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Vol. 11, No. 1: Winter 2003
(Distributed as Vol. 10, No. 4)

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Medicaid Home and Community Based Waiver Programs:

Supporting Individuals with Disabilities in the Most Integrated Setting Possible

Eliza Patten, Disabilities Law Program

The major source of public funding for long-term services and supports for persons with disabilities nationwide is Medicaid. The percentage of Medicaid spending on services and supports provided in the home or a community setting has grown exponentially. These services may be offered either through a state’s “regular” Medicaid program or through a home and community-based services (HCBS) waiver program. This article will outline the use of Medicaid HCBS waivers by states to supplement and expand the services available to persons with disabilities in their homes and communities.

In 1981, Congress authorized the waiver of certain federal requirements to enable states to provide home and community services (other than room and board) to individuals who would otherwise require institutional care reimbursable by Medicaid. The waivers are authorized by section 1915(c) of the Social Security Act and are sometimes referred to as 1915(c) waivers. For purposes of this article they will be referred to as HCBS waivers. Services extend beyond those covered by the state Medicaid plan. In addition, waiver programs may allow states to provide services not viewed as strictly medical (e.g., homemaker or chore services, respite care, wheelchair lifts, and home modifications) provided the services are related to the need for long-term supports and services in the community.

A state may offer several HCBS waiver programs at once, each offering a distinct package of supports and services to a different group of individuals. Waivers provide an invaluable opportunity for states to customize benefit packages to meet the needs of their constituencies with disabilities. A state can qualify a wider range of individuals for Medicaid using an HCBS waiver program than it can under its state plan. Equally important is the ability waivers give states to empower individuals with disabilities to pursue the common goal of enhancing personal choice and freedom of control over daily activities in the most integrated setting possible, as specified in the Olmstead decision.

When Medicaid was first enacted, its main purpose was to cover primary and acute health care services. Since 1970, Medicaid has evolved into a program that allows states considerable flexibility to cover virtually all long term care services that enable persons with disabilities to live independently in home and community settings. The services that can be offered without a waiver are called Medicaid state plan services. Some of these (e.g., home health care) are mandatory services. Other services can be provided at state option. When a state covers a service under its Medicaid plan, it must specify any limitations as to (1) amount (how often a person may receive a service); (2) duration (for how long); and (3) scope (the exact nature of what is provided). Services must be sufficient to meet the needs of most people most of the time and may not undermine a person’s receipt of necessary assistance.

Optional state plan services, once a state elects to offer them, must also be made available to all individuals who require the service, within the limitations the state may have established. Generally, the optional services offered under the state plan must be available statewide (the “statewideness” requirement) and they must be available on a comparable basis to all Medicaid recipients who require the service (that is, the state may not offer them only to persons who have a particular condition or offer them in different forms to different groups.) This latter condition is referred to as the “comparability” requirement. A state has the option of covering four main home and community based services, including (1) personal care; (2) targeted case management; (3) clinic; and (4) rehabilitative services. Targeted case management services are exempt from the comparability and statewideness requirements; however, once a state has established its target population, the services must be furnished to all eligible individuals. In contrast to waiver programs, a state may not limit the number of individuals eligible to receive these services.

Waiver programs are exceptional in that they are exempt from the statewideness and comparability requirements. This enables states to target services to distinct groups of Medicaid beneficiaries. Therefore, supporting home and community services through waivers can be considerably less expensive for states than electing to adopt an “optional” service in the state plan. In addition, there are some HCB services a state may not offer under its Medicaid state plan—but could offer through a waiver—either because they have not been specified in the authorizing legislation and regulations (e.g., respite care) or because they may be provided under the state plan only as a component of institutional services (e.g., habilitation).

To be eligible for services, individuals must first meet a waiver’s targeting criteria, such as age and diagnosis or condition. A state may have a number of different waivers targeting different groups. Individuals who meet target criteria must then meet service criteria; that is, they must meet Medicaid’s “level of care” criteria for determining eligibility for institutional care. This decision is made through a formal assessment process at the time of application for service. Because these criteria are essential to preserving the primary purpose of the waivers–to offer an alternative to institutionalization–the criteria may not be waived or amended except by Congressional action.

It is worth noting that stringent level of care criteria limit the assistance that states can provide to those who need only a small amount of help to remain in the community, and thereby may unintentionally increase the costs of institutionalization. The incentive for setting stringent criteria is a fear that more flexible or functional criteria will “open the floodgates” to persons demanding institutional care. In reality, the overwhelming majority of persons with long-term care needs would prefer to be served in the community and will not seek an institutional placement. The availability of HCB services in fact reduces the demand for institutional services.

Service criteria, on the other hand, should be developed only after a thorough assessment of the full constellation of services and supports a state provides, either through its Medicaid plan or through other state and local resources. The aim of the criteria should be to ensure that all individuals with long-term care service needs are able to obtain the particular service appropriate to their need. Federal policy prohibits waivers from covering precisely the same services as are already covered under the state plan; however, if a state offers a service under its Medicaid plan with restrictions, the waiver may offer what are termed “extended” state plan services to provide more complete coverage.

To assist states in submitting requests to begin waiver programs, the Centers for Medicaid and Medicare Services (CMS) published a standard HCBS waiver application format, including CMS-suggested definitions of a wide range of services states may use to specify what their waiver program will cover. These include: case management/care coordination services; personal care and assistance services; services usually furnished in settings other than a person’s home; specialized, disability-related services; services for individuals with serious persistent mental illness; health-related services; assistive devices, adaptive aids, and equipment, including home and vehicle modifications; and family training and respite care. Each of these categories will be discussed briefly below; included are some services that are not listed in the CMS definitions but that have been approved for inclusion in waiver programs.

1. Case management/care coordination services.

Case management/care coordination services are designed to help individuals who need services and supports from several sources. They may include assessment, service/support planning, arranging for services, coordinating service providers, monitoring and overseeing provision of HCBS waiver and other services furnished to an individual, and helping individuals gain access to non-Medicaid services.

2. Personal care and assistance services.

Personal care and assistance services can include help with Activities of Daily Living (ADLs) such as eating, bathing, dressing, toileting, and Instrumental Activities of Daily Living (IADLs) such as light housework, laundry, transportation, and money management. This provision can support a paid worker—such as a personal care attendant (with attention to health care needs), home health aide, homemaker, or chore services (for heavy household work)—and may be provided in the home, community or a community living situation. Homemaker services, in particular, may not be covered under a state’s Medicaid plan on a stand-alone basis; rather, they are covered only as an adjunct to personal care services. In addition, cost concerns often lead states to restrict the amount of home health aide services provided through the mandatory home health benefit. In both these cases, waivers present the potential to provide a greater amount of services.

3. Services necessary to support a person living in arrangements other than their home.

Services necessary to support people in living arrangements other than their home, excepting room and board, are typically covered by waiver programs. Residential habilitation services–geared to helping individuals acquire, retain, and improve ADL-related skills necessary for community life–combine habilitation, personal care and supervision into a single service. They are commonly used in waiver programs for persons with mental retardation and may include transportation services as needed. In contrast to habilitation services under the state Medicaid plan, which may only be furnished to residents of Intermediate Care Facilities for the Mentally Retarded (ICFs/MR), waiver-supported habilitation services can be provided to people living on their own.

Adult foster care is another service necessary to support people living outside their home. Adult foster care combines personal care and services, homemaker, chore, attendant care, companion services and medication oversight provided in a private home by a principal care provider who lives in the home. Licensing requirements may apply to non-relative caregivers. Similarly, assisted care services encompass the same categories of services and supports but are provided in a community care facility to those living in the facility.

4. Specialty services.

The fourth general category are specialty services, which are disability-specific services generally provided away from the individual’s living arrangement. This is potentially a very broad category. Day habilitation is a term used to refer to assistance with acquisition, retention and improvement in self-help, socialization, and adaptive skills to enable individuals to attain or maintain their maximum functional level. This is a very common waiver program service for individuals with mental retardation. Transportation may be included in the scope of day habilitation services. Extended habilitation services go further and include pre-vocational services (aimed at preparing an individual for paid or unpaid employment), educational services (special education and related services beyond those available under the Individuals with Disabilities Education Act or Section 504 of the Rehabilitation Act), and supported employment services (when needed to sustain paid work including supervision and training). Extended habilitation services may not be provided under the state Medicaid plan except to individuals residing in ICFs/MR.

There are three specialized services that a state may cover under its state Medicaid plan for individuals with serious, persistent mental illness: (1) clinic services; (2) day treatment or other partial hospitalization services; and (3) psychiatric rehabilitation services. These services also may be covered by HCBS waiver programs serving other target populations, including individuals with dual diagnoses. The advantage of covering these services under an HCBS waiver program is that they may be furnished in locations other than clinic sites.

5. Health-related services.

The category of health-related services includes skilled nursing, private duty nursing, and extended state plan services. Examples include assistance with such activities as tube feeding, catheterization, or range of motion exercises. Extended state plan services are exactly that: the same health and other services available through the state plan but without the limitations on amount, duration and scope specified in the plan. The waiver program will pick up once the state plan limitations have been reached.

6. Assistive devices, adaptive aids, and equipment; home and vehicle modifications.

This category includes a wide range of environmental accessibility adaptations—all physical adaptations to the home that either (a) are necessary to ensure the health, welfare, and safety of all individuals, or (b) enable them to function more independently in the home and without which they would require institutionalization. These types of adaptations can almost never be covered under the state Medicaid plan, making them a key consideration for waiver inclusion. Pennsylvania, for example, has an HCBS waiver which includes as household adaptations the following: ramps; handrails; grab bars; smoke/fire alarms for persons with sensory impairments; outdoors railings; widened doorways, landings, and hallways; kitchen, bathroom and bedroom modifications; workroom modifications; and stair glide and elevating systems. Waivers are also available for vehicular modifications, and Pennsylvania’s waiver program includes vehicular lifts, interior alterations, and other customized devices necessary for the individual to be transported safely in the environment.

Other assistive devices or adaptive aids and equipment may include specialized medical equipment and supplies that increase an individual’s ability to perform ADLs, or to perceive, control, or communicate with their environment. Examples may include medication administration boxes with timed alarms, electronic communication devices, computers or computer adaptations, and other assistive technology services which enable individuals with severe disabilities to use technology to perform activities on their own. These types of services reduce the need for workers to provide the service and increase the individual’s independence and self-sufficiency. This also includes life support equipment and Personal Emergency Response Systems (PERS) that enable individuals at high risk of institutionalization who live alone or are alone for long period of time—and would otherwise need extensive routine supervision—to secure help in an emergency. Finally, transportation is a service enabling waiver participants to gain access to waiver and other community services.

7. Family Training and Support.

Family training and respite care are services provided to family members or other caregivers to help relieve them of caregiving responsibilities. Family training may include instruction about treatment regimens and use of equipment specified in an individual’s plan of care. Respite care, by contrast, is short term care provided in the absence of or as relief for those persons normally providing the care. Respite care is not available under the state’s Medicaid plan.

8. Other approved long-term services and supports approved for waiver programs.

CMS requires a precise definition of what will be furnished to waiver participants; therefore, it is best to begin by developing a clear understanding of what the state intends its waiver program to accomplish, including the types of services and supports to be delivered (how, where, and by whom). Then the state should look at the CMS-proposed service definitions and make a determination whether the predefined service fits. If it does, it is always easier to use the CMS-predefined coverage. If it doesn’t, however, it is important to remember that the CMS list is only intended as guidance and should not be construed as limiting.

"Off-list” services that have been approved for HCBS waivers include crisis intervention services that stabilize persons in their current living arrangement. In California, for example, a mobile crisis intervention model is used to provide immediate, time-limited, therapeutic intervention on a 24-hour emergency basis to an individual exhibiting acute personal, social, and/or behavioral problems that, if not addressed, would threaten the health or safety of the individual and result in the individual being removed from the current living arrangement.

Other examples of CMS-approved waiver services include: behavioral services; community participation supports to encourage community integration and discourage reliance on site-based services; housing coordination for persons who are homeless or at risk of becoming homeless; supported living services that bring needed supports to individuals in their own homes; and consumer training and education aimed explicitly at teaching individuals skills they need to manage their own supports and advocate on their own behalf.

It is up to individuals with disabilities and their advocates to encourage states to create multiple, innovative HCBS waivers to enhance existing resources and ensure an integrated service delivery system. Waivers are “works in progress.” History has revealed that the states operating numerous waivers are constantly re-shaping and re-defining their programs as they learn more about how best to serve their communities. It is clear that HCBS waiver programs are an invaluable tool for increasing the depth and breadth of service options to support individuals with disabilities in the most community-centered, integrated environments possible. People with disabilities are deserving of nothing less.

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