2010 RTOI: Benchmark Measures for Early Identification/Early Intervention Systems

August 17, 2010

Two Years

Level of Funding:
$100,000 per year

Project Description:

BACKGROUND: The Learn the Signs Act Early campaign is a health education campaign focused on educating parents about developmental milestones and early warning signs of developmental delay and autism spectrum disorders.  The campaign aims to increase parental knowledge of developmental milestones so that when a child does not reach a specific milestone a parent will note this delay and take action seeking evaluation for that delay.  
In order to understand the impact of projects that aim to identify children with developmental delays, it is important to understand the data systems that exist to capture when and how many children are screened, assessed and ultimately diagnosed with a developmental delay or disability. In addition, it is important to have an accurate picture of when and how many and when children are being screened, assessed and diagnosed following identification of a concern for developmental delay.  This project is NOT intended to assess the effectiveness of the individual components (e.g., quality of screening), but to examine performance measures for the overall system focused on screening, assessment and diagnosis.

PURPOSE:  The purpose of the study is to determine how screening of all children, assessment of children with potential developmental delay, and diagnosis of children with developmental disabilities are currently being measured in the U.S. and to create reasonable benchmark measures that can be used as key, standard components of early intervention systems.

The research plan should consider the following:

  • An environmental scan looking at current state or local data systems which measure the number of children and timing of the following key components of early intervention: screening, assessment and diagnosis
  • Develop benchmark measures for screening, assessment, and diagnosis
  • Pilot test the benchmark measures in one or two areas to assess their feasibility and usefulness

Successful applications will include the following:
1. Demonstrated knowledge of early intervention systems and how they track children screened, assessed and diagnosed
2. Strategies for collaboration other experts, and  key state and local entities which already measure components of the early intervention systems
3. A clear description of the purpose of the proposed project, research or other methods to identify appropriate data, and analytic plan, including a timeline of activities
4. Description of benefits and barriers to identify existing systems measures and collecting data
5. Strategies to develop appropriate research methods (such as surveys and interviews with key stakeholders)
6. Strategies for pilot-testing draft benchmark measures
7. Plans for submission of progress and final reports, and dissemination of findings
8. Detailed budget

Preferences will be given to applicants who:
1. Demonstrate knowledge of and experiences with disability research
2. Demonstrate familiarity with early intervention systems
3. Have prior experience in assessing early identification systems
4. Demonstrate expertise in measuring early intervention system components

Study Focus:
The Letter of Intent (LOI) should demonstrate the researchers have an understanding of the issues surrounding early identification of young children with developmental delays. The LOI should convey an understanding of the early identification systems and access to potential collaborators to pilot test benchmarks in a pilot project.

The research proposal should describe a research approach to performing an environmental scan of current data models which will guide development of benchmarks that will serve as metrics for assessing early identification system effectiveness.  Finally, the proposal should provide a plan to pilot test the proposed benchmarks.

The letter should:

  • provide an overview of the proposed purpose, research design and analytic plan,
  • clearly indicate the demonstrated experience in early identification and intervention systems
  • provide evidence of experience in data collection and program measurement

Evaluation Criteria:
1. Provides evidence of knowledge of early intervention systems and key stakeholders who gather data about this system
2. Ability to do a national environmental scan of current data models which assess early intervention system components: screening, assessment and diagnosis
3. Have a plan for pilot testing benchmark measures
4. Outlines strategies for collaboration with key stakeholders
5. Outlines chosen activities/research methods necessary for the project.
6. Demonstrates experience in conducting disability research, including questionnaire design, focus group and survey implementation
7. Have established physical resources and personnel to successfully conduct the research
8. Have a reasonable timeline for each phase of the project.