Our children's voice: The evolution of parent advocates in New York state

Date of Award

2001

Degree Type

Dissertation

Degree Name

Doctor of Philosophy (PhD)

Department

Teaching and Leadership

Advisor(s)

Steven J. Taylor

Keywords

Parent advocates, New York, Mental retardation, Family support

Subject Categories

Education | Special Education and Teaching

Abstract

The development of the field of mental retardation, as it exists today in the United States, has been shaped by a limited number of guiding forces. Perhaps the strongest of these has been the powerful parents' movements that started following World War II. Around this time, parents with children who were diagnosed as having mental retardation started looking for programs for their sons and daughters. They also started making efforts to find each other, to learn everything they could about their children's "conditions," and to interest professionals in working with their children.

This study examines the evolution of parent advocates in New York State (NYS). Using the recollections and archives of the parents who founded the New York State Association for Retarded Children, this study (1) chronicles the events that shaped the parents' movement in NYS and the emergence these parents as advocates; (2) describes the world views and experiences that fueled their commitment and involvement as advocates, in some cases for 50 years; (3) highlights the impact of this relatively small group of parents on both the development of the field of mental retardation in general and on service options that became available for their sons and daughters throughout NYS; (4) analyzes the forces and events that influenced and guided the path of their growth, motivation and accomplishments; and (5) explores the commonalities and differences in their development as compared to other advocates in voluntary associations and self-advocates.

The study focuses primarily on the experiences and perspectives of these parents during the association's first 25 years, from its inception to the point where the field became highly professionalized, as they transformed from isolated inexperienced parents into powerful, effective parent advocates. Additionally, this dissertation examines their stated goals, belief systems, and rationales for various actions and directions taken by these parents over time, as individuals and on behalf of their Association.

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