How We Gather Data

In-Person Survey

The In-Person Survey (IPS) is an interview-based survey of individuals who are 18 years of age or older and receiving at least one paid service from the state (in addition to case management). Before the survey, Background Information is collected using state administrative records, and often with additional information collected from service coordinators / case managers. Background Information includes data such as demographics, personal characteristics, health data and data on employment status and wages.

The face-to-face portion (IPS Section I) of the IPS is conducted in-person or through a secure video meeting; IPS Section I can only be answered by the individual receiving state services — no proxy responses are permitted. In contrast, IPS Section II may be conducted in the presence of and with the assistance of a proxy respondent if deemed appropriate by the interviewer.

Family Surveys

The NCI-IDD Family Surveys are questionnaire-based surveys, self-administered by family members by mail or online. The family member with I/DD must be receiving at least one service from the state DD agency, in addition to case management.

The Adult Family Survey (AFS) is for families who have an adult family member (age 18 and over) with I/DD living in their family’s home.

The Family/Guardian Survey (FGS) is for family members or guardians of an adult (age 18 and over) with I/DD living outside of the family home.

The Child Family Survey (CFS) is for families who have a child (under age 18) with I/DD living in the family home.

Family surveys are either sent to all eligible families/guardians or a sample of families – generally that decision is based on total eligible families in the participating states and/or previous year response rates.

State of the Workforce Survey

The State of the Workforce Survey (formally Staff Stability Survey) is an online survey of provider agencies supporting adults with ID/DD in residential, employment, day services and other in-home or community inclusion programs. The survey captures information about wages, benefits, and turnover of the direct care professional workforce, hired by agencies.

Agencies receive the survey through an email invitation (address provided by State) and agencies respond directly online.

This tool is not used for provider-level assessment as the data are de-identified and are reported aggregated at the state level.