Deinstitutionalization Policies Research Articles

The effect of deinstitutionalization on the longitudinal continuity of mental health care in the Netherlands.

Deinstitutionalization has been accompanied by a decreasing continuity of care in a number of countries. This study evaluates the effects of the Dutch model for deinstitutionalizing mental health care. Details of users and their use of community- and hospital-based services between 1990 and 1999 were retrieved from the Groningen case register. The time between discharge from the hospital and the first subsequent community-based contact was the primary indicator for changes in continuity of care. The total proportion of discharges from hospital-based mental health care followed within 6 months by community-based care increased by 11% due to the improved availability of day treatment and home treatment. In terms of median survival time, aftercare in the years 1998/1999 was delivered more than twice as fast as in the years 1990/1991. Study results supported the hypothesis in Dutch deinstitutionalization policy that the continuity of mental health care would benefit as to its longitudinal dimension.

Criminality and Violence Among the Mentally Disordered: The Stockholm Project Metropolitan

Criminality and Violence Among the Mentally Disordered: The Stockholm Project Metropolitan

Use of routinely collected data on psychiatric in-patient care

Since the start of the National Health Service, data have been collected on admissions to psychiatric in-patient units, first as the Mental Health Enquiry, then as part of Hospital Episode Statistics. Some details have changed but many have stayed remarkably consistent. Published literature on the wide range of research and policy work undertaken using this data source is reviewed. Early work was central to the government's deinstitutionalisation policy in the early 1960s. Subsequent studies cover a wide range of epidemiological and health services research issues. A new statistical base, the Mental Health Minimum Data Set, covering individuals receiving all types of health care is currently being set up. This will supplement (but not replace) admission statistics.

Community integration of elderly mentally ill persons in psychiatric hospitals and two types of residences.

Deinstitutionalization policy in the Netherlands has given rise to two new living arrangements for elderly long-term psychiatric patients. Both involve accommodation in mainstream residential homes for elderly persons, either concentrated in a specialized care unit or dispersed throughout the facility. The authors studied the effectiveness of these two housing models for the community integration of such residents compared with accommodation in a psychiatric hospital. Three subsamples were selected: 49 residents in six units of concentrated housing, 47 residents in 12 units of dispersed housing, and 78 patients in 24 psychiatric hospital units, for a total sample of 174 participants. These samples were compared in a quasi-experimental, posttest-only design that used four measures of community integration: amount of perceived influence over one's daily life, involvement in social activities, social network size, and frequency of visits received from members of the network. To adjust for differences in the populations, the hospital patients were matched to the residential home residents, and confounding factors were controlled for. Residential homes afforded more privacy, were closer to public services, and had a more diversified population than psychiatric hospitals. Participants in dispersed housing experienced more personal influence over their lives than did hospital patients. Concentrated-housing participants were less enterprising and had smaller social networks. The three groups did not differ in the frequency of visits received from network members. Community-integrated facilities do not necessarily imply community-integrated residents. Only dispersed-housing residences were an improvement over hospitals, and then solely in terms of residents' influence over their own daily lives. The advantage of the dispersed-housing model is that it resembles independent living while its institutional nature offers structure and protection.

International experiments in integrated care for the elderly: a synthesis of the evidence

The OECD countries have recently promoted policies of deinstitutionalisation and community-based care for the elderly. These policies respond to common cost pressures associated with population aging, and the challenge of providing improved care for the elderly. They aim to substitute less costly services for institutional ones, to improve patient satisfaction and decrease expenses. However, views concerning their success are mixed. We took a comparative cross-national approach to examine the evidence, to identify common features of an effective system of integrated care, and to examine the potential of such models to positively affect care of the elderly, and public finances. We conducted a systematic review of recent demonstration projects testing innovative models of care for the elderly in OECD countries. Projects included aimed to create comprehensive integration of acute and long-term care services, and were evaluated using a comparison group. For each project, we report available results on rates of hospitalisation, long term care institutionalisation, utilisation and costs, impact on process of care, and health outcomes. In addition, the following common features of an effective integrated system of care were identified: a single entry point system; case management, geriatric assessment and a multidisciplinary team; and use of financial incentives to promote downward substitution. Community-based care can impact favourably on rates of institutionalisation and costs. Comprehensive approaches to program restructuring are necessary, as cost-effectiveness depends on characteristics of the system of care. Expansion of successful programmes to achieve widespread use remains a critical challenge.

Costs of deinstitutionalization in a rural catchment area in The Netherlands.

In contrast to many other countries, The Netherlands left the initiative in deinstitutionalizing mental health care to the traditional providers of mental health services. The goal of this study is to determine the effect of this policy on the allocation of mental health care resources to services. All 20- to 64-year old users and their use of community- and hospital-based services between 1990 and 1999 were retrieved from the Groningen case register. Service utilization was combined with the direct unit costs of these services for the 1999 price level. Changes in the population as to size and age were taken into account. In 1999 the direct costs of mental health care were Euro 268 per adult inhabitant of the register area, which is 9% higher than in 1990. Costs increased most in the early 1990s before deinstitutionalization policy took effect. From 1993 and onwards the reduced length of stay in the hospital was the main cause for the decreased costs of in-patient care. These savings equalled the increased expenditures for day-treatment, sheltered residences and home-treatment, even though the unit costs of these types of community care are much lower than the unit costs of admissions. This was not caused by an increasing number of new clients, but was a result of longer periods of care during a larger number of years. These findings are in accordance with Dutch mental health care policy, which aims at prolonged care and aftercare outside the hospital whenever possible.

The closure of Nastola care home: A longitudinal study on deinstitutionalisation

<span>The Nastola Care Home, an institution housing 95 people with intellectual disability, was closed in 1989, with residents moving out into small community group homes of five people each. An intensive process of reorganization, including unitisation and staff training, occurred within the institution before its closure. The adaptive behaviour of 66 residents was measured a total of seven times, with the first phase beginning two and half years before the move, and the second phase extending to two years after the move. The results indicated an increase in adaptive skills of the residents in both phases. Challenging behaviour of the residents decreased before the move, but not afterwards. Community participation and family contacts with the residents increased after the move. With regard to daily care practices, there was a major change from institution‐oriented practices in the institution to individual‐oriented care practices in the community group homes. The results of this deinstitutionalisation effort, which is the largest thus far in Finland, are discussed in relationship to research and the policy of deinstitutionalisation.</span>

Homicide and schizophrenia: maybe treatment does have a preventive effect.

BACKGROUND: Persons with schizophrenia have been found to be at increased risk for homicide as compared with the general population. The increased risk may be associated with the implementation of the policy of deinstitutionalization. METHOD: Persons with schizophrenia who had committed or attempted homicide in the German state of Hessen from 1992 to 1996 and in the Federal Republic of Germany from 1955 to 1964 were compared. RESULTS: Schizophrenia increased the risk of homicide 16.6 times (95% CI 11.2-24.5) in the recent cohort and 12.7 times (95% CI 11.2-14.3) in the older cohort. These odds ratios are not statistically different. The lack of appropriate services for chronic high-risk patients and the non-use of mental health services by first episode, acutely psychotic patients were associated with homicide. CONCLUSION: There has been no increase in the risk of homicide among persons with schizophrenia since the implementation of the policy of deinstitutionalization. The examination of the recent period suggests that the provision of specialized long-term care to persons with schizophrenia who are at high risk for violent behaviour and the use of mental health services by acutely psychotic persons may reduce the risk of homicide.

Move of adults with mental retardation from institutions to community-based living: changes in the oral microbiological flora.

In the Western world, the policy of deinstitutionalization and integration of individuals with mental retardation is generally accepted. We tested the hypothesis that de-institutionalization may lead to changes of habits with a potential to influence oral health. When 57 adults with mental retardation moved from an institution to community-based living, their oral hygiene habits, gingival bleeding, and a three-day food record were registered one month before and 9 and 21 months after the move. Mutans streptococci and lactobacilli in saliva, P. intermedia/P. nigrescens, P. gingivalis, and A. actinomycetemcomitans in supragingival plaque, and C. albicans on mucous membranes were analyzed. After 21 months of community-based living, fewer persons showed high classes of mutans streptococci, growth of P. intermedia/P. nigrescens, and high frequency of sucrose intake, and more subjects showed growth of C. albicans. In a short perspective, the indicators of oral diseases suggest an unchanged or lower risk of oral diseases after the de-institutionalization of individuals with moderate or severe mental retardation.

Remoralising Landscapes of Care

The policy and theoretical discourses of deinstitutionalisation have been centred on a fundamental normative polarity that opposes the ‘dehumanising’ institution to the more humane environment of community care. We reconsider this moral polarity by drawing upon three philosophical currents that emphasise the need for inclusive and compassionate governance. We argue that there are strong political — ethical and practical reasons why inclusive governance can improve human-services planning and delivery. First, by recognising and addressing the vulnerabilities of nonservice users, an inclusive ethics is most likely to maximise the welfare of all groups with interests in community care. Following from this, an inclusive ethics is more likely to foster the broad social support that we argue is necessary for successful community care. Third, an inclusionary outlook has the potential to broaden the design of community-care services and facilities. An inclusive ethics would radically open up policy design to a range of other service options that account for the complexities of place, policy context, and the needs of key interest groups, such as service users, workers, relatives/advocates, and local communities.

Emerging issues with mentally ill offenders: causes and social consequences.

Persons with mental illness and co-occurring substance abuse disorders are incarcerated at disproportionately high rates in comparison to the general population. Reasons may include high standards for involuntary commitment, an overall increase in substance abuse and the policy of deinstitutionalization. However, one significant reason may be that psychiatric institutions serve a social control function, which has not been appreciated by policymakers and program developers since deinstitutionalization. This paper presents provider views of the population and issues of concern for clients, families, and the agencies. Discussion includes service-provider response to the population, new program models, and implications for policymakers.

Mental Health Services in New York City

New York City provides an urban laboratory for examining issues of mental health service design. It is illustrative of the challenges and opportunities faced in providing mental health services in response to the public policy of deinstitutionalization and the planning of community-based services for the seriously mentally ill. Throughout the United States, since the mid-1950s, the release of mentally ill patients from state psychiatric hospitals into community-based care has most often not been accompanied by careful planning for community mental health services. Over the past forty years, New York State has undergone a transition from reliance on inpatient and institutional care to a preference for community-based care for seriously mentally ill persons. Although New York is certainly not unique in this overall policy direction, the magnitude of the decrease in inpatient census in New York has been remarkable. The New York State Department of Mental Hygiene reported a statewide inpatient census of over 93,000 patients in 1955; today it is under 5,000. As a consequence of this massive shift in public policy by government and the provider community, capacity must be created to handle the enormous influx of clients.

Deinstitutionalization and community care: social welfare policy as mental health policy.

Has deinstitutionalization failed, and if so, is it a failure of mental health policy—or of something else? Numerous articles1-5 in the news media and professional literature in the United States and the United Kingdom seem to reflect a public conclusion that the dual mental health policies of deinstitutionalization and community care are inadequate. The evidence offered includes high rates of homelessness among persons with mental illness and incidents of violence attributable to individuals having a history of contact with the mental health service system. Also cited are the confinement of disproportionate numbers of mentally ill persons in jails and nursing homes, the failure of individuals with a history of mental illness to participate in the work force, and the specter of discharged patients “smoking and rocking away their days” in quiet desperation in board-and-care homes or their own apartments.

Deinstitutionalization of the elderly in Finland, 1981-91.

The success of Finnish deinstitutionalization policy among the elderly in 1981-1991 was evaluated in terms of institutionalization rates and case-mix. Censuses of institutionalized people in all public and private residential homes and health centre hospitals (or nursing homes) were performed in 1981, 1986 and 1991. Data on demographic factors, diagnoses and dependency level were gathered. Censuses from the closest years of psychiatric patients were also used to obtain a comprehensive view of institutionalization. The eligibility criteria for the study were (1) age 65 years or more (2) currently in long-term care. In both men and women the overall relative reduction was 33%, and largest in psychiatric care, at over 67%. In residential home care the relative reduction was about 40%. In health centre hospitals a slight increase was seen, about 10%. Length of stay shortened in residential homes but increased in health centre wards. Dependency level increased among the elderly people in long-term institutional care during ten years. In conclusion, the deinstitutionalization rate was substantial among the elderly in Finland. However, because of rapid demographic change the absolute number of elderly in long-term care remained almost constant. The case-mix has become more demanding and the proportion of elderly in constant need of extensive help has risen.

Evaluation and Consultation

The article suggests that in evaluations of health and social care in the UK, especially those that are officially sponsored, users have occupied a minimal role. It is argued that this is largely because such studies are conducted in the context of a dominant positivistic paradigm, particularly in medicine, that emphasizes 'scientific' as opposed to lay knowledge and the merits of experimental designs. The article focuses mainly on mental health where de institutionalization policies, and a growing emphasis on social treatments, together create a greater need for evaluations to incorporate users in more empowering ways. At the same time, a current interest in 'consultation' has generated many innovative and exciting new inputs for service users—for example, citizens' juries—that offer important lessons for user participation in evaluation. The paper argues that although much consultation has not been assessed itself, lessons may still be learned about the value of lay involvement, and which participation models exist that can be used to inform the future development of evaluations in health and social care.

Community care and disability: the limits to justice

This article considers the distinctive injustices experienced by disabled people and assesses recent institutional strategies which have sought to reduce these inequities and exclusions. A principle of ‘enabling justice’ is proposed. This is to emphasize that the attainment of a just society which respects social difference is dependent upon the creation of human environments which satisfy the material and cultural needs of all who occupy them.The article reviews a critical area of state policy practice in capitalist societies – the establishment of community care networks for socially dependent persons. While the policy of community care cannot alone produce enabling environments, it may well lessen one dynamic of oppression which disabled people experience: their sociospatial exclusion in remote, often dehumanizing, institutional settings. However, an examination of the practice of community care in particular national contexts reveals several problems which may frustrate the realization of its policy aims, including opposition to care facilities from nearby residents and structural changes to social policy by neoliberal governments. The article considers these challenges to community care using recent research which has examined the relationship between deinstitutionalization, urban regulation and social policy.

Predictors and Outcomes of the End of Co-Resident Caregiving in Aging Families of Adults with Mental Retardation or Mental Illness

Aging mothers who lived with an adult child with either mental retardation (n = 308) or mental illness (n = 73) were studied prospectively over a three-year period to determine the antecedents and consequences of the end of co-residence between the aging mother and adult child. Different factors predicted the end of co-residence for the two sub-samples, but the consequences of this transition with respect to maternal burden and depressive symptoms were similar for the two groups. There was a high level of contact between the aging parent and adult child with disabilities even after the period of co-residence ended. Recently, caregiving for the elderly has been conceptualized as a career with three phases: (a) co-resident caregiving, (b) institutional placement, and (c) bereavement (Aneshensel, Pearlin, Mullan, Zarit, & Whitlatch, 1995; Pearlin, 1992). It has been argued that caregiving is a transformative experience for the caregiver because transitions into and out of this role are accompanied by identity shifts as well as changes in well-being (Pearlin, 1992; Skaff, Pearlin, & Mullan, 1996). Although the career model was conceptualized in the context of caregiving for an elderly relative with Alzheimer's disease, it may have broader applicability to other forms of family caregiving. A less common but increasingly recognized type of family care is provided by aging parents who have continuing caregiving responsibilities for a son or daughter with disabilities (Lefley, 1987; Seltzer & Krauss, 1994). The emergence of this type of caregiving is the result of several trends, including the increased longevity of persons with disabilities (Eyman & BorthwickDuffy, 1994), the aging of the baby boom generation which includes a population bulge of persons with disabilities (Greenley, 1990; Janicki & Wisniewski, 1985), and social policies of deinstitutionalization and enhanced community care which thrust parents into a primary caregiving role (Fisher, Benson, & Tessler, 1990; Fujiura & Braddock, 1992; Lefley & Wasow, 1994; Thompson & Doll, 1982). It is now the norm for parents to be actively involved in providing or overseeing the care of their adult child with disabilities. Most of these adults will ultimately outlive their parents. Although for some families, the end of caregiving occurs when the parents die, for others the transition to nonparental care occurs while the parents are still alive and the adult moves away from the parental home. Guided by the conceptualization of caregiving as a career, we examine one transition of the caregiving career for aging parents of adult children with disabilities. This transition is analogous to the move from Phase 1 to Phase 2 in the Aneshensel et al. (1995) model, or from co-residence between the parent and the adult with disabilities to the period in which the adult lives elsewhere (though not necessarily in an institutional setting, as in the Aneshensel et al. model). Although there is a growing understanding of the nature and impacts of co-resident parenting of adults with disabilities (Greenberg, Seltzer, & Greenley, 1993; Heller & Factor, 1994; Pruchno, Patrick, & Burant, 1995; Seltzer, Greenberg, & Krauss, 1995), very little is known about the factors leading to the end of this phase or about parental adaptation to the post-caregiving phase. Therefore, our goal in this paper is to investigate the factors that predict the end of coresident caregiving for mothers of adults with disabilities and the consequences of this transition for maternal feelings of subjective burden and depressive symptoms. Background Parental Caregiving for Adults with Mental Retardation or Mental Illness Research on parental caregiving for adults with disabilities has revealed that there are both frustrations and gratifications associated with this role (Pruchno et al., 1995). The balance of positive and negative adaptations depends in large part on the specific disability of the adult child, the level of societal acceptance or stigma, and the formal and informal support systems available to or created by parents. …

The major mental disorders: New evidence requires new policy and practice.

AbstractThis article argues that a new mental health policy and programmes are needed to deal with the major mental disorders (schizophrenia, major depression and bipolar disorder). Evidence has now accumulated to show that many of the persons who are afflicted with these disorders continue to suffer throughout their adult lives, despite treatment. In addition to their own suffering, their mental disorders lead to unmeasurable suffering for their families which often include young children. Not only do these individuals present all of the symptoms and social impairments usually associated with the major disorders, they are also at increased risk for premature death, substance abuse/dependence, criminality, violence, homelessness, and infectious disease. This situation cannot be left to continue. New policy and programmes designed to prevent the major mental disorders are needed. Two consistent findings suggest that prevention may be possible: 1) many of the children at risk for the major mental disorders can be identified by their family history of mental disorder; and 2) non - genetic factors, biological and/or psychosocial, can limit the expression of the hereditary factors associated with each of these disorders. Given what we know about the fate of children within these high risk families, it may be unethical to not intervene.This article reviews recent findings on the major mental disorders (schizophrenia, major depression, and bipolar disorder). The results demonstrate that these disorders, in most cases, are chronic, devastating, and debilitating, and that they are associated with increased risk of premature death, alcohol and/or drug abuse, criminality, violence, homelessness, and infectious disease. Since the implementation of deinstitutionalization policies along with widespread use of antipsychotic and antidepressant medications, the social problems associated with the major disorders have increased substantially. However, as other findings clearly demonstrate, there is no reason for the current situation to persist. The prevention of the major disorders is a realistic goal because: 1) a large part of the population at risk for these disorders can be identified with relative accuracy; and 2) twin studies have consistently demonstrated that some individuals who carry the genetic predisposition for one or other of these disorders, never develop the disorder; some non - genetic factor protects them. Identification of these protective factors and of the factors which exacerbate the genetic predisposition could lead to the development of prevention programmes. Given current knowledge in this field, Canada needs a new mental health policy which emphasizes prevention of the major mental disorders, and an allocation of resources which would allow for the implementation and evaluation of experimental prevention programmes.A BRIEF REVIEW OF CURRENT FINDINGS ON THE MAJOR MENTAL DISORDERSPrevalenceOnset of the major mental disorders occurs, in most cases, in late adolescence or early adulthood. Schizophrenia afflicts about 1.0% of men and women (Robins & Regier, 1991), and bipolar disorder about 1.6% of men and women (Kessler et al., 1994). The Epidemiologic Catchment Area project which evaluated a random, stratified sample of more than 15,000 U.S. citizens in the early 1980s, documented the prevalence of major depression to be 2.6% among men and 7.0% among women (Robins & Regier, 1991). A similar epidemiological investigation conducted in the early 1990s, documented rates of 12.7% among men and 21.3% among women (Kessler et al., 1994). Several investigations, conducted in a number of different Western industrialized countries, have documented increasing prevalence rates of major depression in cohorts born since the 1940s (Klerman & Weissman, 1992).Validity and reliability of diagnosesThere is now good consensus, and more than adequate reliability and validity, for the diagnoses of schizophrenia and bipolar disorder that are obtained using structured, standardized, diagnostic instruments administered by experienced clinicians trained in their use (see for example, Spitzer, Williams, Gibbon, & First, 1992). …

One and two year outcomes for adults with learning disabilities discharged to the community.

Long-stay patients with learning disabilities (n = 214) were assessed in hospital and 12 and 24 months after discharge in order to examine the effects of relocation. Each resident acted as his/her own control in a prospective repeated-measures design. Skills and behavioural problems were assessed by keyworkers. Self-perceived quality of life was obtained during interviews with researchers who also completed an environmental checklist of the residents' accommodation. There was little or no change in people's low pre-discharge skill levels. Certain aspects of problem behaviour improved after 12 months, although socially unacceptable behaviour increased slightly. People were less depressed (P < or = 0.01) 12 months after discharge (N = 119) and were more satisfied (P < or = 0.05) with their new 'homes' (n = 108). There were few changes in the pattern of activities or the social networks of people 12 months later. Little or no further change in outcomes was reported 24 months after discharge. The implementation of the deinstitutionalisation policy in Northern Ireland has been limited by the predominance of residential and nursing homes and the lack of 'ordinary' accommodation. There is a need for purchasers and providers to give more attention to ways in which the principles of normalisation could be incorporated in the process of contracting and delivering services.

Inventing the Feeble Mind: A History of Mental Retardation in the United States

Half-wits, dunces, dullards, idiots: though often teased and tormented, the feeble-minded were once a part of the community, cared for and protected by family and community members. But in the 1840s, a group of American physicians and reformers began to view mental retardation as a social problem requiring public intervention, which often meant institutionalization. This study uses public documents, private letters, investigative reports and rare photographs to explore the changing perceptions of feeble minds over the past 150 years. Trent contends that the economic vulnerability of mentally retarded people (and their families), more than the claims made for their intellectual or social limitations, has determined their institutional treatment. He finds that superintendents, social welfare agents, IQ testers, and sterilizers have utilized psychological and medical paradigms that insure their own social privilege and professional legitimacy. More than simply moving from care to control, state schools have become places where care is an integral part of control. In analyzing the current policy of deinstitutionalization, Trent concludes that it has been more successful in dispersing disabled citizens than in integrating them into American communities.