The Periodic Survey of State Developmental Disabilities Directors provides aggregate data (non-population) on residential facilities and residents within each state.
Questionable source (Data limitations)
States vary in types of information they gather and maintain. Some operational definitions governing certain data elements may differ by state, e.g., admissions, discharges and deaths. Limitations are described in the referenced publication.
Data Years Available
1977, 1987, 1997, 2005, 2009
A mailed questionnaire and phone follow-up.
Data provide a description of residential settings, sizes and the number of residents. No demographic information is collected.
The U.S. civilian institutionalized population with DD/ID and other types of co-occurring disabilities – children and youth
A one item questionnaire is mailed with a cover letter to each state’s DD program director or state-designated key data informant. Telephone follow up begins after the questionnaire mail out to confirm who has been designated to compile the data and to answer questions about the data requested.
Response rate and sample size
In 2009, DD administrators from 50 states and D.C. were sampled; 36 states responded.
States responding are not the same each year; data represent only those states that responded comparably in the years 1997, 2005, and 2009
Sheryl A. Larson, K. Charlie Lakin, Pat Salmi, Naomi Scott and Amanda Webster (2010) Children and Youth With Intellectual or Developmental Disabilities Living in Congregate Care Settings (1977–2009): Healthy People 2010 Objective 6.7b Outcomes. Intellectual and Developmental Disabilities: October 2010, Vol. 48, No. 5, pp. 396-400