Comprehensive national data reveal areas of progress and opportunity to strengthen supports for people with IDD and their families

CAMBRIDGE, Mass., June 5, 2026 /PRNewswire-PRWeb/ -- National Core Indicators ®, a collaboration between Human Services Research Institute (HSRI) and the National Association of State Directors of Developmental Disabilities Services (NASDDDS), announces the release of the 2024-25 National Core Indicators – Intellectual and Developmental Disabilities (NCI-IDD) Family Survey National Reports. Data were gathered from 8,613 family members of children and adults receiving publicly funded state Developmental Disability (DD) services across 16 states and DC.

The NCI-IDD Family Surveys capture the perspectives of families of people with IDD, with national reports drawing on three complementary surveys:

• the Family Guardian Survey (for families of adults who live outside the family home),
• the Adult Family Survey (for families of adults living at home), and
• the Child Family Survey (for families of children living at home).

Together, these surveys offer a comprehensive, family-centered view of access, satisfaction, and the quality of state-funded developmental disability services. For nearly 30 years, NCI has partnered with states to collect and analyze these data, making it the most comprehensive and generalizable source of information on the experiences and quality of life of people with IDD who use publicly funded services. These data can be used to strengthen disability services for service users and their families.

Key takeaways from Family Surveys

Across the three family surveys, more than 9 out of every 10 respondents feel that services and supports help their family member with IDD to live a good life. At the same time, there are still unmet needs that vary not only by survey, but also across states:

• Among Child Family Survey (CFS) respondents, who live with their child who receives services, 50% of respondents report needing help planning for employment for their child;
• Among Adult Family Survey (AFS) respondents, who live with an adult family member who receives services, 56% of respondents report needing help with housing for their family member;
• Among Family Guardian Survey (FGS) respondents, who have a family member receiving services who does not live with them, 44% of respondents report needing help with planning for recreation opportunities for their family member.

Families report that support workers change too often

Among CFS respondents, about 1 in 4 (28%) say support workers change too often, while among FGS respondents, 1 in 2 (47%) report this. This finding aligns with results from the National Core Indicators – IDD State of the Workforce, which show consistently high turnover rates among Direct Support Professionals (DSPs). At the same time, families report that support workers always or usually have the right information and skills to meet the family's needs. This points to the importance of statewide efforts to address workforce shortages and retain high-quality support workers.

"Families offer a unique and essential perspective on the quality of services and supports," said Dorothy Hiersteiner, NCI-IDD Co-Director for HSRI. "These data help us better understand their experiences and identify where systems are succeeding and where additional attention is needed to ensure people with IDD and their families can thrive."

Laura Vegas, NCI-IDD Director for NASDDDS, adds: "The ongoing partnership between states, HSRI, and NASDDDS makes this work possible. These data equip states to benchmark performance, learn from one another, and advance strategies that improve services for people with IDD and their families."

Access the Reports

View the full 2024–2025 NCI-IDD Family Survey National Reports.

For a comprehensive overview of the results of the National Core Indicators - Intellectual and Developmental Disabilities - Family Survey National Reports 2024-2025, please see our "At-a-Glance" infographic.

Questions or comments?

We are always interested in collaborating closely with people with lived experience with intellectual and developmental disabilities. If you'd like to help us improve our research, please contact us at nci@nationalcoreindicators.org or visit our website: https://idd.nationalcoreindicators.org/.

Media Contact

Lauren K. Terry, Human Services Research Institute, 1 617-844-2522, lterry@hsri.org, https://www.hsri.org/

View original content:https://www.prweb.com/releases/new-nci-idd-family-survey-reports-inform-improvements-to-publicly-funded-state-developmental-disability-services-302791416.html

SOURCE Human Services Research Institute