How It Works

Administration

State IDD agencies join NCI-IDD by paying yearly membership dues. State members then determine which of the NCI-IDD suite of tools they want to administer and how often the surveys will be circulated. Each year, NCI-IDD staff meet with member state contacts to determine their plans for the next year.

Data Collection

State members determine who is responsible for for administration of the In-Person Survey. States have used a variety of data collection entities included state QA staff, University Centers for Excellence in Developmental Disabilities, advocacy organizations, and other survey vendors. For the In-Person Survey, in order to ensure that interviewers receive standardized training, NCI-IDD staff have developed training resources and conduct training sessions.

State-Specific Questions

States can add their own questions to the surveys if there is an interest in pursuing particular policy issues in more detail. NCI-IDD staff work with state members to ensure that the questions meet survey standards.

Data Entry

State members have access to an online platform – ODESA (Online Data Entry Survey Application) – where they enter data from the In-Person, Family and Staff Stability surveys. Data are cleaned by NCI staff and draft state results are shared with state contacts to ensure validity. Once states have reviewed their data, national and state reports are generated. Data in the In-Person national reports are risk adjusted to ensure comparability among states.


Indicators

Why Use Indicators?

Over the past several years, the focus of performance measurement of public intellectual and developmental disabilities (IDD) services has shifted to an emphasis on life experiences of people being supported.  In the past, as the community service system grew, quality assurance was aimed at the program and licensing compliance, health and safety, and skills acquisition.  Quality measurement was based on input and process measures such as documentation standards, staff credentials, and programmatic protocols.  Today services and supports are centered on individually tailored supports based on goals, choices and preferences of the individual with IDD.  Indicators of performance, therefore, are needed to monitor important individual and systemic outcomes. 

National Core Indicators® (NCI®) staff provides support to managers of state IDD service systems to gather a standard set of performance and outcome indicators that can be used to track state service system performance over time, to compare results across states and to establish benchmarks. These indicators are shown in the document linked below. 

How Do Indicators Work? 

Indicators are measures that are designed to assess progress or performance in domains and sub-domains that reflect the aims of state IDD systems.

To have utility for measurement purposes, indicators must reflect major organizational or system goals, address issues that can be influenced by the organization or system, and have face validity (i.e., does the indicator measure what it’s supposed to). 

Indicators provide an overall picture of system performance and also making it possible to track specific outcomes over time.  For instance, if a state places priority on increasing employment for people with IDD, one of the indicators to follow would be: “The percentage of people who are reported to have a paid job in the community.”

What are the NCI Indicators? 

The document linked below provides a detailed list of NCI indicators grouped by domain and subdomain. Indicators in both the In-Person Survey and the Family Surveys are included. 


In January of 2022, National Quality Forum (NQF) endorsed 14 NCI-IDD measures. This endorsement followed a rigorous review of scientific methods, consensus panel analysis, and a public comment period. It was issued in recognition of the high demand for quality measures in home and community-based services. The endorsement is an important step toward enhancing the quality of services and supports provided to people with intellectual and developmental disabilities across state systems.

Interested in seeing how the NCI-IDD and NCI-AD indicators overlap? Take a look at this document: