1.3: A Network of Innovators

Implementation of mainstream person-centered planning practices are engineered by system logic. Senior authorities define specifications in consultation with interested constituents, their agents plan and implement the means to meet those expectations. Outside that logic, just at the outer edges of the social care system, there is another source of creative energy for improving the life chances of people who rely on social care. Beginning about forty-five years ago, in a decade of rapid service system growth, innovative practices, including person-centered planning, began to emerge at this edge. Emergence can’t be commanded and controlled as engineering can, but it gives birth to unexpected possibilities.

Reaction to institutional scandals and skilled and tenacious advocacy by influential family voices and professional leaders brought cautious and qualified legislative and judicial statements of rights for people with developmental disabilities. Driven by court decisions, inquiries, and legislative action, public investment expanded. The service sector grew rapidly as money flowed to reduce the institutional census.* There were positive changes: residential services were smaller and located on ordinary streets, physical environments were upgraded, staff ratios increased, health care improved, there was more attention to developing skills, observing typical routines, and exposing people to local settings and activities. Interdisciplinary teams of professionals wrote individualized service plans and set goals that addressed their judgments of individual potential. When the team judged it appropriate, people with developmental disabilities and family members had seats at the table where plans were made for them and a say in goal setting.

Rapid growth also brought in new workers who carried seeds of further change. Demand for staff and front line managers attracted many from outside the professional identities typical of the field. Even in direct support positions more people held degrees in outlying fields of study than ever before or since. Many new workers were active in moments for civil rights and peace and had done terms of voluntary service in community development or were discharging their obligation as conscientious objectors to military service. Hope that activism would bring positive social and cultural change shaped their consciousness. Fans of Ken Kesey’s One Flew Over the Cuckoo’s Nest (1962; film in 1975), these young people were ill-fit to take subordinate places in the established social care hierarchy and unquestioningly follow orders and protocols. Everything was open to question and typical staff client boundaries often melted in shared life experiences.

Across organizational boundaries and outside of formal roles, networks formed among those who did not find a way to the future they desired in mainstream waves of local service growth. Informal networks brought together families with high expectations for support to community living, people with developmental disabilities seeking opportunities to live their lives in ways they valued, and dissident service workers, Those who created these self-organized networks saw themselves working for social justice. They spoke of walking with developmentally disabled people and their families who sought to experience life as citizens with publicly recognized dignity, agency, and capacity to contribute.

Different interests shaped loose and changing networks. Lawyers and their expert witnesses connected, researchers who assisted people with developmental disabilities to blow up professional underestimations of their capacity for learning and performing meaningful work connected, people committed to those whose behavior challenged existing community supports beyond the breaking point connected, family members and educators committed to creating inclusive schools connected. Multiple interests energized connectors among networks. Networks offered mutual assistance in attracting resources and shaped formal conference agendas and informal life in conference hotel bars.

The self-organized network that generated early approaches to person-centered planning took shape around the work of Wolf Wolfensberger. His thinking and the example of his unrelenting advocacy against the segregation of people with disabilities framed and provided a vocabulary for our inquiries into practical support for social integration. Wolfensberger deconstructed the thinking that produced institutionalization, articulated a corrective in his interpretation of the principle of normalization, and framed a range of implementing concepts, including locally governed comprehensive systems of community services, citizen advocacy, and new roles for parent organizations as social inventors (Race, 2003).

Early in the 1970’s, The Canadian National Institute on Mental Retardation (NIMR), founded to strengthen the family voice in policy and practice, adopted and promoted Wolfensberger’s ideas through demonstration projects, policy development exercises, multiple educational events, and publications. Wolfensberger maintained strong ties with NIMR when he moved to Syracuse University in 1973 to establish The Training Institute for Human Service Planning, Leadership and Change Agentry. Both NIMR and the Training Institute were explicitly committed to advocacy for social justice and the development of services that would play a part in shifting the social status of people with developmental disabilities by relentlessly promoting social integration. Syracuse University was also home to The Center on Human Policy a setting where organizers collaborated with sociologists to campaign for community supports based on qualitative research that revealed the dark side of institutionalization and documented the benefits and workings of community alternatives (Ware & Story Sauer, 2021). These initiatives, and a number of innovative agencies and regions, provided multiple opportunities to strengthen our network by working on these organizations’ agendas and strengthening relationships among their leaders.

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* In the US neither the move from institutions nor the mandate foe special education have ever approached full funding. The leading deinstitutionalization case, Olmstead v L.C., instructs states to implement alternatives at “a reasonable place.”