Part of the Community: Strategies for Including Everyone.
Edited by Jan Nisbet & David Hagner.
Foreword by John O’Brien.
Baltimore: Paul H. Brookes Publishing Co., 2000.
ISBN 1-55766-456-0. 299 pages.
Highly recommended by Elizabeth Bloomfield for OAARSN
Most of the 22 contributors to this book, including the two editors, are with the Institute on Disability (IOD) at the University of New Hampshire that has been a crucible of systems change since the late 1980s. Nearly all work in some capacity with New Hampshire children and adults who live with disabilities. Books of essays by many authors may seem uneven and fragmented. This book is unified by the authors’ shared understanding of (in John O’Brien’s words) “inclusion as a horizon for goal setting and problem solving the right starting point morally, legally, economically for practice and policy. Disability poses no barrier to meaningful and rewarding participation in every aspect of community life.”
In the first two chapters, the editors reflect generally on the IOD’s experience of systemic reform and the potential for change in the context of the two major paradigm shifts in the disability field since the late 1960s – first, from the facilities paradigm to the programs paradigm, and second, from programs to supports. Jan Nisbet (IOD Director) sums up the lessons learned:
- Celebrate achievements but recognize failures
- Balance systemic reform with individual support
- Avoid advocating at the expense of systems change
- Stay close to people
- Have a big picture with a clear focus
- Invest in leadership but don’t rely on leaders
- Commit to reforming personnel preparation at all levels
- Remember that systems are made up of people
- Encourage support-committed champions
- Watch out for beavers (colleagues and associates who learn their own personal power and strength to create change but move away to an agenda contrary to inclusive education and community)
- Retreat when necessary to regroup the troops
- Look nationally but retain local ties
- Create an environment in which new ideas are required as a matter of practice.
The essays in Part of the Community go far beyond the abstract rhetoric of inclusion and systems change to tell us about the details – “the difficulties and tragedies, the successes, the vast scope of strategies and tactics required, the subtle decisions made on a daily basis, and the human side of change for both the change agents and those affected by change” (xv). Scores of fascinating personal stories illustrate the generalizations.
The middle chapters of the books are concerned with achieving inclusion for successive age-groups. “Catching the wind, changing the rules” is about enhancing inclusion for preschoolers and following the guiding principles of:
- All children and families belong in communities
- Supports and services should only be as special as necessary
- Children with disabilities and families must be supported with a family-centered approach and a “whatever it takes” attitude on the part of providers
- Solutions to problems in a given community lie with the people who live and work in that community.
Three chapters are about inclusion in New Hampshire schools. Two chapters discuss adult issues, of concern to our OAARSN network. “Postcards on the refrigerator: changing the power dynamic in housing and assistance” is about New Hampshire’s Home of Your Own Project. “A multielement approach to creating change in a state employment system” is about the New Hampshire Natural Supports Project, from which the following lessons were learned:
- Focus on the individual
- Supported and typical employees require similar time and strategies for training and support
- Employees prefer to be trained and supported by co-workers
- Match employee support needs with the support capacity of worksites
- Natural supports may help more people benefit from supported employment
Chapter 9 is about the roles of individuals with disabilities and their families in “the discovery of a vision of disability rooted in high expectations and positive dreams of making a lasting impact on the culture in which we live.” In projects like the Minnesota’s Partners in Policymaking or New Hampshire Leadership Series during the 1990s, family members and individuals with disabilities have been recognized as key agents in systems change and have been supported to assume these roles. The following factors are found to be critical in facilitating systems change:
- Supporting people who share similar struggles to come together to exchange information and strategies for change
- Encouraging an atmosphere that is conducive to collaboration, dreaming of positive futures, and shared problem solving
- Providing resources for participants to maintain their basic needs without worry (child or respite care, accommodation, meals, travel expenses)
- Delivering the “latest and the greatest” information on recommended practices in the field of disabilities
- Participating in leadership-building events with technical assistance from recognized leaders in the field
- Using the legislative process and community organizing strategies, with an emphasis on skills for negotiation
- Telling personal stories, of the utmost importance in changing hearts and minds.
In the final chapter “Witnessing the possible for people with disabilities”, Thomas M. Reischl ponders the implications of the message of the community inclusion movement in the 1990s: “Expect success, and expect to be creative to make it happen.”
For an outline of chapter titles and authors:
For an excerpt from Chapter 2 about the dramatic changes in human service systems and what more is needed for the conceptual vision of community inclusion and self-determination to filter down to the level of service provision.