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full-time RN. Residents who had access to a full-time RN were about half as likely

to transfer to a nursing facility as those in facilities without this level of skilled

nursing. To support aging in place, some state regulations allow residents to sign

negotiated risk contracts, in which they agree to accept responsibility for out-

comes related to the ALF level of care. These contracts allow residents to remain

in the facility when their needs indicate that they are eligible for the level of care

provided in nursing homes (Zimmerman et al., 2005), such as hospice services.

Zimmerman and colleagues (2003) examined differences between ALF and

nursing homes and found that both facility types have problems that affect qual-

ity of care including difficulty with staff retention. Findings that organizational

culture has a strong relationship to staff satisfaction, values of teamwork, and

workers’ attitudes toward their job (Sikorska-Simmons, 2005) support culture

change movements that are seeking to impact a variety of types of facility care.

Since approaches such as the Green House model, Wellspring, and the Pioneer

Network are relatively new, comprehensive and systematic evaluations of their ef-

ficacy and replicability are lacking (Callahan, 2005).

PECIAL

ARE

NITS

Special care units have flourished in the past 2 decades, largely due to public de-

mand for better residential care for people with dementia. Public support em-

anated from family caregivers and advocacy organizations who witnessed poor

care inflicted on their loved ones by insensitive or poorly trained nursing home

staff. Ideally, SCU are distinctly different from traditional care settings. However,

determining what is “special” about SCU is challenging given that there is no

universally accepted definition of this facility type (Ohta & Ohta, 1988; Sloane

et al., 2001) and no national quality of care standards relating to treatment of de-

mentia (Zimmerman & Sloane, 1999). Experts have disagreed on which design

and programming features are necessary for a basic-level SCU treatment, leading

to few states developing minimum guidelines (Gerdner & Beck, 2001). This incon-

sistency negatively impacts both family caregivers seeking care for their loved

one and researchers attempting to evaluate program effectiveness. Many re-

searchers and policy analysts have raised the concern that the SCU label may be

used as a marketing ploy, creating a mechanism for existing facilities to charge

higher rates for the same level of care as residents in their general population

(Boling & Gwyther, 1991; Davis et al., 2000; Gerdner & Buckwalter, 1996; Ohta &

Ohta, 1988; Sloane et al., 2001; U.S. Congress, Office of Technology Assessment,

1992; Zimmerman & Sloane, 1999).

Although residents with dementia may be able to function better in a special-

ized care setting, the potential for SCU to effectively improve functioning is chal-

lenging given that the severity and behavioral expression of dementia is different

across individuals (Sloane et al., 2001). Recent estimates suggest that over 50% of

the nursing home population has dementia (Sloane et al., 2001; U.S. Congress, Of-

fice of Technology Assessment, 1992). Without specific ways to define a priority

group of individuals with dementia based on their cognitive impairment or func-

tioning levels, SCU admit residents based on the facility’s own criteria, which

minimizes the ability to evaluate SCU effectiveness across different programs.

Very few states have created statutes or even operational guidelines on SCU

(Gerdner & Beck, 2001). Lack of state oversight exists for several reasons. The first

Community- and Facility-Based Care 477

is that SCU do not have clear or consistent objectives for their specialized treat-

ment. In fact, several models across states use strategies and treatment protocols

that are in direct conflict with each other (Day, Carreon, & Stump, 2000; Gerdner

& Beck, 2001; U.S. Congress, Office of Technology Assessment, 1992). For example,

SCU do not have a consistent or regulated staff-to-patient ratio. Although some

units offer higher staffing levels than traditional care facilities, SCU must adhere

to the regulatory standards of the particular auspices where they function. As-

sisted living facilities have a lower staff-to-resident ratio than nursing homes and

generally can employ unlicensed or uncertified staff as care providers. Also, exist-

ing facilities with SCU adjuncts sometimes rotate staff through the unit in an ef-

fort to maximize the care provider labor pool and diminish additional staff

burnout (U.S. Congress, Office of Technology Assessment, 1992). Some programs

are employed to reduce staff burnout, such as staff support networks and special-

ized training on managing residents with dementia. However, there are no manda-

tory training requirements for dementia-specific content or the number of training

hours received.

Overall research has been inconclusive regarding the effectiveness of SCU to

uniquely serve individuals with dementia. First, the lack of uniformity across

SCU regarding whom they serve and how they operate negatively influences both

the quality and the generalizability of research efforts (Chappell & Reid, 2000;

Ohta & Ohta, 1988; U.S. Congress, Office of Technology Assessment, 1992; Zim-

merman & Sloane, 1999). Second, it is impossible to assert that the special fea-

tures in SCU embedded in larger facilities are beneficial only to those individuals

with dementia (Chappell & Reid, 2000; Gerdner & Beck, 2001). Most nursing

home residents benefit from features such as staff training, avoiding use of re-

straints, and flexible care routines (Chappell & Reid, 2000), which neutralize the

need for special consideration for those with dementia. Additionally, many spe-

cial features, such as environmental modifications, are often lumped together as

one large intervention, making it difficult to separate the impact of some features

compared with others (Day et al., 2000).

EVIDENCE ON COMMUNITY-BASED MODELS OF CARE

This section begins with a brief review of the effectiveness of community-based

services to substitute for a delay in nursing home use. We then review specific ev-

idence related to the effectiveness of case management, adult day care, and hos-

pice to provide therapeutic and compensatory support to older adults with

chronic conditions. A key feature of all three models of community-based care is

their focus on coordinating and connecting services for clients and their care-

givers across a vast health and social services continuum.

Several demonstrations were conducted to test the extent to which community-

based options actually offered alternatives to facility-based care by improving

health status and reducing health care costs through integration and coordination

of health care and supportive services. Some programs showed that alternatives

were cheaper, but more careful research showed that people in nursing homes

were in general more impaired then people living in the community. William

Weissert (1976) was among the first to conduct randomized controlled studies

comparing the rate of nursing home placement among people who used adult day

health care services compared to those who did not. His findings suggested that

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these programs complemented but did not substitute for nursing home care. Later

research showed that those who used community-based services in general

needed and benefited from them, but they did not have lower rates of nursing

home admission, and use of community-based care actually raised overall health

care costs (Weissert et al., 1988). Weissert also reported that when there was re-

duction in nursing home utilization, the savings were usually small, and commu-

nity services had a limited effect in producing changes in health status.

ASE

ANAGEMENT

Case management is an emerging supportive service that facilitates access to ap-

propriate health and social services for high-risk older adults and their caregivers

through assessment, counseling, and advocacy (Raiff & Shore, 1993; Scharlach,

Giunta, & Mills-Dick, 2001). A major strength of case management is its ability to

transcend traditional health care boundaries by coordinating and linking services

across medical, behavioral, and social service environments. Yet despite the

prevalence of case management practice, there has been little evidence of efficacy

and effectiveness in application of these models. What studies do exist on case

management models with older adults often lack rigor or contain methodological

weaknesses that result in questionable findings (Lee & Tuljapurkar, 1998). In the

past few years, several studies on the efficacy of case management with older

adults have been conducted using experimental designs with randomized control

groups (Boult et al., 2000; Engelhardt et al., 1996; Fordyce, Bardole, Romer,

Soghikian, & Fireman, 1997; Gagnon, Schein, McVey, & Bergman, 1999; Leveille

et al., 1998; Marshall, Long, Voss, Demma, & Skerl, 1999; Morishita, Boult, Boult,

Smith, & Pacala, 1998; Naylor et al., 1999; Schore, Brown, & Cheh, 1999; Weuve,

Boult, & Morishita, 2000). These projects aimed to improve health and daily func-

tioning, reduce medical service use, decrease rates of depression, and increase

client satisfaction, among other goals. Results of these studies are consistently in-

consistent; some reported decreased rates of service use (Leveille et al., 1998;

Naylor et al., 1999), and others reported no difference in or increased service use

for those receiving this service (Boult et al., 2000; Fordyce et al., 1997; Gagnon

et al., 1999; Long & Marshall, 1999; Schore et al., 1999). Similarly, levels of satis-

faction and functioning for the case management group were also inconsistent

across studies (Gagnon et al., 1999; Marshall et al., 1999; Morishita et al., 1998).

Moreover, none of the studies measuring depression level were actually able to

impact depression through their interventions (Engelhardt et al., 1996; Leveille

et al., 1998; Naylor et al., 1999).

Current Models of Case Management The most prevalent case management models

serving older adults with chronic conditions utilize managed care systems to

achieve their goals of improving quality of care and quality of life and cost sav-

ings. Here we summarize findings on a number of these models, including the

PACE program, S/HMO, and case management models that link managed health

care with community agencies.

The premise of the PACE model is that through monthly fixed payments from

Medicare and Medicaid (for those dually eligible) or through private pay, ser-

vices can be expanded beyond what is traditionally provided by either Medicare

Community- and Facility-Based Care 479

or Medicaid alone (Eng, Pedulla, Eleazer, McCann, & Fox, 1997). The combined

fixed payments allow for the additions of community service provision, such as

homemaker, respite care, home-delivered meals, and other community-based ser-

vices. The evaluation of the PACE model revealed reductions in use of institu-

tional care and rates of short-term hospital use compared to the overall

utilization by the Medicare population (Wieland et al., 2000). These changes in

service use contributed to the overall cost-effectiveness of the model (Eng et al.,

1997). While these results are impressive, to date the PACE model is almost exclu-

sively focused on serving the dually eligible, limiting the applicability of this

model to the majority of Medicare recipients.

The S/HMO was implemented, in part, to determine whether additional cover-

age for long-term care with associated case management could produce sufficient

savings to allow plans to offer chronic care benefits without increased cost to

Medicare. Although studies shortly after implementation of the model were in-

conclusive, a recent study found significant reductions in nursing home use

among those in the S/HMO (Fischer et al., 2003).

Within traditional Medicare managed care services, Kaiser Permanente

has developed several innovative solutions to improve patient outcomes for

members with chronic conditions including geriatric care management and dis-

ease management. The geriatric care management program uses a social case

management approach to assist patients by coordinating care in both the health

care and community-based service systems (Enguidanos et al., 2003). This ser-

vice is mostly administered at the health care facility but has some provisions

for home-based assessments. The disease management programs provide

telephonic, disease-focused management and support to members. Both of

these programs have demonstrated positive outcomes for individual diseases

but lack the ability to manage multiple chronic conditions and their related

acute episodes.

Another case management model linked to managed care, the Care Advocate

Demonstration Program, was developed to collaborate across medical and social

service delivery systems by offering a social care management intervention to

high-risk older adults enrolled in a Medicare managed care health plan (Shan-

non, Wilber, & Allen, 2006; Wilber et al., 2003). This program used a brokerage

model of case management, in which case managers individualized referrals

within a service delivery network that, for the most part, lacked formal coordina-

tion of providers (Scharlach et al., 2001). Care advocates assessed participants’

psychosocial and functional needs to identify immediate and long-term service

needs, offered individualized information, and provided direct links to HCBS

and medical services as appropriate (Alkema, Reyes, & Wilber, 2006). Findings

indicated that characteristics associated with particular HCBS use varied exten-

sively depending on the service provided. Age, sex, social support, living situa-

tion, education, specific functional impairments, heart conditions, and sensory

impairments at baseline significantly predicted utilization in the six different

HCBS categories (Alkema et al., 2006). Also, those who participated in the 12-

month case management intervention had significantly lower levels of mortality

than a comparable control group, increased primary care physician visits, and re-

duced hospitalization (Alkema, Wilber, Shannon, & Allen, 2007; Shannon et al.,

2006). This coincides with previous studies that found decreased mortality

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when high-risk older adults participated in integrated community-based pro-

grams (Albert, Simone, Brassard, Stern, & Mayeux, 2005; Chatterji, Burstein,

Kidder, & White, 1998; Shapiro & Taylor, 2002) and comprehensive geriatric as-

sessment programs (R. L. Kane & Kane, 2000; Reuben, 2002), both of which used

case management as a central intervention component.

Project IMPACT (Improving Mood—Promoting Access to Collaborative Treat-

ment) is another successful collaborative project that used case management as

the bridge between primary care and mental health services (Unützer et al.,

2002). This multisite study used case managers, physicians, and psychiatrists in

primary care clinics to provide clinically integrative treatment and support to

community-based older adults with depression. Results found that those in the

intervention group reported a significant reduction in depression score, im-

proved physical functioning, and improved quality of life compared to usual care

patients. Given that older adults generally receive mental health treatment from

primary care physicians rather than specialized psychiatric services, this proj-

ect’s potential for successful replication in other primary care venues to reduce

depression in older adults is high.

DULT

ARE

Several national studies examined characteristics of participants and the out-

comes associated with ADC participation (Hedrick, Rothman, Chapko, Inui,

Kelly, & Ehreth, 1991; Mace & Rabins, 1984; Von Behren, 1989; Weissert et al.,

1989). Much of the research has examined the ability of ADC programs to sub-

stitute for nursing facility care and the extent to which these programs are cost-

effective (Capiman & Gregory, 1984; Weissert, Wan, Livieratos, & Katz, 1980).

Focusing on participants with dementia, Gaugler and colleagues (2003) found

that those who used small amounts of ADC and those who used large amounts

had a higher likelihood of placement. For those with moderate amounts, risk

was reduced. More recent studies have indicated that ADC participants with

Alzheimer’s disease have an increased risk of institutionalization (McCann

et al., 2005). Yet even with increase risk for nursing home placement, ADC re-

sults show significant positive effects on well-being and dementia symptoms

(Zank & Schacke, 2002). Those in ADC stabilized or improved on various mea-

sures, whereas the untreated control participants worsened. Follow-up data

showed a significant decline in health for the control group compared with ADC

participants.

In addition to supporting older adults with functional or cognitive disabilities,

ADC also offers respite to caregivers by providing supervision (Family Caregiver

Alliance, 2003; Kirwin, 1991; Zarit, Stephens, Townsend, & Greene, 1998). Studies

assessing the ability of ADC to reduce caregiver stress over a short- and long-

term treatment length showed decreased depression and role overload measures

(McCann et al., 2005). Zank and Schacke (2002) evaluated the ability of German

adult day care programs to affect caregiver outcomes. Caregivers did not show a

significant change on caregiver affective measures, but anecdotal reports ac-

knowledged reduced burden, especially related to freedom from supervision re-

sponsibilities. Quayhagen and colleagues (2000) similarly found that caregivers

whose spouse participated in a short-term day care group reported significantly

decreased hostility toward their spouse. Research has indicated that ADC re-

Community- and Facility-Based Care 481

duces caregiver stress and burden, potentially making it easier for families to

continue caregiving at home.

OSPICE

Since the initial conception of hospice as a Medicare benefit, it has generally been

accepted that Hospice care results in improved care for terminally ill patients at

reduced cost. This assumption is based on evidence arising primarily from

prospective and retrospective studies. Numerous studies have documented the

ability of hospice care to improve satisfaction with medical care among terminal

patients and their family members (Baer & Hanson, 2000; Greer et al., 1986;

Miceli & Wojciechowski, 2003; Teno et al., 2004), with one study finding that fam-

ilies felt that they received greater benefits from hospice care with longer enroll-

ment prior to death (Rickerson, Harrold, Kapo, Carroll, & Casarett, 2005). In a

study comparing end-of-life experiences among family members of decedents,

Teno and colleagues found that family members of those receiving hospice care

were more satisfied with the physical and emotional comfort received. Compared

to patients who died at home receiving home health care, in the hospital, or in the

nursing home, family reports among those receiving hospice were overall more

favorable in terms of pain control, emotional support, and quality of care. These

findings were also consistent among family members of nursing home residents,

where family members receiving hospice reported improved quality of care and

symptom relief following hospice care (Baer & Hanson, 2000).

Hospice use has also been associated with reductions in aggressive care in the

terminally ill (Baer & Hanson, 2000; Greer et al., 1986). Although data from the

National Hospice Study, a randomized controlled trial, did not find that hospice

improved quality of life (Greer et al., 1986), subsequent analysis of the data set

found that hospice care did improve quality of death (Wallston, Burger, Smith, &

Baugher, 1988). Additionally, a retrospective cohort study suggested that hospice

may be associated with longer survival time (Pyenson, Connor, Fitch, &

Kinzbrunner, 2004). Hospice care has also been associated with increased likeli-

hood of dying at home, a preference held by the majority of Americans (Brazil,

Howell, Bedard, Krueger, & Heidebrecht, 2005; Townsend et al., 1990).

Although the evidence of the effectiveness of hospice is equivocal, there is a

considerable body of literature that attests to the need for better care at the end of

life. A recent report card on “Death in America” rated each state in terms of its

ability to provide adequate patient care at the end of life (Robert Wood Johnson

Foundation, 1999). Specifically, the report illustrated that no state excelled in en-

rolling at least half of decedents over 65 in hospice before death, and only one

state (Arizona) came close.

The evidence for hospice care is also mixed in terms of cost effectiveness, but

qualitative and quantitative research supports improved patient and family out-

comes associated with receipt of hospice care. In line with these findings and

thorough and extensive documentation attesting to the need for improving end-

of-life care, the majority of current research on new models of end-of-life care

have focused on developing and testing palliative care programs and models. Pal-

liative care programs are largely built on the interdisciplinary model and the pal-

liative (e.g., pain and symptom relief) goals of the hospice model, while providing

services earlier upstream (greater than 6 months) prior to death. Preliminary

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data arising from these models support both improved quality of care as well as

potential cost savings. Specific examples of community-based palliative care pro-

grams are the In-Home Palliative Care program and the CALL program.

-H

OME

ALLIATIVE

ARE

Through reallocation of existing resources, Kaiser Permanente developed the In-

Home Palliative Care program that provides comprehensive, multidisciplinary in-

home care to terminally ill patients with the intent of enhancing comfort to and

improving the quality of a patient’s life, as opposed to attempting to achieve a

cure (Brumley, Enguidanos, & Cherin, 2003). The goals of this intervention are

pain control, symptom management, quality of life enhancement, and spiritual

and emotional comfort for the patient and family. Unlike hospice, patients do not

have to forgo curative care for palliative care services; they may elect to continue

curative treatment while also receiving symptom control, education, and bereave-

ment services. The core team (physician, nurse, and social worker with the pa-

tient and family) is responsible for coordinating and managing care across all

settings and providing assessment, evaluation, planning, care delivery, follow-up,

monitoring, and continuous reassessment of care. Physicians conduct home visits

and are available along with skilled nursing services on a 24-hour on-call basis. In

addition, advanced care planning is provided that involves patients and their

families in making informed decisions and choices about end-of-life care. Studies

have found that the In-Home Palliative Care model is successful in reducing both

emergency room visits and hospitalizations, resulting in costs that range from

37% to 45% less than terminally ill patients receiving traditional care (Brumley

et al., 2003; Brumley & Hillary, 2005; Enguidanos, Cherin, & Brumley, 2005). Fur-

ther, patients enrolled in the palliative care program had improved satisfaction

with care at 30 and 60 days following enrollment, compared to no change among

those receiving traditional medical services. Palliative care patients were also

more likely to die at home than those receiving usual care (Brumley et al., 2003).

OMPREHENSIVE

, A

DAPTABLE

, L

IFE

-A

FFIRMING

, L

ONGITUDINAL

ALLIATIVE

ARE

ROJECT

The premises of this model are that

end of life care must encompass the larger context of the dying person’s life; that

life is lived in the community, not within the health care system; and that excellent

medical care and symptom management are necessary but not sufficient in helping

the patient and the family experience good end of life care. (London, McSkimming,

Drew, Quinn, & Carney, 2005, p. 1215)

To accomplish this, the Comprehensive, Adaptable, Life-Affirming, Longitudinal

(CALL) Project team developed care plans for patients following a comprehensive

assessment. An array of services were tailored specifically to the needs of the pa-

tients and their families and were provided both within and outside of the tradi-

tional health care system, following patients as they transitioned through various

levels of care. These services included coordination of health care visits, educa-

tion and support, advance care planning, in-home support and assistance, a vol-

Community- and Facility-Based Care 483

unteer companion, bereavement follow-up for families, and connection to other

health care and community-based resources as needed (London et al., 2005). Re-

sults of a longitudinal study revealed that those enrolled in the CALL program

had low hospital admissions (29% of the sample), 48% were enrolled in hospice

prior to death, and 38% died at home.

Case Study and Evidence-Based Practice Applications

Mrs. C, 78, was a recent widow who had been diagnosed with diabetes and con-

gestive heart failure. After hearing Mrs. C’s dog barking throughout the night, a

neighbor checked in on her in the morning and found her on the floor unable to

get up. When the paramedics arrived, Mrs. C could not accurately answer ques-

tions about her age, birth date, or where she lived. She had always been fiercely

independent, but since the death of her husband she had struggled to pay her

bills, keep her apartment clean, and adequately prepare food for herself. She told

the paramedics that she has plenty of money to pay for her care as she was related

to the king of England and had a grandfather in Montana who willed her money.

However, Mrs. C did not remember if she had eaten in the past few days. Her

companions, two parakeets and a small dog, appeared to be hungry and thirsty.

The paramedics called an ambulance and Mrs. C was taken to the emergency

room, where her immediate medical condition was evaluated. She was admitted,

her condition was stabilized, and her daughter, who lived in another city several

hours from Mrs. C’s apartment, was notified. When she arrived at the hospital

Mrs. C’s daughter was told that after she became stable, Mrs. C would be dis-

charged to a skilled nursing facility for short-term rehabilitation. While she was

in the facility, a member of Mrs. C’s church arranged for the care of her pets. Mrs.

C’s physical and cognitive condition improved over the next several weeks at the

skilled nursing facility; she was able to participate in self-care, and her diabetes

seemed to be better controlled. She was discharged from rehabilitation to custo-

dial care. Unlike the rehabilitation care, which was covered by Medicare, Mrs. C

now had to pay out of pocket for her care. After 2 months of paying, Mrs. C had

depleted her assets, making her eligible for Medicaid. Her functioning continued

to improve and she resolved to leave the facility, but she had lost her apartment.

Concerned about Mrs. C’s ability to live alone, her daughter insisted that she live

with her.

Mrs. C’s daughter, who had a full-time job and was a single mother with two

teenage children, suddenly found herself responsible for the care of her mother, a

dog, and two birds. Neither Mrs. C’s physician nor the staff at the nursing facility

could make recommendations for services; however, the social service director at

the nursing facility suggested that a case manager might be helpful. To find an

appropriate case management service, Mrs. C’s daughter took a sick day and

spent it making multiple phone calls to a variety of providers. Eventually she lo-

cated a case manager from a local senior center who was able to make a home as-

sessment. The case manager discussed ways her home could be made more

elder-friendly and referred Mrs. C to a community agency that offered Medicaid-

waivered services that included adult day care for continued monitoring and so-

cial support. Mrs. C enjoyed the adult day care program, and the program

provided peace of mind to her daughter while she was at work, reducing her

stress from the demands of caregiving.

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Over time her daughter noticed that Mrs. C was becoming increasingly con-

fused, disoriented, and agitated. Despite the support from the day care service,

Mrs. C’s daughter found it increasingly difficult to manage her job, her parental

responsibilities, and the care and attention her mother required. After the social

worker at the day care program suggested that Mrs. C might need more care than

they could provide, a comprehensive assessment was arranged, which indicated

that Mrs. C has an irreversible dementing illness. Fortunately, she lived in a state

where Medicaid covered assisted living, and the care manager helped locate sev-

eral possible facilities for her daughter to visit and choose from. She decided on a

facility that included a special care unit where Mrs. C was permitted to take her

birds. Mrs. C. adapted well to the facility and the homelike environment. She

seemed content, and her daughter was pleased that her mother was happy and

well cared for. However, about 8 months after moving to the facility, Mrs. C was

diagnosed with untreatable liver cancer. Her daughter worked with Mrs. C’s

physician and the case management agency to arrange for hospice care in the fa-

cility. Three months later, Mrs. C died peacefully in the assisted living facility

with family by her side.

EVIDENCE-BASED POLICY RECOMMENDATIONS

AND FUTURE RESEARCH DIRECTIONS

Community- and facility-based care providers work hard to provide high-quality

service to their clientele, yet often do so independently of each other. Lack of ser-

vice collaboration exists both within and between the health care, supportive ser-

vices, housing, and transportation arenas. Each agency determines its own

specific service eligibility, creates a unique assessment and care plan, and keeps

separate records. Older adults and caregivers may have difficulty identifying, ac-

cessing, and arranging for services. Conversely, they may receive duplicative ser-

vices, including engagement from multiple case managers who inquire about the

same basic information and provide similar interventions. For those who need

services from many agencies, this process becomes tedious and time-consuming.

It is particularly inconvenient for working family caregivers who must arrange

time to attend each individual assessment. This confusing mass of disconnected

programs results in service gaps, duplication of services, budgetary and human

capital inefficiencies, and ultimately frustration from consumers, caregivers, and

administrators (Alkema, 2003).

Multiple and often competing forces contribute to service fragmentation, in-

cluding the following:

• Heterogeneous consumer needs

• Various provider types and models

• Differing professional perspectives on appropriate care

• Numerous and mutually exclusive funding streams

• Disconnected bureaucratic authority with programs under numerous

auspices

• Lack of an integrated information system for service provider and con-

sumer use

• Incompatible federal, state, and local level regulatory requirements

• A variety of geographic service areas and capacities (Alkema, 2003)

Community- and Facility-Based Care 485

OLUTIONS

Solutions to these issues necessitate the system’s changing in the following eight

areas (Alkema, 2003):

1. Consumer-directed care: Older adults have clearly expressed a desire to navi-

gate and participate in the service delivery system, with the support of pro-

fessional expertise if needed (Squillace & Firman, 2002). Several sites of the

Cash and Counseling Demonstrations have shown that consumers are very

satisfied with having greater control over hiring and training of personal

care workers, without increased costs to the state (B. Phillips & Schneider,

2002). When consumers cannot directly participate in this model due to

physical or cognitive limitations, this consideration should be extended to

family caregivers acting as proxies. State and local agencies should revise

current programmatic structures to maximize consumer-directed care and

consumer choice to the extent possible.

2. “No wrong door” approach: A system should be created that has true or per-

ceived seamless service delivery from the consumer’s perspective. This pro-

posal requires redefining service delivery from singular, unconnected

programs to a broad, holistic service continuum that embraces older adults

at all functional levels (Figure 17.1). Collaborative linkages between depart-

ments and programs should ensure that consumers connect with any ser-

vice they need, regardless of what entity they encountered first.

3. Enhanced collaboration between aging and disability networks: The aging and

disability networks both have constituencies that are consumers in the

long-term care service delivery system. Both groups, using the Olmstead de-

cision as a launching pad, should collectively advocate for eliminating insti-

tutional barriers to collaborative, community-based service delivery, such

as disconnected information systems, rigid eligibility requirements, and in-

dividualized funding streams.

Improved end-of-life care: Given that Medicare and Medicaid will most likely re-

main the largest hospice payers in the country (Fox, 1999; Lynn, Wilkinson, &

Etheredge, 2001; Medpac, 2002), restructuring the current hospice benefit may

be necessary to increase access for those with diverse medical conditions and

those residing in facilities. However, Huskamp, Buntin, Wang, and Newhouse

(2001) found that simply expanding the current benefit structure will not be

sufficient in addressing the gaps in end-of-life care. Smits, Furletti, and

Vladeck (2003) recommend that centers for Medicare and Medicaid services

(CMS) and the Agency for Healthcare Research and Quality support palliative

care research to gather evidence for the effectiveness of new, innovative end-

of-life care models. Education and training of our current and future health

care providers must also be a critical part in improving care for the dying

(Vladeck, 1999). Thus, the role of policy makers in end-of-life care reform must

include advocating for increased funding and support for research and

demonstration projects. Further, incremental reforms in Medicare and Medic-

aid are needed so that end-of-life care will be better integrated into clinical

practice and not relegated to the last months or even days of life.

5. Ongoing consumer evaluation of older adult service delivery systems: Due to a

variety of factors, the future cohort of older adults will be considerably