Data Briefs & Highlights / Insights

Data for Action

Last updated: October 12th, 2022

Using NCI-IDD and NCI-AD Data to Assess Progress with Person-Centered Requirements in the CMS Settings Rule A Hypothetical Case Study

This joint NCI and NCAPPS data brief presents a hypothetical case study of how states can use National Core Indicator (NCI) data (NCI-IDD and NCI-AD) to look at system-level person-centered planning and practices and get an idea of statewide system alignment with the HCBS Settings Rule.

What Do NCI-IDD Data Tell Us About the Proportion of Family Care Givers Who Are Being Paid to Provide Support?

According to the results of the 2021-2022 Adult Family Survey (AFS), about 1 in 2 respondents to the AFS reported they or someone else in the family was paid by the IDD agency to provide services to their family member. Caregiving can result in added stress for the caregiver, loss of income, and reduced health and quality of life.  During the pandemic, these stresses increased.  Paying family caregivers recognizes the key role they play in supporting their family member. 

What Do NCI-IDD Data Tell Us About How Many People with IDD Receiving State Services Are Enrolled in College or University?

  • Without the advantage of education and training beyond high school, the ability of people with IDD to escape poverty and find employment is diminished.
  • Though the numbers of people who were enrolled in post-secondary education in the NCI IPS for 2020-2021 was very small, the availability of these opportunities is growing.
  • According to the results 2020-2021 In-Person Survey (IPS), only slightly more than 3.2% of respondents with intellectual and developmental disabilities (IDD) aged 18-25 were enrolled in a college or university.

What NCI-IDD Data Tells Us About Vacations

  • The benefits of vacation are abundant and well-documented, especially for those with IDD, whose social networks and opportunities are often more limited as a result of the enforced uniformity of their daily lives.
  • Vacations add to our quality of life and expand our horizons.
  • In 2021, while just 44% of the general population vacationed, only one in four people with IDD reported taking a break – a number that ranged by state from 6% to 39%.

What NCI Data Tells Us About the Impact of COVID-19 on Families Who Have a Family Member with IDD Living at Home

COVID-19 is continuing to disrupt the lives of families around the country but poses particular challenges to families who have a child or adult with IDD living at home. Check out this data highlight NCI-IDD Adult Family Survey data from the COVID Supplement implemented in 2020-21. These data demonstrate the impact of COVD-19 on families who have a family member receiving state DD services and living at home.

NCI team members recently published the article “Effects of person-centred planning and practices on the health and well-being of adults with intellectual and developmental disabilities: a multilevel analysis of linked administrative and survey data.” in the Journal of Intellectual Disability Research. (

Here is an infographic illustrating the major findings of the paper.

Here below is a plain-language summary of what the article found!


Person-centered practices (PCP) are considered a best practice for developing person-centered service plans. PCP in service planning are driven by service users’:

  • Individual preferences
  • Needs
  • Priorities

US policies require state systems to adopt PCP. These policies apply to any home and community-based service setting. However, there is not enough research on how PCP impact outcomes for service users. This study aims to address this gap. This will be done by studying the relationship between PCP and outcomes for adults with intellectual and developmental disabilities (I/DD) who use state-funded services.


Data for this study comes from the 2018-19 National Core Indicators® In-Person Survey (NCI). The NCI links survey responses with state records. This study includes a sample of 22,000 adults with I/DD getting services from 37 states. We used multi-level regression to look at user experience with PCP & outcomes.

We studied 5 outcome measures:

  1. Choice and control over life decisions
  2. Everyday choices
  3. Satisfaction with community inclusion
  4. Self-reported health
  5. Whether a person feels their services are helping them to have a good life

We studied 4 measures of PCP:

  1. Does your case manager/service coordinator ask what you want?
  2. Are you able to contact your case manager/service coordinator when you want to?
  3. Were you able to choose the services that you get as part of your service plan?
  4. Does your service plan include things that are important to you?

 Results and Future Directions

There is a strong relationship between better outcomes and the PCP measures.  In particular, participating in developing service plans was positively associated with all five outcomes.

This study adds to the evidence of PCP as a best practice. This study also shows the value of linking survey data and state records to have a better picture of person-centered practices. Some of the call to action of this study are for stronger policy and training for PCP in state DD systems. This should include paid support staff as well as case managers.


National Core Indicators®-IDD Family Surveys COVID-19 Supplement National Report Special Edition
In response to the COVID-19 pandemic, NCI-IDD added a state-optional COVID-19 Supplement to all NCI Surveys. The COVID-19 Supplement is intended to support the understanding of the experience of people with disabilities and their families at the beginning of the COVID-19 pandemic, and their interactions with services during that time. Data were collected between July 1, 2020 and June 30, 2021. This Special Edition Report shows individual state and overall national outcomes for the NCI-IDD COVID-19 Supplement questions.