The emergence of the National Core Indicators® (NCI-IDD®) coincided with a number of trends that coalesced nationally to focus attention on the measurement of performance. First, as public systems became increasingly complex, managers began to search for ways to assess the conduct of systems absent the ability to be constantly in the field observing services. Second, improvements in technology opened up the possibility of aggregating information about the system and analyzing it in more efficient ways. Third, the clamor to view the performance of services and supports through the measurement of actual outcomes for people created a demand for information. Finally, state intellectual and developmental disabilities system budgets were becoming increasingly visible and required more than anecdotal information to justify.
A State-Driven Initiative
In 1997, 15 states convened to discuss the scope and content of a potential performance measurement framework, one that could be shared across states. Directors and staff from these 15 states worked to identify the major domains of performance, the sub-domains of each, indicators, measures, and data sources. The original 61 indicators, developed through a consensus process, were intended to provide a system-level “snapshot” of how well each state was performing. The states were guided by a set of criteria designed to select indicators that were (a) measurable, (b) represented issues the states had some ability to influence, and (c) were important to all individuals they served, regardless of level of disability or residential setting.
During this initial phase, data collection protocols were developed and field-tested, including a face-to-face Adult Consumer Survey (for individuals age 18 and older who are receiving services) and a mail-out Adult Family Survey (for families who have an adult family member living at home). Seven states volunteered to pilot test the measures: Arizona, Connecticut, Missouri, Nebraska, Pennsylvania, Vermont, and Virginia. Eight additional states served on the Steering Committee: Alabama, Colorado, Florida, Michigan, New York, Oklahoma, Rhode Island, and South Carolina.
Expansion and Growth
The changes that have taken place in NCI over the past decade mirror those in the field of quality management generally. When NCI began, it was called “Core Indicators Project.” Over time, the collection and analysis of the data moved to the center of state quality management systems and the effort moved out of the realm of “project” into a more fully integrated and ongoing process. As the relevance of NCI to state quality management systems increased, so did the number of states. From a core of 7 states in 1997, 46 states, 22 sub-state agencies and Washington D.C. are now members of NCI in 2018-19.
Continuous Improvement of Data Gathering Methods
In subsequent years, the indicators and data collection protocols were refined and expanded. Two additional surveys were developed: the Family/Guardian Survey, which was intended to assess the perceptions of families and guardians who have an adult family member receiving residential supports outside of the home, and the Children Family Survey, which looks at experiences and outcomes for families with children who are under 22 years of age and living at home. Additionally, states began submitting aggregated incident and mortality data, and some states began to employ the Staff Stability Survey, which collected staff turnover data and vacancy rates from providers. In 2008-09, the Adult Consumer Survey was significantly revised and updated. NCI program staff received feedback from state coordinators, interviewers, self-advocates, family members, researchers, and other stakeholders. Major revisions were made to the health, community inclusion, and employment indicators, and the survey was tested by HSRI staff in Massachusetts before finalizing.
Commitment to Sharing Results
The NCI collaboration seeks to share information in a variety of formats to maximize the use of findings for quality improvement and policy change. One example is the NCI Annual Summary Report, developed in 2007-2008 to offer interested readers a short report that takes the most interesting data collecting during the year across all NCI tools and summarizes the results. The Data Brief series is another publication format that has been utilized over the years to conduct topical analyses and disseminate major findings in an easy-to-read format. These publications, in addition to the comprehensive survey reports, may be downloaded from the website. For the first time in 2012, the newly designed website provides a chart generation feature that is available to public users interested in filtering and displaying data from the Adult Consumer Survey.
For a complete list of participating states, click here.