Legislation and Policy

The CARE Act gives broad legislative authority for funding a wide range of palliative care services (e.g., medical care, social supports, peers and buddies, pastoral care) within most grant programs (Titles I–IV and Part F). Since its initial authorization, the CARE Act has continued to support the funding of a comprehensive set of medical and social services for persons who lack adequate access to medical treatment. Congress has not altered the purpose of the act since its initial authorization in 1990.

Congress has chosen not to be highly prescriptive in determining the types and intensity of medical and social services supported through the various titles of the CARE Act. Table 1 lists providers and services each title generally covers. HRSA’s administrative policies have supported flexibility in providing medical and social services based on community needs.

Part A (Title I) funds services in four areas: outpatient and ambulatory health services; outpatient and ambulatory support services; inpatient case management; and outreach services, including early intervention. The first two areas are relevant to funding palliative care providers; they are not meant to limit services to curative approaches alone. In fact, they direct grantees to support previously established (pre–CARE Act) home- and community-based programs that developed during the early phases of the epidemic in the mid-to-late 1980s. Hospice care and other palliative services (including home health care, home nursing services, pastoral counseling, legal advice and advocacy, and buddy services) were commonly a part of these programs.

Part B (Title II) provisions are relatively similar to those of Title I regarding funding for support services. Title II allows funds to be used for specific home- and community-based programs and services relevant to palliative care (including the services of homemakers and home health aides, day treatment and partial hospitalization services, home health care for the administration of medications, rehabilitative services, and others), health insurance, and therapeutics.

It is important to note that with regard to Titles I and II, Congress intended that the legislation be broad enough to allow for the funding of various types of services and providers in different settings based on the unique needs of the community and the local health care structure. Congress has, however, disallowed the use of CARE Act funds for several areas: inpatient medical care services, skilled nursing and long-term care facilities, and services that could reasonably be expected to be funded by other public or private benefits programs.

Part C (Title III) allows for the funding of a wide range of HIV care, treatment, and support services, including palliative care at Title III sites. Most palliative care services are covered by Title III funding. However, spiritual support services, such as pastoral care, cannot be covered by Title III funds unless they are delivered under the provision of mental health counseling. Home health care services and hospice care are not covered. Moreover, hospice care organizations are not eligible to receive direct Title III funds. Title III sites are uniquely situated to identify people in the early stages of HIV disease and to provide a comprehensive set of services that span patients’ lifetimes. They are well positioned to develop and implement progressive palliative care programs that span lifetime needs and include psychosocial, spiritual, and medical interventions and supports for patients and their families. Those sites are well established in local communities and have formed the connections with institutional and hospice service providers that are necessary for delivering inpatient clinical care (including pain management) and end-of-life care.

Title IV funds can support a broad array of services, such as outpatient health care (primary and specialty care), referral and treatment services related to mental health and substance abuse, case management, transportation, social support services (such as child care, transportation assistance, pastoral care, and services for affected family members), and other incidental services. Service provisions under Title IV include a wide array of potential providers and services that would be part of a team approach to palliative care.

Table 1. Allowable Use of CARE Act Funds to Support Palliative Care Providers and Services Across Titles of the CARE Act
Providera Title I Title II Title III Title IV
Physician (including nurse
practitioner, physician assistant)		 + + + +
Nurse + + + +
Mental health provider + + + +
Substance abuse treatment provider, addiction counselor + + + +
Case manager + + + +
Chaplain, pastoral care provider + + NO +
Pharmacist + + + +
Nutritionist + + + +
Rehabilitation therapist + + + +
Outreach worker + + + +
         
Service        
Outpatient palliative care program + + + +
Hospital-based outpatient clinic + + + +
Hospice facility + + NO +
Home-based hospice + + NO +
Nursing home, long-term care facility NO NO NO NO
Residential hospice care + + NO +
Rehabilitative service + + +b +
Respite care + + +b +
Inpatient palliative care consultation +c NO NO NO
Inpatient dedicated hospice unit +d +d NO +d
         

a Providers funded through CARE Act funds may be outpatient- or hospital-based facilities but may not be supported to provide inpatient services. Providers may be subject to State and Federal licensure and certification requirements.

b Not as a direct Federal grantee, but may serve as a subcontractor to a Federal grant recipient.

c Within the limitations of the legislation, up to 10 percent of the total award is allowable for inpatient personnel costs if the Planning Council has determined that there is a shortage of inpatient personnel that in turn has resulted in inappropriate utilization of inpatient services.

d Refers to a non-acute-care section of a hospital designated and staffed to provide hospice services.

 

Part F, which authorizes the AIDS Education and Training Centers (AETCs) among other activities, provides support to public and private entities and schools to train HIV care providers and faculty and to develop and disseminate curricula related to the care and treatment of PLWH/A. The statute does not specify or define “health personnel.” Most recent HAB policies have interpreted the provisions to include only health care providers (dentists, doctors, nurses, nurse practitioners, and physician assistants) for the purposes of training for the delivery of medical care (primarily curative interventions). The policies are currently under review to ensure that all practitioners engaged in the care of CARE Act clients may benefit from AETC efforts. However, HRSA has expanded the role of the AETCs to include development and dissemination of palliative care training materials and the active engagement of AETCs in palliative care training. The University of Washington received funding to develop a curriculum for training palliative care service providers. Additionally, “palliative care” is included on a list of activities supported by the AETC national consultation program.

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