National Core Indicators – IDD – In-Person Survey National Report 2021-2022

The National Core Indicators (NCI) program announces the release of the National Core Indicators Intellectual and Developmental Disability (NCI-IDD) – In-Person Survey (IPS) National Report for the year 2021-2022. This comprehensive report is based on data collected by 27 states from 13,559 adults receiving long term services and supports (LTSS) from their state Developmental Disabilities (DD) service systems. This report provides a vital snapshot of the demographics and self-reported outcomes among people using LTSS from DD systems in the United States.

The NCI-IDD program is a collaborative effort between state DD systems, Human Services Research Institute (HSRI), the National Association of State Directors of Developmental Disabilities Services (NASDDDS), and people with disabilities and their families. NCI-IDD is a research and quality monitoring enterprise that collects data directly from those using state DD system supports and their families. Data collected includes demographics including race and ethnicty, information on social determinants of health, service satisfaction, experience data and information on other critical life outcomes such as employment, safety, choice, and decision-making and more. NCI-IDD aims to create positive change in human service systems using valid and reliable tools to collect, analyze, report on, and broadly disseminate data outcomes.

By amplifying the voices of people with intellectual and developmental disabilities, the NCI-IDD IPS serves as a catalyst for positive change in human service systems, and NCI data can inform evidence-based decision-making and drive the implementation of much-needed improvements to enhance the lives of individuals with IDD.

Key highlights from the National Report 2021-2022 include:

Demographics: The survey examined data from diverse settings, including community-based residential settings (36%), individuals’ own homes (15%), family/relative homes (40%), host homes/foster families (5%), and institutional settings (4%). Among those surveyed, there is also representation from typically under-represented communities, such as those from racial/ethnic minorities (29% of this sample), people living in rural and small towns (10%), those who use non-verbal forms of communication (20%), those who have a guardian or conservator (54%), and those whose IDD is characterized as severe, or profound (19%). This diverse representation allows for a robust understanding of the experiences and needs of individuals across various living arrangements.
Employment: The report reveals that only 16% of the surveyed individuals have a paid community job, indicating significant room for improvement in creating inclusive employment opportunities. Forty-seven percent of those without a job expressed a desire for employment, underscoring the need to bridge this gap.
Workforce and access to services: Among those surveyed, 90% report their staff come and leave when they are supposed to, and 86% report their staff do things the way they want them done. This year was the first year that NCI collected data on user perception of staff turnover, which can impact outcomes: on average, 40% of those surveyed reported that their paid staff change too often.
Quality Outcomes: These data showcase the voices of people with intellectual and developmental disabilities and can inform needed changes in human service systems to improve the quality of supports. For example, 78% report they are able to get places when they want to do something outside their home, and 11% report that they often feel lonely. Further, when people in their house go somewhere, less than half (45%) are able to stay home.
Outcomes Related to the HCBS Final Settings Rule: Among those surveyed, 75% report they helped make their service plan. However, only 44% of people not living with family were able to choose or have input into their roommate(s) and 57% were able to choose where they live. The findings provide valuable insights into areas of strength and areas of opportunity where quality can be strengthened and outcomes can be improved to enhance the overall quality of supports for people with IDD.

“The data in the National Core Indicators 2021-2022 In Person Survey National Report reflect the performance of public systems. The report includes information about the characteristics of people served and the quality of their lives, such as opportunities for employment, friendship, and involvement in their communities,” said HSRI Founder and President Emerita, Val Bradley. “We are so thankful for all our state partners, surveyors, and all the thousands of people who took time out of their day to tell us about their lives and the extent to which public supports and services have helped them to meet their goals. This report shows how much progress systems have made in supporting people, but that there is still room to improve services, so that people with disabilities can really thrive.”

To access the full National Core Indicators – Intellectual and Developmental Disability – In-Person Survey National Report 2021-2022, please visit the NCI website at https://idd.nationalcoreindicators.org/survey-reports-insights/. Simply click on the “Chapters 2021-22” dropdown to retrieve the report.

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/.