Roy I. Brown

Family Quality of Life in Several Countries: Results and Discussion of Satisfaction in Families Where There Is a Child with a Disability

This chapter examines quality of life satisfaction across life domains in several sources using the same survey instrument. The research is described in developmental sequence and illustrates how different variables and factors play an important role in our understanding of family quality of life where there is a child with an intellectual or development disability. These results illustrate the importance of taking a wide range of variables into account and the effects that they may have both on the child with a disability and on other family members. These include family age, form of disability, and place of origin, along with the types of support that are required. The relevance of comparing families with and without a child with a disability is also considered. The results suggest that both internal aspects of family life, including the nature of a child’s disability, and external factors, such as community and the types of support available for the family, are highly relevant. The data stress family variability and therefore raise questions concerning the flexibility of support and intervention. The discussion suggests the types of support that are needed and indicates ways in which policy may be redirected to support more optimal family quality of life along with their impact for each member of the family, including the child with a disability. The results, from a research perspective, indicate ways in which measurement and comparison between groups need to be improved in terms of hypotheses, questions, and research methodology. However there are sufficient data, both of a quantitative and a qualitative nature, to suggest how changes might be made to improve policy and practice for supporting families, and at the same time positively influencing the adaptation of the child with a disability.

Quality of life issues in aging and intellectual disability

The lifespan of people with intellectual disability has increased dramatically raising new challenges for the field of rehabilitation. This article discusses some of these developments in relation to quality of life. Using findings from studies in relation to aging and intellectual disability, a number of issues including leisure, advocacy, friendship and partnership are raised within the context of an holistic quality of life mode. A number of practical suggestions are made along with implications for research.

Family Quality of Life and Older-Aged Families of Adults with an Intellectual Disability

Aging is a worldwide phenomenon affecting individuals, families and service systems. This chapter explores family quality of life in relation to older-aged families of adults with an intellectual disability. It highlights research, policy and practice using research and examples from the field followed by recommendations for future research and practice.

Quality of life and social inclusion across the lifespan: challenges and recommendations

Abstract Objectives: The concepts quality of life (QOL) and social inclusion (SI) have developed somewhat in parallel but to a considerable degree independently over the last few decades. Each has assets and limitations in terms of comprehensive policy and principles. The article introduces the history of these concepts and compares them in terms of policy and application along with recommendations for research and practice. Results: Terms have not been clearly defined particularly in the area of SI and this was also an initial concern with the development of QOL. The principles and concepts in both areas can enrich one another highlighting concerns in practice, policy, and research. Some of the concepts appear contradictory at times and a ‘mission’ approach in application can lead to imbalance in effective decision making. Conclusions: Understanding of the changes in diagnosis and prevalence in intellectual and developmental disability (IDD) is important along with the social implications for the individual and the family, particularly in relation to inclusion in community living. A clearer understanding of the practical aspects of exclusion and necessary balancing between basic family needs and those of the individual with IDD are required in policy and application. The need for more focused understanding of QOL and SI is discussed in relation to greater application of these areas.

Quality of Life for People with Learning Difficulties: The Challenge for Behavioural And Emotional Disturbance

The concept of quality of life is examined in terms of its relevance to the field of learning difficulties with particular reference to those who also show symptoms of behavioural and emotional disturbance. It is argued that quality of life encourages a re-examination of our understanding of the field of learning difficulties and underlines the need to recognize the role of choice in the development of normalizing services. The implications of this for assessment, programming and service delivery are explored. It is argued that the use of natural environments and the development of support of family members is critical within a quality of life model. Such views have relevance to the way professional practitioners are trained, enabling them to perform effectively away from traditional centres, and in the more natural environments associated with their clients. Finally, it is argued that the notion of quality of life underscores the importance of moving away from traditional, and linear models of labelling ...

The Evaluation of Adult Rehabilitation Programmes

This article provides a description of evaluation procedures and methods which can be applied in the area of adult rehabilitation. The authors consider various models and argue for a mixture within a systems approach, preferably involving longitudinal data. It is also argued that information must be collected. not just from objective measures of performance. but in relation to the philosophy, objectives and goals of the agency. Coherent, integrated approaches improve rehabilitation services, and therefore it is critical that these aspects are measured in any evaluation. A strong case is made for the use of qualitative as well as quantitative analysis, while ensuring that information is collected directly from clients. sponsors and service staff. The authors provide several examples within the area of adult rehabilitation and conclude with recommendations for future service evaluations.

Some Effects of Verbal Instruction on Learning by Developmentally Handicapped Adults

Two studies are presented dealing with the verbal instruction of young mentally retarded adults. The first study examines speed of instruction, and the second study complexity or redundancy within instruction and its effect on the learning and performance of a non-verbal task. The results are described in relation to form of instruction, task, and ability level of the subjects. It appears that increasing the speed of verbal instruction can reduce the level of non-verbal performance particularly in subjects with poor non-verbal scores. Slight increases in speed of instruction can have major and negative impacts. Further, redundancy in verbal instruction inhibits learning in non-verbal tasks and the major damage is associated with individuals who have low verbal ability. The possible relevance of the findings to research and practice within the field of habilitation are discussed.

Prader-Willi syndrome: Quality of life issues in home, school and community

Psycho-social aspects of Prader-Willi syndrome (PWS) can have a profound effect on individual and family well-being, and often become home, school and community concerns. Quality of life considerations for parents and people with PWS are implicit in all aspects of syndrome management. Current quality of life research is reviewed and suggestions made for future research directions.

Social Inclusion: A Proposed Framework to Inform Policy and Service Outcomes Evaluation

Abstract Social inclusion is recognized as a fundamental right in the United Nations Convention on the Rights of Persons With Disabilities (2006). Inclusion is also an explicit goal for community-based services in many countries. However, existing definitions of social inclusion are insufficient to support the development of policies and services, and the evaluation of their success in promoting social inclusion. Furthermore, existing definitions and measures tend to overlook the perspective of persons with disabilities and their significant others. Using a consensus building strategy, we developed a framework of social inclusion, which included the perspective of adults with intellectual disability. The proposed framework supports the development and evaluation of social inclusion policies and service outcomes.

Towards a model of rehabilitation

This article describes, and argues for an integration of behavioural methods to deal with a wide range of persons suffering from disabilities regardless of age.Practitioners require simple straightforward practical and effective strategies, which can help them to select appropriate social, behavioural, and educational strategies along with effective programme components. These are relevant to those who suffer from a wide range of disabilities, including those relating to aging, emotional disorders, physical and mental handicaps. Such an integrated model has relevance to work with families. They, too, are affected by the stresses of disability, and are susceptible to behavioural dysfunction. A number of examples are provided which addresses aspects of behavioural intervention and counselling. The behavioural strategies and attitudes of staff are examined, along with the degrees of structure required in effective rehabilitation counselling, including the processes of empowerment and consumer control.