National report shows progress and gaps in IDD services across 38 states

A new National Core Indicators report draws on data from more than 30,000 adults with intellectual and developmental disabilities receiving state-funded services in 38 states and Washington, D.C. The findings point to gains in community access, but also persistent concerns around loneliness, relationships, and staff turnover.

Why it matters: - The report offers one of the most comprehensive snapshots of how adults with intellectual and developmental disabilities experience state-funded long-term services and supports. - State agencies can use the findings to assess service quality, track performance, and gauge the return on Medicaid-funded human services. - Measures from the report will be included in the CMS HCBS Quality Measure Set, which states receiving Money Follows the Person funding must report.

What happened: - National Core Indicators released its 2024-2025 Intellectual and Developmental Disability In-Person Survey National Report. - The report was produced by the Human Services Research Institute and the National Association of State Directors of Developmental Disabilities Services. - Data came from 38 states and the District of Columbia. - More than 30,000 adults receiving long-term services and supports through state developmental disabilities systems participated. - The survey captured self-reported outcomes across life areas including employment, choice and control, relationships, self-direction, and health.

The details: - Participants came from diverse backgrounds, including different races, ethnicities, ages, communication preferences, residence types, and urban settings. - 71% said they get to go out and do things they like in the community as much as they want. - 29% said they take part in groups, organizations, or communities. - 13% said they often feel lonely. - 57% said they want help making or keeping in contact with friends. - 36% said they want to be part of more groups in the community. - 40% said staff change too often. - The report says outcomes vary substantially across states and within states across settings and population groups. - The report is available on the NCI website through the survey reports and insights page. - NCI also posted an “At-a-Glance” infographic summarizing the results.

Between the lines: - The findings suggest some progress in community inclusion, but social connection remains a weak spot for many people receiving services. - High reported staff turnover points to a workforce stability problem that can affect continuity of care and day-to-day support. - The variability across states and settings suggests local policy and service design still shape outcomes as much as broad federal goals do.

What's next: - HSRI and NASDDDS said they will keep working with state partners to turn the data into strategies that strengthen Medicaid-funded services. - The NCI-IDD program said it wants continued collaboration with people with lived experience and their families to improve future research. - States can use the new measures as they align with federal quality reporting requirements.

The bottom line: - The report shows that people with IDD are getting more chances to participate in community life, but many still lack the relationships, stability, and support they want.