Living circumstances of children and adults with mental retardation or developmental disabilities in the United States, Canada, England and Wales, and Australia

The purpose of this article was to collate evidence to describe where people with mental retardation or developmental disabilities live in five developed countries: United States, Canada, England, Wales, and Australia. Family homes are important dwelling places for people with mental retardation. They are the home of the great majority of children with mental retardation and a considerable proportion of adults with mental retardation. The likelihood of placement outside the family home increases with adulthood and progressively as people age. Adults with mental retardation live in a wide variety of settings, with formal residential provision frequently dependent on the arrangements that the authorities responsible for providing service support have chosen to make. There has been a considerable move away from accommodating people in large segregated and geographically isolated institutions in the countries considered. However, the current range of accommodation includes much with a distinctively different character to the homes where other citizens live. Many people still live in larger groups than would be ordinarily found in typical homes and this may necessitate departure from the architectural norm. In all of the countries considered, there has been a recent trend towards small community settings, compatible with typical housing architecture. This appears furthest advanced in the U.S. but is discernible elsewhere. Availability of residential services at a national level varies between 100 and 155 places per 100,000 total population. Regional variation within countries is even greater. In no case is the national availability considered adequate to meet the demand arising from changing need or expectations. MRDD Research Reviews 7:115-121, 2001. (c) 2001 Wiley-Liss, Inc.     

IMPROVING RESIDENTIAL TREATMENT SERVICES: IMPLEMENTATION AND NORM-REFERENCED EVALUATION OF A COMPREHENSIVE MANAGEMENT SYSTEM

Ensuring effective service delivery by direct-care personnel in institutional living units for persons with developmental disabilities historically has been a difficult process, despite considerable attention from researchers, service providers, and governmental regulatory agencies. In this investigation, we conducted a normative evaluation of the extent and quality of treatment services currently provided in residential living units (Experiment 1) and evaluated a comprehensive management system designed to improve such services (Experiment 2). Results of the first experiment, encompassing 22 living units in three states, indicated that on the average two thirds of observed resident behavior did not involve any therapeutic activity. The results also provided social validity for the criteria used to evaluate the quality of treatment provision based on opinions of mental retardation professionals. Results of the second experiment indicated that a behavioral management program implemented during 23 separate time periods across five living units was accompanied by consistent and durable decreases in resident nontherapeutic activity as well as increases in specifically designated habilitative activity. The results provide support for the successful incorporation of behavioral management technology into human service settings on a large-scale, long-term basis.     

Counselling Older Adults Living in Residential Aged Care Settings: Four Illustrative Case Studies

The role of psychologists and other mental health professionals in long‐term care settings is undefined in Australia. Graduate psychology students receive little training in clinical geropsychology, and residential aged care providers do not routinely employ psychologists within such settings. Further, despite high rates of depression, neurocognitive problems, and other mental health problems, residents are rarely referred for evidence‐based psychological treatment. This article presents four case studies showing how psychology services may be employed in such settings within the context of a postgraduate psychology placement programme. These case studies emphasise the importance of engagement, the use of flexible and individualised treatment approaches, and the involvement of family and professional carers in the provision of psychological services. Psychology services in residential settings can have a positive impact on the care of older adults and their families.     

A Social Ecological Approach to Investigating Relationships Between Housing and Adaptive Functioning for Persons with Serious Mental Illness

This paper seeks to advance mental health—housing research regarding which factors of housing and neighborhood environments are critical for adaptive functioning, health, and recovery for persons with serious mental illness (SMI). Housing and neighborhood environments are particularly important for persons with SMI because of the prevalence of poor housing conditions among this population. Most mental health—housing research has been limited by a focus on problems in environments and functioning. The paper seeks to expand the mental health—housing research agenda to consider protective factors that promote community integration and adaptive functioning. We provide an account of how social ecology theory transformed a research program, from examining individual risk factors to investigating the functioning of persons in the contexts of their housing and neighborhood experiences. The resulting housing environment framework—physical aspects of housing and neighborhoods, social environment of neighborhoods, and interpersonal relationships tied to housing—allows for identification of opportunities for health promotion and facilitation of participation in community-based settings. This program of research draws upon several methods to understand the social experience of persons with SMI living in community settings—survey research, qualitative interviews, Geographic Information Systems, participatory research, and visual ethnography. In this paper, we present how social ecology theory was instrumental in the development of new housing environment measures, the selection of appropriate research methods, and framing research questions that are building a new empirical base of knowledge about promoting adaptive functioning, health, and recovery for persons with SMI living in community settings.     

Major mental illness, housing, and supports. The promise of community integration

Providing housing and supports for people with psychiatric disabilities, particularly those who are homeless, is a major public policy challenge. This article summarizes the ways in which the concept of these needs is rapidly shifting in the mental health field. The article is based on research on the effectiveness of non-facility-based community support and rehabilitation approaches, the findings of other disability fields, and the emergence of mental health consumers' own preferences for expanded choices, normal housing, and more responsive services, including consumer-operated services. These new sources of knowledge are facilitating a paradigm shift in which people with psychiatric disabilities are no longer seen as hopeless, or merely as service recipients, but rather as citizens with a capacity for full community participation and integration.     

The therapeutic community in the local community: Social networks between therapeutic community and supported housing

In this paper, the authors present a model for therapeutic community programmes for those with severe and enduring mental ill health, based on social networks. These programmes have given birth to a range of therapeutic community which are, in fact, an innovative form of group psychotherapy. These new model do not depend on communal living. Some are groupings of apartments, others day units. Work schemes also feature here. And yet, as the authors outline, various components need to be present if these are to be considered genuine therapeutic communities and not just supported housing schemes. Additionally, a certain kind of training and clinical supervision is needed for the staff.     

Williams syndrome: cognition, personality, and adaptive behavior

Williams syndrome is caused by a microdeletion of at least 16 genes on chromosome 7q11.23. The syndrome results in mild to moderate mental retardation or learning disability. The behavioral phenotype for Williams syndrome is characterized by a distinctive cognitive profile and an unusual personality profile. Relative to overall level of intellectual ability, individuals with Williams syndrome typically show a clear strength in auditory rote memory, a strength in language, and an extreme weakness in visuospatial construction. The personality of individuals with Williams syndrome involves high sociability, overfriendliness, and empathy, with an undercurrent of anxiety related to social situations. The adaptive behavior profile for Williams syndrome involves clear strength in socialization skills (especially interpersonal skills related to initiating social interaction), strength in communication, and clear weakness in daily living skills and motor skills, relative to overall level of adaptive behavior functioning. Literature relevant to each of the components of the Williams syndrome behavioral phenotype is reviewed, including operationalizations of the Williams syndrome cognitive profile and the Williams syndrome personality profile. The sensitivity and specificity of these profiles for Williams syndrome, relative to individuals with other syndromes or mental retardation or borderline normal intelligence of unknown etiology, is considered. The adaptive behavior profile is discussed in relation to the cognitive and personality profiles. The importance of operationalizations of crucial components of the behavioral phenotype for the study of genotype/phenotype correlations in Williams syndrome is stressed. MRDD Research Reviews 2000;6:148-158.     

Latino Family Participation in Youth Mental Health Services: Treatment Retention,Engagement, and Response

Although researchers have identified a multitude of factors that contribute to family participation in mental health services, few studies have examined them specifically for Latino youth and their families in the U.S., a population that continues to experience significant disparities related to the availability, accessibility, and quality of mental health services. Latino youth and their families are at greater risk of dropping out of treatment prematurely and demonstrating poor treatment engagement, both of which have subsequent negative effects on treatment response outcomes. In order to help to guide efforts to improve the accessibility and quality of mental health services for Latino youth and their families, the current paper integrates modern conceptualization of family participation in youth mental health services and provides a summary of contextual factors within an ecological framework (Bronfenbrenner in The ecology of human development: experiments by nature and design, Harvard University Press, Cambridge, 1979). The current review aims to integrate empirical research on the impact of various contextual factors across multiple levels (i.e., culture, community, mental health system, family, parent/caregiver, and child/adolescent) on Latino family participation in youth mental health services, including treatment retention, engagement, and response. Clinical implications will be discussed, and an integrated, conceptual model will be presented. Not only does this model help to demonstrate the way in which existing literature is conceptually linked, but it also helps to highlight factors and underlying processes that health care providers, administrators, and policy makers must consider in working to improve mental health services for Latino youth and their families living in the U.S.     

Building a research base for community services for children and families: What we know and what we need to learn

We examine the knowledge base for community-based mental health services for youth and their families. A brief historical perspective on the development of community services is presented, and the fundamental components of a comprehensive child mental health service system are described. Outcome studies for service components as well as the service system as a whole are summarized. Research related to the context of treatment, i.e., service setting, cost, is presented. The authors conclude that a research base for child and family services is emerging, but there is still a paucity of well designed studies that address the complexities of a community-based system as well as the critical outcome questions that need to be addressed. Finally, promising service system developments are described and recommendations for future research are presented.     

INCREASING SELF-DETERMINATION: TEACHING PEOPLE WITH MENTAL RETARDATION TO EVALUATE RESIDENTIAL OPTIONS

The community living preferences of 4 institutionalized adults with mild mental retardation were identified using photographs that depicted a variety of residential characteristics. Individuals then were taught to obtain information regarding their preferences during tours of community group homes, to report that information to their social worker, and to evaluate the homes based on the information obtained. A multiple baseline across participants design showed that all 4 participants substantially increased their skills at asking questions, reporting information, and evaluating homes. The results indicate that people with mental retardation can take an active role in major lifestyle decisions that others have typically made for them.     

SEPARATE AND COMBINED EFFECTS OF METHYLPHENIDATE AND A BEHAVIORAL INTERVENTION ON DISRUPTIVE BEHAVIOR IN CHILDREN WITH MENTAL RETARDATION

We investigated the separate and combined effects of a behavioral intervention and methylphenidate (Ritalin®) on disruptive behavior and task engagement in 3 children with severe to profound mental retardation. The behavioral intervention involved differential reinforcement of appropriate behavior and guided compliance. All 3 children demonstrated decreased disruptive behavior and improved task engagement in response to the behavioral intervention. Two of the 3 children demonstrated similar improvement in response to methylphenidate. Although both interventions were highly effective for these 2 participants, the relative efficacy of the interventions varied between the 2 children. There was no evidence of an additive or synergistic effect of the two interventions, but the high efficacy of each intervention alone limited our ability to detect such effects.     

A multi-site comparison of supported housing for chronically homeless adults: "Housing first" versus "residential treatment first"

Both direct placement in supported community housing and pre-treatment with time-limited residential treatment are used as approaches to helping chronically homeless adults exit from homelessness but relative effectiveness and cost remains untested. The current observational study utilized data from a national, multi-site housing project to determine whether clients who receive residential treatment or transitional housing before being placed into independent housing achieve superior outcomes than clients who are immediately placed into independent housing, and whether they incur greater healthcare costs. A total of 709 participants (131 and 578 participants in the respective groups) were assessed every 3 months for 2 years on housing outcomes, community adjustment, work and income, mental and physical health, and health service costs. Clients who received immediate, independent housing had more days in their own place, less days incarcerated, and reported having more choice over treatment; but no differences on other clinical or community adjustment outcomes. In this observational study, there were no clinical advantages for clients who had residential treatment or transitional housing prior to entry into community housing, but they incurred higher substance abuse service costs. Studies using randomized controlled trials of these conditions are needed to establish causation.     

A supported routines approach to active treatment for enhancing independence,competence and self-worth

The traditionally accepted approach to treatment in residential facilities for adults with mental retardation is examined in terms of its impact on the lives of the intended recipients and its interaction with emerging standards for treatment. It is noted that the primary emphasis in traditional treatment providing services to meet individual needs often results in the preponderance of service being directed toward the acquisition of skills required for later independent living, rather than the immediate facilitation of independence. We offer several reasons why a heavy emphasis on skill building is not only impractical but also inappropriate for meeting the real needs of adults with retardation. We suggest that a functional definition of independence from the individual's perspective would be to have a daily routine that is as free of outside assistance as possible and that is rewarding to the individual. We suggest that many persons with mental retardation already exhibit a sufficient array of behaviors from which appropriate personal routines could emerge. It is argued that functional assessments of the need for new skills should be conducted only from within such routines. We conclude that active treatment provided in this way will improve individual self-worth because its focus is on producing immediate competence and independence, rather than perpetuating the ‘student’ status of adults in residential facilities. We refer to this as a ‘supported routines’ approach. The implementation of this approach within the current standards for ‘active treatment’ is discussed, as well as the individual's right to be supported in this way.     

Evaluating the vermont system of care: Outcomes associated with community-based wraparound services

Evaluation of innovative community-based interventions is becoming a high priority for child and adolescent mental health service system research. The present study examined outcomes for a sample of Vermont children (N=27) experiencing emotional and behavioral problems and receiving individualized, wraparound services. One year after initiation of wraparound care, incidence of negative behaviors rated as placing a child at risk of removal from the community had decreased significantly, compliance behavior had increased, and a significant decline in Total Problem Behavior scores on the Child Behavior Checklist was observed. In addition, though 70% of the participants had previously required inpatient or residential treatment, 89% were maintained in the community after one year of services, and the total cost of services was less than that of out-of-state residential care. Although further comparative research is needed, this study suggests that for many of these children, wraparound services may be a more efficient intervention than long-term psychiatric hospitalization or residential treatment.     

Mental Health and Incarcerated Youth. II: Service Utilization

The incarceration of mentally ill youth is a serious problem not receiving the same attention as in adults. In this study, we examine the level of prior service utilization in incarcerated youth versus youth receiving community mental health services. We randomly recruited youth from middle South Carolina served by a local community mental health center (CMHC; n = 60), hospitalized in the state adolescent inpatient program (n = 50), and incarcerated in the S.C. Dept. of Juvenile Justice facilities (n = 75). We used a Services History to evaluate episodes of prior utilization of mental health, social service, educational, residential, and volunteer services, as well as the DISC-PC 2.3 to evaluate DSM-III-R diagnoses and symptoms and the CBCL and YSR to evaluate behavioral symptomatology. Incarcerated, hospitalized, and CMHC youth utilized similar levels of educational services and social services. Incarcerated youth had a significantly lower lifetime utilization of outpatient and acute mental health services and significantly higher utilization of out-of-home residential services than the other groups. These services utilization variables, along with gender and age, significantly distinguish incarcerated youth from the clinical groups, with clinical variables not serving to significantly distinguish them. Our results indicate the need to develop programs to prevent the entry of mentally ill/emotionally disturbed youth into the juvenile justice system. Youth who are at risk for incarcenation may benefit from intensive mental health services to prevent out-of-home placement and later incarceration.     

Treatment Engagement with Caregivers of At-risk Children: Gaps in Research and Conceptualization

The high rates of dropping out and other engagement problems are significant concerns in the delivery of mental health and adjunct services to the families of at-risk children. Consequently, researchers have examined the correlates of attrition and have developed interventions to increase engagement and retention. However, the lack of a clear definition of engagement and gaps in theory about the relationship of engagement to other treatment processes hinder knowledge development. In this paper the behavioral and attitudinal aspects of engagement are disentangled. Current knowledge about treatment barriers and interventions to increase appointment keeping is summarized. A preliminary conceptualization of the engagement process is presented and research needs and practice implications are discussed.     

Development and dissemination of collaborative family-oriented services: the case of community/day residential care in Israel

The initiation, development, and dissemination of family-oriented programs are a unifying thread that highlights family therapy's contribution to the fields of mental/physical health and social services. These demanding tasks require an ecosystemic vision, a supportive larger context, and a range of skills. This article delineates the evolution of community and day residential care in Israel by examining processes at different ecological levels: the formulation and implementation of national social policy, the follow-up of two family-oriented facilities, one of which thrived while the other eventually closed, and the residential care provided to 1 family with 3 children. The analysis of this multilevel data highlights 4 facilitating/obstructing factors that have had major impact on family-oriented programs: support by both national and local sociopolitical-professional administration, program's management autonomy, staff training, support and development, and effective facility leadership that establishes and nurtures family-oriented organizational structure and culture.     

Conceptualizing Culturally Infused Engagement and Its Measurement for Ethnic Minority and Immigrant Children and Families

Despite the central role culture plays in racial and ethnic disparities in mental health among ethnic minority and immigrant children and families, existing measures of engagement in mental health services have failed to integrate culturally specific factors that shape these families’ engagement with mental health services. To illustrate this gap, the authors systematically review 119 existing instruments that measure the multi-dimensional and developmental process of engagement for ethnic minority and immigrant children and families. The review is anchored in a new integrated conceptualization of engagement, the culturally infused engagement model. The review assesses culturally relevant cognitive, attitudinal, and behavioral mechanisms of engagement from the stages of problem recognition and help seeking to treatment participation that can help illuminate the gaps. Existing measures examined four central domains pertinent to the process of engagement for ethnic minority and immigrant children and families: (a) expressions of mental distress and illness, (b) causal explanations of mental distress and illness, (c) beliefs about mental distress and illness, and (d) beliefs and experiences of seeking help. The findings highlight the variety of tools that are used to measure behavioral and attitudinal dimensions of engagement, showing the limitations of their application for ethnic minority and immigrant children and families. The review proposes directions for promising research methodologies to help intervention scientists and clinicians improve engagement and service delivery and reduce disparities among ethnic minority and immigrant children and families at large, and recommends practical applications for training, program planning, and policymaking.     

The client as consumer and evaluator of community mental health services

Discussion of ethical issues which concern community psychologists and other mental health professionals has generated new emphasis on the psychiatric client as consumer. In light of the studies questioning the efficacy and ethics of various clinical procedures, it would seem that the client-consumer is being asked to accept treatment which is often less than desirable. In light of recent trends to safeguard the rights of the client-consumer, it is now appropriate to focus on the client as evaluator of services contracted. Having clients evaluate clinical services finds its logical fruition in the creation of client advisory boards. Avoiding many of the problems of citizen mental health advisory boards, client boards ensure continued and systematic client evaluation of community mental health services. The accomplishments of one client board are offered as evidence that there should be increased emphasis on the consumer as evaluator.