The habilitation of mentally retarded adults (2025)

Quality-of-life outcomes and costs associated with a move from congregated settings to community-living arrangements for people with an intellectual disability: An evidence review

Peer-reviewed Health Research Board evidence review (report). Submitted to the Health Research, 2018 McCarron, M., Lombard-Vance, R., Murphy, E., Sheaf, G., O'Donovan, M-A., McCallion, P., Webb, N., Stancliffe, R., Normand, C., Smith, V., May, P. The purpose of this review is to systematically evaluate the evidence on quality of life outcomes and costs associated with a move from a congregated setting to a community living arrangement for people with intellectual disability. The right to live independently in a place of one’s own choosing is a core value of the United Nations Convention on the Rights of Persons with Disabilities. Ireland is in the process of implementing a new phase in its efforts to reduce the reliance on institutional residential arrangements for people with intellectual disability. In particular, there has been a focus on moving people from what are widely referred to as ‘congregated settings’ (institutions with 10 or more residents) to ‘community living arrangements’ (where each unit contains no more than four residents). The Department of Health in Ireland requested this review to inform Ireland’s ongoing deinstitutionalisation process. Although there is a large body of studies examining quality of life outcomes of residential moves by people with intellectual disability, small samples, a lack of systematic design, incomplete data, and variations in what was measured over different time frames mean that few studies were worthy of inclusion in a systematic review, and even fewer met the criteria for meta-analysis. Nevertheless, this evidence review does offer some support for the hypothesis that moving from an institutional residential setting to a community residential setting is associated with improved quality of life for adults with intellectual disability. There is no clear evidence on the cost-effects of residential moves, and few conclusions can be drawn for people who have highly specialised support needs. There were some findings suggesting that people with severe or profound intellectual disability either experienced a generally improved quality of life or experienced a lack of improvement, but not a deterioration in quality of life, following a move to a community setting. There is a need for longitudinal studies – and agreed standardised variables and measures – that examine adequately sized representative samples of people with intellectual disability where there is the potential to gather baseline (pre-move) data; follow individuals at several time points; examine health-related, community participation, and life satisfaction variables; and control for the effects of changing health and independence needs. Comparison of cost-effects requires measurement from the broadest possible perspective, incorporating both formal (residential, health, and social care, out-of-pocket costs) and informal (unpaid carer) cost domains in ways that illuminate the relationships between specific types of residential settings and associated utilisation.

Halfway Houses for the Mildly Retarded

1971

Investigated were number and location of community residences or halfway houses (of fewer than 61 persons) for the mildly retarded and their programing practices. Form letters and questionnaires uncovered 68 programs meeting internal delimitations of the study. Programs were categorized for analysis purposes into California Programs, New Programs (in operation for 1.2 months or less), and Old Programs. Analysis of data showed the majority of non-California programs in Texas and Florida. Clients in Old Programs had short lengths of stay (mean of 22 months), used public facilities and contributed to own maintenance in 60% of the cases, and went independently to jobs in over half of the cases. New Programs resembled Old Programs except that over 60% of the New were integrated by sex. Although 51 halfway houses were found outside California, not one for the mildly retarded was found'in California. The sample of existing California Programs (Family Homes and Resident Facilities) were characterized by fewer residents, longer stays, lower estimated IQ, little community involvement, and lower level of self-maintenance. Patients were not normalized to the extent of residents in other programs. (KW)

The Sunland Training Centers: Florida's Institutes for Children with Intellectual Disabilities

Florida Public Health Review, 2013

Developmental disabilities affect about one out of every six children in the United States. These conditions create significant financial and social costs to families and society. Specifically, questions have long arisen as to how best to manage the needs of persons with intellectual disabilities. Historically, the nomenclature used to address intellectual disabilities has evolved as has the philosophy of venues to provide optimal care and the development of specific skills for conducting this care. Considerable dissension still exists about the type and nature of institutional care for even the most profoundly disabled individuals. This paper reviews relevant history, including laws, regulatory measures, and landmark judicial decisions with a special focus on Florida.

Ramps Are Not Enough: The Movement of Children with Mental Retardation from Institutional to Community-Based Care

1986

Quality assurance of the community placement of institutional residents

nyumed.org

Background: Residence in the least restrictive appropriate environment facilitates the attainment of one's maximal potential for a satisfying and rewarding life. Since some persons with mental retardation and other developmental disabilities manifest repeated problems on institutional discharge, methods to identify likely difficulties on release from institutions are desirable. Objective: To introduce a questionnaire that may help to predict the successful placement of persons with mental retardation and other developmental disabilities. Method: To facilitate surveys of individuals residing in institutions in preparation for discharge, we developed the Discharge Planning Quality Rating Survey (DPQRS), a chart review instrument for trained raters to evaluate the relevant clinical information. The charts of all 189 residents of an urban intermediate care facility for people with mental retardation were reviewed by one of three physician raters who then completed the DPQRS. Results: Data obtained with the DPQRS are presented, including sex, age, ethnicity, IQ, developmental milestones, activities of daily living, medical and mental disorders, behavior problems, physical appearance, medications, Axis IV and V scores using the Diagnostic and Statistical Manual (DSM) for Mental Disorders, and others. The interrater reliabilities of the items are presented. Conclusions: The DPQRS is a valuable tool for surveys to predict the successful community placement of mentally retarded individuals. Further studies are needed to establish the external validity of the instrument (

De-institutionalized skills: utilized or useless

1995

Methodological issues in interviewing and using self-report questionnaires with people with mental retardation.

Psychological Assessment, 2001

How To Free Our People: Real Life Solutions--A National Conference (Kansas City, Missouri, May 21-23, 2003). Participant's Manual

2003

This document is the participant's manual for a 3-day training conference for professionals involved in transition and the independent living movement for individuals with disabilities. Preliminary information includes the conference agenda, background information on the" trainers and the sponsoring organizations, and the learning objectives of the conference. The first section examines in some detail the decision in Olmstead v. United States in which the court ruled that unjustified isolation of people with disabilities is properly regarded as discrimination based on disability and requires states to provide community based services. The following sections address: (1) constitutional rights of people with disabilities; (2) outreach and identification strategies; (3) exploring the limits of community living (personal stories); (4) first meeting and initial planning; (5) identification of barriers and advocacy strategies; (6) housing; (7) states' use of home health, the Personal Care Services benefit, and waivers; (8) general guidelines for nursing facility transition; (9) a

How Can Services Become More Ethical?

Offenders with Developmental Disabilities, 2004

A Comparative Analysis of Selected Characteristics of Foster Grandparents Assigned to Criterion Groups on the Bases of Tenure and Supervisor Evaluations

1967

VI CHAPTER I account for two-thirds of the income from sources other than earnings (19, pp. 7-8). Mentally retarded children represent a group expected to be helped by the Foster Grandparent Program. In 1962, there were an estimated 5.4 million mentally retarded children and adults in the United States, a figure representing about three per cent of the total population (20, p. 1). Of these, about 213,000 were being cared for in public and private institutions. Thus, five million retardates lived outside of institutions in 1962 (20, p. 131). Description of the Foster Grandparent Program The President of the United States announced the first twenty-two projects under the Foster Grandparent Program on August 29, 1965. The Program is administered jointly by the Office of Economic Opportunity and the Administration on Aging. The Office of Economic Opportunity provides the funds for the various local projects, and the Administration on Aging is responsible for their development and supervision. In the first year ten million dollars was provided for support (27, pp. 1-2). This support went to twenty-two projects located in nineteen states. The Program is seen as exploratory and, if successful, will probably be expanded (27, p. 8). I On each project, a grandparent works with two children a day (usually two hours being devoted to each child). Thus, the grandparents work twenty hours a week, usually in terms of five four-hour days. (OVER) Cornoralion. New York. N. Y.