 Table of Contents
| LRB Reports |
Chapter 4
OTHER STATES
"[Six states] have successfully integrated their long-term care programs and developed large, statewide community care programs. These states were able to develop statewide community long-term care programs without uncontrollable state expenditures or utilization increases. . . . [All used t]ight eligibility requirements . . . a case management system . . . to control service utilization . . . standardized assessment tools, standardized functional eligibility criteria, and a uniform access point to the system while allowing service packages to be determined at the local level within specified fiscal parameters. Such local flexibility encouraged creative solutions that built on unique local bases of resources, informal care networks, and service providers."219
Target Populations: Long-term care is a multifaceted subject. Copious literature is available. However, relatively little deals specifically with this study's three target populations as one unified generic population. Most of the literature, not surprisingly, focuses on the elderly. There are relatively more of them who need long-term care. In comparison, material on, for example, disabled children as a distinct group requiring a rationale and comprehensive set of long-term care supports is relatively sparse. As discussed in previous chapters, there are many reasons why the categorical groupings of disabled children, disabled non-elderly adults, and frail elderly have arisen. Suffice it to say that categorical groupings are relatively entrenched.
This is not to say, however, that some degree of generic integration of the long-term care system is not possible. Indeed, there are states that have revamped or extended existing policies to coordinate and unify long-term care services. However, no state has fully and successfully implemented a totally integrated long-term care system based on generic rather than categorical criteria. Again, system integration is a matter of degree. Some states have taken steps to improve system coordination. However, even in these efforts at coordination, the literature reveals that little has been done to actively incorporate groups other than the elderly.
Single Entry Point (SEP): A parallel situation in the literature exists with the concept of a single entry point. Although some material is available, an SEP process is more often than not the subject of efforts at coordinating services only to the elderly. This is not to say that states are not aware of the possibilities of generic system integration. For example, Maryland has proposed that long-term care resources be allocated based on functional impairment and not categorically based on diagnosis or age. In any case, the idea of a single entry point often appears only tangentially, the focus being on some form of system integration or coordination as applicable to the elderly. Nonetheless, an SEP process implies some degree of system integration (see chapters 2 and 3). To the extent that the broader topic of system integration holds lessons for a coordinated SEP process at a lower level, relevant material from others states is discussed. The remainder of this chapter presents material from Colorado, Indiana, North Dakota, and Texas. Also, material from Arkansas, Illinois, Maine, Maryland, Oregon, and Wisconsin (the six states studied by Justice, et al.) is included.
Fragmented System and Need for Coordination: In December, 1989, the Colorado Legislative Task Force on Long-Term Health Care issued the Report to the Colorado General Assembly: Recommendations for 1990. The objective of the Task Force was to "coordinate the state's fragmented long-term health care system into one that is better organized."220 It acknowledged that long-term care services had previously been fragmented and hard to access -- exacerbated by differing and confusing program eligibility requirements. Some programs were found to be working at cross purposes and residents accessed the system from different entry points.221 Residents were unaware of the range of available services. The application and assessment processes were burdensome and there were fewer resources in rural areas.222 It found that home- and community-based care is often more cost- effective than traditional long-term care and is preferred by Colorado's residents. The anticipated growth in demand for such care is expected to pressure the state to better coordinate an increase in these services in an efficient manner.223 As a result, the Task Force considered:224
Multiple Populations: The Task Force expressed a commonly- held view that although multiple categorical populations need long-term care, the elderly have the greatest impact on the system. According to the Task Force, long-term health care, although usually associated with the elderly and the disabled:225
Nonetheless, the Task Force studied issues relating to developmentally disabled persons, the disabled chronically mentally ill, the physically disabled, including the frail elderly, and emotionally or behaviorally disturbed persons.226
Recommendation for a Single Entry Point: Colorado is one of the few states that explicitly dealt with a single entry point. It argued that a single entry point and uniform assessment instrument "better organizes client entry, assessment, and service delivery for long-term health care. . ."227 Being assessed for all long-term care needs at one time would make it easier for clients to access the most appropriate services and would link clients to the least costly service required to meet their needs.228 The Task Force made nine recommendations, embodied in a number of proposed bills, the first of which relates to a single entry point:229
The Task Force found that public expenditures for long-term care were reduced by systems such as an SEP process that "[p]recisely explain eligibility for various aging and medical assistance programs. . ."230
Single Entry Point, Common Assessment Tool, and Access to a Continuum of Care: The Task Force recommended an SEP process and a common assessment tool in order to facilitate access to different levels of care in the continuum of long-term care:231
Providing a continuum of care allows individuals to remain in their homes and communities, maximizing their independence and quality of life. By accessing the system and receiving services through an SEP and based on a common assessment tool, individuals can:
(2) Receive more precisely only those services that they need and no more resulting in cost savings.
Case Management and a Single Entry Point: The Task Force compared case management for the developmentally disabled, elderly, blind and disabled, chronically mentally ill, and others. It attempted to identify commonalities among the various case management areas by examining the structure, definition, [Bfunctions, models, recruitment of case managers, and the consumer's point of view. It concluded that:232
The implications are clear. Establishing an SEP that incorporates different categorical populations involves resolving many differences. Even in the limited area of case management in an SEP process, Colorado found that no model existed to address these differences. It is only logical to assume that similar differences exist for the screening and assessment components -- and that no model exists either in those two areas, nor for the SEP process itself.
Computer Expert Software System: To facilitate screening and assessment in an SEP process, the Task Force recommended the development and implementation of a long-term care uniform client assessment instrument based on a computer expert software system. This tool is to be used to determine appropriate services and levels of care which meet the needs of clients. It was found that:233
Long-Term Care Populations and System Integration: According to a 1990 Indiana study, the developmentally disabled, the non-elderly physically disabled, and the chronically mentally ill in that state are served by separate long-term care systems and funding sources (Department of Health, Department of Mental Health, and Department of Public Welfare-Medicaid).234 As a result, especially with regard to an SEP process,235
Indiana's Department of Mental Health (DMH) serves a significant number of elderly with two-thirds of DMH funds for the elderly going to elderly patients in state mental institutions in 1989. The DMH is involved in the long-term care system because of the 1987 federal requirement to assess all applicants and existing residents of nursing homes to determine whether:236
(1) They have a mental illness or developmental disability;
(2) They need active treatment; and
(3) Nursing home placement is appropriate.
However, the DMH gets involved only after applicants get through the preadmission screening process of the Department of Human Services (DHS) and the Department of Public Welfare (DPW). A so- called "Level Two Assessment" which is more comprehensive is needed if a client may be mentally ill or developmentally disabled. (Level One Assessment is for applicants for nursing home placements).237 The implication is that the addition of another impairment which may not necessarily be shared with other populations may require special actions to address unique needs. This may add to the complexity of successfully implementing an SEP process. (See below for more multi-agency involvement.) DMH then makes the final assessment, provides case management, offers placement choices, and develops and coordinates residential placement.238
CHOICE -- Indiana's Community Care Program: CHOICE is Indiana's non-entitlement239 Community and Home Option to Institutional Care for the Elderly and Disabled Program which began in three counties in 1988. CHOICE pays for a variety of in-home services for eligible persons who are at risk of institutionalization. The goal of the program is to provide an alternative to premature placement of disabled persons in nursing homes or other long-term care facilities. Individuals are assessed for functional deficits that place them at risk of institutionalization. If eligible, care plans are developed and appropriate services are brokered by case managers. CHOICE pays for:240
Disabled Non-Elderly: The CHOICE program is not limited only to the elderly. CHOICE funds are available for persons with disabilities who are under age 60. This younger segment comprised 18 percent of CHOICE clients in FY 1990, and utilized 21 percent of CHOICE service dollars. In Allen County, 31 percent of CHOICE clients are under age 60.241 The statute governing the CHOICE Program (IC 4-28-6.1) grants eligibility to a person who:242
However, CHOICE targets those at imminent risk of institutionalization. To be eligible, clients must have at least one substantial medical condition or at least three activities of daily living (ADL) limitations.243 Since most people in this group are 85 years of age and older, there may be some practical limitations on the funding of care for the disabled non-elderly. This notwithstanding, CHOICE guidelines and procedures for AAAs require that at least 20 percent of CHOICE case service dollars be used for persons under age 60 who meet CHOICE eligibility requirements. Non-elderly individuals with significant but stable disabling conditions may need CHOICE-funded service over an extended period. Their lengths of stay on the program are likely to exceed those of many elderly clients whose conditions may deteriorate more rapidly.244
Medicaid Waiver Program: Indiana also has a "2176 Medicaid waiver" to provide services normally not reimbursed by Medicaid. Services are targeted to Medicaid-eligibles aged 65 or older or disabled and who would otherwise require institutionalization paid for by Medicaid. Service costs must be less than 90 percent of Medicaid nursing home costs. Waiver services include items (1), (2), (4), (5), (7), and (8), above, in addition to home modifications and adaptive aids and devices. Waiver participants are screened with the same screening tool by the same personnel who administer the CHOICE program. Furthermore, the same assessment and care planning tools that are used for the CHOICE program are used for the waiver program.245 However, because two departments are involved, the DHS and the DPW:246
The extent of the coordination needed can be seen from a description of the cross-responsibilities among Indiana's state agencies:247
Figure 4-1
Board of Health Public Welfare Human Services
Planning and -Certificate of -Facility -Community care Policy Need (nursing reimbursement policies and Development bed supply) policies planning -Quality of care policy -Health planning
Quality of -Nursing home -Nursing Home -Quality of Care/Consumer certification Medicaid community care Protection and licensure reimbursement -Ombudsman Program -Home health agency -Adult Protective licensure Services
Advisory -Health Facilities -Medicaid Advisory -Commission on Bodies Council Committee Aging -Indiana Veterans' -State Advisory Home Advisory Commission on Committee Aging -Alzheimer's Task Force -CHOICE Board
Service -Indiana Veterans' -Medicaid -CHOICE Funding Home appropria- -Medicaid Com- -Older American's tions munity and In- Act Funds -Preventive Home Waiver -Social Services Health Block Program Block Grant Grant Funds -Room and board -Older Hoosier's assistance funds -Assistance to -Alzheimer's funds residents of county homes
Local Service -Local Health Depts.-Nursing homes -Area Agencies Delivery -Indiana Veteran's -Residential on Aging Home facilities -Community Care -County homes Agencies -County welfare offices (Medicaid waiver)
Assessment/ -Indiana Veteran's -Department of- Area Agencies Eligibility Home Public Welfare on Aging -Pre-Admission Screening
Single Entry Point: Regardless of system fragmentation, however, an SEP can be implemented in a cabinet system (see chapter 2 for discussion of the "cabinet" and other models of administrative structure). Indiana's system is not integrated although it was recommended that it move in that direction. That state has used an objective preadmission screening and case management tool248 that has increased credibility and awareness of community options. With reference to a single entry point itself, the Indiana Legislative Services Agency recommended that:249
Indiana's approach reflects multiple aspects of long-term care access. Naturally, improved ease of access is a goal. In addition, it aims at some degree of integration of service delivery and cost savings via a managed care philosophy.
In a 1991 follow-up study, Indiana reported that:250
Consolidation of Services and Funding Sources Into Local Agency: Before service integration in Indiana, state and federal funds were available only through the service provider who got funds directly from the state or through AAAs and who had their own intake and assessment processes. AAAs' case management functioned more as an information and referral service than as a gatekeeper which can authorize services. Local service providers determined client eligibility and provided service within funding constraints. The single entry point resulted in two changes:251
Indiana delegates significant authority to AAAs to encourage flexibility in addressing local circumstances. At the same time, the state maintains fiscal and program accountability by linking delegation of authority with specific budget allocations, program eligibility criteria, service cost limitations, and audit requirements. The AAAs, facilitating the single entry point process, are responsible for:252
With this delegation of authority to local AAAs, the DHS's role has become one of planning, monitoring, and providing technical assistance. A model for this new relationship between the state and the AAAs is the CHOICE program. AAAs are local nonprofits which were already involved in providing and funding in-home services. They already had an established case management system and were responsible for screening persons seeking admission to nursing homes. In addition, since AAAs are not "governmental agencies," they do not carry a "welfare" stigma, an anathema to senior citizens. They also have an ability to react quickly and creatively to local needs and circumstances.253
Development of an effective system for monitoring fiscal and program accountability of AAAs will be essential. However, this must be balanced against the benefits of encouraging local flexibility and creativity. In addition, the dangers of state- level micromanaging and the cost of imposing unnecessary paperwork and reporting requirements must be resisted. Based on an annual plan, AAAs are given CHOICE budgets, responsibility for developing and reimbursing a network of providers, and flexibility in designing individualized service packages for clients. However, this autonomy is provided within clearly specified parameters of average costs per client, caps on expenditures per client, and clearly delineated eligibility criteria. As AAAs assume increasing fiscal and operational responsibilities, the state must assume greater responsibility for providing technical assistance, consultation, and training.254
As part of the SEP process, consolidating scarce funding resources enables the long-term care system to target those most in need. AAAs serve this function in three ways:255
Preadmission Screening: As mentioned above, Indiana uses a preadmission screening (PAS) instrument that, along with the case management system, is at the core of Indiana's single entry point:256
The following summarizes the steps in a preadmission assessment in Indiana's long-term care system:257
When authorized by the AAA, PAS assessments can be completed after admission to the nursing home under the following circumstances:259
Denial of Admission to Nursing Homes: The circumstances under which a person can be denied entry to a nursing home consist of the following:260
The Preadmission Screening Process -- Benefits: It was argued that the PAS process results in cost savings: "Cost savings occur even when the Medicaid Waiver is used, since the cost of Waiver services must be less than the cost to Medicaid for nursing home care."261 In addition, in 1989, 219 persons, some of whom were Medicaid-eligible, were diverted from nursing homes to alternative in-home services:262
Furthermore, aside from cost savings, the Indiana study summarized non-quantifiable benefits of a PAS process (including case management) -- in other words, the single entry point system:263
The Preadmission Screening Process -- Disadvantages and Streamlining: On the other hand, it is acknowledged that there are drawbacks to the PAS system. Chief among these are that:264
As a result, it was recommended that the following steps be taken to streamline the PAS process:265
Case Management -- Functional Assessment and Care Planning: Once eligibility is determined, the case manager uses a functional assessment tool developed by DHS to obtain information about the client's service needs and resources:267
Based on the assessment, a care plan is developed for each client. Care plans can be very simple -- for example, for clients needing only one service funded through OAA Title III (e.g. home-delivered meals). Or they could be very extensive for persons who need services funded through the Medicaid Waiver. The care plan identifies all of a client's service needs. The case manager and the client, or the client's family, decide how these service needs can be met. Once a client's available family support is identified, services and assistance to be purchased with state and federal funding can be specified.268 Funding of in-home and community-based services is not meant to replace existing informal family supports from family, friends, and neighbors but to augment and support them. The care plan includes identification of funding sources including OAA Title III and SSBG funds which are used before Medicaid Waiver and CHOICE funds. The final part of the care plan:269
Service Delivery -- Brokering of Services: Once the care plan is developed, the case manager authorizes the purchase of the specified services and arranges with a local service provider for their delivery. Some clients are involved in selecting the provider and arranging the delivery of services. Younger clients and parents of minors eligible for CHOICE funding often are more actively involved. For Title III, SSBG, and the CHOICE program, AAAs are responsible for selecting service providers and negotiating unit rates paid for each service. All providers must meet criteria and standards established by DHS for each service component. These criteria address such factors as staff training, expertise, and supervision. Clients can also use family members (other than spouses), friends, neighbors, or other individuals to provide CHOICE and Medicaid Waiver-funded services, such as homemaker, personal care, or respite care. To be compensated by CHOICE or the Medicaid Waiver, these persons must complete a training program developed by DPW and DHS. (Under the Medicaid Waiver, clients may choose Medicaid-certified providers. Rates established by the DPW during the certification process must be at or below caps previously set for each service.)270
Monitoring and Reassessment: Fiscal accountability and quality assurance tasks also fall to the case manager who accomplishes this through the monitoring of authorized service delivery. The DHS quality assurance program for in-home services relies on standards for agencies providing the service and on monitoring of direct care staff by these agencies. Monitoring of care provided by non-agency staff is more difficult, especially for clients without regular family contact or involvement.271
Clients must be reassessed on a regular basis to assure their continuing eligibility for funding and to make necessary adjustments to their care plans:272
Long-Term Care Reform: In 1987, North Dakota issued a report entitled Long-Term Care: Issues and Recommendations. The study was based on the conviction that a balance of institutional and non-institutional care and support services is the best way of meeting the needs of North Dakota's older adults. The need for an interagency task force to conduct the study is an indication of the major effort that will be necessary to implement long-term care reform that includes an SEP. Members of the North Dakota Interagency Task Force on Long Term Care represent that state's Department of Human Services, Department of Health, and the Governor's Office. The study based its evaluation of broad issues concerning long-term care in North Dakota and the nation on a needs assessment study of long-term care needs in the Drayton service area. (Note: Although the Task Force stated that long-term care entails a wide array of social and health services that can be used "by young and old alike," its work dealt only with the needs of "North Dakota's older adults." This likely reflects the circumstances in most states: although efforts are made to include the non-elderly, the dominant numbers of the elderly command the most attention.)273
Findings of Policy: The Task Force felt that the Drayton study ". . . demonstrated a need to examine the structural, functional, financial and social concerns that undermine [sic] a comprehensive and fluid long term care delivery system in North Dakota."274 The Task Force wisely recognized that "the long- term care system is extremely complex and cumbersome" and that they "did not have all the answers to all of the long term care issues or problems."275 Nonetheless, it did make findings and recommendations, some of which related to a single entry point. In general, the Task Force found that North Dakota needs to express as state policy the following findings relevant to the present study:276
The Task Force contends that the public has limited knowledge of what services are available and how each service fits into the broader continuum of care. As a result, the public does not know how to obtain appropriate services from many different long-term care providers offering different types of services.
Recommendations: The Task Force made several recommendations aimed at streamlining, simplifying, and consolidating North Dakota's long-term care system. To the extent that a single entry point facilitates each of these goals, the following were recommended:277
The main impetus for the single entry point recommendation is the ignorance of North Dakota residents regarding the range of services available. Contributing to the difficulty of access to long-term care services is the fragmentation of the system. As discussed in previous chapters, much of this fragmentation developed historically due to categorical funding restrictions. One method to reduce this fragmentation, and also facilitate access, is to consolidate federal and state funding resources so that service delivery can be simplified. A great amount of interagency coordination, however, is necessary. Similar to Figure 4-1 (depicting system fragmentation in Indiana), Figure 4-2,278 below, is a further example of such fragmentation depicting federally-funded services for elders that are provided by North Dakota providers. Note that this chart does not include long-term care services for other populations nor does it include state-funded programs.
SEP -- Preadmission Screening and Case Management: The SEP recommended by the Task Force is meant to coordinate services among providers and to oversee the pooling and disbursement of disparate funding streams. These goals are to be implemented through statutorily mandated preadmission screening and assessment and a case management program. The assessment team, consisting of at least a registered nurse and licensed social worker would focus on functional limitations. The case manager would match services to client needs and oversee service delivery.279 Fragmentation and lack of uniformity of service delivery at the county level is evidenced by the availability of different community-care services in different counties. For example, almost every county offers homemaker and home health aide services, but only half offer chore services and fewer still offer adult day care.280 Similar to other SEP schemes, the preadmission screening teams are recommended to be located in case management agencies, usually under county social service boards. Alternatively, they could be publicly or privately contracted for.
Need For Public Awareness: Another common function of systems with an SEP process -- to be performed by case management agencies -- is the education of the public to make them aware of long-term care service options. The public's ignorance reflects the historical emphasis on institutional care as opposed to in- home and community-based supports. Despite official support for non-institutional services, access to these preferred services may be limited if the target populations and their families are not aware of them. An SEP would contribute to heightened awareness of nursing homes as the "alternative" and community supports as the service of choice:281
Program Audit of Long-Term Care Services: In 1992, the Office of the State Auditor of Texas issued its Program Audit of Long-Term Care Services to the Aged and Disabled. Among other things, the Texas Auditor reviewed the extent, including gaps and duplications, of community programs and services available that offer an alternative to long-term institutional care for the aged and disabled. However, the Texas Auditor specifically excluded a review of programs that target persons with mental retardation or developmental disabilities.282 The Texas Department of Human Services (TDHS) is responsible for the long-term care system. Current services offered range from congregate and in-home meals to more intensive services such as personal care and those that provide a limited amount of nursing care.283 The Texas Auditor states that community care programs generally offer services to more persons at a lower cost in comparison to nursing facility care. However, as demand for services increases in Texas, that state must anticipate those needs, including nursing bed capacity. Consequently, planning is essential. Legislative initiatives have also been taken to ensure the delivery of health and human services in a coordinated and integrated manner.284
Fragmentation of Services: The Texas Auditor illustrates the degree of long-term care service fragmentation by summarizing as follows:285
This fragmentation is fairly typical of many states seeking to reform their long-term care systems through coordination or integration of services, funding, and providers. Paralleling similar trends in other states, Texas has moved away from institutionalization to home- and community-based care.286 The Texas Auditor acknowledges that the TDHS has made large strides in providing such community-based services.
Barriers to Effective Service Delivery: However, several barriers to effective service delivery were identified. One of these was the lack of a uniform method of evaluating the long- term functional needs of elderly and disabled Medicaid clients. Another is that the community care and institutional care programs are treated as separate systems instead of programs on a single continuum of long-term care.287 Both programs are operated by the TDHS. Although both programs measure functional disabilities of clients, the Texas Auditor found that they interpret the results differently:288
Recommendation for an Integrated Service Continuum: According to the Texas Auditor, a more integrated system would help remove some of these barriers. The recommended new system administered by the newly created Health and Human Services Commission would determine client eligibility and increase services. In addition, it would provide needed resources by increasing availability and diversity of long-term care programs in settings that focus on community-based services with options ranging from their own home to total-care facilities. The new system would stress coordination of services between state agencies so that existing community resources can be used for those in nursing homes who would otherwise opt for community living. As a result, the Texas Auditor recommended that:289
The Texas Auditor recommended that the TDHS take the lead to develop or utilize a single functional assessment for recipients of long-term care services and by providing guidance to the regions for needs assessment. 290 Implementing this recommendation would further the twin goals of expanding community care services and delaying institutionalization. A uniform functional assessment will also help save money. If Medicaid nursing home patients are functionally assessed or pre- screened before admission, costly inappropriate admissions can be detected and routed to community care options. Clients would also become more aware of all the options in the long-term care system and thus have a better chance of receiving the most appropriate level of care.
However, the Texas Auditor warns that without the necessary uniform data, it would be difficult to plan and budget for long- term care needs, whether community-based or institutional. The implication is that interagency cooperation is needed to obtain that data, assuming that a more integrated system is approved and embarked upon. Thus, the need for a uniform method of screening and assessment. However, no specific mention is made of a single entry point. Furthermore, functional assessments are already being used (their use just needs to be coordinated). Even so, this points to the, by now, familiar troika of coordinated preadmission screening, assessment, and case management that is embodied in an SEP process.
Ironically, the preference for community care gives rise to a pragmatic warning. As an alternative to nursing facility care, community care programs generally offer services to more persons at a lower cost. However, unlike nursing facilities, some community care programs are not eligible for federal matching funds. So while community care programs are perceived as being preferable to institutionalized care in a nursing facility, funding may not be available to meet the demand for services in this area.291 (Note: This is a familiar caution raised by several states including Hawaii. The "hype" of home- and community-based care in favor of nursing home care now relegated to "alternative" status must not obscure the need for necessary funding. Policy for the sake of policymaking not backed by hard dollars needlessly raises false hopes for those persuaded of a policy's merits.)
It was further recommended that a coordinated six-year strategic plan for health and human services be developed. The plan is to include the creation of a continuum of care and the integration of health and human services to provide efficient and timely service delivery.292
Medical Services Program for Disabled Children: The Bureau of Crippled Children's Services of the Texas Department of Health administers the Crippled Children's Services (CSS) Program serving chronically ill and disabled children. The CSS is a medical services program designed to identify and medically assist children who might otherwise be unable to benefit from present or future educational or employment opportunities. To be eligible, children must have severe medical problems as specified by law. They must also be expected to improve medically and functionally.293 Services provided by CSS program-approved physicians, dentists, hospitals, and ambulatory surgical centers include:294
Access and System-Related Recommendations: In 1987, the Texas Senate Committee on Health and Human Services conducted a study concerning these children's needs and made several recommendations. Of the six major recommendations made by the Committee, two have a bearing on the present study's focus on system access and system coordination:295
The Committee reported that regional case management centers are effective in providing early identification, intervention, and treatment of early childhood illnesses. The Committee argues that the term "case management" in itself implies the provision of comprehensive, cost-effective, and coordinated treatment and services.296 To the extent that cases are otherwise not "managed" this is true enough. Although services are still medically related, case management for disabled children in Texas also includes the second component of service coordination. The pediatrician who formulates the treatment plan is usually the medical manager. The service coordinator is concerned with coordinating "a broad range of service needs with the family and associated providers."297 However, it is unclear and somewhat doubtful whether these include the normal set of in-home and community-based long-term care supports. One example of case management assistance given is that of helping disabled children in remote areas to find the appropriate physicians for diagnosis, evaluation, and medical rehabilitation.298
Benefits of Regionalized Case Management: In any case, the Committee argues that regionalized case management results in less fragmented service delivery -- one of the merits of an SEP process. The Committee also contends that regionalized case management decreases hospital days of care and reduces the need for emergency medical services. Parents lose fewer days of work because regional case managers are able to find providers closer to home. In turn, this reduces the overall demand for CSS services.299 Of course, case management is one of an SEP's three usual components, the other two being uniform preadmission screening and assessment. The "regionalized" aspect of case management referred to implies some degree of integration and uniformity within a specific geographic area perhaps similar to uniform local entry points.
Interagency Coordination: The Committee also recommended more cooperation and coordination among agencies serving disabled children in order to improve service linkage and to optimize the use of public funds. The primary agencies include the Department of Health, the Department of Human Services, the Texas Education Agency, the Texas Rehabilitation Commission, and the Texas Youth Commission. Each of these agencies serves disabled children to differing degrees and for different purposes, resulting in service coverage that is fragmented and duplicative. Families need centralized, comprehensive treatment plans. Interagency coordination (assisted by case management) would make it easier for families to use various resources as well as provide more efficient and medically appropriate treatment.300
Consequently, the Committee recommended that the Department of Health be the lead agency in an interagency effort to, among other things:301
center> The Six Study States
Study of Long-Term Care Reform in Six States: In 1988, the National Governors' Association published a study authored by Diane Justice,302 et al., of long-term care reform in Arkansas, Illinois, Maine, Maryland, Oregon, and Wisconsin.303 Although long-term care was examined only in the context of the elderly population, the study's findings are instructive. To the extent that preadmission screening, assessment, and case management are the subject of reform, they are relevant to a discussion of an SEP process.
All six study states have implemented statewide community care systems that have integrated multiple resources and consolidated policy and management control of services at the state and local levels. All states use a combination of resources to support their long-term community care systems even though it would be much easier to use only one funding stream and thereby avoid the multitude of rules and restrictions that accompany each program. Due to these convoluted restrictions, particularly those associated with Medicaid, no single source is flexible or large enough to support a comprehensive long-term care system.304 Instead, states use a patchwork of multiple programs financed by multiple funding streams. Most of the study states have designated a single local agency in each part of the state to serve as the client access point for receipt of all publicly financed community care program services. Centralizing entry helps make the system less fragmented from the client's perspective while helping states gain better control of program costs.
Preadmission Screening, Assessment, and Case Management: According to Justice, et al.:305
Most of the six states provide services only to those elderly who have functional impairments, as determined by client assessments, equivalent to those required for nursing home admission. However, the scope of preadmission screening among the six states varies widely. One difference is whether only Medicaid-eligibles comprise the required target population or whether a broader population should be included. Another is whether decisions resulting from the screening process are binding or advisory. All states operate case management systems. Three (Arkansas, Maine, and Oregon) have selected Area Agencies on Aging as their case management agencies. Wisconsin and Maryland have designated their county social services departments. Illinois used local agencies chosen on a competitive basis. Case management and assessment agencies are the only client access point for receipt of services through the major community care programs in the study states. By design, the six states allow flexibility in providing different types of publicly funded services.306
Advantages of an SEP Process: All six states have expanded community-based care services without generating runaway costs in total long-term care spending. Total costs have risen over a five-year period. However, increases are modest, averaging 6.2 percent annually per person age 75 and older.307 Several factors contributed to containing overall costs:308
Of course, an SEP process embodying preadmission screening, assessment, and case management is a natural vehicle for implementing tight uniform eligibility criteria. It is also conducive to managing the authorization of appropriate services. Consistency and accountability can be maintained statewide without sacrificing flexibility at the local level in meeting unique individual needs. This was achieved through the use of standardized assessment tools, standardized functional eligibility criteria, and a uniform point of access to the system. At the same time, service packages can be determined at the local level within specified fiscal parameters.
Incremental Approach: All six states developed their systems incrementally. Three (Maryland, Wisconsin, and Oregon) phased in statewide implementation of long-term care initiatives by geographic area. All added various program components over a period of several years. For example, preadmission screening programs often were added after the supply of community care services was expanded, enabling screening program staff to offer persons seeking nursing home placement some viable community service options.309 Because the various components of community care are inter-related, undertaking a comprehensive planning process before launching major initiatives is imperative. A broad planning effort also paves the way for multi-agency consensus and coordination. All six states faced difficult decisions in choosing the best local agencies to perform assessment, case management, and direct service delivery. Separate systems providing for social services, aging programs, and health care delivery need to be linked. Such decisions are facilitated by prior broad-based planning efforts involving all players in the long-term care field.
Organization of Community Care Programs: The Arkansas Department of Human Services (ADHS) has responsibility for community-based long-term care services. The Division of Medical Services operates the Medicaid personal care program. The Division of Aging and Adult Services operates the supplemental personal care and alternative care programs as well as those under the Older Americans Act. For the most part, Area Agencies on Aging (AAAs) provide the actual personal care services. Arkansas uses its Medicaid option to cover personal care services and thus has not needed a Home- and Community-Based Service waiver.
Services: Personal care under the Medicaid option is the core of Arkansas' community care program. The alternative care program provides state-funded day care, chore and respite services, and informal caregiver training and support groups. Both the Social Services Block Grant and the Older Americans Act fund some services.
Assessments: The state contracts locally based client assessment teams to conduct functional assessments of all clients seeking Medicaid personal care services, authorize service provision, and refer clients to providers. In part of the state, these teams also conduct preadmission screening for Medicaid clients seeking nursing home care. In the remainder of the state, determination of the need for Medicaid funded nursing home placement is done at the state level and local offices of the ADHS determine financial eligibility.
Accessibility and Coordination: In 1982, legislation mandated the various divisions and agencies involved in long-term care to establish assessment agencies on a demonstration basis. The project's purpose was to test procedures for conducting client assessments and making appropriate provider referrals. Two pilot client assessment teams (in two AAAs) were created to conduct individual functional assessments in one quarter of the state. They also authorized Medicaid long-term care services, including personal care and home health and nursing home care. A local health department and a community action agency provided personal care services. Subsequently, statewide coverage for eligibility determination was allowed the client assessment teams. This mix of agencies and authority required a certain degree of coordination. In addition, state officials cited the gradual, incremental approach as a major factor in the state's success.
Organization of Community Care Programs: Administration is centralized. The major components of Illinois' community long- term care system are under the umbrella of the state's large entitlement Community Care Program (CCP). The CCP operates under the state's Department on Aging (DOA). The Department of Rehabilitation is responsible for a similar program for the physically disabled. Both departments work with the Department of Public Aid in developing program rules for Medicaid. Area Agencies on Aging provide contracted administrative support to the CCP such as resolution of billing problems. Direct services are provided through a well-established system of private nonprofit service providers. While several state agencies may be direct providers of service through local offices of the state government, there is no significant human services role for county governments.
Assessment, Case Management, and Service Delivery: All assessment and case management functions are performed by community care units (CCUs) under contract with the DOA. However, they may not provide direct CCP services. About one- third of the CCUs are home health agencies, another third are senior service agencies, and the remaining third are a mix of other agency types. CCUs perform the usual functional assessments to determine eligibility. They also conduct preadmission screening for nursing home care. As a result of the CCP's status change to that of an entitlement program resulting from a class action suit filed in 1982, changes were made to service provision. Since entitlement status acts as an implicit incentive to expand services, entities that performed assessment and case management were no longer allowed to provide direct services. To prevent possible conflicts of interest, CCUs were created to perform assessments and case management, including authorization of services. Other participating agencies which did not opt to become CCUs would then provide direct services.312
Organization of Community Care Programs: Maine's Department of Human Services (MDHS) supervises long-term care programs. The Bureau of Maine's Elderly in the MDHS administers the Home Based Care (HBC) program, and cooperatively with the Bureau of Medical Services, shares supervision of the Medicaid waiver component. The Congregate Housing Program is administered by the former Bureau. At the local level, AAAs administer the HBC and the Congregate Housing programs.
Services: The core of Maine's community long-term care services is the HBC program. The HBC provides a broad range of services to the elderly assessed as meeting the medical and functional criteria for nursing or boarding home care. Because few services are specifically defined, great service flexibility is allowed. In practice, personal care assistance is the most common one. In eight percent of state-funded cases excluding those under the Medicaid waiver, family members can be paid providers -- subject to state approval. The Congregate Housing Program is a small state-funded program which provides meals, housekeeping, and personal care services for low and moderate income elderly living in subsidized housing. The Older Americans Act funds case management for HBC clients as well as for the housing Congregate Housing Program. In addition, homemaker services are provided with limited Social Services Block Grant funds.
Assessments and Case Management: AAA staff perform assessments, develop care plans, and serve as case managers. The MDHS has developed a standardized functional assessment tool. The same functional assessment tool used for determining eligibility for the Homes Based Care Program and for preadmission screening is used to determine the need for congregate housing services.314 Hospital discharge workers also use the tool in making referrals to either the HBC program or a nursing home. In addition, AAAs use the tool in preadmission assessments of Medicaid-eligible clients seeking nursing home admission. Financial eligibility for Medicaid is determined by local offices of the MDHS.
Incremental Approach: As with the other six states, Maine's long-term care system developed gradually. The Congregate Housing Program began in 1982. In 1983, the Bureau of Maine's Elderly began a series of demonstrations involving nursing homes in the provision of community care services including adult day care, respite care and some in-home services. In 1984, Maine received approval of a 2176 Medicaid waiver so that federal funds could match state funds previously devoted to the HBC program. This was followed by the Alternative Long Term Care Program which combines the optional Medicaid state plan services of private duty nursing, personal care, and traditional home health services. Clients receiving these services must be nursing home- eligible and service costs must not exceed nursing home costs.
Organization of Community Care Programs: Responsibility for long-term care programs for the elderly is divided among three state agencies: the Department of Health and Mental Hygiene (DHMH), the Department of Human Resources (DHR), and the Office on Aging (OA). The directors of these three agencies constitute the Interagency Committee on Aging Services whose statutory task is improve state-level coordination. The DHMH administers Medicaid personal care services and Medicaid reimbursement for adult day care. The DHMH also administers geriatric evaluation services consisting of both preadmission screening and community care evaluations. The DHMH also manages Medicaid nursing home payments. At the local level, Medicaid personal care services are provided by independent contractors. The geriatric evaluation services is part of the county health department.
The DHR is responsible for social services and income maintenance programs, managing In Home Aide Services and case management services and domiciliary care for the elderly. The OA administers the Older Americans Act through local AAAs, which are part of county government. The OA also further administers a sheltered housing program which provides personal are and chore services to frail elderly residents of subsidized housing. In addition, the Gateway II program is administered by the OA as lead agency in collaboration with the DHMH and the DHR. Gateway II provides case management and funds to counties for services to the elderly assessed at risk of nursing home placement.
Equal Access Through Functional Eligibility: In December, 1991, the Governor's Commission on Health Care Policy and Financing issued recommendations on long-term care based on a three-year study. The report was jointly issued with the Committee on Long-Term Care. The Commission investigated the long-term care needs of not only the frail elderly but also those of "persons with serious mental illness, developmental disabilities, AIDS, other chronic conditions, as well as trauma victims and those in need of rehabilitation."316 As a result, the report recommended that:317
[t]he 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 those services are targeted to a particular age or disability group. As a consequence of the way long-term care services have evolved, the current long- term care system does not meet this test of fairness. Therefore, the Committee recommends that the long-term care service continuum be organized generically, rather than categorically by age or diagnosis, and that, to ensure equal access to services, eligibility be determined on the basis of functional impairment.
Coordinated Care: For more efficient use of resources, the Commission recommended that long-term care be organized into a system of inter-connected care. This calls for extensive coordination among the three agencies that provide long-term care. According to one researcher, "Problems in coordination are a result of three equally powerful agencies, each created for purposes other than long-term care delivery, interested in maintaining or increasing their current levels of service."318 In practical terms, the Commission recommended the establishment of:319
a State-level coordinating body which is independent from the agencies involved in the provision of long-term care services, but is represented by the secretaries or deputy secretaries of those agencies, so that critical groundwork for integrating policy issues affecting all long-term care populations can be addressed.
The chairperson of this state-level coordinating entity should be appointed by the Governor. This entity is to establish long-term care priorities (both community-based and institutional) and rationalize the use of scarce resources by allocating them between community and institutional services. It should also include multiple populations by prohibiting discrimination by age or disability but recognize the importance of these dimensions in the provision of services. Finally, it should recognize strengths of local jurisdictions to provide coordinated care. Membership in the coordinating body should include all agencies, consumers, and providers to address across- the-board issues. This entity should also be able to budget across agencies for special projects, allocate resources, set standards, and monitor and arbitrate among agencies. However, it should not replace existing departments but only coordinate care across agencies.320
The Commission also recommended that the system be tested with a pilot project providing one or more generic community- based services on a functional disability basis. It felt this was prudent before any major reorganization takes place, especially because Maryland has had minimal experience in combining funding streams:321
Obstacles to Providing Full-Range Generic Services for Multiple Populations: Under a system that provides care based on functional or generic impairment and not based on age or diagnosis, services and how they are delivered must be defined. For example, the chronically ill and disabled need an array of medical, social, and support services that are not exclusive to them but are shared with other long-term care populations such as the frail elderly. However, there is an inherent tendency for a population, or its advocates, to identify a particular service as being owned or controlled by that population. This obstacle must be overcome by replacing this tendency with an obligation to coordinate with agencies and populations to provide the service.
Contention between various models of care for dominance also poses a problem. For example, medical care is needed in both the acute and maintenance phases of chronic illnesses or disabilities. However, a medical model as a priority in the continuum may lead to excessive and unnecessary emphasis on health care. On the other hand, a predominantly social, community care model could possibly lead to insufficient medical care.322
How long-term care is financed also affects which type of care model is encouraged.323 For example, most traditional long-term care services are not medically-based and thus not paid by third party payers. Long-term care providers, then, may be forced to "medicalize" their services in order to be reimbursed. This may adversely affect the appropriate use of the social support model of long-term care.
The issue of whether the scope of long-term care services should be limited to those actually receiving the care or be extended to informal caregivers324 must also be resolved. For example, should training, education, respite care, stress counseling, etc. be included for caregivers? Advocates of different populations need to come to agreement on this issue before any system-wide integration or coordination can be implemented, including a uniform SEP.
How broadly should the needs of long-term care populations be defined?325 For example, it is undisputed that they need help with ADLs . However, it is argued that some can learn or relearn these daily activities. Should services, then, be limited to assistance with ADLs or include habilitation or rehabilitation that help persons master these activities themselves? Similarly, many with long-term care needs may be able to work if given support. Should prevocational, vocational, and supported employment be included in the scope of long-term care services?
A related issue is the selection of disability criteria. This has policy implications for determining the size and composition of target populations. For example, the more ADLs are used for screening, the smaller the eligible population. On the other hand, setting a lower number allows less disabled persons to become eligible on the justification that care will slow their deterioration and delay their need for institutionalization.
Furthermore, the type of ADL used also shapes the target population. In addition, not all ADLs may be appropriate for all populations. For example, some ADLs may be inappropriate for children and persons with cognitive disorders (e.g. Alzheimer's patients) or problematic behaviors (e.g. serious mental illness, head injuries, mental retardation). Rather, they may need measures of cognitive impairment rather than depend on ADLs. That is, they may be physically capable of performing ADLs but need instruction and guidance ("cueing") to do so. Assessments based only on the need for active help in ADLs rather than supervisory help (the only type needed by the cognitively impaired or those with problematic behaviors) would generate a much smaller population.326 One solution is to define them into the picture:327
Developing a common assessment tool would be integral to any attempt to provide a full range of long-term care on the services continuum based on functional need. However, any such tool needs to be worked out with full agreement among all populations, advocates, agencies, and providers that address the needs of all groups. Agreement must be reached without unfairly promoting one group's interests or obstructing those of another. This is a task easier said than done.
The overriding obstacle is for categorical populations, advocates, agencies, and providers to resolve all issues of "ownership" vs. coordination in providing specific services along the care continuum. The Commission recognizes this:328
However, the Commission does state that defining service eligibility on the basis of functional disability does not disregard specific diagnosis or diagnostic-specific services. Rather, it focuses on the level of impairment created by the condition. Indeed, even a categorical system needs some way to measure degrees of disability in order to determine eligibility or priority for services.329
Access to Information and Entry Into the System: The Commission found that lack of information is a significant barrier to obtaining long-term care services.330 Information and referral is defined as "a process which links an individual who has an information or service need to the resources which are designed to meet that need."331 Two relevant issues for access to long-term care services are: how to improve initial access to information and how to improve the way information providers organize their information. However, an information system can be improved without changing the existing structure, functions, or relationships among agencies. That is, it can be improved independently regardless of the system of administration.332 Furthermore, a good information system can adapt to future changes in the long-term care system itself. On the other hand, an improved information system cannot but enhance equal access, a goal of a uniform SEP process. To the extent that it does, a good information and referral system will aid the operation of a single entry point.
To state the obvious, a good information system must make the information accessible. It is no use if those who need it cannot get at it. Just having an 800-line number staffed with specialists is of little use if consumers do not know about it. Therefore, outreach is a key ingredient in any information service. The service must be advertised effectively. Furthermore, the circumstances under which an individual needs information are not ideal. A caregiver may be at the point of giving in to the pressures of caregiving. A person may be suffering from the shock of a threatening diagnosis . Or a person may have actually suffered a recent injury or be disoriented in a strange new situation. The information system must be able to handle requests for information from individuals who may not be in top cognitive or emotional form.
In Maryland, the OA's Senior Information and Assistance program is the state's most advanced public-sector information resource for a long-term care population. As such, it may provide a model for other populations or for a generic long-term care information system. The OA provides oversight, information, updates, technology assistance, publicity, and statewide linkage, including a single 800 number that gives the caller entry into the entire system. Services are organized by jurisdiction, through the 24 AAAs, augmented by over 200 satellite sites. Local offices generally offer toll free or collect telephone service and full service at least five days a week during normal business hours.333 The only other federally-mandated information service is the Child Find Information and Referral Service for children with special education needs, provided by the Maryland Department of Education. There is no clearly defined information system for the developmentally disabled or for persons with serious mental illness.334
Options for a Long-Term Care Information System: The Commission described three options for improving the information and referral system. However, it withheld recommendation of any of the three pending more thorough investigation and wide consultation with consumers and all interested parties in the public and private sectors. Nonetheless, the third option seems the most promising -- that of developing a system with a highly visible access point for long-term care information:335
Such a system would be designed to be a "first call" information number that could provide information, make appropriate referrals, or itself serve as the gateway into the service system.
Possible approaches to implement this concept include:
Organization of Community Care Programs: Oregon has consolidated all components of its long-term care programs into a single administrative structure at the state level and a highly integrated delivery system at the local level. A single state agency, the Division of Senior Services, manages all of the state's community and institutional long-term care programs. These include Medicaid, a Home and Community Based Services waiver program, the state-funded Oregon Project Independence (an in-home and community services program for elders), and the Older Americans Act. In addition to developing community care systems, the Division licenses and certifies nursing homes, reimburses them for the care of Medicaid clients, and develops policies governing the participation of Medicaid nursing homes.
Oregon's centralized administrative structure reflects the consolidation model in which responsibilities rest in a newly created single-purpose agency. Previously autonomous programs come under one budget which enables clear resource allocation between community-based and institutional care, and reduces the possibility of interagency battles. The expected outcome of such an organizational structure is to improve coordination within programs, reduce duplicative management functions, and develop a policy management strategy.337 However, gaps in coverage remain, largely due to strict eligibility criteria. Services generally are targeted to elderly and disabled people who are severely functionally impaired and those with low incomes, although some services are not means-tested or are provided on a sliding scale fee basis to people with higher incomes.338
Programs and Service Delivery: The Medicaid Home and Community Based Services waiver is the core of Oregon's community care system. Individual client assessments and case management services are financed through Medicaid administration funds. Similar services are provided through the state-funded Project Independence program to those similarly functionally impaired but ineligible for Medicaid. Participants pay on a sliding fee scale. The two programs delineate a half-dozen permissible services.339 These include in-home companionship services, home-delivered meals, and care services. Services provided in the community include adult foster care, home, residential care facility, specialized living facility, medical, and personal care services.340
The major components of the service delivery system include preadmission screening, case management, relocation planning, and risk intervention.341 The case manager administers the assessment (or by a multidisciplinary team if for nursing home placement) in order to uniformly measure the health and functional abilities of clients. Weights are assigned to data relating to ADLs. Priorities are ranked according to level of need: "A" for highest dependence in three to six ADLs, and "L" for those needing help in two or fewer critical ADLs.342
Considerations for System Coordination: Although Oregon's consolidated model is an extreme one, the lessons of that state's re-structuring are relevant for efforts at system integration at lower levels. The dramatic changes required in Oregon's change to a sole agency "generated significant tensions among the state agency, area agencies on aging, service providers and aging advocacy groups."343 (Note: In Hawaii's case, the addition of the disabled children and disabled nonelderly adult population merely multiplies the number of agencies, providers, and advocacy groups involved.) To address the major disagreement that arose, a process called the Negotiated Investment Strategy was undertaken. The interests of the state, area agencies, service providers, and elderly advocate groups were each represented by their own five-member team. These four teams met for a full day every other week for more than six months, at the end of which agreements were reached that successfully clarified the roles and expectations of all parties. It is likely that such broad government and industry-wide negotiations will be necessary in any attempt to realign target populations, funding, services, and service delivery. This is true whether the changes entail a wholesale re-structuring of the long-term care system, or whether only certain components, such as an SEP process is envisioned.
Organization of Community Care Programs: Wisconsin's long- term care administrative structure is an example of the umbrella model using a generic or functional approach. The Wisconsin Department of Health and Social Services (DHSS) and three units within it (the Division of Health and two bureaus within Division of Community Services) administer all long-term care services in the state. The Division of Health is responsible for Medicaid services. The Bureau of Long Term Support (BLTS) operates the primary long-term care program in the state -- the Community Options Program (COP). The BLTS also provides supportive home care and runs the Medicaid Home and Community-Based Services waiver. The Bureau on Aging administers OAA programs and the Alzheimer's program.345
Wisconsin uses an interdepartmental planning and coordinating group known as the Long Term Care Support Management Reference Group. Included in this group are the heads of the following divisions: Medicaid, the aging, vocational rehabilitation, state institutions, health planning, the developmentally disabled, community services, policy and budget, program initiatives, and the DHSS's deputy director. The group handles broad policy concerns and technical program issues, for example, nursing home reimbursement methodology, eligibility criteria, assessment tools, information systems, and potential Medicaid waivers. Working subgroups address specific areas of interest. At the local level, Wisconsin uses a strong system of county human service agencies to administer community care. These county agencies provide case management, conduct preadmission screening, and determine Medicaid eligibility. At the same time, AAAs administer traditional aging programs.346
Screening, Assessment, and Care Planning: An individual is screened at home, if possible, upon a referral. Anyone can make a referral, including the potential client. The COP lead agency provides training to hospitals, nursing homes, home health agencies, community groups, and other potential referral sources on how to refer persons to the COP. An assessment is then scheduled (see the wait list, below). Wisconsin defines "assessment" as:347
The assessment usually covers information about the person's:348
A care plan is then developed to address the individual's needs that outlines how each need will be met, who will provide what services when, where, for how long, and at what cost. Upon approval of the individual plan, and subject to funds available, a case manager is assigned to begin arranging the care plan. There is no limit to the amount of Community Options funds that may be spent for an individual as long as the average cost of care for all Community Options participants in the county does not exceed the average state Medicaid share of the cost of nursing home care.349 The case manager is responsible for on- going monitoring and re-evaluation of the client's situation. In addition, the case manager also monitors service providers, mediates any disputes, and arranges for new providers if necessary.
Multiple Populations and the Community Options Program: The Community Options Program (COP) is the focal point of all federal, state, and local resources devoted to community care services. The state-funded COP is designed to serve all populations needing long-term care, including the elderly, physically disabled, developmentally disabled, chronically mentally ill, and the chemically dependent. Both children and adults are served. In addition to support services, the COP also funds assessments, care planning, and on-going case management. The state has not defined a particular set of services that can be authorized. State guidelines have concentrated on developing county plans for coordinating existing service programs and involving the client and families in developing individual care plans.
Although multiple populations are served, the COP is designed to serve only those who may otherwise enter nursing homes at a cost that averages no more than that of Medicaid- funded nursing home care. Its purpose is to divert persons from nursing homes, not to include every person who needs long-term care.350 For example, eligibility is determined by a functional screen which seeks to determine if a person needs a level of care equal to that of a nursing home. If not, then the system will not assess that person. Therefore, although children are eligible, the COP program is not strictly for such young clients because children do not normally need to enter nursing homes. The same is true for the developmentally disabled. In addition, the population of disabled children is relatively very small.
More importantly, according to the Bureau of Long Term Support, although the COP was designed to address five populations, it was never fully implemented because of a lack of funding. The Wisconsin Legislature did not appropriate sufficient funds to carry out all statutorily required assessments for those who may enter nursing homes. There are currently 8,000 on the waiting list for assessment, or about two years' worth. Along the same lines, even if all required assessments were done and people were routed away from nursing homes, there are not enough community services and funding for them, thus raising false hopes.351
Targeted Groups and Significant Proportions Served: The COP is required to serve persons from the major target groups in proportions which approximate the percentages served in nursing homes prior to the program's inception. These percentages are termed the "significant proportions" that Wisconsin statute requires to be maintained.352 The table below shows the statutorily required minimum significant proportions that must be served and the actual point-in-time proportions served on December 31, 1992.353
Targeted Group Minimum Actual
Frail Elderly 55.0% 57.8% Developmentally Disabled 14.0% 17.0% Physically Disabled 6.6% 15.1% Chronically Mentally Ill 6.6% 8.5% Alcohol or Drug Abusers 0.0% 0.5%
Actual proportions have always met the statewide minimum significant proportions since program inception.
Medicaid Waivers: Wisconsin also has four 2176 Medicaid waivers: two for the developmentally disabled and two for the elderly and physically disabled. The largest waiver is the Community Integration Program. Counties may access this waiver program on behalf of older people when there has been a reduction of licensed nursing home beds in the county.354
Other Community Care Programs: Although the COP is the core of Wisconsin's long-term community care services, that state operates several other support programs that address the long- term needs of multiple populations.
The COP-Waiver (COP-W) program is Medicaid-funded and provides community services to the elderly and physically disabled in lieu of building new nursing home beds.355 The COP- W is a limited entitlement program whose services are limited to those having federal approval. Non-financial criteria that must be met include requiring skilled nursing facility (SNF) or intermediate care facility (ICF-1 or ICF-2) levels of care. Only specified services are reimbursable:356
The CIP II program (community integration program) is also Medicaid-funded and provides community services to the elderly and physically disabled persons after a nursing home bed is closed. Like the COP-W, the CIP II is a limited entitlement program. The same need for SNF or ICF levels of care must be met. Only specific services are reimbursable (the same as for the COP-W) except for case management.357
The CIP IA-DD is another Medicaid-funded community integration program that provides community services but is targeted to persons relocated from developmentally disabled (DD) centers. This program pays higher per diem rates than other waivers and has a better capability to serve children although DD adults are also included. Consumers have a choice of providers but program participants are strictly limited to those specified in the waiver. Reimbursable services are limited to those specified:358
Community services are also available to the developmentally disabled, both adults and children, through the CIP IB-ICF/MR program. Like the previous programs, this one is also Medicaid- funded. As in the CIP IA-DD program, above, participants must be relocated or diverted but from ICF/MRs other than DD centers and certain nursing homes beds which would have been converted to ICF/MR status. Consumers also have a choice of providers. However, diversions often require county matching funds. In addition, prescriptive definitions limit coverage flexibility and services are restricted only to those specified in the approved waiver. Services are the same as for the CIP IA-DD program.359
The Katie Beckett program allows for Medicaid eligibility for children up to age 18 with physical and/or developmental disabilities who live with their families instead of in hospitals or nursing homes. Children must otherwise require a level of care provided by hospitals, nursing homes, or DD centers. This is an entitlement program but neither the income nor assets of parents are counted. Only Medicaid card services are reimbursable; additional services must come from other programs. Cases are processed at the state level and county contacts are limited.
The Community Support Living Arrangement (CSLA) program is a Medicaid benefit program for DD adults. The CSLA program provides supported living services to individuals living in their own homes or the homes of relatives in counties which successfully competed for funds. This program uses medical assistance funds for long-term supports. Importantly, participants need not meet institutional level of care requirements. The consumer is granted a high degree of latitude in directing the choice of services provided. Person-centered planning is emphasized. However, there are only limited funds for this program and all federal funds require a 40 percent county match. Authorized services include supportive home care, respite, daily living skills training, housing modifications, communication aids, adaptive aids, counseling, transportation, and personal emergency response systems.360
Lastly, the CSP program provides a range of treatment, rehabilitation, and support services for persons with severe and persistent mental illness through an identified mobile community treatment team of clinical and support staff. This program's mobile emphasis is designed for persons who may not access traditional mental health outpatient services. A team approach is used to prevent clients from entering institutions. Only adults meeting clinical criteria are eligible although older adolescents are occasionally admitted. Participants must also have significant functional impairments for living in the community. Funds are limited and counties must fund the state share of Medicaid. It is also difficult to hire sufficient qualified staff in some areas of the state. Reimbursable services include almost all services that are identified on the treatment plan except direct vocational and social recreational services. Allowable services include:361
Effect of COP and Medicaid Waivers on Nursing Beds: Wisconsin reports that the COP and the Medicaid Waivers have had a significant effect on the utilization of nursing home beds. The actual census of nursing home residents in Wisconsin rose steadily from just above 25,000 in 1974 to 38,965 in 1980. After the inception of the COP in 1981, the census began to drop and continued dropping with the addition of the community waiver programs. In 1992, the census had fallen to 33,100 against a conservatively projected 49,952 if the various programs had not been implemented.362
Cost of the COP: The cost of care for most individuals in the COP was reported to fall within a range of costs comparable to the average rate for nursing home care. Admittedly, some individuals receiving COP or waiver services incur very high costs. However, nearly 80 percent of all participants had average monthly COP costs in the range of $0 to $1,900 while less than five percent averaged monthly service costs above $2,900. Nearly 95 percent of all expenditures were in the $0 to $1,900 range, averaging $727 a month for all COP, waiver, and Community Integration Program-II participants.363
County Administration: Wisconsin appoints or contracts with a lead agency in each county. By design, they are all county governmental units although they can subcontract with private agencies either for profit or nonprofit. COP funds are meant to be funds of last resort. Thus, it makes sense to put the COP program into the hands of those agencies already operating with other funds that can be used first. Each county lead agency must address all five target populations. Most are county departments of social services, mental health, developmental disabilities, or some combination. If a county agency originally did not cover all five target populations, they may develop interagency agreements with other agencies or contract out for expertise. County governments were chosen also because they already have administrative and service delivery structures in place and have links with other support services such as public nurses. Furthermore, their staff are already somewhat trained in the assessment process.364
Program Flexibility: Other than requiring only that twelve areas of living must be addressed, the counties are given great flexibility. County units may use one standard assessment tool but they are free to append specialist assessments, if necessary. For example, one large urban county used computer assessment scoring. On the other hand, assessment in a rural county consisted of two pages in story-narrative form describing the client's situation. The latter's rationale was that it is more important to know the person than to impersonally assess scores in twelve areas. The key is flexibility. An assessment is meant to see if a person can stay in community. If so, it seeks to identify obstacles preventing the person from doing so. The program then helps to remove those obstacles.365
The operating principle is that there is one standard concept, not one standard inflexible tool. Nor does it mean using the same person to assess all five populations. In fact, to assess an elderly person, an assessor whose knowledge is limited to disabled children will defer to someone else knowledgeable about the elderly. Wisconsin requires counties to use specialists to assess the correct people if necessary. Flexibility extends to allowing county units to determine the composition of the assessment team. They may use just one assessor or a team. Disagreements arise even now over whether only specialists in one target population can assess members of that specific population. However, many believe that many basic needs can be assessed by someone not keyed to a specific target population. In Wisconsin, assessments are not the be-all and end-all. In any case, initial assessment are often followed by further, more specific, assessments.366
It must be underscored, however, that program flexibility is made possible in large part because of the state's ability to totally finance its community care system. Without constraining regulations that accompany federal funding, Wisconsin has been able to put forward a policy that addresses multiple populations requiring long-term care. Justice, et al., report that:367
Other States: All long-term care services in Arizona are managed by case managers who screen for financial eligibility and medical and functional needs. The state's functional screen is designed to target those at immediate risk of institutionalization. The long-term care component of the demonstration Arizona Health Care Cost Containment System is meant to provide acute and long-term services to eligible residents. Arizona receives a set amount from the federal government for each eligible participant, regardless of the amount of services used. Arizona pays contractors on a fee-per- person basis instead of a fee-for-service basis. Thus, contractors bear the risk of excessive use and have an incentive to control costs. The long-term care component of the program was not implemented until 1989 for the elderly and physically disabled populations.368
California's Linkages program helps match home-based community services with adults who otherwise might be placed in an institution. Services are provided from thirteen sites that each receive $300,000 annually from the state general fund. Case management services include assessing the person's needs, planning for care and, if necessary, funding services. The cost for enabling persons to remain in their homes is $134 a month each, one-tenth the typical $1,435 required for a month's stay in a nursing home. The program served 3,800 persons from 1987 to 1988.369
Kentucky's Personal Care Attendant Program, established in 1985, subsidizes in-home attendant care to the severely handicapped elderly. The handicapped person hires, supervises and pays the attendant. The cost per handicapped person averages $6,000 a year, $10,800 less than institutional care. Estimated state savings amount to about $2 million for the 195 elderly handicapped served annually.370
Mississippi's Community-Based Long-term Care Program provides services to the frail elderly. Services include homemaker, home health aide, case management, transportation, group meals, home-delivered meals and adult day care. Many of the 7,800 persons served aged 60 or older might otherwise have been forced to enter an institution for care. The program has served more than 20,000 persons at an estimated cost of $9 million since 1985. The program's innovative features include regional-level coordination of local agencies and planning for new resources.371
Summary: A single entry point (SEP) implies some degree of system integration. Obviously, an SEP does not embody total system integration nor is this study interested in such. As pointed out earlier, integration is a matter of degree. Some system components can be coordinated, such as an SEP process, without total system integration. All the states examined have attempted to coordinate their fragmented long-term care systems. However, none of the states examined have specifically focused on a single point of entry. All states have touched upon screening, assessment, and case management as instrumental to their long- term care reform. These three processes, used together in a coordinated way, can facilitate system access and form the basis of a single entry point.
The issue of using either a functional or a categorical approach to long-term care affects the successful implementation of an SEP process. A functional approach makes it much easier. However, there are many obstacles -- structural, philosophical, and political -- to adopting a purely functional approach. A subset of this issue is that of inclusion of additional target populations. The more populations, the more difficult it would be to work out the differences among them all. However, if a functional approach is adopted, there is little justification to exclude any group that needs long-term care.
Implementing a continuum of services is a common theme. Home- and community-based care is becoming more acceptable as cheaper ways to provide the least restrictive care. However, states have recognized the importance of and need for institutional facilities. A continuum of care concept includes all services, community-based and institutional.
Many of the states recognized that major efforts at broad policy planning is necessary prior to any attempt at implementing system integration. This is so not only because of the fragmented system inherited from years past but also because of the ingrained attitudes regarding turf held by bureaucrats and advocates. Cooperation from all groups must be achieved. More importantly, strong and continuing executive leadership and commitment to change is needed since change implies reform, however slight, as with implementing an SEP process.
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