The National Core Indicators are a series of surveys that ask people with developmental disabilities and their families about their lives and the residential, employment and other support services they receive. Previously, research in the field commonly relied on secondary sources for information, such as agency records and clinical assessments.

A national and state effort

NCI surveys are conducted across 46 states and are led by the Human Services Research Institute (HSRI) and the National Association of State Directors of Development Disabilities Services (NASDDS). In The First State, the Delaware Division of Developmental Disabilities Services (DDDS) contracts CDS to administer National Core Indicators (NCI) surveys on a yearly basis.

What type of information is collected?

Delaware currently participates in three NCI surveys: the Adult In-Person Survey (IPS) (formerly the Adult Consumer Survey (ACS), and two Family Surveys.

The IPS is administered to adults (18 years and older) receiving residential supports through DDDS. As the name implies, it is administered in-person and intended to feel more like a conversation than an interview or survey to the participant involved. The IPS represents one of the only large-scale surveys that collects information directly from the person receiving services. Each of the Family Surveys are administered to family members of adults (18 years and older) receiving services from DDDS and are differentiated based on whether the adult receiving services is living outside the family home. Eligible family members can participate by completing the survey online or by hard copy.

All three surveys ask questions about the person’s and family’s quality of life, their ability to freely make meaningful choices, and their satisfaction with the services they receive related to employment, rights, service planning, community inclusion and health and safety. The state uses a random process that identifies who among these groups of consumers and families will be asked to participate. All identifying information is removed from the surveys so that responses cannot be traced back to the person who participated.

Anyone interested in becoming a participant or in getting more information about the surveys should contact Pialee Roy at pialee@udel.edu or 302-831-7499.

Who are NCI surveyors?

The Delaware NCI surveying process involves a collaboration among CDS staff, DDDS staff, students and self-advocates. Adult In-Person Surveys are usually conducted by trained, upper level University of Delaware undergraduate students or recent UD graduates and, at times, self-advocates. All surveyors receive extensive training through HSRI and DDDS and encourage consumers to participate as fully as possible in all aspects of the survey.

Anyone interested in becoming a surveyor should contact Pialee Roy at pialee@udel.edu or 302-831-7499.

What happens after the data is collected?

NCI data are used to influence national and state policy, improve practice at the state level, add knowledge to the field, set priorities and inform strategic planning. In Delaware, data collected through the NCI are currently being used by DDDS and other state leaders to consider the future direction of state services for people with developmental disabilities and their families.

National and Delaware-specific data reports can be found here. The most recent Delaware Adult In-Person Survey data report (formerly “Adult Consumer Survey” report) can be found here.

CDS has collaborated with DDDS to develop infographics on Delaware NCI data, such as this one on Employment. CDS and DDDS also conduct presentations and panel discussions each year to discuss the results of the NCI. Here’s a PowerPoint presentation on the NCI from a recent “Lunchtime Learning” session at CDS.