Chapter 14: Community Living: Lessons for Today

Community Living: Lessons for Today

1991

By Steven J. Taylor and Julie Ann Racino

Syracuse University, Syracuse, New York

     Back in 1991, we began: 

       "Over the past 5 years, we have studied community living programs for people with the most severe disabilities- the organizations, the practitioners, the lives of the people with disabilities, the services and supports, and the government and community context. We also have had an opportunity to observe the participation of people with disabilities in the community- their relationships, their associations and activities, and the way in which informal networks and formal systems interact."

      "The most important lesson we have learned is that we continue to learn. As we traveled the country looking at innovative programs and services and working with states and agencies, we found ourselves constantly refining our thinking about community living, revising our assumptions about how communities and states work, and recalling lessons we have previously learned. Let us tell you about some of the lessons as we know them today". 

We continued briefly: On Deinstitutionalization, On Limitations of Services and Service Systems, On Relationships, On Community, On Supports, Not Facilities, On Families and Their Children, On Homes and Support, On Living A Meaningful Life,  On Professionals and Change, On Changing Service Systems, On Government, and On Diversity (pp. 235-238). 

     Now, the final section was on Concepts: "Concepts, ideas and principles that help us get from on place to another. Yet, they must be viewed in historical context. The ideas that guide us today, can mislead us tomorrow. Concepts that should be able to move us beyond where we are today are:

* Community Integration

* Informal Supports

* Friendships

* Self-Determination

* Nonaversives

* Own Homes

* Personal Assistance Services

* Circle of Friends

* Bridgebuilding

* Supported Jobs

* Building Community

* Choices

* Community Participation

* Permanency Planning

* Housing and Supports

* Individualized and Flexible Supports

* Life Sharing

     "Concepts such as normalization, integration, and mainstreaming make sense only in a society where people with disabilities cannot move freely in and out of relationships and participate fully in community. Having those concepts does not mean that we have arrived; it only means that we recognize that people with developmental disabilities have been denied."

     "As times change, there arises a need to find new concepts and ideas suited to those times. We must be prepared to abandon old concepts and find new ones to guide us through the challenges and dilemmas we will undoubtedly face." (p.238).

Taylor, S.J. & Racino, J.A. (1991). Community living: Lessons for today. In: L.H. Meyer, C.A. Peck, L. Brown (Eds.), Critical Issues in the Lives of People with Disabilities (pp. 235-239). Baltimore, MD (Sydney, Australia, London, Great Britain, Toronto, Canada): Paul H. Brookes. 

     Community Living Concepts Today:

A Brief Note

Julie Ann Racino

2018

     In 2018, I attribute a circle of friends to the work of Judith Snow in Canada and the inclusion groups. In fact, the friend might be an owner of a cafe, or a professional service provider. Parents for Positive Futures were instrumental in taking hold of professional supported employment and making it real jobs (e.g., family businesses and future roles).  We thank the community groups in education and community development for their work on bridgebuilding (John Kretzmann, John McKnight, Zana Lutfiyya, Steven Taylor, Robert Bogdan). Believe it or not, the federal government itself followed community integration proposals by community participation proposals for NIDRR centers. L'Arche and lifesharing (e.g., Camphill) continues to be an ideal for religious communities. 

     Supports continue to be popular, including in facilities (e.g., hospitals), as family approaches, and as person-centered planning. Academic contributions on supports were often basic (e.g., instrumental, financial, cultural) but significant (e.g., negative support). In addition, women particularly analyzed the invisible contributions that "made things happen" and resulted in better lives and situations. As was not expected, "individualized and flexible" was often the former, with the latter often flexible for the workers, agencies or management. "Own home" led the way to options other than facility-based planning (e.g., intermediate care facilities, group homes), and housing and support (e.g., supportive living, supported housing, housing and health care) were essential for home and community-based services waivers (demonstrations). Supports became part of the research on social networks.

     Choices and self-determination became hallmarks of "user-directed services", a term associated with personal assistance services. Of course, the latter independent living and "parental voluntary" associations became large service delivery providers, always with the advocacy and community at the front of these organizations. Friendships from "the Strullys" (Jeff and Cindy) curbed the tide of "aversives and punishment" that was pervading the professional domains, and made even the concepts of inclusion possible. Community was thought about from the university sector, and "never really captured" the social networks and relevance of those involved (e.g., even low income of own families). However, community is throughout the literature as the reframing of the "institutional mindset" with professionals on both sides of the river (e.g., David Schwartz, Crossing the River).  

    Permanency planning begins federal law for planning for children, and enters into required professional roles for social workers, and laws on child protection. The hope for family support to replace the framework of "abuse and neglect" became service options and often "removed the families from the judicial neglect and abuse system" through separate systems of workers and community systems. This era marked the UN Rights of the Child which later became supplemented by the rights of parents in societies (current at UN, 2018 at ethnic and cultural minorities); thank you to the National Council on Disability for its successful "completion of this academic track". 

       Community living is prominent today, even more so than in the 1980s, being a federal term at the departmental and legislative levels. And for those of us who know the governments, "be careful what you wish for" still is the case in 2018, especially at the public health-criminal justice-MLTSS interfaces with the essential "education and rehabilitation" foundations of Long Term Services and Supports (LTSS). Independent living and supportive living remain popular terms with family caregiving gaining in ascendancy at the "aging of the baby boomers". 

Racino, J.A. (2014). Public Administration and Disability: Community Services Administration in the US. London, Boca Raton, FL, and NY, NY: CRC Press, Francis and Taylor.

JAR2018