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Dataset on Intellectual and Developmental Disabilities: Linking Data to Enhance Person-Centered Outcomes Research

Dataset on Intellectual and Developmental Disabilities: Linking Data to Enhance Person-Centered Outcomes Research
Agency
  • The Office of the Assistant Secretary for Planning and Evaluation’s Office of Behavioral Health, Disability, and Aging Policy (ASPE-BHDAP)
Start Date
Functionality
  • Use of Clinical Data for Research
  • Linking of Clinical and Other Data for Research

 

STATUS: Active Project

BACKGROUND

The Office of the Assistant Secretary for Planning and Evaluation’s Office of Behavioral Health, Disability, and Aging Policy (ASPE-BHDAP) aims to build data capacity for person-centered outcomes research for the population with intellectual and developmental disabilities (ID/DD) through the creation of a publicly accessible, de-identified, linked dataset of ID/DD relevant state-level data.

Despite significant investments in services and supports for the ID/DD population, data infrastructure issues limit the ability of researchers to conduct person-centered outcomes research, which limits implementation of evidence-based person-centered practices, programs, and policies to support persons with ID/DD. A lack of person-centered outcomes research also limits the ability of individuals with ID/DD and their family to strategically choose services and supports that promote prioritized outcomes and goals.

The Dataset on Intellectual and Developmental Disabilities: Linking Data to Enhance Person Centered Outcomes Research pilot project will link the following state-level data sources for four to six states: the National Core Indicators In-Person Survey, Supports Intensity Scale, Medicaid claims, and other relevant state-level data sources. The linked dataset will enable researchers to analyze relationships between various sociodemographic information, need for home and community-based services, service utilization, service expenditures, and person-centered outcomes prior to and during the COVID-19 pandemic for individuals with ID/DD.

PROJECT PURPOSE & OBJECTIVES

The pilot project aims to accomplish the following objectives:

  • Link Supports Intensity Scale, Medicaid claims, the National Core Indicators In-Person Survey, and other relevant state-level data sources for four to six states;
  • Produce a publicly accessible, de-identified dataset of the linked state-level data;
  • Conduct exploratory analyses using the dataset to evaluate person-level predictors of outcomes prioritized by people with ID/DD, and identify opportunities for HCBS systems-level program change; and
  • Disseminate data linkage methodologies and technical assistance guidance to help states and researchers replicate data linkages and use the dataset for analyses.