Data Briefs & Highlights

• National Core Indicators®-IDD Data Highlight: What Do NCI Data Tell Us About How Many People with IDD Take 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%.

  • National Core Indicators®-IDD Data Highlight: What Do NCI Data Tell Us About How Many People with IDD Take Vacations?

• National Core Indicators®-IDD Data Highlight: What Do NCI Data Tell 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.

  • National Core Indicators®-IDD Data Highlight: What Do NCI Data Tell Us About the Impact of COVID-19 on Families Who Have a Family Member with IDD Living at Home?

• National Core Indicators®-IDD NCI 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.

  • National Core Indicators®-IDD NCI Family Surveys COVID-19 Supplement National Report Special Edition

• 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.

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

• National Core Indicators® Data Highlight: What Do NCI Data Tell Us About the People With IDD Who Have Guardians Compared to Those Who Don’t

  • NCI Data Highlight: What Do NCI Data Tell Us About People With IDD Who Have Guardians Compared to Those Who Don’t

• National Core Indicators® Data Highlight: What Do NCI Data Tell Us About the BMI of People with Intellectual and Developmental Disabilities?

  • NCI Data Highlight: What Do NCI Data Tell Us About the BMI of People with Intellectual and Developmental Disabilities?

• National Core Indicators® Data Highlight: What NCI Data Tell Us About Flu Vaccinations Rates for People with Intellectual and Developmental Disabilities, and What That Suggests About COVID Vaccinations

  • NCI Data Highlight on Vaccinations

• What Do NCI Data Tell Us About Significant Racial & Ethnic Disparities Across Quality of Life and Health Domains?

  Using National Core Indicators® 2018-19 data, this brief describes differences in personal characteristics, demographics, and outcomes of Black respondents to the In-Person Survey when compared to white respondents. We also provide suggestions for public managers, service providers, people with lived experience and other stakeholders regarding how they might use this information to plan for and support equity in service delivery.
  
  NCI Spotlight on Racial Equity: https://www.youtube.com/watch?v=PtQgu1f-LbY

  • What Do NCI Data Tell Us About Significant Racial & Ethnic Disparities Across Quality of Life and Health Domains?

• National Core Indicators® Data Highlight: What Do NCI Data Tell Us About Parents with Intellectual and Developmental Disabilities?

  As more and more people with IDD are living everyday lives in their communities, they are also developing loving relationships and many are becoming parents. This Data Highlight includes NCI data from the 2018-2019 NCI In-Person Survey that sheds light on parents with IDD and the nature of supports that will assist them to be successful.

  • National Core Indicators® Data Highlight: What Do NCI Data Tell Us About Parents with Intellectual and Developmental Disabilities?

• NCI Remote Survey Pilot Study Summary Results, 2019-20

  Due to the COVID-19 global pandemic, declaration of a national public health emergency, and need to avoid in-person contact, NCI states had to prematurely end the 2019-2020 data collection cycle for the NCI In-Person Survey. Anticipating continued challenges to direct-contact data collection in future cycles, NCI expanded an ongoing pilot study to assess the feasibility of administering the survey through videoconference. The similarity between the participants of remote and direct-contact surveys and their responses to the survey questions suggest that, with continued care and attention to surveyor training, revised protocols, and working to ensure access to remote technology for all those who want to participate, remote surveys are feasible and reliable. We recommend moving forward with the use of the videoconference survey option for the 2020-21 cycle. This report details our findings and recommendations.

  • NCI Remote Survey Pilot Study Summary Results, 2019-20

• NCI COVID-19 Bulletin #5: Data from the Adult Family Survey (AFS): Using NCI data to understand the challenges that families of people with IDD may be facing during the pandemic

  This bulletin examines what we know about the experiences of families who live with an adult family member with IDD based on responses to NCI’s 2018-2019 Adult Family Survey (AFS). We review characteristics and outcomes that signal challenges these families may have faced and continue to face during COVID-19.

  • NCI COVID-19 Bulletin #5: Data from the Adult Family: Using NCI data to understand the challenges that families of people with IDD may be facing during the pandemic

• National Core Indicators® Data Highlight: What Do NCI Data Tell Us About Voting Among People with Intellectual and Developmental Disabilities?

  NCI data show that people with intellectual and developmental disabilities (IDD) are much less likely to vote than people in the general population. In 2018, about half of the country voted, and in 2016 the percentage was about 55%—significantly higher than the 32% of NCI respondents who reported having voted. What questions can state administrators, policy makers and program designers ask to address this disparity?

  • National Core Indicators® Data Highlight: What Do NCI Data Tell Us About Voting Among People with Intellectual and Developmental Disabilities?

• NCI COVID-19 Bulletin #4: Data on Racial Disparities: Using NCI to understand racial disparities among adults with intellectual and developmental disabilities during the COVID-19 pandemic

  As we learn more about the impact of COVID-19, data are demonstrating that the virus has disproportionately affected communities of color. The reasons for this disparity include the effects of long-standing systemic racism and health and social inequities. These factors contribute to the increased COVID-19 infection risk faced by members of racial and ethnic minority groups. According to the CDC American Indians, Alaska Natives, and Black people are approximately 5 times more likely to die from the virus than non-Hispanic white people, and Latinx people are 4 times more likely to die than non-Hispanic white people. The compounding intersection of racial and ethnic disparities brings increased vulnerability to minority groups with IDD in the face of this dangerous virus. Current data sources cannot yet provide reliable statistics regarding the incidence of COVID-19 among the population with IDD. We may expect though that some of the racial disparities in COVID-19 incidence rates in the general population may also be present among Black people receiving state DD system services. This bulletin examines racial disparities in the NCI data from the 2018-19 In-Person Survey (IPS). The respondents to this survey are adults receiving at least one service (in addition to case management) from their state developmental disability service system. Though these data were collected prior to the COVID-19 pandemic, the data demonstrate factors that may affect the vulnerability of respondents to the virus. Furthermore, these data show potential disparities in outcomes between Black and white respondents that may be heightened during COVID-19 and during other emergency situations. Specifically, this bulletin focuses on the areas of health, communication, and location (rural, urban, suburban).

  • NCI COVID-19 Bulletin #4: Data on Racial Disparities: Using NCI to understand racial disparities among adults with intellectual and developmental disabilities during the COVID-19 pandemic
  • EASY-TO-READ VERSION: NCI COVID-19 Bulletin #4: Data on Racial Disparities: Using NCI to understand racial disparities among adults with intellectual and developmental disabilities during the COVID-19 pandemic

• NCI COVID-19 Bulletin #3: Data on Family Experiences--Understanding the emergency preparedness, crisis and respite services for children and adults with IDD and their families during the COVID-19 pandemic

  Many families around the country have been spending more time at home together recently, as schools, workplaces and other activities have closed to contain the COVID-19 pandemic. Many parents are working from home, trying to master new technology and overcome the various challenges of working in a different environment. Children and teenagers may be getting their education online. Families of children and adults with IDD may face additional challenges as they support their family members at home.

  • National Core Indicators ® COVID 19 Bulletin # Data on Family Experiences Understanding the emergency preparedness, crisis and respite services for children and adults with IDD and their families during the COVID-19 pandemic

• NCI COVID-19 Bulletin No. 2: Data on Life Activities--Strategies to help address social isolation and life disruption among people with IDD during the COVID 19 pandemic

  The current federal, state and local advisories to stay at home and social distance to reduce the spread of COVID-19 place particular burdens on people in the IDD service system, who are more vulnerable to the effects of disrupted routines, isolation, and loneliness. It will be important for providers, families, and friends to find ways to compensate for diminished social interaction and increased risk for feeling of alone-ness.

  • NCI COVID-19 Bulletin No. 2: Data on Life Activities -- Strategies to help address social isolation and life disruption among people with IDD during the COVID 19 pandemic

• NCI COVID-19 Bulletin No. 1: Indicators of isolation and loneliness among people with IDD – how to help during the COVID-19 pandemic

  To aid the NCI community in this unprecedented time, we’re sharing some preliminary data from the 2018-19 In-Person Survey (IPS). These data, though not collected during the pandemic, point to areas where states might be able to help mitigate feelings of social isolation and loneliness among people with intellectual and developmental disabilities (IDD)—feelings that may be heightened by the COVID-19 pandemic and resulting stay-at-home orders.

  • NCI COVID-19 Bulletin No. 1: Indicators of isolation and loneliness among people with IDD – how to help during the COVID-19 pandemic
  • NCI COVID-19 Bulletin: Indicators of isolation and loneliness among people with IDD -INFOGRAPHIC VERSION

• NCI Data Brief: What Do NCI Data Tell Us About the Characteristics and Outcomes of Older Adults with IDD?

  Using National Core Indicators® data, this data brief describes the characteristics of older adults with IDD and what is known about their outcomes. We also provide suggestions for public managers, providers, and other stakeholders regarding how they might use this information to plan for and support older adults with IDD.

  • NCI Data Brief: What Do NCI Data Tell Us About the Characteristics and Outcomes of Older Adults with IDD?

• What Do NCI Data Reveal About People Who Are Dual Diagnosed with ID and Mental Illness?

  The understanding of how to provide services and supports to people who are dual diagnosed continues to deepen and expand. In this data brief we examine National Core Indicators^® (NCI^®) data from 2017-2018 to explore the characteristics and outcomes of people with dual diagnoses with the hope that it will add to a growing body of knowledge

  • What Do NCI Data Reveal About People Who Are Dual Diagnosed with ID and Mental Illness?

• What Do NCI Data Reveal About the Guardianship Status of People With IDD?

  This data brief explores the characteristics and outcomes of people with intellectual and developmental disabilities who have full or partial guardianship compared to those without guardianship. The brief also poses some starting points for examining the need for guardianship reform and the ways in which supported decision-making can be expanded and alternatives instituted. The brief concludes with a description of a Missouri initiative that has helped families understand the nature and implications of guardianship and has resulted in reform legislation.

  • What Do NCI Data Reveal About the Guardianship Status of People With IDD?

• 2019 Data Highlight Compendium

  This document compiles six of NCI's latest Data Highlights. Data Highlights detail a specific data point, discuss why that point is important, how states can further examine the issue.

  • Data Highlight Compendium

• Working in the Community: The Status and Outcomes of People with Intellectual and Developmental Disabilities in Integrated Employment--Update 3

  Using data from 2016-17, this data brief describes the employment status of individuals supported by state IDD agencies.

  • Working in the Community: The Status and Outcomes of People with Intellectual and Developmental Disabilities in Integrated Employment--Update 3

• What Do NCI Data Tell Us About the Characteristics and Outcomes of Young Adults Receiving Services?

  Using National Core Indicators data from 2015-16 in-person surveys, this data brief examines the quality of life of young adults (ages 18 to 25) with IDD and provides suggestions to enhance the planning process used to support them as they transition to adult life—so they can gain skills that will help them maximize their autonomy and independence later in life.

  • What Do NCI Data Tell Us About the Characteristics and Outcomes of Young Adults Receiving Services?

• NCI at 20

  HSRI President Emerita Val Bradley wrote this monograph to commemorate the 20th anniversary of NCI. The report details some of the history of NCI, how it's developed over the years, and how the data are being used.

  • NCI at 20

• Case Studies: Using NCI for Quality Improvement

  HSRI President Val Bradley put together some Case Examples that examine a hypothetical process and course of action taken by a state to address the issues of Guardianship and Abuse/Neglect. Check them out here:

  • Case Example: Guardianship
  • Case Example: Abuse and Neglect

• What Do NCI Data Show About Respondents Who Need Support for Self-Injurious Behavior?

  • What Do NCI Data Show About Respondents Who Need Support for Self-Injurious Behavior?

• What Do NCI Data Show About Friendship and Life Outcomes for Adults With Intellectual and Developmental Disabilities?

  • What Do NCI Data Show About Friendship and Life Outcomes for Adults With Intellectual and Developmental Disabilities?
  • What Do NCI Data Show About Friendship and Life Outcomes for Adults With Intellectual and Developmental Disabilities?: HIGHLIGHTS EDITION

• Working in the Community: The Status and Outcomes of People with Intellectual and Developmental Disabilities in Integrated Employment--Update 2

  • Working in the Community: The Status and Outcomes of People with Intellectual and Developmental Disabilities in Integrated Employment--Update 2

• What NCI Data Reveal About Service Delivery and the Respect Given to the Rights of People With I/DD

  • 2015 Data Brief: What NCI Data Reveal About Service Delivery and the Respect Given to the Rights of People With I/DD

• What Do NCI Data Reveal About Individuals With ID/DD Who Need Behavior Support?

  • 2014 Data Brief - Behavior Support

• Working in the Community: the Status and Outcomes of People with Intellectual and Developmental Disabilities in Integrated Employment – an Update

  • Working in the Community: the Status and Outcomes of People with Intellectual and Developmental Disabilities in Integrated Employment

• What Do NCI Data Reveal About Individuals With Intellectual and Developmental Disabilities Who Communicate Nonverbally?

  • 2014 Data Brief - Nonverbal Communication

• What do NCI data tell us about the racial and ethnic disparities in healthcare utilization experienced by adults with intellectual and developmental disabilities?

  • 2013 Data Brief - Race and Ethnicity and Preventive Healthcare

• What does NCI tell us about adults with intellectual and developmental disabilities who are taking prescribed medications for anxiety, behavior challenges, mood disorders or psychotic disorders?

  • 2012 Data Brief - Psychotropic Medication

• Working in the community: The status and outcomes of people with ID/DD in integrated employment

  • 2012 Data Brief- Employment Outcomes

• What does NCI tell us about older adults with intellectual and developmental disabilities?

  • 2011 Data Brief- Older Adults

• What does NCI tell us about people who self-direct?

  • 2011 Data Brief- Self-Direction

• What does NCI tell us about people with dual diagnosis?

  • 2011 Data Brief- Dual Diagnoses

• What does NCI tell us about people with autism? – An update

  • 2011 Data Brief- Autism

• What work means: What does NCI tell us about the quality of life of adults with intellectual and developmental disabilities who are employed in the community?

  • 2011 Data Brief- Employment: What Work Means

• What does NCI tell us about adults with disabilities who live at home?

  • 2010 Data Brief- People Who Live at Home