Organization: Part I of this chapter presents a partial look at the provision of publicly-funded long-term care services in Hawaii to the three designated populations. Many state agencies are involved in this. The primary agencies involved are the Departments of Human Services and Health, and the Executive Office on Aging. Consequently, program and service information from these three agencies is presented. In Part II, the three agencies express their own views on the pros and cons of a single entry system in Hawaii.

Access to the Long-Term Care System by Multiple Populations: The Department of Health (DOH) described how members of each of the three designated populations may access the long-term care system. There is no single entry point. The largest population -- the elderly and their families -- currently access the system through the Aging Network (AN). The AN is comprised of the Executive Office on Aging (EOA), the county Area Agencies on Aging (AAAs), and their contracted service providers. Prospective clients may call the relevant AAA, the EOA, or service providers. They may also call the Department of Human Services (DHS) or the DOH. In case of a hospital discharge, the medical discharge social worker or the person's family members would begin to explore post-discharge options. The DOH also cited a potential problem of access relevant to Hawaii's population -- that of "language access." Many of Hawaii's elders do not speak English. They may also hold beliefs concerning long-term care practices and expectations that are culturally very different from prevailing societal beliefs. The DOH argues the need to address these beliefs regardless of the structural model of access to services.372

As for disabled children, entry to the system is gained through a variety of access points. Access may be through the medical system where an initial diagnosis is made. During early childhood, the child's family may access special educational services in the schools. Later in life, they may access supportive services from the DHS for an indefinite period. Access may be through DOH's programs whose services include information and referral, care coordination and social work, developmental screening and evaluation, medical and related health services, early intervention services, respite care and family support, and parent-to-parent services. It appears that entry can be gained through any of the following DOH programs:373

1. Zero to Three Project, including the Hawaii Keiki Information Services System;
2. Children with Special Health Needs Program through the intake nurse; and
3. Preschool Developmental Screening Program.

According to the DOH, disabled non-elderly adults gain access to the long-term care system in a similar way, that is, through the medical and social service system. Act 341, Session Laws of Hawaii, 1987, created chapter 333F, Hawaii Revised Statutes, relating to services for persons with developmental disabilities (DD) or mental retardation (MR). Section 333F-2, Hawaii Revised Statutes, requires the DOH to "develop and administer . . . programs and services for persons with developmental disabilities or mental retardation within the limits of state or federal resources." It is interesting to note that even back in 1987, these programs may include the "development and implementation of a program for single-entry access by persons with developmental disabilities or mental retardation to services."374

According to the DOH, the DD population comprises a small but visible group in contrast to the larger but hidden population of disabled due to injury, accident, or illness. Members of the latter group tend to be cared for in their own homes and often fail to be counted for inclusion for services.375

Access and Eligibility to DOH Programs and Services for the Elderly: The DOH's Maluhia Home Health Center (Center) currently operates several programs. The Maluhia Home Health Care (MHHC) program makes available skilled home health care that is reimbursed by the client's medical insurance (Medicare, Medicaid, Hawaii Medical Service Association (HMSA) and HMSA Quest).376 Clients must be home-bound (though not necessarily bed-bound),377 have insurance, and meet insurance guidelines for participation. Services must be deemed medically necessary, be provided part- time or intermittently, and a physician must approve a plan of care. Actual services include skilled nursing and complex nursing procedures which include tube feeding, nasopharyngeal and tracheostomy aspiration, insertion of catheters, wound care, ostomy care, heat treatment, administration of medical gases, rehabilitation nursing, and venipuncture (collection of blood specimens).378 Services also include home health aide services, medical social services, and physical, occupational, and speech therapy services. Access is by referral to the Home Health Care office through contact by the client, a physician, or a referral agency. If found eligible, the client is assessed and services rendered.379

The Maluhia Waitlist Demonstration Project (MWDP) is a Medicaid waiver program established in collaboration with the DHS through its Community Long-Term Care Branch (CLTCB).380 Medicaid-eligible elders or disabled adults in acute care hospitals who require care at the nursing facility level but who are waitlisted for nursing home placement are eligible. Although there are no age restrictions, in reality there are no disabled children in the program because younger children are not usually waitlisted for nursing homes. There are over 350381 hospitalized patients waitlisted for nursing homes in Hawaii (mostly on Oahu). However, adult residential care homes (ARCHs) have continuously had about 300 empty beds (about 15 percent to 20 percent of capacity).382 MWDP participants are routed to qualified ARCHs383 as an alternative to nursing home care. (All ARCHs, including those not specially qualified in the MWDP program, are licensed by the DOH's Hospital and Medical Branch.) Access can be through the social work department of hospitals or nursing homes. Applicants are screened and assessed for eligibility. The potential client meets with a Maluhia ARCH operator and the discharge team in a discharge planning meeting to determine a feasible match. The Center provides administrative oversight and case management and dietician services. The MWDP service package includes:384

1. Housing: ARCHs are used to provide health and assisted living services and client supervision;
2. Case Management: Continuous health and social assessments and coordination and monitoring of a comprehensive group of services are carried out;
3. Home Based Health Services: These are intermittent therapeutic services that provide home assessments, teaching, continued monitoring of clients and caregivers, e.g., physical, occupational, and speech therapies, and dietician services;
4. Personal Care Services: Personal care services are provided beyond what ARCHs are now required to provide, including assistance with ambulation, mobility, transfer, bowel and bladder control, toileting, bathing, dressing, grooming and feeding, meal preparation, medication assistance, chore services, essential errands and maintaining health records; >
5. Other Services: These include respite care, specialized medical equipment and supplies, adult day health care, environmental modifications, and transportation, if and when appropriate.

The Center also operates the Maluhia PACE Hawaii Project and is its focal point. In 1981, Maluhia established Hawaii's first adult day health center (ADHC). Today, this is known as the PACE program. The term PACE refers to a Program for All-Inclusive Care for the Elderly. PACE's 60 participants are being served by an interdisciplinary team of health care professionals. Prevention, regular medical supervision, and overall general fitness are the key components of the model. Through PACE's preventive and rehabilitative services, the program hopes to stabilize chronic conditions and prevent complications from diseases and reduce expensive hospitalizations.385 Participants must be Medicaid-eligible, age 55 or older, reside in urban Honolulu, and be at the SNF or ICF level of care. About 87 percent live with their families while the rest live alone. The average participant is diagnosed with five to six medical conditions and 66 percent suffer from mental and cognitive impairments related to dementia or stroke.386

Participants engage in social activities, receive medical care, nursing, and rehabilitation therapies and treatment at the Center. They are closely supervised and their health status is monitored by the PACE interdisciplinary team. Services include:387

• Adult day health center388
• Dental care
• Durable medical equipment
• Nursing
• Podiatry
• Rehabilitation therapies (physical, occupational, recreation, and speech)
• Audiology
• Dietary consultation
• Home care/personal care389
• Optometry
• Social services
• Transportation
• Primary medical care
• Prescription drug coverage
• Skilled nursing home care
• Incontinence supplies

The PACE program hopes to prove that for a fixed price ($2,100 per month) below that of nursing homes, participants can be cared for by emphasizing the use of adult day health care in combination with other services such as home care services. The $2,100 rate is about 20 percent less than the average monthly Medicaid rate expended on the aged population for their health and long-term care. Nursing home monthly rates range from $3,500 to $8,000. For private-pay clients, participation in PACE represents about a 40 percent savings over private nursing home costs. For services exceeding traditional Medicare and Medicaid benefits, PACE costs less than what Medicare, Medicaid, and private individuals now pay for long-term care.390 However, the PACE program was constrained by Medicaid cost-sharing to about 49 slots. As a result, all slots have been filled. However, more patients are needed to make the program cost-effective. Thus, the PACE program has been marketed to private-pay individuals at $2,100 per month.391

To gain access to PACE, clients must call the program's intake at Maluhia directly.392 Screening determines eligibility (existence of physician's order certifying nursing home level care; Long-Term Care Evaluation Form 1147; income information for private-pay patients). An assessment of the patient's social and medical situation is conducted and a plan of care is drafted. Case management is then provided.393

As mentioned above, the Center's adult day health center has now been incorporated into the PACE program. Some of the original ADHC clients have opted not to enroll in PACE but only avail themselves of the ADHC's services including routine nursing care and monitoring, social services, maintenance activities, lunch meals and snacks, and social activities. Although services continue, Maluhia is no longer accepting clients interested only in ADHC services.394

As for institutional care, the DOH's Community Hospitals Administration is responsible for the State's community hospitals, most of which offer long-term care beds. Only Maui Memorial Hospital and the Hana Medical Center do not have long- term care beds. All the others in the system (Hilo, Honokaa, Kau, Kauai Veterans Memorial, Kohala, Kona, Kula, Lanai Community, Leahi, Samuel Mahelona Memorial, and Maluhia Hospitals) offer long-term care nursing services. (Maluhia Hospital is well-known for its 158 nursing home beds for both SNF- and ICF-level patients.) The Waimano Training School and Hospital (Waimano) in the DOH's DD Division is an institutional facility. Although non-elderly disabled are eligible for admission to community hospital facilities, most have been located at Waimano because of that institution's special purpose and specially trained staff. Kula Hospital has ICF/MR beds for children. (Leahi Hospital specifically admits "medically indigent persons who are suffering from chronic disease"395 and is considered a long-term care facility. Leahi patients are considered functionally disabled or limited and remain if they are best served through institutional nursing home care.)396

Other services and programs for elders, exclusive of those provided to persons with Hansen's Disease and by the DD Division, include:397

1. Operation Assist, a two-year demonstration case management project run by the Public Health Nursing Branch for the elderly in East Honolulu using non-social workers (no M.A. in Social Work)398 is scheduled to end in the near future;

2. Communicable disease and immunization activities;
3. Health promotion and education services;
4. An alcohol and drug project on Maui for elders;
5. A geriatric psychiatry training program at the Hawaii State Hospital;
6. Dental health services to long-term care institutions; and
7. Nearly statewide case management for elders provided through the public health nurse system.

The Office of Elder Health in the Personal Health Services Division was eliminated last year due to a lack of any real accomplishments. The envisioned intradepartmental coordination it could have provided did not materialize. Replacing it is an Aging, Long Term Care, and Disability Coordinating Committee which meets monthly to promote such intradepartmental coordination.399

Access and Eligibility to DOH Programs and Services for Disabled Children: While many of the services provided by or assured through the Family Health Services Division (FHSD) support disabled children, the DOH does not consider most FHSD- provided services long-term in nature. (See discussion in chapter 3 under the headings "Long-Term Nature of Services and System Integration" and "Federal Programs for the Developmentally Disabled.") Although disabled children need a set of services lasting a lifetime, not all types of care may be needed indefinitely. Even if they are, the duration of the provision of FHSD services depends upon the child's needs, age, and the program's services.

According to the DOH, children with special health needs are those "who have or are at increased risk for chronic physical, developmental, behavioral, or emotional conditions and who require health and related services of a type or amount beyond that required by children generally." Thus, disabled children are only part of a much larger group of children with special health needs.400 Accordingly, services to disabled children are only a part of a larger set of services to children with special health needs. In addition, many children with special health needs are not functionally impaired even though they may require continued services and follow-up over a long period of time.401

The DOH's Children with Special Health Needs (CWSHN) program assists families to obtain specialized medical care and other services for children with special health needs. Services include:402

• Care coordination services
• Specialty physician services
• Nutrition services
• Social work services
• Speech pathology and audiology services
• Outpatient x-ray, laboratory, and diagnostic tests
• Dental and/or orthodontic services for cleft lip and/or other craniofacial conditions
• Medications related to the eligible medical condition
• Transportation to and from neighbor islands to major treatment centers on Oahu
• Specialty clinic services

(See accompanying footnote for more information on services provided by the CWSHN Branch.)403 The types of services, available by program, are as follows:404

Programs:
1. 0-to-3 --> Zero-to-Three Hawaii Project for children up to age three
2. CWSHN --> Children with Special Health Needs Program for those up to age 20
3. PDSP --> Preschool Developmental Screening Program

• Information and referral: Hawaii Keiki Information Services System (through 0-to-3)
• Care coordination and social work: 0-to-3 and CWSHN
• Developmental screening and evaluation: 0-to-3 and PDSP
• Medical and related health services (including nutrition, speech pathology, audiology, physical therapy, occupational therapy, and/or psychological services: CWSHN; 0-to-3; and PDSP
• Early intervention services: 0-to-3
• Respite care: 0-to-3
• Family support services; parent-to-parent services: 0-to-3

The Zero-to-Three Project for those who are developmentally delayed or biologically or environmentally at risk, and their families, also provide newborn hearing screening, nutritional services, psychological evaluations, and social work.405 The PDSP program focuses on the development of children aged three to five. Services include training to preschool staff in the administration of developmental screening for these children and consultation, interpretation, and follow-up services for those children identified by the screen. Children access the system by being referred by their parents, public health nurses, physicians, preschools which do not provide such screening, and by other agencies.406

Most children with medically fragile conditions either reside in Waimano or are placed in long-term care facilities for older adults. According to the DOH, although the DHS-operated Nursing Home Without Walls waiver program serves a small number of these children, there are not enough slots.407

Access and Eligibility to DOH Programs and Services for Disabled Non-Elderly Adults: According to the DOH, most of the long-term care services for the non-elderly disabled provided by the DD Division are available to disabled children as well. The DD Division (recently placed within the Health Resources Administration) oversees the Community Services for the Developmentally Disabled Branch (CSDDB). The CSDDB provides:408

• Eligibility determination for DD Division services
• Diagnostic services
• Service acquisition
• Case management
• Case coordination
• Residential and program placements
• Family support services including counseling, advocacy, family networking, family and community networking, self-advocacy and case management
• Adult day activity programs
• Limited recruitment and certification of residential homes either directly or through the purchase of services with general funds or through the maximization of federal funds

As mentioned above, there is no age criteria for service eligibility. Only those who are developmentally disabled or mentally retarded may receive services. Access is by application for service through the CSDDB's Central Intake and Diagnostic Services Section. The individual's mental retardation or developmental disabilities are assessed and evaluated.

On the institutional side, Waimano -- a certified ICF/MR and nursing facility -- provides 24-hour residential services for persons with developmental disabilities or mental retardation who cannot be sustained in a community setting. Residents are severely and profoundly mentally retarded who have intense medical conditions or challenging behaviors,409 or both. Their conditions require extensive care which call for intensive supports and skills training. Skills training emphasizes the following areas: communication, self-help (eating, dressing, bathing), mobility, and social relationships.

Act 189, Session Laws of Hawaii 1995, effectively closes Waimano as an institution by June 30, 1998.410 All Waimano residents are to be moved to appropriate non-institutional community settings. As a result, Waimano will no longer be admitting residents on a long-term basis. According to the DOH, Waimano has been reducing its census and plans to use a short- term crisis shelter to accommodate emergencies and provide respite for care providers. The DOH is very concerned about the needs of Waimano's residents, particularly those with challenging behaviors, who must moved to small residential homes. These Medicaid-funded small, community-based residential homes -- ICF/MR(c) -- need to be staffed 24-hours-a-day by trained persons who can handle challenging behaviors. Essential supports must also be in place. These include the crisis shelter, respite services, day programs, transportation to day programs, and timely access to medical specialty and therapeutic services. In addition, Home- and Community-Based Services waiver services will continue to be available.411

Waimano also operates a Medicaid waiver community-based supports program for about 200 persons with mental retardation living in the community, many of which are ex-Waimano residents. Services include day programs for the medically fragile and behaviorally challenged. Again, there are no age restrictions so that both children and non-elderly adults may receive services with the CSDDB determining eligibility.412

Neither the Commission on Persons with Disabilities nor the State Planning Council on Developmental Disabilities provides long-term care services. Both advocate for accessible, appropriate long-term care services for children and adults. The Commission addresses the significantly larger population of persons with disabilities, regardless of the type. The Council is concerned only with persons with developmental disabilities.413

Community Long-Term Care Branch (CLTCB): The CLTCB operates under the DHS's Med-QUEST Division and serves the long-term needs of the elderly, the disabled, the DD/MR population, and the catastrophically ill. Client eligibility criteria include:414

• DHS doctor-certified need for acute, nursing facility, or ICF/MR-level of care
• Medicaid eligibility
• Non-Medicaid-eligible (for non-Medicaid programs)
• Determination by the CLTCB that needed services are below authorized expenditure ceilings
• Approval of client's personal physician that home care is safe with appropriate services

Populations Served: The definition of the DD population is basically the same as that used by the DOH.415 This population is relatively small -- the prevalence rate in Hawaii is 0.9 percent and only ten percent of this group are Medicaid- eligible.416 However, the disabled are defined differently from the DD population. According to the Rehabilitation Act of 1973 (as amended in 1978), a handicapped individual is any person who:417

• Has a physical or mental impairment which substantially limits one or more of such person's life activities;
• Has a record of such impairment; or
• Is regarded as having such an impairment.

Again, only about ten percent of this group are Medicaid- eligible.

The CLTCB also serves the catastrophically ill -- persons not necessarily born with debilitating disabilities. The CLTCB defines a catastrophic illness as:418

[a]n illness experience for which a person incurs medical expenditures in excess of $5,000 during a single calendar year including expenses that are the sum of out-of-pocket and third party payments. Additionally, those medical expenses exceeding 15 percent of gross family income could be called catastrophic expense. The current range of possible catastrophic illnesses includes such widely divergent illnesses as heart and kidney disease, mental illness, and cancer. For the purposes of identifying current target populations for community long term care services, the focus will be primarily on identifying clients who are diagnosed with HIV and those who are technology-dependent [w]hose cost of care commonly exceeds $20,000 - $30,000 per year.

CLTCB Programs: The CLTCB operates several programs. Chief among these is the Nursing Home Without Walls (NHWW) program which began in 1982. (Note: The CLTCB also operated a non- Medicaid component of the NHWW program until August 31, 1995 when state budget cuts forced its termination. It had served 51 gap group disabled clients who paid up to $1,200 per month for the same services as in the NHWW Medicaid component. The CLTCB also operated the Hawaii Centers for Independent Living Personal Care Program with a $184,000 budget for gap group disabled to find and pay for at-home nursing care. This program also terminated August 31, 1995 due to budget cuts.)419 The NHWW program provides an array of health, social, and environmental services tailored to clients' individual needs in their own homes that are otherwise available only in institutions. The severely and chronically ill and disabled in the NHWW program must be able to be maintained at home with reasonable assurance of health and safety at less than institutional costs. The primary services used are personal care and skilled nursing. The range of NHWW services, depending on local resources, include:420

• Case management
• Environmental modifications
• Personal care
• Skilled nursing
• Home delivered meals
• Moving assistance
• Non-medical transportation
• Adult day health
• Home maintenance
• Nutritional counseling
• Homemaker services
• Respite care
• Emergency alarm response system

Although it was originally thought that most clients would be elderly, the NHWW program now serves all age groups. Understandably, the largest proportion (43 percent) of clients is comprised of the oldest age group -- those age 65 and older. However, adults aged 18 to 49 comprise the next largest proportion at a substantial 31 percent. Those aged 50 to 64 make up only 13 percent while disabled children accounted for another 13 percent. In other words, children and non-elderly adults make up 44 percent -- almost half -- of the NHWW population.421 The program's waiver has been renewed by the Health Care Financing Administration for five years to 1997 which authorizes an increase from the 350 clients served in 1993 to 500 clients over the five-year period. Even so, the NHWW program maintains a waiting list of over 300 individuals statewide. More importantly, the CLTCB states that it cannot serve the approved increase in clients because of insufficient funding. In 1993, the average annual cost per NHWW client was $11,694, roughly half the average institutional cost of $23,028.422

The CLTCB also runs the Home and Community Based Services waiver consolidated program for the developmentally disabled and mentally retarded. Clients must be Medicaid-eligible and require ICF/MR-level of care. As with other waivers, service costs must not exceed institutional ICF/MR care. Services are provided directly by the DOH and qualified private providers and individuals to clients living in care, foster, domiciliary, or their own homes. Services include case management, habilitation, respite care, environmental modification, adult day health care, personal care, and skilled nursing. Over 500 individuals were served in fiscal year 1993 on Oahu and Maui, of which one-third were deinstitutionalized from an ICF/MR facility upon admission to the program. Two-thirds were residing in the community.423

Finally, the CLTCB operates the HIV/AIDS Community Care Program which began in 1988. This waiver program has been approved for five years through May 31, 1997. Services are similar to those provided by other CLTCB-run programs. The additional eligibility criterion, naturally, is a diagnosis of HIV/AIDS infection.

The CLTCB does not operate but rather provides administrative oversight for the following four programs:424

1. Foster Family Community Care Program (a waiver program, similar to the MWDP, for individuals age 55 and older to demonstrate a cost-effective community-based residential alternative for people who would otherwise be institutionalized);

2. Developmentally Disabled/Mentally Retarded Program;425

3. HIV Community Care Program (on Oahu); and

4. Non-Medicaid Personal Care Program (for chronically ill and disabled clients who receive subsidies to independently hire, manage, and train personal care attendants).

In addition, the CLTCB has developed a Home Health Training Unit to train home health aides to meet the increasing demand for personal care services. The unit trains personal care/home health paraprofessionals in a ten-week course consisting of 170 hours, achieving a 70 percent course completion rate.426

Family and Adult Services Division -- Project Malama: Aside from the CLTCB in the Med-QUEST Division, the Department's Family and Adult Services Division had been operating Project Malama as part of the Hawaii Long-Term Care Channeling Demonstration Project (Channeling Demonstration). Project Malama was closed October 1, 1995 due to state budget cuts.427 The Channeling Demonstration aimed to promote state long-term care planning for the disabled elderly and to institute a local channeling and case management project to prevent and delay institutionalization. Project Malama provided the channeling services to disabled and impaired elderly who wished to live, despite their disabilities, in the community and not in institutions. Channeling refers to the appropriate routing to and use of existing long-term care organizations and systems for the benefit of clients. Its primary elements are assessment, case management (including care planning and arranging for and monitoring of services), monitoring of clients, and reassessment. Thus, Project Malama did not directly provide services; it only coordinated them.

By way of background, the U. S. Department of Health and Human Services established the National Long-Term Care Channeling Demonstration in 1980. Hawaii was among twelve states chosen to participate in the project. The National Channeling Demonstration was created to develop and test methods to maximize the efficient use of existing long-term care resources. Channeling projects had the following objectives:428

1. To marshal and direct long-term care resources in a community so that overall costs are contained;

2. To increase access to a wider range of services than is currently available;

3. To match services used to the identified needs of clients;

4. To concentrate public resources on those persons with the greatest need for subsidized long-term care;

5. To stimulate the development of needed in-home and community services which do not exist or are in short supply;

6. To reduce the unnecessary use of public long-term care services, including costly medical and institutional services;

7. To promote efficiency and quality in community long-term care delivery systems;

8. To promote a reasonable division of labor among informal support systems (including families, neighbors, friends), privately financed services and publicly financed care; and

9. To maintain or enhance client outcomes, including physical and mental functioning and quality of life.

Project Malama first began accepting referrals on May 10, 1982. By June, 1983, it had received 424 referrals and had served a cumulative active caseload of 264.429 Participants had to be age 65 or older and unable to care for themselves for six months or more. They had to live in the catchment area and have caretakers who find it difficult to continue providing care. If they were in hospitals, they must have been eligible for discharge within three months.430 Income was not an eligibility criterion and participation was voluntary. At the time of its closing, Project Malama had been operating with $500,000 in state funds.431 It had served 389 clients during the fiscal year that ended June 30, 1995.432 It also purportedly had a waiting list of about 100 individuals.433

The then Department of Social Services and Housing stated in 1983 that channeling and Project Malama were:434

[a] departure from current general practice because it attempts to establish a single entry for accessing long term care services, promotes client-focused services, and introduces an altered set of relationships among health, mental health and social service agencies to help clients gain access to a wider array of services than is usually available. [Emphasis added]

The fact that such a project existed purely to help coordinate services to address the long-term care needs of the elderly is testimony that access to services is not easy. According to Dorothy Ono, Director of Project Malama:435

Have you ever tried to apply for services? Do you know how complicated it can be to get a home-delivered meal or bathing services? The linking up takes a lot of time, effort, and expertise. Many of these people will be lost without us there to do the monitoring and to be an advocate and make sure everything happens.

The Family and Adult Services Division also runs the Senior Companion Program which trains seniors to become companions to other seniors. This is a federally-funded, non-Medicaid program which pays seniors a stipend for working as senior companions.436

Functions of the Executive Office on Aging (EOA): The EOA's mandate covers all elderly persons age 60 and older. It administers funds received under the Older Americans Act (OAA) and from state purchases of service and grants-in-aid directed primarily at the provision of home- and community-based care. It also sets standards and establishes contractual agreements with providers for services. The EOA is also the state unit responsible for planning, coordination, and advocacy for social services and other needs of the older population in compliance with the OAA.437 (See "Note" in chapter 2 under section titled "Numerical Assessments -- Gatekeeper Function" for detailed discussion on the role of the EOA under the OAA.)

Services: The EOA does not provide direct services. Services that are funded through the OAA and other sources are available throughout the State through a network of public and private agencies. These agencies provide nutrition services (home-delivered and congregate meals), access services (information and referral, transportation, outreach, and other services), in-home services (chore, friendly visiting, telephone reassurance, and other services which enable elders to live independently at home), and legal services.438

Also, for a number of years, the EOA had operated a Case Management Demonstration Project in conjunction with the DOH. The EOA designed, evaluated, and monitored the program and the DOH carried out the actual case management activities. The project is phasing out and a final report is to be published soon.439

Statutory Duties of the EOA and Administrative and Program Support: By statute, the Director of the Executive Office on Aging (EOA) has the following functions, duties, and powers:440

1. Serve as the principal official in state government solely responsible for the performance, development, and control of programs, policies, and activities on behalf of elders;
2. Oversee, supervise, and direct the performance by the director's subordinates of activities in such areas as planning, evaluation, and coordination of elder programs and development of a statewide service delivery network;
3. Assess the policies and practices of other agencies impacting on elders and conduct advocacy efforts for elders;
4. Advise the governor on new legislation, programs, and policy initiatives and conduct such liaison as would be required to implement them;
5. Serve as a member of advisory boards and regulatory panels of state agencies in such areas as income maintenance, public employment, retirement systems, certification of health care facilities and programs, social service and medical assistance, and housing and employment, among others;
6. Administer funds allocated for the executive office on aging; and apply for, receive, and disburse grants and donations from all sources for elder programs and services;
7. Establish a clearinghouse for complaints of persons regarding services to elders, or operations of state and county agencies affecting elders, investigate the complaints, and refer the complaints and the director's findings to the appropriate agency for corrective action;
8. Adopt, amend, and repeal rules pursuant to chapter 91 for the purposes of this chapter;
9. Employ and retain such staff as may be necessary for the purposes of this chapter, in conformity with chapters 76 and 77; and
10. Contract for or grant such services as may be necessary for the purposes of this chapter, including master contract with other state agencies receiving federal and state funds for programs and services for the aging, and purchase of service agreements with appropriate agencies.

The EOA also engages in various planning and administrative activities as well as community assistance and program management. Its planning and administrative services division is responsible for the:441

1. ) Preparation and submission of programs and budgets;
2. Preparation of an annual evaluation report on elder programs for the governor and legislature;
3. Preparation of studies and analysis;
4. Maintenance of personnel records;
5. Management of contracts and agreements entered into by the executive office on aging with public and private vendors, consultants, and suppliers;
6. Monitoring the purchase of service agreements with public and private agencies and rendering technical assistance to elder program service providers; and
7. Establishment and maintenance of reimbursement systems for services provided by agreement with federal, state, and county agencies, as well as private groups.

The EOA's other division, the community assistance and program management division, engages in the following activities:442

1. Legislative research and development as well as liaison on state and federal legislative matters;
2. Conducting public affairs programs on elder affairs programs, projects, and needs;
3. Development and implementation of educational, recreational, and cultural programs for elder persons;
4. Provision of technical assistance and liaison with community groups, organizations, and independent programs of benefit to the elders;
5. Development and implementation of active programs of consumer protection and pre-retirement counseling;
6. Establishment of a statewide information and referral system, and an annual inventory of elder programs and service agencies;
7. Technical assistance and liaison for the purpose of establishing elder-controlled local service delivery systems providing comprehensive services and employment opportunities for elders throughout the State; and
8. Development and management of federally funded programs and special projects under the Federal Older Americans Act and other federal sources.

System Access: The EOA's access services include information and referral to long-term care services, outreach to seniors, and transportation. According to the EOA:443

Elders gain entry to the system in a variety of ways. This office is engaged in wide-spread publicity and community education which includes long term care. We have brochures and other printed information and media materials which advertise our services. There is widespread distribution of our information and referral numbers and our Toll-Free national information services which undoubtedly draw many seniors to us for access to the system. Some simply go directly to providers when they feel the need is there. Physicians are a common source of entry into the system. Referral sources for the case management demonstration project were varied. Other long term care agencies, senior centers, county I and R services, hospital discharge planners were all among those referring to this project.

Usually, low income seniors will go directly to the Medicaid program. It is our understanding that when nursing home admission is sought, that the client is referred to Medicaid and a cost-share arrangement is made after determination of eligibility in anticipation of the spend down of assets which qualifies the client.

The following figure from the EOA illustrates how clients are processed through the system.444

View of the Department of Health: The DOH states that:445

[f]rom a national perspective, there is no consensus as to the efficacy of a single entry point to publicly funded long term care services or to programs for older adults and disabled persons.

It is most important to note that the establishment of a single access point in this state will do little to alleviate one critical fundamental shortcoming; i.e., the lack of an adequate supply of affordable, appropriate, quality home and community-based services and of an adequate supply of institutional nursing home beds to which to refer individuals and families. It would be morally challenging for the State if, once able to "enter" the system, its clients were to find that there are no appropriate services to which they can be referred or which they can afford.

The DOH cited the recent conclusion of representatives from ten states judged by the Council of Governors' Policy Advisors as having exemplary programs for their aging populations that states cannot expect the use of a single access point to provide a "silver bullet" for service delivery dilemmas. It emphasized the pointed rejection of the single access model by the representatives from Florida, which has a very high number of elderly residents. Florida reportedly refrained from the single access approach when "practical, negative consequences became defeating and unacceptable, that is, long waits and lines" were created for the at-risk elderly.446

Recommendations of the Department of Health: According to the DOH, rather than treating the single access model as the panacea via which populations in need of long term care can be best served, the following four other approaches should be developed. Paraphrased, these are:447

1. Additional home and community-based services must be expedited. Government cannot be expected to subsidize all costs, thus clients with resources should begin to cover all or a part of the costs for their home- and community-based care. More providers need to understand that they must seek reimbursement from clients who can pay for their services.

2. A coordinated management information system with the use of a uniform intake form and with immediate access information and referral capabilities must be developed. As many agencies as possible should be networked by computers. They should use standard forms with special supplements for differing populations, as needed.

3. A uniform, coordinated, case management system must be developed. Clearly articulated policy on case management and its use is needed. For example, if private sector service or insurance entities acting as case managers who authorize services also act as direct providers of services, the resulting conflict-of-interest issues must be resolved.

4. A Long Term Care Ombudsman for home- and community-based services must be established. The OAA mandates such an ombudsman only for institutional care. One is also needed to assure quality of care for home- and community-based services.

The DOH makes several additional points (paraphrased below):448

• Vulnerable individuals will likely have to pay a greater share of the costs of their long-term care, institutional or home- and community-based, because of federal budget cuts.

• Research suggests that a segment of frail and vulnerable individuals with high levels of functional disability requires nursing home care for whom home- and community-based care is inadequate. The latter type of care cannot totally replace the former. Most persons in need of nursing home beds in Hawaii have much more exacerbated functional limitations than may be the case in mainland facilities. Nursing home residents in Hawaii tend to have three to five functional limitations.

• There are quite a number of these individuals in Hawaii who cannot get into a nursing home bed because there are not enough to go around.

• As the reliability of Medicaid funding erodes, nursing homes are already beginning to admit only those judged wealthy enough to pay for institutional care for the long term.

• As federal Medicare SNF cuts become a reality, hospitals will no longer continue to indefinitely accommodate patients who are waitlisted for long-term care facilities. A significant number of hospitals and nursing homes may close throughout the nation as a result of increasing fiscal constraints. This would be disastrous in Hawaii where more capacity is needed.

• The need for consistently available, quality hospital discharge planning will increase as more patients are anticipated to be discharged back to their own homes due to Medicare cuts. Current discharge planning occurs unevenly; it should be a routine core service that adequately prepares patients for discharge to some sort of long-term care.

• The need for more nursing beds in Hawaii must not be overlooked. Relatively few of the 1,000 CON-approved449 beds are expected to become reality. Past fiscal disincentives militating against the construction of these beds due to the State's inability to provide more matching funds for Medicaid-reimbursed beds will only be fueled by anticipated future federal cuts.

• The shortage of beds is the inevitable reality facing a person accessing the long-term care system regardless of where entry is obtained.

The DOH: Advantages and Disadvantages of a Single Entry Point: An advantage of an SEP conceded by the DOH is that it "may be easier for the consumer to identify." In addition, there may be some inherent efficiencies if the entry point has bilingual and other language resources and a multidisciplinary capability. However, the DOH cautions that such an entry point needs to be negotiated among the various entities currently serving as access to the system.

As for disadvantages, first, the DOH feels that an SEP may cause longer waits for individuals to receive services. Second, an SEP does not increase either institutional or home- and community-based services. Third, it does not assure quality of care. Fourth, it does not "ensure coordination or appropriation of existing services if discharge planning is not consistently available and if case management is not utilized judiciously."450 According to the DOH, aside from an SEP, the State also needs -- as a requisite component of a state health system -- a coordinated, integrated information system.451

View of the Department of Human Services: The DHS believes that a single entry point for the three designated populations can be implemented but it would be difficult.452 According to the DHS, the basic medical needs are the same for all three populations. Although some needs are different, it believes they can be worked out. All agencies and advocacy groups involved need to work out criteria for screening and assessment. Most of this work must be reduced to written guidelines and working screening tools, etc., so that individuals or teams performing actual screening and assessment need not be expert in all three populations. The DHS feels that the priority should be on health and medical needs -- who gets long-term care beds. Entry through the SEP must be mandatory for all public-pay clients regardless of whether institutional or home- and community-based services are authorized. The DHS also feels that the State must show a strong commitment to the SEP and provide strong leadership to make the system work.453

The DHS: Advantages and Disadvantages of a Single Entry Point: On the subject of Senate Concurrent Resolution No. 33 and Senate Resolution No. 27 (1995) (S.C.R. No. 33 and S.R. No. 27), the DHS testified regarding the advantages of an SEP: it could possibly simplify access to services, reduce the need for multiple assessments for each service utilized, and provide for more efficient use of resources.454 Currently, access is often hit-and-miss, often depending on who one knows: a provider, a friend of a provider, someone in government, etc. Nonetheless, the DHS cautioned that, because of inadequate funding, the system probably could not handle a sudden increase in clients resulting from enhanced access and better-known services due to increased public awareness. However, this is not strictly a disadvantage because the extent of program funding is independent of the type of access model. A possible advantage of an SEP could accrue if Congress authorizes states to mandate certain long-term care arrangements. For example, reduced federal funding may be accompanied by federal authorization for states to manage their own long-term care resources. In turn, states may wish to allocate their institutional and community-care resources by requiring even private-pay individuals to pass through a certain uniform screen.455

The DHS acknowledged that differences do exist among the three populations and they may be hard to work out in any standardized tool. This could be a disadvantage. (Note: If ease of implementation or amount of effort are goals, then the difficulties involved in working out differences would be a disadvantage. However, assuming that the required effort is put in, the degree of difficulty no longer remains a disadvantage for an SEP. Whether it stands up in actual use will depend on how well differences have been ironed out.)

The DHS cautions that shared screening and assessment tools must not be made too complicated. The need to encompass three target populations leaves open the danger that shared tools become unwieldy. The need to establish common ground may compromise the needs of some populations, a second disadvantage. Individual programs offered by various agencies and supported by various advocacy groups for differing populations may be weakened. A further disadvantage of an SEP is the possibility of creating another layer of bureaucracy.

View of the Executive Office on Aging: The Executive Office on Aging expressed its opinion on the pros and cons of establishing a single entry point for the three designated populations:456

We do not believe it is feasible to establish a single-entry point to all ages and disabilities because of the complexity of the needs and resources available for each. [We] do believe that better coordination will result in easier access for all clients. This includes cross training and cross referrals for the three groups. We are attempting to establish easier access for older adults and this is no easy task given the complexity of the system and the number of players. [Emphasis added]

On the subject of S.C.R. No. 33 and S.R. No. 27, the Executive Office and Aging testified with regard to an SEP that:457

Responding in a comprehensive, caring and knowledgeable manner requires substantial experience and training. The conditions and needs of vulnerable children, young adults, and older adults who are impaired can vary widely and require specific approaches tailored for individual needs. Accordingly, the capacity of any entry point is limited, in part, by the training and experience of the staff, the adequacy of funding, and the level of awareness of the patient and his or her family.

The extent of the cross training that may possibly be needed can be seen from the EOA's identification of the players involved in providing for the long-term care needs of, in this case, just the elderly. Depending on how an SEP is actually set up, these may include:458

1. The EOA & the county AAAs;
2. The Department of Commerce and Consumer Affairs;
3. The Department of Education;
4. The Department of Health;
5. The Department of Human Services;
6. The Department of Labor and Industrial Relations;
7. The Department of Transportation;
8. The University of Hawaii;
9. Federal agencies and programs including Social Security; and
10. Private programs and services.

The EOA: Advantages and Disadvantages of a Single Entry Point: The EOA did not cite any clear advantages of an SEP. It did point out that any movement towards some form of consolidation could be a cost-saving measure. The EOA cites experiments in Indiana that coordinated different funding sources for in-home services to the elderly that significantly reduced costs. However, the EOA expressed uncertainty that this would work for combined groups, citing different goals and outcomes for the three designated populations.459

The EOA does not believe an SEP is feasible. Rather, it believes in better coordination among agencies and providers, expanded use of technology for sharing information, and using standardized intake and/or referral forms. However, the EOA acknowledges that older adults consistently prefer obtaining services through one phone call, one intake form, and one centralized location. According to the EOA, increased linkages, especially using an electronic system, offer a mechanism for accomplishing this. The implication is that the convenience and simplified access that clients want can be achieved through system coordination without implementing an SEP.460

An important question was raised by the EOA concerning the meaning of "single access."461

If it ["single access"] means that one entity would accept, screen and determine interventions or referrals for long term care, then there is a problem about the management of a pool of resources, funds or entitlements and the case management aspect. We have seen evidence that those who case manage clients may best serve them by having no affiliation with direct services to avoid a bias in referrals.

That is, it is reasonable to infer the following disadvantages. First, conflicts-of-interest may arise if case management agencies which authorize services in an SEP are also allowed to provide direct services. Second, it is difficult to pool differing categorical funding streams. Third, it is difficult to manage previously separate screening, assessment, and case management services to create a coordinated delivery system. (Note: See the final chapter for discussion on the difference between one standard concept in an SEP as opposed to one entry point using an inflexible tool where entry is limited by geographical location or to a single-constituent agency whose expertise some may feel is not appropriate for all groups.)

The EOA lists several further disadvantages of an SEP. First, rural communities fear exclusion if an SEP means they must access the system in a more central location. They fear simple access may work in reverse for them, making it more difficult. Second, an SEP may slow down service delivery and lengthen existing waiting lists and create bottlenecks.462

The EOA reports that 16 states have "single entry points" for senior services with the term used to mean the pooling of common funding sources. According to the EOA, 29 states consider access and care coordination key policy issues. It further reports that many appear to be moving toward adopting a single entry point concept, but only for elder programs, not for all age groups and types of disabilities.463

Table of Contents

LRB Reports