Project Description:
In 2009, of the 1.04 million people with intellectual or developmental disabilities (IDD) receiving publicly funded support services, 599,152 (58%) lived in the home of a family member 122,088 (9%) lived in homes of their own and 317,427 lived in residential facilities or host/foster family settings (Lakin, et al., 2010). The University of Minnesota's Research and Training Center on Community Living (RTC), with the National Association of State Directors of Developmental Disabilities Services (NASDDDS) and the Human Service Research Institute (HSRI) propose to work collaboratively to establish and refine a comprehensive program of annual data collection and longitudinal data analysis, policy studies and broad-based dissemination to better understand and promote effective supports for families and for individuals who direct their own support. The data collection and reporting system will build on existing capacity to capture progressively more sophisticated information about publicly funded supports for families and individuals.
The RTC and its partners are uniquely qualified to carry out this project. The RTC's Residential Information Systems Project (RISP) has tracked the status and trends in residential supports for people with IDD since 1977. RISP data are widely used in policy development, evaluation and advocacy. The Supporting Individuals and Families Information Systems Project (SIFISP) uses a common metric and a point in time data collection process to gather information from states to help federal and state agencies understand the current status and emerging trends in supporting families and individuals with IDD living in homes of their own or with family members (including consumer direction). Project data will be used to compare and contrast services and expenditures targeting the person with IDD versus those targeting the family members with whom they reside, and to compare services for children versus services for adults with IDD. To the extent possible we will also collect and report on characteristics of consumer (or family) directed supports. The SIFISP project will be substantially enhanced by its partnership with the RISP project, data, established relationships with state directors and other resources. The goals, objectives and methods of this proposal have been reviewed and are supported by the NASDDDS research committee, AUCD, NCDD and many family support allies.
Project activities include: a) Establish a project advisory capacity to include people with IDD, families, advocates, and representatives of UCEDDS, DD Councils and P & A systems; b) Develop and implement a data collection process and instrumentation to gather national and state-by-state data about in-home supports for families and individuals with IDD; c) Develop and maintain an interactive website for the project to track key informants, gather project data, store project data, provide a data dashboard, and produce standard reports as well as customized reports to communicate project findings; D) Conduct annual supplemental studies of existing data sets, including the National Core Indicators, or special surveys on service outcomes, trends and innovations; e) Develop annual electronic and paper reports for various audiences; f) Provide technical and informational assistance regarding family support; and g) Ensure effective project management and evaluation.
