Overview: This chapter examines the various types of long- term care services in the context of home- and community-based care. The relationship between long-term care and various populations that require long-term care is examined. Rather than purely medical treatment, long-term care is discussed in terms of supports for functional limitations. This leads to a review of the concept of a continuum of services which includes both medical treatment and functional social supports. Various ways of categorizing services are presented and the most common classifications of services are discussed. Examples of service continuums are included. Home care, adult day care, adult day health services, and social/health maintenance organizations are touched upon. In addition, alternative living arrangements, congregate housing, and adult foster homes are also reviewed.

How and what long-term care services are selected by a state depends in part on the approach a state takes towards program eligibility. Thus, a discussion and review of the pros and cons of the functional (or generic) approach vs. the categorical (classification by age or diagnosis) is undertaken. The developmentally disabled is reviewed next with this in mind. Finally, various services for the developmentally disabled, including children, are then presented.

Single Entry Point and Long-Term Care Services: Theoretically, the examination of a single entry point as a method of access to long-term care services can be carried out regardless of the types of services eventually provided. (See discussion in chapter 1.) An SEP is merely the funnel through which clients pass in order to obtain end services. Pragmatically, what services await at the end of the funnel can affect the operation of an SEP. A chief obstacle to a unified SEP is the differing categorical sources of funding for various populations (determined by diagnosis or age) that are available at both federal and state levels.

As discussed in the previous chapter, Medicaid has evolved into the largest payer of long-term care expenses. However, Medicaid pays only for care that is medically necessary and related. Unfortunately, the continuing preference for long-term community- and home-based care rather than institutional (but medically-related) nursing home care is not covered under Medicaid. As a result, states have had to obtain individual waivers for programs that provide such community care services. Thus, what services offered by a state's long-term care system and how they are funded affect, to some degree, how well an SEP may operate.

One difficulty in integrating a system, including the implementation of a single entry point, is the need to obtain federal waivers. A much larger, possibly insurmountable, problem for many states, is the pooling of differing categorical funding sources that have contributed to the development of historically fragmented systems. A state that has an administrative structure based on the "consolidation" model is best positioned to attempt this. For example, Oregon administers all its long-term care programs through one agency: the Senior Services Division of that state's Department of Human Resources. Such a consolidated structure would be able to reap greater efficiencies from an SEP. However, this is not to say that an SEP requires total consolidation of all programs, services, and funding for all target populations in order to work. Integration can be a matter of degree. Coordination of services, programs, and funding in states not undertaking a major governmental reorganization can still make for a viable SEP process.

Nursing Homes and Community- and Home-Based Long-Term Care: For many who have had no personal experience with the long-term care system, "long-term care" stereotypically means living in a nursing home. For example, many elderly may believe that by remaining at home -- and thus, staying out of a nursing home -- they are avoiding "long-term care." In fact, caring for themselves or being cared for by relatives, friends, or neighbors in their own homes is the major form of long-term care today:88

• Of the 12.7 million people needing long-term care, only 2.4 million of these live in institutions such as nursing homes and intermediate care facilities for the mentally retarded (ICF/MRs), while 10.2 million live at home or in community settings. There are 6.2 million people who need help with basic self-care tasks, 2.4 million of whom live in institutions. Of the 5.1 million who are most severely disabled, 1.3 million live in the community and need assistance with three or more self-care tasks.

Furthermore, of the severely disabled older persons living in the community, about 75 percent rely exclusively on informal care supports.89 An Indiana study reports that:90

• [t]he majority of even the very old [aged 85+] are not in a nursing home at any one time. Most live in the community and receive needed assistance from a variety of family and other informal caregivers. Currently, only a very limited number of elderly receive formal paid community based care.

Informal care includes unpaid help provided by family, friends, neighbors, and volunteers to a person who has some degree of mental or physical impairment. This pattern of preference for living in the least restrictive setting supports the view that at-home and community-based care are the mainstream and not "alternatives" to long-term care:91

• When state debates focus on long term care system reform, discussions now are likely to highlight ways to expand the availability of community care services rather than emphasize only the detailed nuances of nursing home reimbursement. Older people strongly prefer to receive long term care services in the community. . . . State policymakers are attempting to channel the growth in expenditures to services provided in the community, as the elderly prefer, instead of to continued expansion of nursing home beds.

Long-Term Care and Long-Term Care Populations: According to the United States Department of Health and Human Services:92

• [L]ong-term care consists of those services designed to provided diagnostic, preventive, therapeutic, rehabilitative, supportive and maintenance services for individuals who have chronic physical and/or mental impairments in a variety of institutional and noninstitutional health settings, including the home, with the goal of promoting the optimum of physical, social and psychological functioning.

The American Association of Retired Persons considers long-term care as:93

• [A] set of health care, personal care, and social services delivered over a sustained period of time to persons who have lost, or never acquired, some degree of physical or cognitive capacity, as measured by an index of functional ability. . . . The need for long-term care is generally defined by limitations in the ability of individuals to perform basic activities of daily living independently, including self-care and household tasks. While most people needing long-term care are elderly, 2 percent are children and 40 percent are working- age adults.

A similarly worded definition is given by the Maryland Health Resources Planning Commission that can be considered generic for the term:94

• [Long-term care is] the array of medical, social and support services needed by individuals who, because of chronic illness or disability, need another person's help in caring for themselves over an extended period of time. This includes both institutional and community-based services for persons of all ages.

That state's Long-Term Health Care Committee gives the definition a slightly different cast. Emphasis is placed on financing, organization, and delivery of services as well as the otherwise good health of individuals who need help functioning in its definition of long-term care:95

• [Long-term care is the] financing, organization, and delivery of a wide range of medical and human services to people who are severely disabled or limited in their functional capacities for a relatively long and indefinite period of time. In medical terms, long-term care is chronic care: the aim is management, control of symptoms, and maintenance of function. But long-term care also has a vast non- medical dimension, and many individuals requiring long-term care are not sick. They may have been injured, or were born with a developmental disability that limits their activities, but otherwise may be perfectly healthy.

Long-Term Care Populations: Long-term care populations, then, extend beyond the elderly to include the disabled of all ages. Whether or not a state wishes to formally include all possible populations in its long-term care programs is a policy issue. First, the way categorical programs and funding for different populations have developed historically within a state will probably heavily influence policy. For example, adequate funding for a designated but limited population may make it unnecessary to include that group within a larger long-term care population for funding. Conversely, funding may be inadequate but categorical restrictions may prevent their inclusion in a larger group. The patchwork development of funding and programs makes it hard to minimize service overlaps and prevent service gaps.

Second, the degree to which categorical group advocates contend or cooperate will also make a difference. Advocates for an established majority population may feel the inclusion of minority populations (such as AIDS-disabled persons, Alzheimer's patients, the chronically mentally ill, post-trauma patients undergoing rehabilitation, the chemically chronically dependent) may dilute their focus. Minority, majority, or plurality group advocates may wish to augment their roles, perhaps at the expense of other group advocates. Even in an all-inclusive long-term care population group, funds must be allocated in some way among the different sub-groups. (Wisconsin's response to this problem is to require its Community Options Program to serve persons from the major target groups in proportions which approximate the percentages ("significant proportion") served in nursing homes prior to the program's inception.)96

Third, because "public funds are still inadequate to address all long term care needs . . . states have had to make painful choices in selecting population groups to cover."97 States like Maryland have recognized that "a fundamental policy question is whether services should be limited to the most impaired or whether a broader group of persons should receive services that only partially meet their needs."98 The upshot is that for most states, including the six studied by Justice, et al., (1988), long-term care programs will usually "opt to meet the more intensive needs of the most impaired, recognizing that those persons not served may also have significant functional limitations."99

Of course, the dearth of funds for long-term care provides an incentive to wring more efficiency out of the long-term care system. States are "changing how older people enter the long term care system and how they become eligible for services"100 to overcome the fragmentation of existing multiple programs and to make better use of new resources. This may well include the design of an efficient SEP process. Ironically, however, this approach could prove dangerously circular. More long-term care populations will be included in an ever more integrated system in which nursing home-eligible individuals are referred to community-based supports. More people will begin to expect to receive a multitude of in-home or in-community services and to avoid the spectre of a terminal nursing home stay. The danger lies in not having the community resources and funding to accommodate this rising expectation. When a state channels people away from Medicaid-paid nursing homes to "no more costly" or less costly home or community settings, there must be enough supports.

Long-Term Care Services as Supports for Functional Limitations: Obviously, long-term care does not preclude medically-related care. On the other hand, community-based care focuses more on long-term supports to enable daily functioning rather than medical treatment. Home health agencies provide excellent post-acute skilled nursing care. They provide nursing services for people suffering from various chronic illnesses such as diabetes and arthritis. They also help with catheters, medications, injections, and rehabilitation therapy for people who have suffered strokes, fractures, or are recovering from surgery.101 However, the use of home health services conflicts with the concept of community care even when the former expand beyond the traditional package of Medicare services. Home health agencies usually require all home care to be given under the direction of registered nurses to emphasize a stronger health focus. As a result, some believe home health agencies respond "in a way that is more medically related than necessary, desirable, or affordable."102 Justice, et al., note the difference between long-term community-based care and Medicare home health services:103

• Community care programs complement acute care services by providing generally non-medical services delivered by professionals and non- professionals. Medicare's services respond to an acute care need which can be successfully treated over three to four weeks; community care services respond to client functional limitations that are likely to be present for an extended period of time, perhaps for the remainder of one's life. . . [Medicare's] home health focuses on restorative and rehabilitative care, whereas long term care services seek to maintain current levels of functioning although both provide care in the home.

Medicaid is required to cover most nursing home services for all over the age of 21. For those who are nursing home-eligible, Medicaid must also cover home health services. (Other home- and community-based long-term care services are optional. States may provide personal care to all Medicaid-eligible individuals through their state plan.)104 Skilled home health services are prescribed, triggered by a medical diagnosis, delivered by a health care professional using a clinical focus, and address a person's medical needs, usually short-term following hospital discharge.105 (Note: According to Lee (1992), Hawaii had 44 certified home health agencies in 1989, compared to 704 in California, 104 in Arizona, and 42 in Nevada.)106

On the other hand, community-based long-term care services are meant to compensate for a person's limitations in carrying out normal activities of daily living (ADLs) for an extended period. This type of long-term care is based on functional need and rely extensively on non-professional social supports.107 Just what services constitute these supports?

Long-Term Care Services -- A Continuum: The notion of using a continuum of services -- as opposed to discrete, unrelated services -- to address long-term care needs is, by now, a standard concept. One practitioner observes:108

• A continuum of chronic care services is the purposeful association of health and social services, each having varying elements responsive to the multiple and diverse needs of a chronically ill person and members of that person's family.

Most services vary by level of care and apply to persons in multiple populations with similar long-term care needs. Other services in the continuum address the specific needs of certain populations and not others. For example, special education, job training, and housing assistance may be appropriate for developmentally disabled adults seeking jobs in the community. But they may not be necessary or appropriate for the disabled elderly. The former may require more help to get and keep a job while the latter may need help only with the social and functional aspects of community living. On the other hand, supported living, including personal care services, may be appropriate for both these populations. For example a young adult with cerebral palsy and a frail elderly individual may both be mentally competent but wheelchair-bound and require personal care several times a week. Both may need food stamps, special travel arrangements, vocational rehabilitation, and emotional counseling.

In some states, services along the entire long-term care continuum can be used to fashion a care plan package. For example, Maine and Wisconsin both avoid defining allowable services under their Home Based Care Program and the Community Options Program, respectively. Almost any service package is possible. Both "explicitly state that there are no disallowed services; only disallowed settings (i.e., services provided in an institution)."109

Addressing only services to the elderly, an Indiana report describes long-term care services as falling within three basic categories in a range or continuum as follows:110

• Community -- These services are designed to help the elderly maintain independence and to encourage their continued involvement in their communities. These are often not services provided to the elderly, but rather opportunities for independence. At this level, non- governmental agencies and funding sources are primarily involved and often include community groups, service clubs, churches, and senior centers.

  In-Home -- As capabilities diminish during the second phase [the first phase of aging being independent, and second, semi-independent, and the third, dependent] and the elderly person becomes more homebound and less able to participate fully in the community, services shift to the home setting. These services seek to support, not supplant, the existing informal support network.

  Institutional -- Significantly diminished capabilities can warrant institutional placement when the elderly person requires a level of nursing care, medical supervision, and supportive services that are impractical or not feasible in the home.

A similar range of categories for long-term care, from the least restrictive to the most restrictive is offered below:111

1. Community Service Model: Individuals live at home but services are delivered elsewhere, e.g. adult day health center or senior center where the emphasis is on daytime social wellness activities.
2. Congregate Housing and Services Model: Housing is supplemented with congregate services, e.g. 24-hour security, transport, recreation, and meals. Life care communities are a modification of this model where large initial payments are made, supplemented with monthly fees which cover housing and medical care. Group or boarding homes do not provide health care but allow residents to share house duties. Foster adult care is a variation.
3. Home Care Model: Individuals are homebound (about 5% of the elderly population); individuals may also be bedbound. Services include those of physicians, nurses, social workers, and attendants offering various therapies, personal care, homemaking, transport, and home modifications. Examples of this model include various states' "nursing home without walls" (such as New York's St. Vincent's Hospital and Medical Center). St. Vincent's began as one of the first pilots in New York's Medicaid-funded nursing home without walls program in 1979. It provided a ". . . broad array of in-home services, including not only the physician-nurse-social worker team but also various therapies, paraprofessional care, and medical equipment and supplies, nutritional counseling, heavy chore services and personal emergency response systems. Only persons entitled to Medicaid are eligible, with few exceptions, and the patient's rights to remain eligible are held to rigid norms of cost and service."112 The aim is to replicate the supportive services usually provided in institutions or congregate housing for those living at home.
4. Institutional Care Model: Hospitals and nursing homes provide care in this category. Nursing homes provide skilled, intermediate, and personal care. Care can be either for short- term post-hospital or rehabilitation services or for chronic long-term care. "Skilled care is defined by Medicare and Medicaid as that provided in a state-licensed institution (or a distinct part of an institution) that is primarily engaged in giving skilled nursing care and related services to patients who require medical, nursing, or rehabilitation services for an extended period of time but do not require hospitalization. . . . Intermediate care is that provided in an institution licensed by a state to provide health-related care to individuals who do not require the degree of care provided by a hospital or a skilled nursing facility but do require care or services available only through an institutional facility. These facilities are sometimes called supportive nursing care or health-related facilities. . . . Personal care is assistance with such activities of daily living as bathing, toileting, eating, transferring, and ambulating provided to an individual in an institutional setting. Customarily, three or more of these services are routinely provided to each client in order to qualify an institution as a personal-care facility."113

Broken down in terms of home- and community-based services and not in terms of models or categories of long-term care:114

1. Rehabilitation: restores or maintains wellness and physical, mental, and social functioning after accident, injury, surgery, or illness. Usually includes various therapies (occupational, physical, speech, hearing, etc.).
2. Counseling: often offered at senior centers, nutrition sites, congregate housing, and nursing homes.
3. Senior center services: education, information and referral, counseling, health, employment, recreation, volunteer, and special services including therapy and transport.
4. Transportation: from housing to senior centers and for physician visits, church, etc.
5. Nutrition program: includes delivered meals.
6. Home health services: licensed home health care authorized by physician to restore/maintain health and minimize effects of illness or disability which may include nursing, various therapies, physician services, social work, and counseling. May be supplemented by personal care and homemaker services or be substituted for by the latter two.
7. Homemaker services: (also known as chore services) are non- medical. Unlike personal care services, they are limited to services to enhance the physical environment and not the person.
8. Personal care services: non-medical help with ADLs and affects the person, not the environment.
9. Adult day health services: provided in daytime congregate settings to those not needing institutionalization which include health care, physical and vocational rehabilitation, meals, personal care, and recreational and educational activities.
10. Spiritual supports: on-site or via transport to a religious site.
11. The arts: local artists perform for the home-bound.
12. Respite care: infrequent and temporary substitute care, or supervision of a disabled person in the absence of the normal caregiver or to provide that caregiver with relief. Can be provided through in-patient facilities, home health agencies, adult day care/health centers, and adult night care.
13. Hospice care.

From yet another perspective, Figure 3-1 lists an ideal set of services in a continuum of care for the elderly based on options available in Indiana in 1990.115

                           Figure 3-1

  Type of Service Community        Supported Living Institutional

  Housing         -Own home or apt.                 -Own home-
Nursing home
                  -Low income      -Residential     -Hospital
                   housing          facility        -Sub acute units
                  -Retirement      -Group home      -Alzheimer's units
                   community       -Adult foster
                  -Accessory apts.  care
                                   -Home repair
                                   -Weatherization

  Social/         -Senior centers  -Friendly visitor-Activity
programs
  Recreational    -Intergenerational                -Telephone-
On-site child care
                   activites        reassurance     -Volunteer
                  -Senior community                 -Social model
   involvement
                   and church groups                   Adult day care
                  -Volunteer
                   opportunities

  Mental Health   -Senior centers  -In-home counseling-In facility
                  -Mutual support and               -Outreach
counsleing
                   self-help groups                 -Friendly
visitor            and therapy
                                                    -Family
support
                                                     groups
                  -Clinical services                -Caregiver
support           -Alzheimer's units
                  -Volunteer        groups          -Staff
training
                   opportunities
                  -Peer counseling -Respite care

  Health/         -Congregate meals                 -Home  health
care              -Support services
  Support Services                 -Transportation  -
Homemaker/chore    provided as part
                  -Preventive health                 services  of
total service
                   services                          package
                                   -Personal care
                                   -Homebound meals
                                   -Adult day care
                                   -In-home respite care
                                   -Transportation
                                   -In-home activity aide
                                   -Electronic emergency
                                    response
                                   -Live-in companion
                                   -Escort services
                                   -Bill paying assistance

  Access Services -Information and -Information and -Preadmission
                   referral         referral         screening
                  -Assessment      -Assessment      -
Reassessments
                  -Case management -Case management
                                   -Care plan
                                    development

  Consumer        -Adult protective                 -Adult
protective        -Facility licensure
  Protection       services         services                  and
certification
                                   -Agency regulation-Adult
protective
                                    and licensure    services
                                   -Staff licensure -Guardianship
                                    and certification     program
                                   -Staff training  -Ombudsman
                                   -Practice standards
                                   -Gatekeeper programs
                                   -Guardianship program

  Public and      -Personal funds  -Same as Community-Personal
income
  Private Financing                -Social security        except
employment         and assets
                  -Employment training              -Long-term
care              -Long-term care
                   and placement    insurance        insurance
                  -SSI and state   -home equity     -Individual
medical
                   supplement       conversions      accounts
                  -Food stamps     -State community -Medicare
                  -Housing subsidies                 care funding
  -Medicaid
                  -Older American's                 -Medicaid
waiver
                   Act funds       -SSBG funds
                                   -Tax credits and
                                    exemptions for
                                    caregivers
                                   -Social HMOs
                                   -Life care communities
                                   -Medicare
                                   -Volunteer credits

Figure 3-2 (part 1 and part 2) compares the scope of services among four different models of a continuum of services. The first ("Benjamin") is the only model that targets a specific long-term care population (AIDS patients). The second ("Pepper Commission") describes the benefits under a national long-term care proposal. The third ("MHRPC") derives from a state planning document written by the Maryland Health Resources Planning Commission. The fourth ("STEPS") lists the services options for an individual's plan of care used by the Maryland Statewide Evaluation and Planning Services preadmission and annual resident review coding sheet.

Maryland's Committee on Long-Term Care believes that the long-term care service continuum should identify the full range of generic services that all long-term care populations need. The advantages of this approach are that it conceptualizes the broad impact of long-term care conditions and disabilities, it emphasizes the common needs among all long-term care populations, and it focuses on the long-term care system rather than discrete services. In recommending a comprehensive continuum of long-term care services, the Committee did not require all services to be provided under one organization nor did it expect government to provide all of it. Furthermore, the Committee recognized that many persons will not require all services but that with appropriate supports, informal caregivers will continue to be the mainstay of the system.116 . Figure 3-3 reflects the recommendations for a continuum of services made by the Committee.

                     LONG-TERM CARE SERVICES


                           Figure 3-3

     A.  System Needs

         1.    Information and referral
         2.    Preadmission screening
         3.    Case management
         4.    Simple coordinated access

     B.  Inpatient health care facilities

     C.  Inpatient long-term care facilities

     D.  Prevention/Early Intervention Services

     E.  Community-based services

         1.    Medical Care
               a)   practitioners offices
               b)   outpatient clinics
               c)   home health services
         2.    Residential services
               a)   assisted housing
               b)   home renovation, repair, subsidy
         3.    Day Care
         4.    Transportation
         5.    Personal Care
         6.    Homemaker Chore
         7.    Nutritional assistance
               a)   home-delivered meals
               b)   congregate meals
         8.    Medication management
         9.    Caregiver supports
               a)   respite
               b)   training and education
               c)   supportive counseling
               d)   financial assistance
         10.   Habilitation and Rehabilitation
         11.   Employment related services
               a)   prevocation and vocational services
               b)   supported employment
         12.   Ongoing socialization
         13.   Protection and Advocacy
         14.   Income Maintenance
         15.   Volunteer services

Utilizing a continuum of care builds in a measure of flexibility when responding to changes in an individual's long- term care needs. However, coordination of any changes in services, especially funding sources, is necessary in order to minimize disruption in care.

Inconsistent Terminology: Confusion may arise from the differing use among states of terminology for community- and home-based long-term care services.117

• Categorizing state service options first requires some common definition of terms. Each state used different names to describe essentially identical in-home services (such as personal care, supportive home care, homemaker, in-home aides). . . . These services are typically defined to encompass a wide range of activities from heavy to light housekeeping and from minimal to substantial assistance with bathing, dressing, eating and other activities of daily living.

For example, in the six-state study by Justice, et al., similar services are delivered under the rubric of "home care services" in Arkansas, Illinois, Maryland, Maine, Oregon, and Wisconsin. They are: "personal care," "housekeeping/chore homemaker," "personal care in-home aides," "personal care assistance," "home care," and "supportive home care," respectively.118 These are not identical. Personal care addresses impairments with ADLs such as eating, bathing, dressing, and toileting. Chore services, on the other hand, help individuals who have difficulty with Instrumental ADLs (IADLs) such as shopping and meal preparation. With companion sitter services, a trained live-in person (sometimes another elderly person) ensures that medications are taken and does the housekeeping, shopping, and cooking.119 On the other hand, in the completely different area of long-term care living arrangements, different services address that same need. These are "board and care"; "congregate housing services"; "adult foster care"; "residential care facilities"; "adult family homes"; and "community-based residential facilities."120 Another listing of alternative living arrangements (for the elderly) include:121

• Living in original home
• ECHO housing ("Elder Cottage Housing Opportunity" housing: temporary, detached, usually pre-fabricated units sited near a caregiver's home)
• Shared housing (many elders living in one house)
• Boarding homes
• Retirement centers
• Congregate housing
• Efficiency apartments which include special modifications for the functionally impaired, such as safe appliances, low shelves, emergency call buttons, bath railings, limited entry for security, etc.
• Residential housing
• Living with family members

Home Care -- Informal Support by Family Caregivers: The terminology of long-term care services may cause confusion that is distracting. But it must be noted that home care, as provided by usually unpaid informal caregivers such as family or friends, accounts for about 75 percent of home- and community-based long- term care. Of the 12.7 million individuals with long-term care needs, about 80 percent (10.2 million) live either at home or in community settings.122 In 1991, 5.3 million persons aged 65 and over who needed help with an ADL or IADL were not institutionalized. Many of these persons do not receive formal home- and community-based long-term care services. They rely instead on informal support given by family and friends.123 Thus, informal care constitutes a large, if not dominant, portion of long-term care. The point is that informal care is usually unpaid and forms the basis upon which publicly-funded packages of long-term care services are authorized. Although a significant part of the continuum of long-term care, informal care is not a "service" that can be authorized and provided by any program. Most states do not penalize a potential client by authorizing a reduced amount of support services based on the degree of informal support already available to the client. However, screeners, assessors, and case managers routinely take this into account in fashioning a care plan. Nonetheless,124

• Family caregivers are recognized as the primary provider of long term care services, and as such are the target for increased state efforts to provide them with non-monetary support in order to sustain their efforts. State policies explicitly establish linkages between informal supports and several aspects of formal service delivery systems. For example, family supports are one factor used in assessing an individual's need for publicly assisted community care services. They are also acknowledged in the frequently articulated care planning goals of "building the formal system of care around existing informal supports." And their views are solicited as part of the preadmission screening process. All of these policies relating to informal supports have become universally accepted principles that are relatively easy to implement. [Emphasis added]

Although the role of informal caregivers is recognized, some government officials are reluctant to pay family caregivers due to philosophical concerns over using public funds to subsidize what are believed to be family obligations:125

• Where such payment is made it is unvariably [sic] the option of last resort. Usually payments are linked to financial hardships resulting from caregiver activities, such as being unable to seek paid unemployment.

In four of the six states studied by Justice, et al., family caregivers can be paid as providers under some of the major long- term care programs.126

Home Care -- Personal Care and Homemaker Services: Where home care in the form of unpaid informal support is unavailable or inadequate, community care programs usually authorize personal care and homemaker services. This is the first major component of home- and community-based long-term care. As noted before, these services address both ADL and IADL-impairments and can go by different names. Depending on the state and the target population, these services may be administered by state or local units or by private nonprofits or even for-profit agencies. Actual services can be contracted out to home care agencies or other private providers.

Personal care and homemaker services enable individuals who need help with one or more ADLs or IADLs to continue living at home or in a community setting. Trained staff go to the impaired person's home to perform various care services. For example, personal care attendants may help clients to eat, bathe, dress, toilet, and get around inside or outside the home. Homemakers or chore assistants may help the the client manage the household budget, prepare meals, and do the shopping, laundry, and housekeeping. Their services may be paid for directly by the authorizing program or by the client through a subsidy. Some states offer these services to private-pay clients on a sliding- scale fee basis. Typically, clients not ordinarily eligible for Medicaid are assisted by these private pay programs. The rationale is that these services either delay or prevent their entry into more expensive nursing homes.

Adult Day Care and Adult Day Health Centers: Non- residential adult day care centers (ADCC) and adult day health centers (ADHC) comprise a second major component of long-term community- and home-based care for the elderly. Elderly who are functionally impaired travel from their homes to a care center to receive services. In general, ADHCs offer more services, including a medical component, than ADCCs.

ADCCs do not provide medically-related services although they may provide general nursing services. "Adult day care is not designed for those who are bedridden, severely disoriented, or potentially harmful or disruptive."127 They do offer a respite for family caregivers. In addition, they provide active therapeutic treatment as well as needed socialization for functionally impaired elders who find it hard to carry on a normal social life. ADCC services are not cheap, but are cheaper than eight hours of homemaker services.128 Adult day care can be delivered in various settings: hospitals, nursing homes, senior centers, and freestanding ADCC sites. Typical services provided by ADCCs include the following:129

• Social work services
• Meals
• Nutritional counseling
• Speech therapy
• Physical therapy
• Music therapy
• Reality therapy
• Rehabilitation services
• Transport services

Although ADCC care is usually considered a part of community-based long-term care, Wisconsin explicitly prohibits its program funds to be used for adult day care that is provided in nursing homes. This policy bolsters Wisconsin's aim to expand non-institutional services. In turn, this implies that nursing home-provided adult day care falls within the "relatively well- developed and well financed institutional sector."130 Most other states support adult day care as a component of long-term care. Factors consistently obstructing the expansion of adult day care in most states include the scarcity of initial and continuing funding and limited community awareness of ADCCs as a viable component of community- and home-based long-term care.

According to Lee (1992), almost 83 percent of an estimated 8.6 million elderly persons who need long-term care lived in the community.131 In the four states comprising Medicaid Region 9 -- Hawaii, California, Arizona, and Nevada -- there were 433 licensed adult day care centers in 1989. California had the lion's share with 91 percent (392) of all Region 9 ADCCs. Hawaii had 14 (Arizona had 24 and Nevada had 3).132

In Hawaii, the Department of Human Services regulates the services and licensing of ADCCs under chapters 17-1417 and 17- 1424, Hawaii Administrative Rules, respectively. While ADCCs are not required to, they often serve many ICF-level clients. However, they do not receive Medicaid compensation that ADHCs receive for providing care to these ICF-level clients. ADCCs that wish to receive such compensation must qualify for dual licensing as both ADCCs and ADHCs. They have no difficulty meeting DHS standards for day care, but have found it all but impossible to meet DOH standards even for the relatively less stringent freestanding ADHCs.133 (See subsequent section regarding regulation of ADHCs by Hawaii's Department of Health.

Adult Day Health Centers: ADHCs are also non-residential. An often cited example of a community-based, non-institutional long-term care program (for the elderly) is the On Lok Senior Services center in San Francisco. A non-profit, the On Lok program began in 1973 as an adult day health center. By 1979, On Lok was providing the comprehensive services which distinguish the PACE program (program for all-inclusive care for the elderly). By 1983, full risk and fixed monthly capitation payments were included from Medicare, Medicaid, and private funds.

• PACE is part of a national replication project authorized under the federal Omnibus Reconciliation Act of 1986, as amended, which instructs the secretary of the Department of Health and Human Services to grant Medicare and Medicaid waivers to permit not more than fifteen public or nonprofit private organizations in the nation to provide comprehensive health care services on a capitated basis to frail elderly who are at risk of institutionalization. These Medicare and Medicaid waivers allow PACE to receive a per-person payment each month from Medicare and Medicaid without restrictions on service delivery and fee-for-service limitation. As a result, PACE has the authority and flexibility to consolidate these funds and provide any services ranging from adult day health center to acute hospitalization. . . . Operating within a cost-effective, capitated risk based financing system, PACE charges a fixed monthly payment per person for a complete package of health and social support services. This capitated financing requires PACE to assume full financial responsibility for a client's total long-term care and and for cost overruns. PACE's success depends on aggressive community-based preventive care which maintains the elderly's health and avoids high cost institutional care. . . . PACE is a cost-effective alternative program that addresses the problems of fragmented and costly long- term care by meeting the needs of . . . families who are struggling to maintain their frail elderly in their own homes and avoid institutionalization.134

The On Lok program provides long-term care for a population whose average age is 80, two-thirds of whom live alone and half of whom speak no English. To be enrolled, they must be certified by California's Department of Health Services for institutional long-term care. Clients cannot be discharged once enrolled, binding the On Lok program to provide lifetime care regardless of a client's degree of sickness. On Lok now operates three adult day health centers and On Lok House, which is a 54-unit low- income housing complex for seniors. The comprehensive health program also includes in-home, hospital, and (when necessary) nursing home care for some 300 persons.135

Entry into the On Lok program involves the usual three-part process of screening for eligibility, assessment, and creation of a service plan upon enrollment. A potential client's age, frailty, other residency requirements are determined. A comprehensive assessment of the client's health is done by a multidisciplinary team of physicians, nurses, social workers, nutritionists, therapists, paraprofessionals, and other support staff. Upon enrollment, a service plan is created.136

In the case of On Lok, as opposed to the six states studied by Justice, et al., the multidisciplinary staff not only assess and develop the treatment plan, but they also provide direct services and formally reassess clients quarterly. Services provided by the multidisciplinary team include:137

• [p]rimary medical care; dental care, skilled nursing care; physical, occupational, and recreational therapies; social services, nutritional counseling; medical day care; social day care; postdischarge planning; pharmacy services; all health-related transportation; and some in-home services. . . . Essentially, in return for its monthly capitation premium, On Lok pays for and provides every health and health-related service from transportation and social support to acute hospitalization. And most of these services are provided directly by On Lok staff. Care by professional medical specialists, institutional care (acute and skilled nursing), and medical specialty services are provided under contract. . . . On Lok is the only long-term care program in the country receiving capitation financing from Medicare, Medicaid, and private individuals, and assuming full financial risk. On Lok's unique service program is made possible through Medicare 222 and Medicaid 1115 waivers. The waivers are normally time limited; but in spring 1986, federal legislation was passed to make these waivers for On Lok permanent. . . . In the fall of 1986, federal legislation was passed to extend this financing model and its waivers to ten other sites around the country.

Although On Lok began as an adult day health center, it has evolved into a program of all-inclusive care for elders, including acute and skilled nursing care, if necessary. The day health care component remains an integral but smaller subset of the PACE concept of long-term care.

ADCCs and ADHCs in Hawaii: On June 21, 1995, the governor of Hawaii vetoed a measure that would have:138

1. Recognized that ADHCs are a viable alternative to institutional long-term care for elders;
2. Supported the expansion of ADHCs;
3. Required the adoption of coordinated rules to:
   • Guarantee high standards of care;
   • Present a rational, unified framework for eligibility and admission, program, and licensing requirements and scope of services for both ADHCs and adult day care centers (ADCCs);
   • Regulate ADHCs separately from skilled nursing and intermediate care (SNF/ICF) facilities;
   • Require licensing, program, and admission requirements and scope of services of ADHCs to be a superset of the requirements for ADCCs; and
   • Ensure Medicaid reimbursement for freestanding ADHCs for ICF-level patients.

Final enactment of this measure would have helped to more fully utilize both ADCCs and ADHCs more effectively in the community care system.

Social/Health Maintenance Organizations for Elders: Another initiative towards the goal of providing all-inclusive care is the operation of social/health maintenance organizations (s/HMO) for elders. Based on the HMO model of managed health care, the s/HMO provides a full range of acute and supplemental medical services on a capitated basis. Elders agree to use specified s/HMO physicians and health services. In addition, elders receive prepaid, case-managed long-term care benefits covering chronic conditions excluded by Medicare and private insurance. s/HMOs offer a single point of entry and eliminate the arbitrary boundary between acute care hospital and physician services and long-term care services.139 Services usually include homemaker, personal care, respite, adult day health care, transportation, and case management services. Nursing home services are also provided. Four demonstration sites were established: Elderplan, Inc. in Brooklyn; Medicare Plus II in Portland; Seniors Plus in Minneapolis; and Senior Care Action Network in Long Beach.140 However, enrollment in these sites have been low and has been attributed to elders' unwillingness to give up their personal physicians. In addition, enrollment has been depressed by the low maximum amount of benefits for chronic care. According to Rivlin and Wiener (1988): "At most, s/HMO enrollment is likely to be a subset of the minority of the elderly who join health maintenance organizations."141

Hawaii -- ADHCs and PACE: In Hawaii, there are a limited number of ADHCs, both facility-based and free-standing. The Department of Health regulates ADHCs under rules originally designed for skilled nursing and intermediate care facilities (SNF/ICF). (Note: According to Lee (1992), the distinction between SNFs and ICFs is no longer used since the implementation of the Omnibus Budget Reconciliation Act of 1987 (P.L. 100-203). SNFs were formerly distinguished from ICFs by the heavier level of care needed by their residents -- SNF residents typically required continuous 24-hour nursing care, whereas ICF residents typically required intermittent nursing care.)142 Because ADHCs are subject to these more stringent rules, only a handful of ADHCs have been qualified.143 In 1992, the Legislature found that PACE costs less than what Medicare, Medicaid, and private individuals currently pay for long-term care. It also found that:144

• PACE provides a complete package of services that enhances the quality of life for the elderly participant and offers the potential to reduce and cap the costs of the medical needs of the participants. . . . PACE is a cost-effective alternative program that addresses the problems of fragmented and costly long-term care by meeting the needs of Hawaii's families who are struggling to maintain their frail elderly in their own homes and avoid institutionalization.

As a result, the Legislature established the Hawaii PACE demonstration project at Maluhia Hospital in 1992 with the following goals:145

1. Maintain eligible persons at home as an alternative to long-term institutionalization;
2. Provide optimum accessibility to various important social and health resources that are available to assist eligible persons in maintaining independent living;
3. Coordinate, integrate, and link such social and health services by removing obstacles which impede or limit improvements in delivery of these services; and
4. Provide the most efficient and effective use of capitated funds in the delivery of such social and health services.

Alternative Living Arrangements: A third major component of community-based long-term care is the provision of alternative living arrangements other than institutionalization. Justice, et al., found that:146

• Increasingly the lack of support housing options is viewed as a major gap in community care delivery systems. Without a place to live frail older people cannot remain in the community regardless of how well the long term care system is organized. The study states have finally bridged the barriers between health and social service systems in their development of integrated community care programs.

They concede, however, that there is still a need to better link housing policies and long-term care. Most housing programs are federally administered with distinctly different financing and administrative structures. Long-term care systems, on the other hand, are state-managed.

Congregate Housing, Adult Foster Homes, Board and Care Homes, and Residential Facilities: One type of alternative living arrangement is congregate housing. Congregate housing allows states to offer support services without the need to build new housing for the elderly. Existing housing (usually federally assisted) projects are increasingly becoming the homes of frail and impaired older people as they "age in place." Residents continue to occupy their own apartments, in contrast to board and care homes. Rents are often federally subsidized in congregate housing for low income persons. For its part the state, which runs long-term care programs, provides a package of support services such as meals, personal care, and housekeeping. Other services may include emergency call systems (attached beeper with which to call for help); home health care; volunteer visitors; and daily telephone checks.147 Typically, the target population in congregate housing have only moderate impairments and are not candidates for nursing homes.

In Maine, the same functional assessment tool used for determining eligibility for its Homes Based Care Program and for preadmissions screening is used to determine the need for congregate housing services. Only low income elderly are eligible. In Maryland, moderate income elderly can access the package of support services by paying fees on a sliding scale basis.148

Personal care is provided in adult foster homes which can each accommodate a small number of clients. Oregon restricts the number of residents to five per foster home. That state's use of adult foster homes is a major service strategy under its Medicaid waiver program. The program allows current nursing home residents to be relocated to community settings. Adult foster homes are licensed by the local Area Agency on Aging and paid directly by clients receiving Medicaid waiver funding.149

Board and care homes, although alternatives to nursing homes, are still considered institutional. They do not offer the privacy of living in adult foster homes and certainly not in living in one's own apartment or in congregate housing. They are, however, preferable to traditional residential care facilities which are larger and have a less family-like environment. Medicaid waivers can be used for care in these residential care facilities. For example, Oregon pays the care facility directly for the package of support services while clients pay for room and board.150 Arkansas has over 100 residential care facilities and pays a fixed amount to providers for recipients at risk of entering nursing homes. Wisconsin pays for services in residential care facilities only if clients number no more than four, six, or eight under differing circumstances.

ARCHs in Hawaii: In Hawaii, there are about 500 adult residential care homes (ARCHs) with about 400 on Oahu.151 ARCHs are divided into Type I and Type II. Type I facilities provide a setting for group living for up to five unrelated persons. Type II facilities serve six or more persons. Residents can include the mentally ill, elderly, disabled, and developmentally disabled. ARCHs provide three levels of care (LOC) for which they are reimbursed escalating rates of payment. Although both facility types have the same minimum supplemental state payments, the larger Type II ARCHs have higher reimbursement ceilings than the smaller Type I ARCHs. (Note: Both Type I and Type II ARCHs are paid supplemental payments by the State of not less than $79.90, $129.90, and $191.90 for levels of care (LOC) I, II, and III. However, Type II ARCHs have higher payment ceilings at $338.90, $477.90, and $579.90 for LOC I, II, and III, as opposed to $284.90, $369,90, and $471.90, respectively, for Type I ARCHs.)152 ARCHs, however, are not licensed to care for nursing home-eligible clients. Nonetheless, many ARCH operators claim that they care for ICF-level clients without being reimbursed at the ICF-level.

In 1994, in recognition of this and to relieve the long waiting list for SNF beds, the Hawaii Legislature established the Maluhia Waitlist Demonstration Project (MWDP).153 (See chapter 5 for a more detailed discussion of the MWDP.) The purpose of the MWDP is to establish a new category of ARCH qualified to serve nursing facility-level clients. These ARCH residents would then qualify for higher State Medicaid payments -- $927.90 -- of which $30 goes to the ARCH resident for spending money.154 Actual startup of the program is scheduled for October, 1995.

The number of individuals staying in acute care hospitals in Hawaii -- at a cost of about $2,000 per day -- waiting for nursing home beds is about 400.155 (Note: In 1988, Medicaid recipients in Hawaii spent a total of 160,000 days in SNFs, averaging 129 days of care. In 1989, Hawaii Medicaid residents spent 671,000 days in ICFs, averaging 236 days of care. Nationally, the average days of care in SNFs and ICFs were 198 and 262, respectively.)156 The MWDP is designed to alleviate the shortage of nursing home beds by routing nursing home- eligible patients from acute care hospitals to upgraded, new- category ARCH facilities.157 Selected ARCH operators are to be trained to accommodate the types of clients to be targeted. ARCH services for these nursing home-level residents in the MWDP will be supplemented with home health care, case management, and community support services.158

In terms of access by different populations, the MWDP does not impose age limits for clients. Thus, the project is not limited to the elderly -- the population one normally associates with nursing homes. Rather, it is open to all persons without regard to age who have "been approved by the [D]epartment of [H]uman [S]ervices for nursing home placement at the intermediate care facility or skilled nursing facility level."159

Categorical Versus Generic (Functional) Approach: How a population is classified or defined often determines who can have access to services. Consequently, such definitions are matters for policy decisions. Historically, groups needing long-term care have been defined categorically on the basis of diagnosis or age, mostly reflecting funding streams. For example, states often have offices on aging to fund elderly long-term care programs, and separate mental health and developmental disability agencies to care for their respective categorical populations.

Advantages of a Categorical Approach: The categorical approach has been in place in many states by historical default. However, its value is not due entirely to historical accident. According to a 1991 study by a Maryland commission, the advantages of the categorical approach include:160

• This is the way that most people think of long-term care populations. Nonprofessionals generally become interested in long-term care because they, a family member, or a friend require long-term care services. They help to organize and support an infrastructure for that population.
• These categories describe legitimate differences between populations, ages, and disabilities and the diversity of service needs that should not be ignored.
• Many existing funding streams, such as Older Americans Act funds, are categorical.
• Networks of population-focused advocacy associations already exist. Providers and professionals specialize on the basis of long-term care population.
• Many people believe that the only way to address the specific needs of a given population is to focus on that population.
• Offering service by population category can make eligibility [determination] easier; for example, a person is over age x, or younger than age y, or has a particular diagnosis.

Disadvantages of a Categorical Approach: The categorical approach has its drawbacks, chief among which is the issue of equity of access. The following are often-cited disadvantages of the categorical approach:161

• Artificial gaps in services are created because a person may be too young or too old to be eligible for an age-based service or have a multiple diagnosis involving two or more agencies.
• Inequitable treatment results when people with equal disabilities or needs do not receive equal service because they are in different eligibility categories (for example, more or less than age 22, over or under age 65).
• Complex application procedures.
• Fragmentation and duplication of services may well result as each categorical agency develops its own community-based long- term care system.
• This approach encourages population-focused advocacy groups to address their own population's problems separately, even though their problems may be common to many other populations.

The Generic Approach: As an alternative to the categorical approach, generic long-term care services can be provided to different categorical populations based on functional need. For example, regardless of the diagnosis or age of an individual, personal care is almost uniformly required for all persons needing long-term care. The chances are that developmentally disabled children and non-elderly adults need the same type of help as the frail elderly in ADLs such as toileting, bathing, and dressing. In fact, the generic approach would include all other sub-groups requiring long-term care such as AIDS and Alzheimer's patients. Thus, using functional eligibility criteria may imply the need for a policy decision to include those without financial need for services. Functional criteria can also be used to limit the size of the recipient population. For example, increasing the number of qualifying ADLs would limit the population of eligible individuals. On the other hand, lowering them could include, say, the less disabled so that services would slow their deterioration, reduce the erosion of social supports, and lessen other types of disabilities such as depression, incontinence, and falls.162 Others counter that inclusion of additional subgroups is inefficient and dilutes funding efforts so that services are not maximized for those with the greatest need. Thus, setting the number and types of ADLs used to screen the recipient population is a matter of policy.163

Advantages of a Generic (Functional) Approach: In any case, the following are typical advantages of a generic, or functional approach:164

• Services are more effective and efficient because of the elimination of duplication and fragmentation. One agency could provide services for several categorical populations.
• Services are more equitable because persons with the same level of disability will get the same service, regardless of diagnosis or age category.
• An agency is better able to follow an individual as his or her needs change over time, without disjunctures such as movement from [the] children's to [the] adult services system, or from the adult to the elderly service system.
• It encourages coordination of services and allows pooling of resources.
• By combining populations, this approach may encourage coalitions of otherwise isolated groups to advocate for and protect programs benefiting several categories.

The literature indicates that the trend is toward delivery of long-term care services generically based on need rather than on a categorical basis. Fiscal constraints increasingly felt by the states are also generating support for the generic approach, heightening their belief that categorical programs are probably more costly and inefficient.165 The following is an example of one state's recommendation on policy regarding this issue:166

• The [Maryland] Committee on Long-Term Care believes that equity of access to long-term care services should be a guiding principle of the long-term care system. Individuals with similar needs for long- term care services should have equal access to the needed services and not be denied services because they are targeted to a particular age or disability group. As a consequence of the way long-term care services have evolved, the current [categorical] long-term care system does not meet this test of fairness.

  The Committee believes that equitable access can best be achieved when services are organized generically rather than categorically, and when eligibility is determined by an assessment of functional disability. This does not mean that age or specific disability is of no consequence, or that some aspects of the service system would not be organized to provide for such needs as might be peculiar to a particular categorical population.

Of course, as with any policy, the proof of the pudding is in the eating. It is one thing to state policy but quite another to implement it through viable action. An affinity for the generic approach implies the need to integrate the system to some degree, if only the establishment of an SEP. Because services are to be delivered across categorical groups, some measure of integration, or at least coordination, is necessary to screen, assess, and manage previously discrete populations. Once it is decided to do so, a solid foundation needs to be built through careful and thorough negotiations among all the players in the long-term care arena. Interagency agreements need to be reached. Intraagency and interagency activities and procedures -- such as the screening, assessment, and case management processes -- need to be unified, coordinated, or re-structured. Advocacy groups need to be consulted. If no major governmental reorganization is involved (cabinet or umbrella/coordination models) a strong interagency coordinating body with substantive powers needs to be established. Even so, without equally strong leadership and commitment from a state's governor, such coordination efforts may flag. The public, especially those who need long-term care and their families and informal caregivers, need to be educated, kept informed, and consulted. Activities of providers (acute care hospitals dischargers, SNFs/ICFs, home- and community-care providers, benefits coordinators, insurers, state and federal funding agencies, etc.) need to be coordinated.

Disadvantages of a Generic (Functional) Approach: On the other hand, opponents of the generic, or functional approach typically cite the following disadvantages:167

• Assessment methodologies that cross age and disability categories must be developed, which will be a difficult task.
• Some people may lose services if limited resources are redistributed across all long-term care populations, and eligibility criteria are tightened.
• Shared service delivery may blur the distinct needs of age or disability categories.
• Managing a system with multiple populations and funding streams, and unequal mandates and entitlements, would be administratively complex.
• Many people believe that to organize service other than by population would mean that the specific needs of a given population would never be adequately addressed.
• Resources available to any one group might be diminished, leading to greater turf [b]attles.168

The Disabled as a Functional and Categorical Group: S.C.R. No. 33 and S.R. No. 27 specifically refer to "disabled children and disabled younger adults" in addition to the elderly as target long-term care populations. They are distinct categorical populations for the purposes of funding. However, in terms of long-term care needs stemming from functional impairments, many believe that the distinctions are artificial. There is some disagreement as to how completely these needs are shared by the three groups. It is only logical to see an increasing commonality of needs as the ages between two groups narrow, and vice versa. For example, a disabled 2-year-old's needs will be more similar to those of a disabled 5-year-old than to a disabled 25-year-old, and even less with frail elders. Disabled "younger" adults in their 50s can be almost indistinguishable in their long-term care needs from the frail "elderly" in their 60s. On the other hand, a disabled 25-year-old's needs may differ significantly from a disabled 60-year-old's, particularly if the younger person requires special training and employment supports. However, as one observer notes, various categorical populations need generic services which, by implication, are more apt to be provided in an integrated system:169

• Those likely to benefit most [from case management] include older persons with chronic problems that significantly impair their activities of daily living, younger persons who have neurological or orthopedic impairment due to trauma, the chronically mentally ill, and the developmentally disabled. [Emphasis added]

Regardless of age or disability, all those in need of long-term care are functionally impaired in some way. Thus, all require services that address functional impairments.

The functional differences among the three named groups are a matter of degree. As such, they are subject to disagreement. It is these differences that may give rise to conflict among advocates of the three categorical groups over issues such as integration of services and funding, including a single entry point. Unfortunately, long-term care programs -- particularly their funding sources -- have developed historically in a way that address specific categories of people, not their degree of functional impairment.

One reason why the elderly dominate long-term care is that there are more of them who need long-term care than any other group. Only a very small proportion of children and non-elderly adults are functionally impaired. On the other hand, a larger proportion of the elderly eventually become functionally impaired, including some who may have been disabled at an earlier age. However, not all programs treat the disabled as a distinct categorical funding or programatic group. For example, the Maluhia Waitlist Demonstration Project (above) is open to all who require nursing home placement at the SNF or ICF level. This does not preclude non-elderly disabled adults. Practically speaking, however, nursing homes have not been appropriate placements for disabled children.

The Developmentally Disabled: The term "developmental disability" is similarly defined in many states. Generally, it involves a severe and disabling condition that arises in infancy or childhood,170 persists indefinitely, and causes problems in language, learning, mobility and capacity for self-sufficiency. Chapter 333F, Hawaii Revised Statutes, entitled "Services for Persons With Developmental Disabilities or Mental Retardation" defines "developmental disability" as follows:171

• "Developmental disabilities" means a severe, chronic disability of a person which:
  1. Is attributable to a mental or physical impairment or combination of mental and physical impairments;
  2. Is manifested before the person attains age twenty-two;
  3. Is likely to continue indefinitely;
  4. Results in substantial functional limitations in three or more of the following areas of major life activity; self-care, receptive and expressive language, learning, mobility, self- direction, capacity for independent living, and economic sufficiency; and
  5. Reflects the person's need for a combination and sequence of special, interdisciplinary, or generic care, treatment, or other services which are of lifelong or extended duration and are individually planned and coordinated.

According to Wright and King (1991):172

• Developmental delays result from mental retardation, cerebral palsy, muscular dystrophy, cystic fibrosis, congenital heart disorders or serious heart disease, neural tube defects such as spina bifida, and fetal alcohol syndrome and drug addiction. Infants and toddlers who experience sensory impairment, emotional disorders, or neurologically based learning deficiencies also may have delayed development.

Many developmentally disabled (DD) are children. The federal Children with Special Health Needs Program is a major component of Title V within the Maternal and Child Health block grant. This program provides for specialized health care and support for chronically ill or DD children and their families.173

Long-Term Nature of Services and System Integration: Whether or not all services for the developmentally disabled are, ipso facto, perceived to be long-term in nature may affect how easily the system can be integrated. If they are so perceived, there will be more common ground for sharing the same or similar screening and assessment tools across current categorical long- term care populations. This should be so even at a lower level of integration such as an SEP. Many core services are the same across various categorical long-term care groups. These are services and supports that address ADLs in a home or community setting. However, as discussed above, different categorical groups have certain unique needs. It is these non-overlapping services that address needs specific to a categorical group that may hamper the establishment of an SEP or the further integration of the long-term care system.

On the one hand, it can be argued that all DD services are long-term in nature because DD individuals:

2. Suffer "substantial functional limitations";
3. Have a "severe, chronic disability" which "is likely to continue indefinitely"; and
4. Need services "which are of lifelong or extended duration."

Certainly, the DD population requires help with ADLs in the same way that the frail elderly do. They may even share some needs for various therapies. In fact, some programs only use functional impairment as the criterion for eligibility and not age (which could group non-elderly DD individuals with the frail elderly).

On the other hand, it can be argued that at some point services become merely facilitating and not integral to the long- term needs of the DD population. Some services may not last indefinitely. In fact, some are designed to terminate at some phase of a DD individual's life. For example, the federal Individuals with Disabilities Education Act of 1990 (P.L. 101-476)174 provides for the right to a free and appropriate public education for children and youth with disabilities. Specialized support services that see these children through their public education years terminate at some point. Furthermore, only about one million of the nearly four million Americans who have developmental disabilities may require an intensive array of services for most of their lives.175

Nonetheless, one could say that everything that supports individuals who need care indefinitely is part of a system of long-term care even though specific supports may not last indefinitely. For example, the Fair Housing Amendments Acts of 1988 and 1990 (P.L. 100-430) prohibits discrimination against and accommodates the needs of the DD population.176 One of its effects is to assist and protect the housing interests of the DD population, which contributes to the long-term welfare of the disabled.

Thus, the more such services and benefits are viewed as specific to a categorical group, the more difficult it would be to integrate the system across populations. On the other hand, the more support services are viewed as long-term in nature, the fewer the obstacles to a shared system. Although a discrete service or support may not be needed indefinitely, the continuing need for a set of supports in lieu of institutionalization is the current reality for the DD population:177

• Community living once was reserved for people with mild or moderate degrees of disabilities. Today, community service systems furnish a wide range of services and supports to thousands of consumers with severe disabilities, including people with substantial medical needs and individuals who may act violently toward themselves or others. Once, these people were thought to require highly structured, congregate-care institutional services. This is no longer the case.

In 1967, there were 350 institutions for the developmentally disabled, housing some 228,500 persons. By 1993, the number of institutions had dropped to 240 institutions, accommodating about 71,000 persons.178

Living Arrangements for the DD: In the not too distant past, group homes for the DD were considered one of best ways to integrate DD individuals into society and community life. Group homes were more "homelike" than institutions. However, living arrangements have been trending away from group homes, spawned from complaints that they are not acceptable alternatives to institutions. Some have objected to the "unnatural" environments created by group homes and congregate housing. In the former, six to ten unrelated persons must live together under supervision and are provided with personal care.179

• Housing and support services such as home health care, money management and housekeeping are tied together in relatively inflexible programs administered by what some call "paternalistic" agencies still entrenched in the medical model of care for the developmentally disabled. . . [The national trend is to] help people with DD rent or buy their own apartments or homes where they receive individualized services that have proven cheaper for states than the expenses involved in a group home or institution. In such a "supported living" scenario, housing is separated from and no longer dependent on a service agency. Instead, agency personnel come to the individual at home and provide services necessary for care and safety. If the individual's needs change, the services are modified, and the person is able to remain at home.

The pilot federal Community Supported Living Arrangements (CSLA) program helps with personal assistance for shopping, meal preparation, housekeeping, and money management tailored to meet individual needs. (See subsequent section "Federal Payment Sources and DD Services" for more discussion of the CSLA program.) A supported living consultant is available to coordinate community services. "[B]ecause of the flexibility and personalized nature of the [CSLA] program, people with even the most severe disabilities -- once thought of as manageable only in an institution -- are now able to live in neighborhoods and communities."180

On the other hand, some DD advocates and families of DD individuals have objected to the wholesale move to a home- and community-based, supported living environment.181

• "People who want to move toward a model of community living often have an idealized view of community life" asserts Caroline Walsworth of Voice of the Retarded (VOR), an association of individuals and parent groups. "VOR believes that community living is just not for everyone." . . . [Kansas Senator Gus Bogina agrees:] "The philosophy that all clients can be or should be out of institutions is false. There are some people who cannot function in the community either because of profound mental retardation or because they have spent their entire lives in institutions and are, therefore, very vulnerable." . . . [Walsworth says] "there are degrees of mental retardation and multihandicapped individuals who need more protective settings [especially those with high medical needs]."

Those who caution against a total rejection of institutionalization warn that once a facility is closed, the state cannot easily re-open it. Often, structural reorganization has taken place and personnel have been transferred or laid off. Once patients go into the community, a state has less control over the continuation of community provider services, especially if a federally funded provider goes out of compliance.

That there is opposition to a wholesale transfer of the DD population from institutions to the community must be recognized. To the degree that such opposition exists, there may also be a diminution of common ground upon which different categorical groups can agree regarding a unified system of access. For example, some may feel that individuals who should remain in facilities may get left out in a system that emphasizes home- and community-based services inappropriate for them. Will their institutional needs be accommodated in such an integrated system? Of course, SEP processes and fully integrated long-term care systems can, and do, include institutionalization as a matter of policy. The point is that those involved in both policymaking and implementation must make conscious decisions to accommodate differences and differing needs among long-term care populations.

Federal Programs for the Developmentally Disabled: The disparate manner in which federal and state programs address the multiple needs of the DD population contributes to overall fragmentation of services. The previously mentioned Individuals with Disabilities Education Act (IDEA) contains Parts A through H. Part B is permanently authorized and provides funds to local education agencies to help pay the excess costs of educating students with disabilities. All other Parts are discretionary.182 Part H consists of the Program for Infants, Toddlers, and Families. This intervention program aims to help states develop and implement a statewide, comprehensive, coordinated, multidisciplinary interagency program of early intervention services for infants and toddlers with developmental disabilities or with conditions that place them at risk of delays.183 Federal Part H moneys are not meant to provide direct services although the end result contributes to improved care for young DD individuals. Obviously, services under Part H are not long-term in the sense of extending into the future indefinitely. However, they operate within a phase of a DD individual's lifetime over which the person requires various types of long-term care.

Part B of the IDEA (originally enacted as Title II of P.L. 99-457)184 provides for the Federal Pre-School Program. Part B requires states to ensure that all eligible children with disabilities, beginning at age three, receive a free and appropriate public education by the 1991-1992 school year. States must meet this requirement to receive federal funds for children counted in preschool under federal special education grant-in-aid formulas.185 This program is similarly not "long- term" in the normal sense. To the extent that it does not neatly overlap with customary "long-term" care dealing with ADLs available to multiple populations, it may pose problems for service integration.

Medicaid also provides for early intervention services that screen and treat eligible children. Medicaid's Early and Periodic Screening, Diagnosis and Treatment (EPSDT) service is provided under states' Medicaid programs and covers children from birth to age 21. States are required to provide treatment (such as speech therapy and hearing aids) to correct or ameliorate any physical or mental problems identified during the EPSDT screening and assessment process.186 The EPSDT program assists the DD population with its overall long-term needs. However, its services cannot be applied to other categorical populations. To the extent that they cannot, they must be taken into account in any effort to create an SEP or to integrate the long-term care system for multiple populations. The point is: every service or benefit that is not generally applicable across long-term care populations may obstruct system integration. How each service is dealt with in an SEP process or an integrated system requires across-the-board consensus.

Medicaid is the most important source of funding for the DD population:187

• The vast majority of federal assistance to states to pay for developmental disabilities services comes in the form of Medicaid. . . . State legislatures play a critical role in establishing state developmental disabilities policy, authorizing services, structuring service delivery systems, and deciding how much medicaid will pay for services. . . . Community residential services for adults typically claim the lion's share of each state's community developmental disabilities budget.

In 1993, people with disabilities accounted for 15.5 percent of Medicaid enrollment, but 39 percent of all Medicaid expenditures. Just as in the general population, the disabled population also has a minority that uses the most Medicaid primary care services. Many disabled recipients are more modest users of the health care system.188 One clue as to why disabled individuals may account for a disproportionately large amount of Medicaid expenditures may be that:189

• Primary care physicians have traditionally been fearful of treating patients with disabilities . . . . They have tended to respond to the disabilities and not to the immediate medical need. The result is that people with disabilities have a specialist referral rate that is 60% higher than for the general population. They also have longer hospital stays even though people with disabilities don't seem to have different rates of healing.

The federal Maternal and Child Health block grant enables states to develop or enhance systems to ensure that children with special medical needs have access to primary health care. In addition to intervention services, states have discretion to target some of these funds for primary prevention and prenatal care.190

The Crisis Nurseries and Respite Care program is an extension of the Temporary Child Care for Handicapped Children and Crisis Nursery Act of 1986 (P.L. 101-127). The program funds respite care services for children with disabilities and nurseries for children in crisis due to abuse or neglect.191

The National Early Childhood Technical Assistance System is funded by the federal Office of Special Education Programs. Its purpose is to advise states technically on policy planning and intervention models by analyzing the implementation of Part H of IDEA. Regional Resource Centers in each federal region have added early intervention specialists to help states develop and implement early intervention and preschool policy.192

DD Services: A DD individual may require age-appropriate supports and services that address the individual's long-term needs. Generally, DD services for children include:193

• [d]evelopmental, educational, therapeutic, technological, and social services. Early identification and treatment of a child's developmental delays promote the optimal development of the child and prevent the emergence of more severe and costly problems later on. . . . Early intervention services include family training, counseling, and home visits; respite care; speech pathology and audiology; occupational therapy; physical therapy, assistive technology; psychological, nutrition, and case management services, early identification, screening, and assessment services; and health services necessary to enable the infant or toddler to benefit from the other early intervention services.

Children diagnosed as developmentally disabled often receive services in infant development programs that include various therapies. Their families receive social work services and their caregivers receive special training to care for DD children. Case management ensures that DD children and their families receive, or at least gain access to, social, medical, legal, educational, and other services.194

"Services" for the developmentally disabled in Hawaii is defined as follows:195

• "Services" means appropriate assistance provided to a person with a developmental disability or mental retardation in the least restrictive, individually appropriate environment to provide for basic living requirements and continuing development of independence or interdependent living skills of the person. These services include, but are not restricted to: case management; residential, developmental, and vocational support; training; habilitation; active treatment; day treatment; day activity; respite care; domestic assistance; attendant care; rehabilitation; speech, physical, occupational and recreational therapy; recreational opportunities; counseling, including counseling to the person's family, guardian, or other appropriate representative; development of language and communications skills; interpretation; transportation; and equipment.

DD individuals may also need training in general skills such as learning to budget, shop for groceries, take a bus, and order in fast food restaurants. Because "[s]tates are moving away from rigid facility-based or program-driven services to more flexible, customer-driven community supports models, many DD individuals live in the community."196 However, they need various supports. Supported living can be described as follows:197

• [S]ervices and supports would be shaped around each person's particular needs and would complement the other assistance that could be obtained through other public programs or "natural supports" (e.g., friends, families, neighbors and other people in the community). This approach is commonly called supported living. . . . In supported living, people pay for their own living arrangements and daily living expenses, using employment income as well as public assistance benefits. . . personalized support strategies are worked out in concert with the person, family and friends, and professionals to identify the combination of services and supports that the person needs. . . once a strategy is worked out, people are linked up with community agencies or individuals who provide various kinds of support.

Under the supported living concept, services are tied to the person, not the residence. Services are tailored to fit the needs of the person. Supported living does not focus exclusively on facilitating functional disability but on enhancing a person's strengths and ties to the community.

Federal Payment Sources and DD Services: The first federal payment option is Supplemental Security Income, which is an income maintenance program that provides a base level of income support for the blind, disabled, and elderly. Parents' incomes are counted for children under age 18 living at home, thus only very poor families qualify.198

According to Bauer (1994), Medicaid provides medical services to low-income children meeting eligibility requirements:199

• States have the flexibility of choosing 34 different services when designing their Medicaid plans once they have incorporated nine mandated services. Physical therapy, speech therapy and private-duty nursing are all Medicaid-approved services that a state has the option to provide Medicaid-eligible children. These services must be available across the state to all eligible children, unless the state has received a waiver stipulating something different.

Two Medicaid waivers are generally used. First, the Home- and Community-Based Services (aka "2176 waiver") provides support services for Medicaid-eligibles who would otherwise live in more costly institutions. Most often, these services consist of case management, respite care, and homemaker and personal care services. Waivers are negotiated with the federal Health Care Financing Administration (HCFA) for three years and are renewed for up to five years.200 More and more states have chosen to provide this option.201

• As of 1990, 41 states offered services to over 50,000 persons with developmental disabilities through this option. Although the majority of these persons are adults, Medicaid-eligible children with disabilities also benefit from this option.

Second, the Model Waiver Option (aka "50/200 waiver") allows optional services such as home care to be provided that are otherwise not included in a state's Medicaid plan. Services are provided to a small targeted population such as children who are ventilator dependent and who would otherwise need institutional care.202 The waivers cover 50 to 200 persons in a specific target population. Home care services not normally allowed are reimbursed under this waiver. The 50/200 waiver also requires less information than the Home- and Community-Based Services waiver and is given preference in HCFA review.203

Furthermore, the pilot Community Supported Living Arrangements (CSLA) program was added to the Medicaid program in 1990.204

• CSLA services include personal assistance, training and habilitation, assistive technology, housing modifications, and other supports that help a person to take greater command of his or her life and take part in more community activities.

As of December, 1993, only California, Colorado, Florida, Illinois, Maryland, Michigan, Rhode Island, and Wisconsin have operated this pilot program. The CSLA program has less stringent criteria than the HCBS waiver but is federally capped.

In addition, Medicaid's "targeted case management services" makes Medicaid funds available for case management or service coordination for the DD population:205

• Service coordinators help individuals access services such as health care, specialized developmental disabilities services, and other generic programs. . . . They help people obtain benefits to which they are entitled (e.g., federal and state income assistance benefits to help them meet their daily living expenses), pull together service plans and identify provider agencies who can meet the person's needs, and conduct ongoing monitoring of the health and well-being of people in the community. Medicaid funding of these services is used to leverage state money in order to improve the availability of service coordination.

There is also the Medicaid personal care option. This option can be used flexibly and broadly to meet DD needs in individuals' own homes. In Michigan and Wisconsin, Medicaid personal care money complements HCBS waiver funding.206

Finally, the Tax Equity and Fiscal Responsibility Act of 1982 (TEFRA) disregards parents' incomes for children aged 18 and below who live at home. This is done ". . . by modifying the state's Medicaid plan in accordance with Section 134 of [TEFRA.] Although 17 states have elected this option, many apply it to a very narrow range of potential beneficiaries."207 Choosing the TEFRA option consists merely in checking off a box and showing that the state will save money by avoiding institutionalization. However, Only 18 states use this option.208

In any case, system integration is hampered by the need for multiple funding sources because no one source is adequate. For example, Medicaid (absent waivers) severely restrict reimbursements for community-based services. Medicaid's intermediate care facilities for the mentally retarded (ICF/MR) requirements prevent facilities that serve fewer than four people from qualifying for ICF/MR certification and reimbursement.209 Thus, to get flexible, tailored services to integrate the DD population into the community, there is a need to use other funding sources such as:210

1. Expanded use of Home- and Community-Based Services waivers;
2. Selected use of Medicaid state plan options;
3. Targeted assistance to providers (to change to new services); and
4. Flexible payment mechanisms to let consumers choose needed services while having the state pay for them.

Many DD services can also be used by other long-term care populations. For example, those funded by the the Medicaid Home and Community-Based (HCB) waiver programs, below, are purportedly 40 percent to 50 percent less costly, on average, than institutional care:211

• The Medicaid HCB waiver program allows states to redirect Medicaid money that would be spent on institutional services to support a wide array of community services and supports. These include personal care/assistance, skill building, supported living, home modifications, and specialized equipment or assistance technology services to help people live in the community. Such services are furnished in family homes, people's own home[s] or apartments[s], and specialized facilities. The services a person receives via an HCB waiver program are tied to his or her needs for particular kinds of support.

Family Support Services: DD individuals living at home or in the community require family support services. Definitions of "family support" differ but the term ". . . generally means providing services necessary to strengthen a family's ability to provide care at home for a family member with a developmental disability."212 Family DD support programs are fairly new. Early programs had four components: (1) respite care; (2) services such as case management and parent training; (3) financial assistance; and (4) a combination of financial assistance and other services.213 According to Wright and King (1991):214

• Services most commonly offered are case management, respite care, parent education, home adaptations, special equipment, and transportation. Other services may include information and referral, parent and family counseling, peer support groups, homemaker services, attendant care, chore services, in-home nursing services, future planning, and cash assistance.

The following is a chart illustrating family support services.215

                           Figure 3-4

               What Do We Mean by "Family Support"
                            Services

  Core Services RESPITE AND   IN-HOME ASSISTANCE    ENVIRONMENTAL
                CHILD CARE                      ADAPTATIONS
                Respite       Homemaker servicesAdaptive
Equipment
                Child Care    Attendant Care    Home Modification
                Sitter Service                  Home Health Care
                              Chores

                RECREATION    SUPPORTIVE        EXTRAORDINARY
                                                NEEDS
                Recreation    Family Counseling Transportation
                Camp          Family Support    Vehicle
                                Groups            Modification
                              Sibling Support   Special Diet
                                Groups          Special Clothing
                                                Utilities
                                                Health Insurance
                                                Home Repairs
                                                Rent Assistance
                                                Vehicle Repairs


  Traditional Developmental   Behavior Management  Medical/dental
  Services                    Speech Therapy    Skill Training
                              Occupational      Evaluation/
                                Therapy           assessment
                              Physical Therapy  Nursing
                              Individual
                                Counseling

In a 1991 study, 46 states were found to provide at least some services or other resources to families who care at home for a family member with a disability:216

• More than 30 different services have been identified that offer assistance to families. The most common are respite care, adaptive equipment, and family counseling. Other common services include medical, health, and nutrition services; special clothing; recreation; speech, occupational, and physical therapy; home modifications and repairs; flexible payment for disability-related expenses; and case management. Ten states have a cash subsidy program for families and 17 offer families a combination of financial assistance and support services.217

According to Wright and King, current reimbursement criteria for Medicaid services actually encourages institutional or other out-of-home placement for children with disabilities who need support services.218

• Many families who need help with support services or equipment are ineligible for Medicaid because their income level is too high, even though they many not be able to afford to purchase the needed services and equipment on their own. If the child is placed outside the home, the family's income is no longer taken into account and the child becomes eligible to receive Medicaid-reimbursed services. This policy creates severe hardship for many families who want their children with serious health problems to live at home.

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