National Core Indicators: Finding Practices that Work for Developmental Disabilities Agencies

What is the National Core Indicators Project?

The National Core Indicators (NCI) project is a joint effort between the National Association of State Directors of Developmental Disabilities Services (NASDDDS) and the Human Services Research Institute. Participating state developmental disabilities agencies collect data to measure the performance and outcomes of their developmental disabilities services. The goal of the project is to collect and maintain valid and reliable data to achieve the following:

• Improve state-level practices
• Add knowledge to the field
• Influence state and national policy
• Inform strategic planning initiatives for NASDDDS
• Establish national benchmarks of system-level performance
• Compare results across states

To achieve these goals, NCI works to establish a nationally recognized standard set of performance and outcome indicators for developmental disabilities service systems, develop reliable data collection methods and tools, and create aggregated, multi-state datasets.

Funding and State Participation

The project is primarily state funded, and state participation is voluntary. In 2011, NCI received a 5-year grant from AIDD to support its expansion. The goal is to increase NCI participation to all 50 states and the District of Columbia by 2016. For 2012–2013, five new states were selected: Indiana, Mississippi, Oregon, Rhode Island, and Wisconsin. There are currently 35 participating states.

Why is NCI Needed?

NCI is a valuable tool for service systems, researchers, policymakers, and individuals with developmental disabilities and their families. By establishing a set of concrete data, NCI helps states see where they stand in relation to other states, identify areas needing improvement, and develop strategies to improve performance. NCI data also helps measure the results of system change efforts across states. In order to facilitate future policy change efforts, it is critical to have data that show the differences that these state services make in people’s lives.

History

NCI, initially known as the Core Indicators Project, was created to meet a growing demand for performance and outcome measurement in public systems. In 1997, 15 states gathered to discuss the potential performance measurement framework and identify the major categories of performance and their data sources. Initially, 61 indicators were developed. At this early stage, the states also worked on developing and testing data collection protocols, with seven states volunteering to pilot test the measures.

The number of participating states increased gradually from 7 in 1997 to 35 in 2013. The indicators and data collection protocols were refined and expanded over the years, and additional surveys were developed. States also began submitting aggregated incident and mortality data, and some states began to collect data on staff turnover and vacancy rates from providers.

The Indicators

The indicators are standard measures used across states to assess the outcomes of services provided to individuals and families. They have remained largely consistent over the years, but were recently revised to include enhanced information about health, wellness, and employment. There are 100 performance and outcome indicators organized across five categories (known as domains):

• Individual outcome indicators address the public system’s ability to aid adults with developmental disabilities in participating in their communities, sustaining relationships, exercising choice and self-determination, and finding and maintaining community integrated employment. These indicators also measure how satisfied individuals are with services and supports.
• Health, welfare, and rights indicators address safety and personal security, health and wellness, and protection of and respect for individual rights.
• System performance indicators address topics such as service coordination, access to services, and family and individual participation in provider-level decisions.
• Staff stability indicators address provider staff stability (such as turnover ratios) and competence of direct contact staff.
• Family indicators address how well the public system assists children and adults with developmental disabilities, and their families, in exercising choice and control, participating in their communities, and maintaining family relationships. These indicators also address families’ satisfaction with services and supports.

Data Sources

The indicators are measured using survey data and population data from the following sources:

• The Adult Consumer Survey collects data via conversation with the person receiving services. This survey provides approximately half of the data for the indicators and focuses on the individual’s personal experience. Each state collects survey data from a random sample of at least 400 individuals, allowing results to be generalized to individuals served statewide.
• Family surveys are mail-in surveys that are distributed to families who have a member with a disability to assess system responsive to their needs, the quality of services, and their overall satisfaction. There are three family surveys: the Adult Family Survey, Family Guardian Survey, and Child Family Survey.
• Provider surveys are used to collect data on direct contact staff turnover and vacancy rates.
• Administrative records are used to collect data on mortality rates and causes of death in the public developmental disabilities system.

How NCI Data Are Used

NCI data are used in a variety of ways, including the following:

• State-by-state comparisons
• Reports to state legislatures
• Policy change
• Quality assurance and service improvement
• Centers for Medicare & Medicaid Services waiver requirements
• Research

NCI provides highlights of its data through a variety of reports, including annual summary reports and data briefs. The annual summary reports summarize the results of the most interesting data collected across all NCI tools during the year. The most recent annual summary report (PDF) highlights activities and findings from 2010 to 2011. Data briefs provide highlights of data findings across states and focus on specific areas such as employment outcomes, autism spectrum disorders, dual diagnoses, and psychotropic medication. In addition, several articles using NCI data have been published in peer-reviewed journals in recent years.

User-Friendly Reports

NCI recently released a user-friendly version of the 2010–2011 Consumer Outcomes Final Report (PDF), which is the first of its kind. The user-friendly version takes about 20 items from the Adult Consumer Survey, describes the outcomes in plain language, and shows the averages of all states that collected Adult Consumer Survey data. States also now receive user-friendly versions of their state data reports.

Website

NCI’s website provides public access to NCI data as well as information about how the results are being used to support policy, research, and advocacy. A redesigned version of the site was released in 2012 and includes a chart generation feature, which can be used to filter and display data from the Adult Consumer Survey to create custom charts.

Learn More

Visit http://www.nationalcoreindicators.org/  for more information and visit http://www.nationalcoreindicators.org/aidd for information on participating States.