Background
There are over 200 family-run organizations across the country specifically dedicated to children’s mental health. Some are statewide family networks, while others are local or regional family-run organizations. All provide a very unique service to communities and their states, often engaging families in creative ways and ensuring that there is family voice involved in decisions that directly impact families of children and youth with behavioral health disorders. Ten statewide family networks were started more than 20 years ago as part of the CASSP Project funded through SAMHSA which later evolved into System of Care Grants to communities and states. For almost 3 decades, family organizations have been an integral partner in System of Care sites throughout the country. Additionally, 16 statewide family networks were established more than ten years ago. At the height of funding, there were a total of 45 Statewide Family Networks, providing support, advocacy and training to both families and professionals in nearly every state in the union.

Although there are vast amounts of anecdotal data and basic quantitative data about the tens of thousands of families reached by these organizations, there has surprisingly not been any national data collected to quantify the impact or measure outcomes of the work that family organizations do. Each state or local family organization collects different data and collects it in a wide variety of ways, often based on what is required by funders or what is necessary to fulfill contractual obligations. For example, SAMHSA requires that Statewide Family Network grantees collect two data sets that must be entered into the TRAC system. The TRAC data sets, however, are not specific to the unique offerings of family organizations and are not comprehensive measures of the breadth and depth of services provided through family organizations.

Compounding the issue of data collection is the fact that family organizations have very different structures. Some states may have state organizations that are small and focused on advocacy with independent local or regional organizations providing direct service to families. Other states may have one large centralized organization with employees posted in regional offices. Many have specific databases to track and bill for services, but many others have only basic database capabilities. The different structures, therefore, present a challenge in standardizing data collection at a national level.

The Data Collection Project
The need for the proposed Data Collection Project is critical. In a changing health care environment, programs must have data to demonstrate their effectiveness. Family organizations often find themselves in a position of trying to “prove their worth.” Without reliable data, this is difficult to substantiate. The Data Collection Project will bring together researchers, policy makers and family leaders to jointly begin to develop national data collection measures and tools. These efforts will additionally contribute to the body of research around family support and the significant impact such support can have for children and youth struggling with behavioral health disorders.

FREDLA will lead the effort as a partner with the Technical Assistance Network for Children’s Behavioral Health (TA Network) at the University of Maryland School of Social Work. The Project, beginning in June 2014, will continue its initial phase through the remainder of this fiscal year and will accomplish the following tasks:

Survey family-run organizations nationwide to ascertain what data is currently being collected, what measures are being used, and how the data is collected and used – this will provide a picture of the current status of data collection by family-run organizations and inform the initial work of the Project
Convene a select group of renowned researchers in the field, respected family leaders from diverse regions, and involved policy makers with knowledge of family support services and organizations — members to be invited in June 2014
This group will identify basic data measures for the work conducted by family organizations, ways in which such data could be collected at the individual organizational level and in aggregate form, and how to support family organizations in implementation – FREDLA will act as facilitator of Project meetings and maintain documentation of progress
The project result will be recommended data measures for use nationally by family-run organizations, strategies for implementing such measures, and suggested ways to use data that is collected for maximum impact (informing policy, quality assurance, funding opportunities, etc.).

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Resources

National Data Collection Tool

National Data Collection Service Type and Definitions