Quality of Life for People with Developmental Disabilities; bibliography: Quality in Services

Quality of Life for Persons with Developmental Disabilities:

An Annotated Bibliography

PART II: QUALITY OF LIFE IN DEVELOPMENTAL DISABILITIES

E. Quality in Services

Bellamy, G.T., Newton, J.S., LeBaron, N.M. & Harper, R.H. (1990). Quality of life and lifestyle outcomes: A challenge for residential progams. In R.L. Schalock (Ed.), Quality of Life: Perspectives & Issues. Washington, DC: American Association on Mental Retardation, 127-137.

There is a growing need for accountability in service programs for people with mental retardation. Measures of program quality tend to follow one of three paths. Capacity measures analyze procedures and environmental features which may promote quality. Such measures have primarily an administrative value. Progress measures assess the quality of a program through examination of an individual’s behavior or skill changes which leads to an over-emphasis on independence, a focus on unnecessary skills and a lack of recognition for alternative ways of doing things. Lifestyle measures are seen as being much more comprehensive and reflect most closely normalization values. Program implications of lifestyle accountability, including the need for new internal measurement systems and a broader service technology are examined. This new focus could enhance the quality of life for persons with mental retardation receiving services.

Blunden, R. (1988). Quality of life in persons with disabilities: Issues in the development of services. In R.I. Brown (Ed.), Quality of Life for Handicapped People. New York: Croom Helm, 37-55.

Quality of life issues are examined within the context of service provision for people with disabilities. A framework for evaluating four key aspects of QOL: physical well-being, material well-being, social well-being and cognitive well-being is provided, acknowledging the multi-dimensional nature of QOL. Six forms of service provision and their respective concerns with differing aspects of QOL are examined. While they are concerned with their clients’ well-being, services can have unintended negative effects in this area. It is the responsibility of service providers to assess quality in terms of the impact of the services on peoples’ lives. The need for better measurement of client outcomes and for action research strategies is highlighted. Evaluability assessment, collaborative evaluation and soft systems analysis are three action research strategies recommended for use in further research of service quality.

Bowd, Alan (1988). To Provide a Home Environment: Normalization of Residential Services for Developmentally Handicapped Persons in the Lakehead Region. Thunder Bay, Ontario: Lakehead Assocation for Community Living.

This report represents the development of an assessment package to evaluate the community-based residential programs of the Lakehead Association for Community Living. The assessment package includes six instruments: 1) Space and Settings Scale, 2) Group Management Practices Scale, 3) Family Perceptions Index, 4) Staff Questionnaire, 5) Assessment of Resident’s Satisfaction and 6) Language Usage. These instruments are presented along with - and presumably in keeping with - the goals of the Association, a description of its facilities, and the views of many of its management, staff and residents.

Bradley, V.J. (1990). Quality assurances: Challenges in a decentralized system. In R.L. Schalock (Ed.), Quality of Life: Perspectives & Issues. Washington, DC: American Association on Mental Retardation, 215-225.

Several issues pertaining to quality assurance are covered in this chapter. These include: a critique of current quality assurance practices, quality assurance principles and purposes, emerging trends in services for persons with mental retardation, consideration of ideological and programmatic changes that present new challenges for designers of quality assurance programs and the realities of the current systems that must be considered in quality assurance approaches. The chapter closes with recommendations about the design of quality assurance systems.

Brown, R.I. & Bayer, M.B. (1989). Introduction. In R.I. Brown, M.B. Bayer & C. MacFarlane (Eds.), Rehabilitation Programs: Performance and Quality of Life of Adults with Developmental Handicaps. Toronto: Lugus Productions Ltd., 1-4.

Some background information on a longitudinal study on the effectiveness of rehabilitation and the quality of life of young adults with mental handicaps in Canada is provided.

Brown. R.I. & Bayer, M.B. (1989). Reflections. In R.I. Brown, M.B. Bayer & C. MacFarlane (Eds.), Rehabilitation Programs: Performance and Quality of Life of Adults with Developmental Handicaps. Toronto: Lugus Productions Ltd., 172-181.

This chapter summarizes the findings of the Rehabilitation Programmes Study.

Brown, R. I., Bayer, M.B. & Brown, P.M. (1988). Quality of life: A challenge for rehabilitation agencies. Australian and New Zealand Journal of Developmental Disabilities, 14(3 & 4), 189-199.

This article presents some of the results of an extensive study on the Quality of Life of people who have developmental disabilities. One hundred and forty-eight adults, who were receiving service from five agencies in western Canada. Their families, and the agencies were studied with the intent to implement some of the recommendations which resulted from Phase I of this study. The results of Phase I, which investigated client and parent/caregiver need, are presented. These results suggested that clients are very accurate in their ability to identify needs and in ranking order of priority but are poor in rating the amount of required need, that parents and clients often rank need differently, that parents believe that training adult clients is the agency’s responsibility, and vocational rehabilitation as it currently exists is not working. The authors found that "...rehabilitation, as it is practiced, tends to be a system which is directed toward keeping people quiet" (p. 191). In Phase II, the authors attempted to place decision making and choice of programming in the hands of the client. They developed a conceptual model of service delivery which places the service worker in the centre of the model with the family and individual, rather than on the periphery. Communication and contact between the client, parent, and service worker is constant and reciprocal. The authors discuss the need for a period of adjustment to allow the parent and service provider time to adjust to a new philosophy. The results seem to indicate that the staff, client, and family all noted benefits in the new approach but suggest that the family and service providers must make a conscious effort to allow the client free choice and not to set up situations in which they ultimately control the client’s choices.

Brown, R.I., Bayer, M.B. & MacFarlane, C. (1989). Summary of practical implications of the study. In R.I. Brown, M.B. Bayer & C. MacFarlane (Eds.), Rehabilitation Programs: Performance and Quality of Life of Adults with Developmental Handicaps. Toronto: Lugus Productions Ltd., 182-208.

One hundred and four recommendations are made based on the data from the first three years of the Rehabilitation Programmes Study.

Brown, R.I., Bayer, M.R. & MacFarlane, C. (1988). Quality of life among handicapped adults. In R.I. Brown (Ed.), Quality of Life for Handicapped People. New York: Croom Helm, 111-140.

Material from the first three years of a six year longitundinal quality of life study form the basis of this discussion. The subjects are developmentally delayed adults participating in community rehabilitation programmes. Client performance in the areas of work, social skills and home living skills are examined. The perceptions of clients and their sponsors regarding current performance, needs and concerns are explored. Agency programmes and their effectiveness are evaluated. Of the many findings, the most important include a need for more attention for the delivery of services within the home and community environment and more training directed towards the needs noted by clients and sponsors to be more effective. Quality of life is a holistic concept, and the focus on vocational training to the exclusion of social and community adjustment is not considered beneficial to the clients. A wide diversity in programme costs and client placements, leads to the suggestion that rather than increasing funding for these programmes, altering their formats may be more effective.

Brown, R.I. & MacFarlane, C. (1989). The views of clients and sponsors. In R.I. Brown, M.B. Bayer & C. MacFarlane (Eds.)., Rehabiliation Programs: Performance and Quality of Life of Adults with Developmental Handicaps. Toronto: Lugus Productions Ltd., 116-137.

The results of two quality of life (QOL) questionnaires administered annually over a three year period are discussed. Year one is used as a baseline, and any changes noted. The perceptions of clients and sponsors regarding accomodation and training, personal possessions, health issues, friendship and communication, abuse, and criminal offenses and finances and expenses were assessed. Differences between male and females and the sponsors’ and clients’ perceptions were noted. Implications for agency programmes were discussed.

Brown, R.I., MacFarlane, C. & Bayer, M.B. (1989). Philosophy of agencies: Beliefs and practices of staff. In R.I. Brown, M.B. Bayer & C. MacFarlane (Eds.), Rehabilitation Programs: Performance and Quality of Life of Adults with Developmental Handicaps. Toronto: Lugus Productions Ltd., 77- 92.

The Value Priority Scale examines the value staff members plae on particular priorities in an agency. Staff-perceptions vary between agency programmes, particularly programme type, but show a high level of consistency within agencies over time. It is recommended that staff and board members examine their agencies’ programme priorities to help ensure priorities are consistent and in keeping with the programme philosphy and goals. Additional questionnaires examine the unmet needs of staff and clients and the responses of frontline staff towards their programme. It is suggested that all staff should be involved in annual programme evaluations.

Brown, R.I., MacFarlane, C. & Bayer, M.B. (1989). Disabled adults: Assessment and evaluation of their peformance. In R.I. Brown, M.B. Bayer & C. MacFarlane (Eds.), Rehabilitation Programs: Performance and Quality of Life of Adults with Developmental Handicaps. Toronto: Lugus Productions Ltd., 93-115.

There are differences between agencies and between clients in the Rehabilitation Programmes Study, as measured by the Adaptive Functioning Index (AFI). Of particular concern is the effectiveness of the programmes in teaching people to live and work in the community. Despite the fact that many clients are ready for community placement with respect to their work and home living skills, they often lack the requisite social skills. The focus on vocational rehabilitation continues despite low rates of work placement and other areas of concern. Clients with high levels of functioning have special needs that must be addressed. Implications for agencies and their programmes are discussed.

Close, D.W. & Foss, G. (1988). Approaches to training: The social skills needed for quality of life. In R.I. Brown (Ed.), Quality of Life for Handicapped People. New York: Croom Helm, 141-163.

Social competence is an important predictor of the success of a person with mental retardation in many areas, yet there is a lack of consensus regarding what the focus of instruction should be. The social validation approach to skills training involves the identification of skills and behaviors that are socially relevant and important to a given individual. It is seen as an effective way for determining which skills are relevant to a specific area. Because of their significance to quality of life, the areas of employment and independent living were selected for analysis. Specific training strategies based on research from the University of Oregon Research and Training Center in Mental Retardation are presented. A model service program teaching the social and interpersonal skills required for employment and independent living is described.

Downey, N.A., Castellani, P.J. & Tausig, M.B. (1985). The provision of information and referral services in the community. Mental Retardation, 23(1), 21-25.

As part of a study on the family support services for persons with developmental disabilities, the Information and Referral services of 133 community agencies in 12 counties of New York State were evaluated for their availability, accessibility and organizational structure. Although Information and Referral is a service that is widely available in community agencies, several problems exist in the service provision. People with developmental disabilities and their families are often unaware that the service exists, there are problems with funding, staff shortages and the information available is usually limited to the agency’s own programs. It is suggested that Information and Referral services should reflect better planning and interagency cooperation to be more effective.

Duker, P.C., Seys, D., van Leeuwe, J. & Willinge Prins, L. (1991). Occupational conditions of ward staff and quality of residential care for individuals with mental retardation. American Journal on Mental Retardation, 95(4), 388-396.

To examine the effects of occupational conditions of ward staff on the quality of residential care for persons with mental retardation, three conditions were assessed: 1) whether the type of contract differentially affect staff’s distribution of activities, 2) the effect of length of duty on quality of care and 3) whether the number of staff members is related to their distribution of activities. Subjects were 30 staff members who were responsible for a total of 39 residents with severe to profound mental retardation. Data was collected over a period of 40 weeks by trained observers. Full time, qualified staff were found to spend more time on organizational activities than with the residents, compared to the less qualified staff members. For part time, certified staff especially increasing the length of duty to over 5 consecutive days had a detrimental effect on the quality of resident care. There appears to be a curvilinear relationship between number of staff present and quality of resident care. It is suggested that staff managers should differentially reinforce staff members for interacting more with patients, rather than simply increasing the number of staff present.

Hughes, Jeffrey & Segall, Alexander (1988). Community Adjustment of Former Residents of the Manitoba Development Centre. Ottawa: National Welfare Grants Program, Health and Welfare Canada.

This report investigated community adjustment of former residents of a residential facility. Community adjustment was defined as 1) community integration, and 2) quality of life of deinstitutionalized people. Quality of life is defined using a "Goodness-of-fit" model, based on Maslow’s hierachy of needs. The working definition of QOL was the degree of personal satisfaction expressed about the individual’s self-reported ability to function independently in the community. The ultimate objective of the research was to identify the best set of predictors of community adjustment. Four such predictors were identified: 1) number of times readmitted to institution, 2) having an available community helper, 3) independent living skills, and 4) socio-emotional behavioural problems.

Janicki, M.P. (1990). Growing old with dignity: On quality of life for older persons with a lifelong disability. In R.L. Schalock (Ed.), Quality of Life: Perspectives & Issues. Washington, DC: American Association on Mental Retardation, 115-125.

Quality of Life (QOL) factors affecting older adults with mental retardation are not much different from those affecting other older adults. Factors contributing to quality of life for all include physical well-being, material well-being, social well-being and cognitive well-being. Societal attitudes towards the elderly and people with disabilities and their effects on QOL are examined. The use of demographics illustrates that we are living in an aging society. The increasing longevity of persons with mental retardation and their increasing visibility in the community are highlighted. The aging of this population provides new challenges for service providers.

Joyce, K., Singer, M. & Isralowitz, R. (1983). Impact of respite care on parents’ perception of quality of life. Mental Retardation, 21(4), 153-156.

The impact of respite care on the perceptions of well-being of parents with a child with disabilities was evaluated in this study. Twenty-four families who had received in-home respite care over a 4 month period completed a questionnaire examining the effect of the service on their family relations, social activities, emotional and physical strains and plans for institutional care. Overall, respite care was demonstrated to have a positive impact in these areas. However families caring for younger children found the service to be more beneficial than those families with an older child or adult with a disability.

Karan, O.C., Lambour, G. & Greenspoon, S. (1990). Persons in transition. In R.L. Schalock (Ed.), Quality of Life: Perspectives & Issues. Washington, DC: American Association on Mental Retardation, 85-92.

Transitions can have a significant impact on people’s quality of life. This chapter examines transition as a lifelong concept and how it affects both the individual with disabilities and his or her support system. While planning for transitional services the needs of the individual should be a priority, rather than forcing the individual to conform. Consumer input is essential if program decisions are to enhance an individual’s quality of life. The importance of support and support for support givers is highlighted.

Kohle, T. (1988). Integrated child development services (ICDS): Programmes and quality of life of children. In R.I. Brown (Ed.), Quality of Life for Handicapped People. New York: Croom Helm, 56-82.

The Integrated Child Development Services (ICDS) in India is an ambitious and coprehensive plan to increase child survival rate amongst the poor and enhance the health, nutrition and educational opportunities of pre-school children and their mothers. Attempts are made to improve the quality of life of all children. Developmental deficits are of particular concern, with efforts being directed towards primary prevention, early detection and an emphasis on parental involvement. The Portage Training project is a technique of behavior modification used in the ICDS with parents. Research findings from studies of the Portage Training interventions indicate that it has much potential as an intervention tool and is very cost effective.

MacFarlane, C., Brown, R.I. & Bayer, M.B. (1989). The rehabilitation agencies. In R.I. Brown, M.B. Bayer & C. MacFarlane (Eds.), Rehabilitation Programs: Performance and Quality of Life of Adults with Developmental Handicaps. Toronto: Lugus Productions Ltd., 68-76.

Descriptions of the five agencies involved in the Rehabilitation Programmes Study are provided. Their physical settings, philosophies and range of services are examined.

Quirk, D.A. & Aravanis, S.C. (1988). State partnerships to enhance the quality of life of older Americans with lifelong disabilities. Educational Gerontology, 14, 431-437.

The Older Americans Act and its network of State and Area Agencies on Aging address the complex needs of the elderly and encourages the coordination of these agencies with other human service systems to better serve this population. The importance of the Older Americans Act and its policy mandates are discussed. Similarities between the aging network and the mental retardation/developmental disabilities network are outlined. It is proposed that the needs of older Americans with developmental disabilities will be best met if these two networks work together.

Schalock, R.L. In press. The Quality Revolution and Its Impact on Quality Assurance and Program Evaluation.

The impact of the concept of quality of life on quality assurance and program evaluation is examined in this paper. It is suggested that quality assurance and program evaluation should be assessed by a number of "critical quality indicators" that reflect a person’s perceived quality of life. A comprehensive framework based on critical quality indicators is presented in the context of quality assurance and program evaluation.

Strain, P.S., Storey, K. & Smith, D.J. (1991). Quality of life outcomes for young children with disabilities: Legislative and service delivery. Early Education and Development, 2(1), 40-52.

Early intervention to improve the quality of life of people with disabilities must have a longitudinal focus to be effective. Quality of life must be defined and appropriate measures created. In the past, the focus has been on quality of process rather than quality of outcome. This paper discusses a longitudinal perspective on early intervention as well as quality of outcome and programmatic features of quality programs.

Sylvester, C. (1989). Quality assurance and quality of life: Accounting for the good and healthy life. Therapeutic Recreation, 7-22.

Quality assurance is rapidly becoming an important concept in therapeutic recreation, but its conceptual status has not yet been made clear. This paper relates it to life, health, welfare and leisure. The aims of therapeutic recreation should be directed towards all human needs not just those of health. Standards conducive to quality of life values must be developed.