Family well-being in a participant-directed autism waiver program: the role of relational coordination.

BACKGROUND: Massachusetts is one of a very limited number of states exclusively employing participant-direction to deliver autism waiver services to children. A crucial element of this waiver program is the work conducted by the state's Department of Developmental Services (DDS) staff and state-approved providers with waiver families to facilitate the implementation of the participant-direction model. Our study investigates the effect of the collaboration between state providers and family caregivers on family well-being. METHODS: We conducted a survey of 74 families who have been utilising waiver services for at least 6 months. Participants were asked to rate the coordination with providers as well as to report on parenting stress and impact of waiver services on family functioning. Data from in-home child and family assessments conducted by the state were also abstracted from program records. RESULTS: After controlling for a host of variables hypothesised to affect the outcomes of interest, we found that the family's view of how well they coordinated with formal providers is significantly associated all of the outcomes. Families who reported greater coordination with state providers experienced lower parenting stress and reported a more positive impact on family functioning. Child externalising behavioural problems and caregiver's health rating also contributed to parenting stress and family functioning. CONCLUSIONS: Our findings highlight the importance of establishing a collaborative partnership with waiver families in promoting family well-being. These results suggest that training and/or resources that foster team building and communication can positively impact family functioning among families with young children with autism.

A limited entitlement for community care: how members use services.

The goal of this paper is to show how members of three Social HMOs use a limited entitlement for community-based long-term care to meet their needs and solve their problems. The paper is based on in-home interviews with 48 aged Medicare beneficiaries who joined Social HMOs and are eligible for the entitlement. Members' experiences with case management (called service coordination), benefits for covered services, and cost-sharing requirements are explored. Members (and their informal caregivers) are found to have complex lives, into which community care fits (or does not fit) in varied ways, depending on preferences, experiences with providers, informal care, financial resources, and other factors. The paper provides insights into what kinds of problems people want to solve and how community care systems can be better designed to empower service users to solve them.

Resident-centered care in assisted living.

Residents (n = 396) at 20 assisted living (AL) settings were interviewed as were program staff and administrators to understand how resident choice, getting needed care, and a sense of community were promoted or hindered. Residents reported relatively independent and autonomous lives, yet many experienced unmet health and long-term care needs and limited participation in meaningful activities or community life. Strong support was found for the hypothesis that AL program and site features influence resident experiences, particularly in regard to supporting independent lifestyles, minimizing avoidable care problems, and increasing community involvement.

Five laws for integrating medical and social services: lessons from the United States and the United Kingdom.

Because persons with disabilities (PWDs) use health and social services extensively, both the United States and the United Kingdom have begun to integrate care across systems. Initiatives in these two countries are examined within the context of the reality that personal needs and use of systems differ by age and by type and severity of disability. The lessons derived from this scrutiny are presented in the form of five "laws" of integration. These laws identify three levels of integration, point to alternative roles for physicians, outline resource requirements, highlight friction from differing medical and social paradigms, and urge policy makers and administrators to consider carefully who would be most appropriately selected to design, oversee, and administer integration initiatives. Both users and caregivers must be involved in planning to ensure that all three levels of integration are attended to and that the borders between medical and other systems are clarified.

Policy choices for Medicaid and Medicare waivers.

This article reviews the authority and processes for issuing Medicare and Medicaid waivers, highlights waiver-based differences in states' home- and community-based (HCB) service systems, and critiques emerging efforts to capitate, integrate, and privatize the long-term care system. Potential pitfalls relate to payment rates, risk, service substitution, accountability, and drains on HCB infrastructure. Before merging HCB services into larger prepaid systems, policy makers are advised to examine implementation challenges, resist ad hoc fixes, clarify HCB entitlements, and strengthen current infrastructure.

The closing of a social HMO: a case study.

A social health maintenance organization (SHMO) integrates acute and long-term care and provides an extended-care benefit for elderly who are at risk of institutionalization. This article reports findings from a case study of the termination of the Group Health SHMO in Minnesota. Interviews were conducted with social workers and at-risk elderly who had been receiving long-term care through the SHMO. The case study examines the post-SHMO transition and the process of replacing SHMO care coordination and longterm care services. Most of the elderly and their caregivers indicated they were "losing ground"--that is, they were paying more or getting less care. Some were paying more for less care. Because they tended to switch to private-pay arrangements and to rely more on informal care, it appears that their care system became much less stable after the closing of the SHMO.

Client-centered case management. A survey of state programs.

With funding from the Administration on Aging, the National Resource Center: Diversity and Long-Term Care surveyed state administrators of programs serving elders in 24 states in 1994. This survey sought to document what written guidelines and training case managers receive in promoting client autonomy in care planning. In discussions with respondents and review of written materials provided by the states, surveyors explored whether clients received written information about services, the structure for seeking client input into care planning, and the structure for soliciting client feedback once the care plan was in place. Of the states included in this survey, few have developed and implemented guidelines or provide case managers training to promote client autonomy in the care-planning process. After reviewing the survey findings, the authors make two policy recommendations for states to consider in this area.

Integrating acute and long-term care.

Advocates of health system reform are striving to assure that a valuable new benefit for home- and community-based long-term care is included. Yet in many legislative proposals, a long-term care benefit is kept separate from the rest of the benefit package. Experience from the social health maintenance organization (social HMO) demonstration shows that for the elderly at least, community long-term care can be integrated with acute care, at a manageable cost. Acute and chronic disease and disability are experienced concurrently. Moreover, disability is not confined to a small group of permanently disabled persons but affects many other persons for short periods. Integration of long-term and acute care in a managed care model serving a broad population may promote more effective acute care and more efficient and affordable long-term care.

Stability of frailty in the social/health maintenance organization.

Although many long-term care (LTC) programs assume that the disabilities of their frail elderly participants are stable in nature, there has been suggestive evidence to the contrary. This study tests stability of disability among social/health maintenance organization (S/HMO) members who were judged eligible for admission into a nursing home. Identified persons were reassessed quarterly. By the end of 1 year, less than 50 percent were still considered to be nursing home eligible. Logit analysis revealed an increased likelihood of instability for persons who were newly identified as functionally disabled after hospitalization. Policy implications for capitated managed-care programs for the elderly are discussed.

The administration of eligibility for community long-term care.

Eligibility assessment systems for community long-term care vary widely across current programs funded by states and Medicaid and in proposals to expand federal funding. Improved equity and efficiency in both current and proposed programs will require better specification of eligibility criteria, timing and setting of assessments, language of assessment items, training of assessors, procedures for appeal and review, and consideration of the costs of care management. Recent research and demonstrations provide models and technology for more uniform approaches in national programs.

Economic rationality, the affordability of private long-term care insurance, and the role for public policy.

This study uses data from the 1984 panel of the Survey of Income and Program Participation (SIPP) of the U.S. Bureau of the Census to develop new estimates of the potential market for private long-term care insurance. It found that this market is potentially significant--especially among individuals in the 65-69 age group who are willing to spend up to 50% of their discretionary income on such insurance--but considerably lower than previous estimates, such as those of Cohen and colleagues (1987).

Adding long-term care to Medicare: The Social HMO Experience.

The rancor accompanying the repeal of most of the 1988 Medicare Catastrophic Act reflects both the national need to improve health and long-term care benefits for the elderly and the political obstacles to finding new sources of financing for such benefits. Neither the need nor the obstacles will go away, but policymakers are now likely to look for lower-cost, efficient, and privately funded alternatives. The authors have developed and tested one such approach: the Social Health Maintenance Organization (SHMO). Operating since 1985, the SHMO model integrates community-based, long-term care services into the managed, prepaid HMO design. The four test sites are adding long-term care to Medicare at no extra cost to the government and only modest premiums for the 17,000 current members. Although the benefits offer limited protection for long-term nursing home care, they do cover long-term care in community settings, where people tend to prefer to stay. Also, integration of the acute and long-term care systems improves the ability to respond to the medical needs of frail members, who also have high acute-care use. The SHMO's model of front-end, community-oriented, long-term care benefits integrated with Medicare appears to be a practical, affordable, and clinically appropriate way to address the rising concern with the lack of coverage and services for long-term care.

Financial performance in the social health maintenance organization, 1985-88.

Since early 1985, four social health maintenance organizations have delivered integrated health and long-term care services to Medicare beneficiaries under congressionally mandated waivers that included shared public-program risk for losses. Three of four sites had substantial losses in the first 3 years, primarily because of slow enrollment and resultant high marketing and administrative costs. After assuming full risk, two of the three showed surpluses in 1988. Service and management costs for expanded long-term care were similar across sites and were affordable within the framework of Medicare and Medicaid reimbursement and private premiums.

Variations in care planning practice in the social/HMO: an exploratory study.

In this exploratory study, we examined the influence of provider settings, organizational structures, and community climates on long-term care resource allocation. We analyzed care plan decisions at each of the four Social/HMO sites for the same seven clients. Differences by site were found in eligibility determination and allocation of care plans, as well as types and mix of services prescribed. Issues are raised about the influence of provider settings on legitimation of types of needs and clients that are served.

Case management for frail elders: the Robert Wood Johnson Foundation's Program for Hospital Initiatives in Long-Term Care.

This evaluation of 24 hospital-based case management services found that case management could take a variety of forms, ranging from postacute medical management service to planning community-based care for potential long-term care users. Future research should concentrate on documenting the costs and outcomes of various models of case management in acute care settings.