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Disability and the Family: A Guide to Decisions for Adulthood.

Disability and the Family: A Guide to Decisions for Adulthood

Considerable attention is being paid to the transitions being made by young people who are coping with developmental disabilities as they move from adolescence to adulthood as well as from schools to adult service systems. The myriad tasks and issues involved in these transitions are complex for professionals, let alone for parents and other family members. This book, written by professionals who are experienced in the developmental disabilities field, is a resource manual designed for parents and families who are planning for the future of their disabled members.

The book is comprehensive and covers a number of critical themes in 39 chaptere and six appendices. The first two chapters of the book provide a rationale for planning for the future of a family member coping with a developmental disability and they deal with the values and goals of the planning process. These chapters introduce some important themes that are developed throughout the book including the importance of preserving the individuality of the family member, recognizing the uniqueness of each family, and incorporating both formal and informal support as part of the planning process.

Chapters 3 through 8 form the first major section of the book, entitled "Decision-making." The authors identify important decisions that adults with developmental disabilities will make including ones addressing life in the community, relationships with other people, residential arrangements, employment, and finances. The authors then build a framework for decision-making that leads to thorough discussions of mental competence, consent, and guardianship. In these chapters family members are provided with practical guidelines on assessing the person's mental competence and on the availability of various forms of guardianship.

The next eight chapters (9 through 16) form Section II and provide parents and family members with practical information on financial and estate planning and government benefit programs. The authors provide an excellent discussion of various social security programs including the intricacies of Social Security Disability Insurance and Supplemental Security Income. Chapter 12 provides information on Medicare and Medicaid as well as food stamps and housing programs like Section 8. These programs are not merely described and clarified but analyzed in relationship to the goal of formulating a viable package of supportive services for adults with developmental disabilities. The final four chapters of this section focus on the writing of Last Wills and the design of Trusts, both of which are related by the authors to preserving the family member's access to government programs.

Section III of the book, entitled "Planning for Life in the Community," is based on a preference checklist that can be used by families to identify their preferences for their members with developmental disabilities in the areas of leisure, interpersonal relationships, residential arrangements, and employment. The use of the preference checklist is demonstrated by the authors in several of the chapters and integrated with a prescribed process of decision-making, the steps of which are outlined in Chapter 3. These key steps involve: (1) defining the problem or need; (2) brainstorming; (3) evaluating and choosing alternatives; (4) communicating the decision to others; (5) taking action; and (6) evaluating the outcomes of an action.

In these chapters the authors provide some valuable information to parents and family members concerning the availability of various service alternatives. Different types of residential settings are identified and the authors provide practical procedures for how family members can assess these settings in relationship to the preferences of the person with a developmental disability. In addition, the authors discuss the strengths and weaknesses of various employment alternatives such as workshops, supported employment, and competitive employment.

The final section of the book addresses advocacy. The four chapters devoted to this topic include content on how parents can assume advocacy roles within existing service systems, how parents can work to create new service alternatives, and how people with developmental disabilities can learn self-advocacy skills.

The appendices contain useful information and include a glossary that defines rehabilitation and legal terms. Other appendices contain a listing of advocacy and service resources organized by states, forms for assessing preferences and mental competencies, recommended readings, and sample documents for incorporating agencies founded by family members.

As a reference resource for parents and family members, this book covers a broad range of substantive material that is geared to the important transitions that a person with developmental disabilities will make. The book also is practical in its focus on families planning for the residential, financial, employment, and community living needs of people with developmental disabilities.

Parents and family members may find the content tedious, especially the material on guardianship and financial planning which is sometimes presented in a technical and legal manner. Yet, for families which are assisting their members with developmental disabilities to make critical choices about adulthood the content of this book is worth careful study and perhaps rereading if necessary. Rehabilitation and social service professionals also will find this content useful and they certainly may want to recommend this book to families who are planning for the future of their members who have developmental disabilities.

David P. Moxley, Ph.D., Assistant Professor, Wayne State University, Detroit, Michigan.
COPYRIGHT 1989 National Rehabilitation Association
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Copyright 1989, Gale Group. All rights reserved. Gale Group is a Thomson Corporation Company.

Article Details
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Author:Moxley, David P.
Publication:The Journal of Rehabilitation
Article Type:Book Review
Date:Oct 1, 1989
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