Home and community services can be thought of as falling into five overarching categories. It is useful to consider these in generic terms before proceeding to a detailed discussion of how they are treated in Medicaid law and policy.
Personal Care--also called personal assistance and attendant care--involves helping individuals perform everyday activities when they have physical or mental impairments that prevent them from carrying out these activities independently. These activities can include Activities of Daily Living (ADLs) and Instrumental Activities of Daily Living (IADLs). ADLs include eating, bathing, dressing, toileting, transferring from bed to chair, and maintaining continence. IADLs include activities such as light housework, laundry, transportation, and medication management.
This assistance can be furnished in the home or community settings, as well as to individuals who live in foster care, group homes, and other residential care settings. The terms used for individuals who provide personal care vary, and include personal assistants, personal attendants, personal care aides, and direct care workers. Certified nursing assistants and home health aides also provide personal care.
Individuals with various types of disabilities often require this form of basic assistance throughout their lives. Thus, a need for personal care is a major, if not the primary, reason many individuals seek Medicaid long-term care services and supports. States use several different terms to describe assistance with ADLs and IADLs, which may be provided under the mandatory Home Health benefit, the optional State Plan Personal Care benefit, the optional Section (§)1915(i) HCBS State Plan benefit, and/or a §1915(c) waiver (hereafter called HCBS waiver). In October 2011, an additional State Plan option will be available--the §1915(k) Community First Choice Option benefit, which was authorized by the Patient Protection and Affordable Care Act of 2010 (hereafter called the Affordable Care Act). Personal care can also be provided under the optional §1915(j) Self-directed Personal Assistance Services State Plan benefit. However, only states that offer personal care under either the State Plan Personal Care option or an HCBS waiver may employ the §1915(j) authority. (See Chapter 7 for a detailed discussion of the §1915(j) authority.)
Health-Related Services. Personal care can include assistance with health and health-related tasks, which encompass a wide range of skilled and unskilled nursing services that address chronic conditions and functional impairments (e.g., tube feedings, catheterization, range of motion exercises, and medication administration). However, assistance with skilled tasks may be provided only when delegated by a licensed nurse in accordance with state law.
Specialty Services. This category comprises a wide range of services related to the specific nature of an individuals impairment. These services generally share the common aim of helping individuals to improve their functioning. Adult day health services address both functional and health needs. Psychiatric rehabilitation services address the needs of individuals who have a mental illness that impairs their functioning. Habilitation services enable people with intellectual disabilities and other developmental disabilities (ID/DD, hereafter called developmental disabilities) to acquire or improve skills to help them become more independent. Assistive technology helps people with many types of disabilities become more self-sufficient. States may offer these specialized services through various options, including an HCBS waiver program. Many types of assistive technology (e.g., motorized wheelchairs and communication devices) are forms of medical equipment and supplies covered under the mandatory Home Health benefit.
Adaptive Services.In order to remain in their own home and function in the community, many individuals with physical impairments need home and vehicle modifications. Home modifications include the installation of wheelchair ramps, widening doorways, and retrofitting bathrooms and kitchens so that individuals with physical impairments can get around their homes. Vehicle modifications include modifying a car or a van to enable a person to drive or be transported to work and/or community activities. These services can be covered under HCBS waiver programs.
Family and Caregiver Supports. These supports are designed to help family members and friends who support individuals with disabilities. Various Medicaid options are available to maintain and strengthen these supports. Respite care--for unpaid caregivers who are absent or need relief--is one of these services. State Plan personal care services--in addition to those provided on an ongoing basis--can be authorized to temporarily relieve an unpaid caregiver.
States may also provide caregiver training and education as a distinct service under an HCBS waiver program to strengthen an unpaid caregivers ability to meet the needs of the person they are assisting. Training and education can cover a wide range of topics, such as instructions for using equipment specified in the service plan and ensuring compliance with treatment regimens. It may include (a) paying trainers to come into the home to teach skills and techniques for addressing the program participants (hereafter, the participants) needs, so that training can be customized to the individual and the caregivers; (b) paying for caregivers to attend special training and education classes; and (c) paying the expenses associated with caregivers attending workshops and conferences where they learn how to better meet participants needs. (These expenses might include conference fees, arranging substitute care while caregivers are away, or paying for personal assistance at the training conference itself if the participant accompanies the caregiver.)
Caregiver training may also be paid for under the optional Rehabilitation benefit. Rehabilitation services in Kentucky, for example, include home visits to (a) help family members and seriously mentally ill beneficiaries practice effective communication techniques to defuse stressful situations that occur in home settings, and (b) coach family members to improve their skills for managing a severely emotionally disturbed child. Training and supports may also be offered as component parts of other benefits, such as Home Health.
Social Supports.Social supports are intended to help individuals take an active part in both their family and community and can help avoid social isolation. Social supports such as companion services, for example, provide assistance so that individuals can participate in community activities (e.g., by providing a personal attendant to enable the individual to attend church). These services can be covered under HCBS waiver and State Plan HCBS programs.
Case Management/Service Coordination helps individuals who need services and supports funded by several sources. Some may be available through the Medicaid State Plan and others through other public programs such as state programs for person with disabilities and programs funded under the Older Americans Act. A common feature of home and community services is the provision of case managers, who may also be called care coordinators, service coordinators, or support coordinators. They frequently prepare--or facilitate preparation of--an individual service plan that describes how all the services and supports a person might need will be identified and delivered. They also play an active role in monitoring the quality and effectiveness of home and community services. Several Medicaid options are available for covering case management/service coordination, which are discussed later in this chapter.
As states consider which home and community benefits to offer, and how to offer them, it is helpful to keep in mind that no bright line distinguishes home and community services and supports from other types of Medicaid benefits. Many benefits not mentioned in this overview are very much a part of the mix required to meet the needs of individuals with disabilities and chronic conditions. For example, State Plan coverage of medical equipment and supplies can provide power wheelchairs and other mobility aids. The State Plan may also cover therapeutic services such as occupational and physical therapy, which many individuals need to improve or prevent a decline in their functioning. As a consequence, in crafting effective home and community service strategies, it is important to take stock of other services in the Medicaid State Plan and to modify or possibly supplement them if needed. This will help to ensure that the coverages chosen address the key needs of those being served.
Respite benefits encompass whatever services an individual needs (e.g., personal care and nursing services). They are usually furnished on an intermittent basis explicitly to provide relief to primary unpaid caregivers. Respite, for example, can be provided to give parents a night or weekend off periodically from the intense caregiving needed to support children with severe cognitive and/or physical disabilities or medical needs. It is particularly needed if caregivers themselves become ill.
Respite is also important for spouses or adult caregivers of older adults, particularly those with dementia who need around-the-clock supervision. Respite care benefits the individual directly by providing services usually furnished by caregivers, and indirectly by helping avoid caregiver burnout, which can lead to institutionalization. Under HCBS waiver programs, respite can be provided in the family home by bringing a worker into the home while the caregivers are away for a few hours or overnight.
Some states also allow respite care provided through HCBS waiver programs to be furnished at sites other than the family home, including especially designated respite care facilities. This out-of-home respite is used most often when the primary caregiver(s) will be away overnight or for extended periods, or to enable the primary caregiver(s) to be at home alone during the respite period.
States may establish whatever limits they elect with respect to the amount of respite that will be available to primary unpaid caregivers. It is not uncommon for states to cap the amount of respite at 30 days during a calendar year. Some states do not impose such caps in their HCBS waiver programs, leaving the amount of respite that will be authorized to be worked out during the individual service planning process based on the needs and circumstances of the particular informal caregivers.
Most states permit caregivers to bank respite benefits and to use the authorized amount whenever it is most needed. This practice recognizes that since respite is intended to renew the energies of the caregiver (for the direct longer term benefit of the participant), caregivers should determine when it is used. States have the option to permit banked respite to be carried over from one year to the next.
As states determine what services and supports to offer, they need to consider certain Federal policy issues and state goals and objectives that constrain, or at least shape, their benefit choices. The next section addresses the Federal dimension and is followed by a general discussion of state policy goals and objectives.