This document provides an example memorandum of understanding (MOU) that can used between the State Agency under the Individuals with Disabilities Act (IDEA Part B,619 and Part C) and the State Autism Developmental Disabilities Monitoring Program (State ADDM) funded by the Center for Disease Control. The purpose of the MOU is to share key data about the characteristics of children with autism spectrum disorder (ASD) and other disabilities in communities.
This document can also provide a template for developing MOU’s for data sharing between IDEA and other data sources as well. Please contact your DaSy Liaison for support in developing data sharing agreements that define what data are to be shared and how the data can be used.
U.S. Department of Education Shares IDEA Data Sharing MOU Template
A template was jointly developed by the U.S. Department of Education (ED) and the Centers for Disease Control (CDC) as a model data sharing agreement memorandum of understanding (MOU). This ED-CDC IDEA MOU was developed to use by the State Agency that administers the Individuals with Disabilities Act (Part B, Section 619 Preschool or the Part C early intervention program and funded by the U.S. Department of Education (ED)) with CDC’s State Autism Developmental Disabilities Monitoring Program (State ADDM).
The purpose of the ED-CDC IDEA MOU is to improve the evaluation of IDEA programs by allowing limited data sharing about the children identified with autism spectrum disorder (ASD) and other disabilities served under the IDEA to improve the early identification of, provision of services to, and outcomes of, children with disabilities under the IDEA. This program evaluation purpose is an exception to IDEA and the Family Educational Rights and Privacy Act (FERPA) provisions that generally prohibit the sharing of personally identifiable information from IDEA records without parental consent.
As a direct result of ED and CDC’s efforts, over a dozen State ADDM sites were able to work with IDEA programs. The State ADDM Network is a major collaborative network that reports on prevalence rates of children with ASD and other developmental disabilities in multiple communities throughout the U.S. The ED-CDC IDEA MOU Template was developed jointly by ED and CDC. Key contributors were—ED: Kala Shah Surprenant (OGC), Jessica Spataro (OSERS) & Alecia Walters (OSEP) and CDC: Sudevi Ghosh (OGC) and Mary E. Cogswell Monica Dirienzo, Mathew J. Maenner, Mary Patrick, & Anita Washington (CDC/DDNID/NCBDDD/DHDD). The ED-CDC IDEA MOU Template resulted in substantially better information on ASD children served under IDEA and reflected in the reports below.
Maenner MJ, Warren Z, Williams AR, et al. Prevalence and Characteristics of Autism Spectrum Disorder Among Children Aged 8 Years—Autism and Developmental Disabilities Monitoring Network, 11 Sites, United States, 2020. MMWR Suppl 2023, 72 (No.SS-2): 1-14. https://www.cdc.gov/mmwr/volumes/72/ss/ss7202a1.htm?s_cid=ss7202a1_w
Shaw KA, Bilder DA, McArthur D, et al. Early Identification of Autism Spectrum Disorder Among Children Aged 4 Years—Autism and Developmental Disabilities Monitoring Network, 11 Sites, United States, 2020. MMWR Suppl 2023, 72 (No.SS-1): 1-15. https://www.cdc.gov/mmwr/volumes/72/ss/ss7201a1.htm?s_cid=ss7201a1_w
Community report highlighting data from ADDM Network sites (https://www.cdc.gov/ncbddd/autism/addm-community-report/index.html).
Please contact your OSEP State Contact and your DaSy Liaison for support in developing a data sharing agreement for sharing of IDEA data in your State.
Access the template: Memorandum of Understanding between the State Agency under the Individuals with Disabilities Act (IDEA) and the State Autism Developmental Disabilities Monitoring Program (State ADDM)
June 2024.