SUPPORTED LIVING RESOURCES

by Kathy Hulgin and Pam Walker

June 1997

This article features annotations of some key materials related to supported living. Supported living has developed over the past 10 years or so as the practice of supporting people, including those with severe disabilities, to live in their own homes, gain control in their lives, and to become valued members of their communities. The materials featured below include: (1) general materials and resources about the concept and practice of supported living; and (2) descriptions of specific supported living implementation.

What Is Supported Living: General Supported Living Resources

Hulgin, K. (1996). Innovative practices in supported living: An overview of organizations, issues, and resource materials. Syracuse: Center on Human Policy.

This is a compilation of a wide variety of resources related to supported living. It begins with an introduction to the concept of supported living. Next, description is provided of a number of agencies across the country that offer supported living services, including some that have converted to supported living from more traditional service approaches. The following section outlines several considerations in implementing supported living, including: housing, support, person-centered planning, individualized funding, and service brokerage. A final section contains annotations of numerous written materials related to supported living, as well as descriptions and contact information for resource organizations.

IMPACT: Feature issue on supported living, Volume 8(4), Autumn 1995. Minneapolis: Institute on Community Integration and the Research and Training Center on Residential Services and Community Living, University of Minnesota.

In this issue of IMPACT, leaders in the development of supported living describe the challenges, issues, and accomplishments of this movement. Articles describe: what supported living is; use of Medicaid funds and supported living services; moving from philosophy to practice; as well as a number of supported living implementation efforts from state, local and individual perspectives. Also included are annotations of numerous resources related to supported living.

O'Brien, J. (1993). Supported living: What's the difference. Syracuse: Center on Human Policy.

In this article, O'Brien distinguishes between supported living and other service approaches. He argues that understanding supported living requires a reconsideration of assumptions and behavior toward people with disabilities. The article begins with descriptions by service providers who have pioneered the approach of experiences which have enabled them to step outside the assumptions and practices that usually govern service providers. This is followed by the identification of issues that should goern supported living services and a concluding list of the obligations of service providers to individuals and their friends and families.

O'Brien, J. & Lyle O'Brien, C. (1994). More than just a new address: Images of organization for supported living agencies. In V.J. Bradley, J.W. Ashbaugh, & B.C. Blaney (Eds.), Creating individual supports for people with developmental disabilities (pp. 109-140). Baltimore: Paul H. Brookes Publishing Co.

In this chapter, O'Brien and Lyle O'Brien explain the need for new ways of thinking about organizations and or organizing to implement a supported living approach. They explain that supported living involves a new mindset in working with people, one which is not compatible with many existing service organizations. More responsive organizations will facilitate positive relationships with people receiving services and the opportunity for continuous learning from the effort to support them. The chapter includes ideas for building new structure and uses of power within agencies. For example, it describes a new way of building effective teams and responsibilities of directors. The chapter concludes with a discussion of the need to view organizations as social units rather than the traditional machine image if these changes are to be implemented successfully.

O'Brien, J., & Lyle O'Brien, C. (1995). Living with the questions: Notes from a gathering of people concerned with supported living. Lithonia, GA: Responsive Systems Associates.

This report was generated from a gathering of innovators in the supported living movement including: people with disabilities, family members, service providers, and system managers. Participants of the gathering drew upon their experiences to describe issues related to supporting people to live in their communities. Their experiences provide an in-depth understanding of this process. Topics include contradictions with system rules, how support makes a difference in people's lives, concerns in the day-to-day work of service providers, and strategies for growth of supported living. The report ends with reflections by several participants.

Supported Living: Agency Examples

Chernets, G. (1995). Innovation in the way people with disabilities can be supported to live and participate in community life. In L. Nadel & D. Rosenthal (Eds.), Down syndrome: Living and learning in the community (pp. 256-262). New York: Wiley-Liss, Inc.

This chapter, written by a parent of three daughters, two of whom have disability labels, describes the development of two housing cooperatives and a support organization which works in conjunction with cooperatives to support members with disabilities. The coops--Courtyard and CHORD--are committed to creating welcoming, inclusive, supportive communities representing people of various ages, income levels, abilities, and cultural origins. The support organizations, NABORS, works in conjunction with the coop communities. In addition to describing the philosophy and organizational structure of the coops and NABORS, the author discusses some of the experiences of her daughter within the coop.

Hulgin, K. (1996). Jay Nolan Community Services: The advantages and dilemmas of converting quickly from group homes to supported living services. Syracuse: Center on Human Policy.

Jay Nolan Community Services is a nonprofit organization that provides a range of services to people with autism and other developmental disabilities in Los Angeles, California. Since January 1993, this agency has made remarkable changes in the way that is provides residential services. It has moved from operating group homes to supporting people to live in their own homes. This report, based on a visit in November 1995, describes this process of change.

The first section outlines the agency process of transition from group homes to supporting people in their own homes. This section includes a discussion of significant opportunities and strategies that contributed to the agency's success in this relatively quick change process, including: (1) learning from other agencies that had been successful in developing supported living services; (2) culturing the commitment and skills of a team of staff; (3) clarifying issues related to decision making power; (4) giving families opportunities to learn about supported living; and (5) agreeing to shift to supported living services without asking for increased state funding.

The following section describes ways in which the agency has begun to identify and respond to the needs and preferences of individuals over the long term, including: implementing circles of support; rearranging staff responsibilities; providing continuous opportunities for learning; and working to gain system support. Another section describes some specific changes that have occurred in a few people's lives. And, the report ends with a summary of lessons that have emerged from implementing a supported living approach in this agency.

Kiracofe, J. (1994). Strategies to help agencies shift from services to supports. In V. J. Bradley, J. W. Ashbaugh, & B. C. Blaney (Eds.), Creating individual supports for people with developmental disabilities (pp. 281-298). Baltimore: Paul H. Brookes Publishing Co.

This chapter draws upon the experiences of "change agents" at the Human Services Institute (HSI) in Maryland in their work to help agencies move from traditional modes of services to an individualized support approach. The chapter begins with an examination of the factors or characteristics of an agency that indicate a willingness to change. Next, various levels of change are described, including: change in structure, change in technology, change in behavior, and changes in values and assumptions.

The chapter then outlines eight elements or steps of successful agency change: (1) establishing commitment; (2) building ownership of key stakeholders; (3) setting the tone; (4) trying a new way; (5) reflecting and sharing; (6) follow-up training and consultation; (7) analyzing findings and implications; and (8) developing an action plan for constructive change. This is followed by descriptions of the process of change within two agencies.

Klein, J. (1992). Get me the hell out of here: Supporting people with disabilities to live in their own homes. In J. Nisbet (Ed.), Natural supports in school, at work, and in the community for people with severe disabilities (pp. 277-339). Baltimore: Paul H. Brookes Publishing Co.

Through a compilation of personal stories, this chapter describes the provision of community supports for adults with developmental disabilities developed by a residential support program in Greeley, Colorado. The first section outlines Jeanne's story of transition from an institution to her own home. Next, a brief historical background of the evolution of residential services in provided, as well as a discussion of this program's transition from providing residential services to residential supports. The fourth section contains Karren's story as further illustration of various supports. This is followed by a section which proposes a set of values for residential support. The sixth section outlines the process for developing residential supports, using Sharon's story as an example. Finally, the chapter concludes with an examination of what has been learned from this approach to providing supports and implications for future directions.

Walker, P. (1995). From a community residence to a home of their own. Syracuse: Center on Human Policy.

This monograph describes the process that enabled two women to move from a community residence to a home of their own. It discusses agency efforts that facilitated the process. The report gives detailed information on the agency's collaboration with a community housing agency and how the purchase of the home was financed and approved. In addition, the report describes the supports that were arranged to assist the women to live in their new home and the changes the agency made in thinking about supports for people in their own homes versus agency-operated facilities.

Kathy Hulgin is Research Associate at the Institute for the Study of Developmental Disabilities, Indiana University; Pam Walker is Research Associate at the Center on Human Policy, Syracuse University.

The preparation of this article was supported in part by the National Resource Center on Community Integration, Center on Human Policy, School of Education, Syracuse University, through the U.S. Department of Education, Office of Special Education and Rehabilitative Services, National Institute on Disability and Rehabilitation Research (NIDRR), through Contract No. H133D50037. No endorsement by the U.S. Department of Education should be inferred.

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