RRTC on Policies Affecting Families of Children with Disabilities
PI: Ann Turnbull, EdD
Ann Turnbull, EdD, of the University of Kansas Center for Research, Inc. (commonly known as the "Beach Center"), which houses the RRTC on Policies Affecting Families of Children with Disabilities, is using RUA funding to support the expansion of a "community of practice" among families of children with disabilities, practitioners, policy leaders and researchers. A community of practice (CoP) is an association of learners who are jointly working on expanding knowledge and understanding of a topic. In this case, the RRTC has organized a CoP on family support in early childhood programs. The next step in the process is to move from face-to-face meetings of the CoP to a "virtual" meeting place using a specialized on-line program to facilitate discussion and identification of best available research, and family and professional wisdom about various family supports. Their RUA will evaluate the CoP processes, which will also have a practical outcome: CoP members will design a framework for policies and practices to implement evidence-based supports for families of children with disabilities. Beyond the expansion of the evidence-base of practices related to families, the goal is that a minimum of one state will adopt this policy framework and a minimum of two early intervention agencies will adopt the framework to offer services and measure outcomes based on these services.
Dr. Turnbull's proposal for the RUA gives an overview of the genesis for this research utilization activity and how it fits into the RRTC's larger scope-of-work. Findings from a Beach Center study on family "quality of life" were published in 2003 in Volume 41(3) of the journal Mental Retardation. The article was later summarized in one of the center's Research Highlights.
After a less formal discussion at the Alliance for Full Participation Summit in August 2005, some participants in this RUA's CoP gathered in January 2006, when the Beach Center on Disability at the University of Kansas hosted a National Summit on Family Support for Enhancing Families' Quality of Life. The Beach Center summarized the proceedings. Dr. Turnbull gathered CoP members again in October 2006 at the Division for Early Childhood (DEC) Conference, held in Little Rock, AR. [The DEC is one of 17 divisions of the Council for Exceptional Children (CEC).] Dr. Turnbull presented the Family Support Consensus Framework that was emerging from CoP activities. Discussion among CoP members at the conference was also summarized. The participants met again in Washington, DC on February 28, 2007 at the Early Childhood Family Support Community of Practice (CoP) Inter-agency Meeting, which convened representatives from over two dozen agencies, organizations and research entities. Progress on the RUA is outlined in an overview paper on CoP activities shared with the RUSH project in April 2007, the project's first quarterly report (May 2007), second quarterly report (August 2007), and third quarterly report (December 2007). The December report includes an appendix with a copy of the survey the Beach Center is using to evaluate the COP's impact.
An important output of the CoP is to gather directly from families their stories and the resources they recommend. These sources of what the Beach Center considers as forms of often-neglected "wisdom", as well as more typical research-oriented products, will be posted on the CoP's Web site. Information about how to join this CoP is available at www.beachcenter.org.
