning. Information on how some of these programs operate can be found on the Department of Justice website: http://usdoj.gov and the CDC website.

HRSA Title III EIS  TOP

The HIV/AIDS Bureau’s Primary Care Services Branch provides funding for comprehensive HIV primary care and early intervention services to uninsured and under-insured persons living with HIV disease in medically underserved areas. The branch also supports capacity development for planning EIS programs for similar populations in underserved rural areas and communities of color. Many EMAs have one or more Title III providers in their communities. They may have many years of experience locating and working with clients who are know their status and are not in care or are newly diagnosed. For more information, see the Title III Manual.

Lessons Learned from Title III

Title III EIS guidance stresses that counseling, testing, and referral services should be made available at a health care facility or at another readily accessible site. The counseling services offered should ensure that patient information will be protected, in compliance with applicable State and local laws. Testing activities at Title III sites provide for informed consent and include pretest counseling so that any testing decision is voluntarily made. Provisions should be made for anonymous testing under conditions appropriate to the needs of the clients, and counseling and testing should be culturally sensitive and gender- and age-appropriate. Title III guidance also requires that funded programs track client referrals to other services and to primary care if it is not co-located with the EIS clinic.

Title III counseling and testing programs include specified procedures for pretest counseling for all individuals tested, and post-test counseling for individuals, whether they tested negative or positive. Key aspects of Title III counseling and testing are described below.

1. Pretest counseling. EIS providers ensure that prior to being tested, clients receive appropriate information and counseling regarding the most up-to-date scientific data related to the disease. Pretest counseling should also address the following:

• Measures for the prevention of exposure to and transmission of HIV
• The accuracy and reliability of HIV test results
• The significance of the test results, including the potential for developing AIDS
• Appropriate reasons why individuals should undergo HIV testing
• The benefits of HIV testing, including the medical benefits of diagnosing HIV disease in the early stages and the medical benefits of receiving early intervention services during such stages
• Laws relating to the confidentiality of the process of receiving EIS, including information about any disclosures that may be authorized under applicable law, and information regarding the availability of anonymous testing. and
• Legal provisions relating to discrimination against individuals with HIV disease.

2. Testing to determine HIV status. EIS providers offer individuals with tests that:

• Confirm the presence of HIV
• Diagnose the extent of the deficiency in the immune system, and
• Provide information on appropriate therapeutic measures for preventing and treating the deterioration of the immune system and for preventing and treating conditions arising from the disease.

3. Counseling for individuals with negative test results. Post-test counseling of clients with negative test results includes information on the following:

• Risk reduction
• The accuracy and reliability of test results
• The significance of the test results, and
• The appropriateness of further HIV counseling, testing, and education for the individual, including referral to HIV prevention services.

4. Counseling for individuals with positive test results. Post-test counseling for individuals with positive test results includes information on the following:

• Risk reduction
• Accuracy and reliability of test results
• The significance of the test results, and
• The appropriateness of further HIV counseling, testing, and education for the individuals, including referral to HIV prevention services.

Individuals with positive test results should also receive appropriate counseling regarding:

• The availability of early intervention services.
• The availability, in the geographic area, of appropriate health care, mental health care, and social and support services, including providing referrals these services as appropriate.
• The benefits of locating and counseling any individual by whom the HIV-positive client may have been exposed to HIV and any individual whom the infected individual may have exposed to HIV. This counseling should also include the following information (1) the duty of infected individuals to disclose their infected status to their sexual partners and their partners in the sharing of hypodermic needles; (2) advice to infected individuals on the manner in which such disclosures can be made; and (3) emphasis on the continuing duty of the individual to avoid any behaviors that will expose others to HIV.
• The availability of public health authority services for locating and counseling any individual by whom the HIV-positive client may have been exposed to HIV and any individual whom the infected individual may have exposed to HIV.

Title III guidance also requires that funded programs track client referrals to other services and to primary care if it is not co-located with the EIS clinic.

Various EIS Funders and Services for HIV-Positive Clients 

The chart below indicates the principal Federal agencies that fund some form of HIV counseling, testing, and early intervention programs and the core elements in those programs.
 

Models for Linking Prevention and Care  TOP

HRSA has supported several demonstration projects that provide lessons linking prevention and care through EIS models, as described below.

In 1991, HRSA collaborated with CDC on the Seven Cities HIV Early Intervention Demonstration Projects. All the projects highlighted three primary organizational challenges faced by local health departments in developing networks for early intervention:

• Maintaining effective network oversight
• Forging interagency linkages, and
• Gaining agency support so that they share early intervention goals.

The report also concludes that designers of programs that link early intervention and primary care should address:

• Issues of trust between patients and providers and between network providers
• Tracking of HIV-infected individuals between counseling sites and primary care providers, and
• Issues surrounding creation of linkages to drug treatment programs, mental health services, and specialty care.

In 2001, HRSA’s Special Projects of National Significance (SPNS) collaborated with HOPWA on an initiative to develop integrated service delivery systems that enable most marginal and isolated populations infected by HIV to access services to meet their needs. Eight of the 25 projects providing networking services are described in the monograph Lessons Learned: Innovations in the Delivery of HIV/AIDS Services. Included are projects from various parts of the country that target the homeless, rural populations, poor women of color, youth, and the recently incarcerated. Copies of this publication may be downloaded from the HAB website or ordered through the HRSA Information Center at 1-888-ASK-HRSA.

Tracking to verify completion of referrals is a challenge for many programs that link counseling and testing services with primary care. The New York State AIDS Institute has developed a system that tracks whether referrals are completed through reports from primary care and substance abuse treatment providers. Analysis of data from the reports indicates that 80 to 90 percent of individuals from anonymous counseling and testing sites who receive an HIV post-test positive counseling visit and are referred for follow-up care keep their appointments.

Referral tracking can also be integrated into quality management, as demonstrated by Connecticut’s Early Referral and Linkage Initiative (ERLI). It begins by creating strong links between prevention and care systems through cross-training of HIV case managers and prevention counselors. It then uses quality assurance methods, including random chart reviews regarding compliance with ERLI the protocol for assessment and needed referrals.

For more information on these and other State efforts to link prevention and care, see the National Alliance of State and Territorial AIDS Directors (NASTAD) report.

References  TOP

Health Resources and Services Administration (HRSA), HIV/AIDS Bureau (HAB). Title III Manual, 1999, Rockville, MD.

HRSA, HIV/AIDS Bureau, Lessons Learned: Innovations in the Delivery of HIV/AIDS Services, March 2001.

HRSA, HIV/AIDS Bureau, Reauthorization Letter #7, Early Intervention Services; Maintaining Appropriate Referral Relationships, 2001.

HRSA, Division of HIV/AIDS Services, “Early Intervention Services: HRSA/HAB Materials.” Prepared for the Regional Reauthorization Meetings, 2001.

Additional Resources

Centers for Disease Control and Prevention, “Revised Guidelines for HIV Counseling, Testing, and Referral,” November 9, 2001. Available on the CDC website.

"Understanding the Impact of New Treatments on HIV Testing." Review of HIV counseling/testing given changes in treatment, prevention, and testing technology-all of which have placed increased importance on HIV counseling/testing as a prevention and care tool.

Centers for Disease Control and Prevention, “HIV/AIDS Counseling and Testing in the Criminal Justice System” Fact Sheet August 2001. Available on the CDC website.

Forum for Collaborative HIV Research, “Linking HIV Testing, Prevention, and Care,” Background Paper. Washington, DC: George Washington University Center for Health Services Research and Policy, September 20, 2001.

Holloway, Joan, O’Neill, Joseph, Powell, Angela, Gomez, Miguel, Early Intervention Demonstration Projects in the U.S.: Linking HIV Care and Prevention at the Local Level.

National Alliance of State and Territorial AIDS Directors, Targeted Testing and Referral Efforts for Minority Communities: A Report from the NASTAD Status Project. Washington, DC, April 2001.

U.S. Department of Justice, “HIV in Prisons and Jails, 1999.” Washington, DC: U. S. Department of Justice, National Institute of Justice/BJS, July 2001. Publication NCJ 187456. Can be accessed through the Department of Justice website.