Embarking on a New Century: Mental Retardation at the End of the 20th Century, edited by Robert L. Schalock, Pamela C. Baker, and M. Doreen Croser. Washington, DC: American Association on Mental Retardation, 2002.
In this book the authors summarize and reflect on a 25-year span of history in the field of mental retardation, at the juncture of the 20th and 21st centuries. This monograph describes some of the major shifts in public policy and service delivery that occurred during this time period and projects future trends and emerging issues as we enter a new century. Twenty-eight contributors provide perspectives on varied contexts of change, including legislation, courts, institutions, behavioral science, mental health care, family support, self-advocacy, and direct care workers.
The editors characterize the period from 1975 to 2000 as a “time of challenge, change, and controversy” in the field of mental retardation, with shifts from institution to community, segregation to inclusion, and services to supports. Most notably, the field of mental retardation experienced a “significant paradigm shift in how we view and approach persons with mental retardation,” as reflected in changing disability concepts, classification, definitions, and terminology. Other significant end-of-20th century developments described in this volume are the growth of self-advocacy, increased emphasis on consumer self-determination, person-centered planning, and quality of life. In terms of policy shifts, Croser provides a detailed account of federal disability legislation from 1975–1999, and Gettings offers a sweeping view of public policies and the changing role of government in meeting the needs of this population. Most of the chapters provide in-depth discussions of the changes and challenges in specific service delivery contexts, including mental health, early intervention and prevention, health, and education.
Throughout this volume, the role of the American Association on Mental Retardation (AAMR) in helping shape public policies and services is highlighted. It is impressive to examine the leadership role played by AAMR in many contexts, including understanding, defining, and classifying the concept of mental retardation; developing and promoting standards of quality in services and supports; helping shape the changing nature of institutions; promoting community-based services; legislative and judicial involvement; and self- and cross-disability advocacy. This organization has influenced our field through policy development, legislative reforms, journals and other publications, conferences and workshops, advocacy, and public education. The AAMR has clearly been influential in addressing the challenges and controversies in our field and will likely continue to play a critical role. Gettings recommends in his chapter critical steps that AAMR should undertake to prepare for the “new public policy environment that is emerging.”
Some of the most interesting discussions in this book relate to the various authors' projections about future trends and challenges that the field of mental retardation will face in the 21st century. For example, Schalock discusses how fundamental concepts, terms, and definition of mental retardation will likely evolve; Gardner ponders the future of quality in services and supports; and Larson, Lakin, and Hewitt discuss the crossroads and corrective strategies needed to overcome workforce challenges. Ficker Terrill discusses trends outside of the field of disability that will impact people with disabilities and their families in the future, including technological innovations, genetic testing and bioethics, and workforce development. These “crystal ball” projections provide some creative insights and food for thought. In the concluding chapter, the editors attempt to synthesize the various authors' future projections, highlighting six critical issues and challenges that the field of mental retardation faces: (a) the evolving service delivery and funding system; (b) naming, defining, and classifying; (c) a continued focus on quality; (d) the supports paradigm; (e) early intervention and the future role of secondary prevention; and (f) redefining facility-based service options.
Although this monograph provides breadth in its discussion of wide-ranging issues, the readers may sometimes yearn for a more focused, in-depth examination of specific issues (alas, the breadth vs. depth dilemma). The changing demographics of the population of persons with mental retardation are, surprisingly, not examined in this volume (other than brief references in chapters by Schalock and Ficker Terrill). This is unfortunate because the increased lifespan of persons with mental retardation and the consequent growth in the size of the aging population with mental retardation are significant societal trends. A chapter on analysis of trends in the demographics of disability and implications for programs and policies would have been helpful. Similarly, socioeconomic and environmental factors that contribute to the prevalence of disability (e.g., poverty, unemployment, inadequate housing, and environmental toxins) should be examined as well as current and needed public policies to address these systemic barriers.
Another topic not sufficiently examined in this volume is the major strides in biomedical, neuroscience, and genetic research and treatment related to mental retardation and other developmental disabilities. In tandem with these scientific advances, ethical challenges and dilemmas have emerged regarding the use of new information and technology in the prevention and treatment of disability. Although several authors in this book briefly refer to scientific advances of the last 25 years, the ethical implications for individuals with disabilities, families, and health care providers warrant in-depth discussion. Some of the ethical issues currently facing our field relate to genetic testing, gene therapy, participation in research experiments, end-of-life decision-making, and assisted suicide.
In summary, Embarking on a New Century provides breadth in the authors' discussions of the past 25 years and stimulating deliberations of future challenges. It is interesting to note that AAMR has also published another “century” monograph addressing this time period, Disability at the Dawn of the 21st Century and the State of the States, edited by David Braddock (2002). Many of the 20th century trends examined by Braddock are similar to those identified in Embarking on a New Century. The Braddock volume differs in its broader cross-disability perspective and its detailed state-by-state data on public financial support for disability services. Together, these two AAMR monographs serve as complementary and reflective bookends, documenting changing concepts, policies, and services at a critical juncture in the field of mental retardation. It will be interesting in coming years to assess which projections actually took shape and what factors or events were unforeseen. Will the beginning of this new century follow the same trajectory as the past 25 years? Or will there be new directions in our concept and understanding of mental retardation and in policies and services?