National Core Indicators
Examining Outcomes for People with Autism(03/2017)
Are people with autism benefiting from disability reforms and supports to the same extent as people with other developmental disabilities? HSRI staff, along with partner Ari Ne’eman, examined the NCI Adult Consumer Survey data to find out. They discovered that, compared with respondents without an ASD diagnosis, respondents with ASD with were less likely to have paid jobs in the community, less likely to have had input into major life decisions, and less likely to be included in their communities.
Check out their newly released article in the journal Inclusion, featuring additional findings and some suggestions for future research and policy. Congratulations to the authors – HSRI’s Dorothy Hiersteiner, Valerie Bradley, Julie Bershadsky, and Alixe Bonardi, and Ari Ne’eman of the Autistic Self Advocacy Network!
Alixe Bonardi Named Fellow of the American Association on Intellectual and Developmental Disabilities(01/2017)
Alixe Bonardi, senior leader of HSRI’s intellectual and developmental disabilities services research team, has been named a fellow of the American Association on Intellectual and Developmental Disabilities (AAIDD).
Bonardi has been an employee of HSRI for two years, and she leads HSRI’s National Core Indicators efforts, a 20-year partnership with the National Association of State Directors of Developmental Disabilities Services to assess outcomes for people with intellectual and developmental disabilities. She is also a clinical assistant professor at the University of Massachusetts Medical School and a faculty member in the Leadership Education in Neurodevelopmental Disability (LEND) program. Alixe has co-authored several publications, with a current area of concentration in health equity and evaluation of the quality of life for individuals with disabilities.
The honor of Fellow of the Association of the AAIDD is presented after careful review by a committee of association leaders. Individuals are nominated and considered when they are judged to have made a meritorious contribution to the field of intellectual disability and after they have been an active, participating member of AAIDD for at least seven continuous years.
Presentation: Supporting Individuals to Have Full and Meaningful Lives as Members of Their Communities(05/2016)
On May 25, HSRI President Valerie Bradley presented to a forum of Massachusetts parents and advocates. In addition to highlighting national trends that impact the support needs of families, she also spoke about reforms in family support and shared NCI family survey data related to the circumstances of families receiving state services.
Val highlighted several trends in the DD field that have an impact on families. These trends include Supported Decision Making, the new HCBS rule, Olmstead and the ADA, and Self-Directed Supports options. She also discussed the challenges faced by families with aging caregivers and the needs of families with transition-aged youth. Using NCI family survey data, Val also presented information on the demographics, or the personal characteristics, of families and looked at their rates of satisfaction with services and the perceived impact of services on families' lives.
Webinar: Outcomes for Adults on the Autism Spectrum - Putting the Research in Context(04/2016)
Valerie Bradley and Ari Ne’eman (president and co-founder of the Autistic Self Advocacy Network) recently presented a webinar entitled “National Core Indicators and Autism Spectrum Disorder: Putting the Data in Context.” Sharing NCI data on demographic characteristics and outcomes for adults on the autism spectrum who receive services from state I/DD systems, they provide policy and research recommendations that address the need for services and supports that encourage inclusion, integration, autonomy and decision-making, productivity, and independence.
To watch the webinar, please use the following links:
HSRI Staff Member Co-Authors Article on the Benefits of Friendship Networks for People with I/DD(03/2016)
HSRI Policy Associate Elizabeth Pell co-authored an article with Angela Novak Amado and Kim Zoeller in the Winter 2016 issue of Impact, an issue focused on supporting wellness for people with I/DD. Their article, “Friendship Matters! Improving Health and Well-Being by Supporting Relationships,” includes NCI data on the better outcomes achieved when adults have friendships that extend beyond family and paid staff. The article notes how provider agencies can use The Council on Quality and Leadership’s Personal Outcomes Measures to explore and strengthen the social capital of people served. It also includes specific strategies and free resources that anyone can use to help connect people with I/DD with general community members.
NCI Releases Staff Stability Survey Report(11/2015)
Recognizing that the quality of life for individuals with ID/DD in the service system is inextricably linked to the work quality and stability of those who are paid to support them, the National Core Indicators (NCI) assists states in collecting accurate and comprehensive data on the direct support professional (DSP) workforce. NCI just released its 2014 Staff Stability Survey Report, which compiles survey data taken from provider agencies in nine participating states and the District of Columbia.
HSRI Presentations from AAIDD Annual Meeting 2015(6/2015)
HSRI President Val Bradley and many members of our staff recently attended and presented at the AAIDD Annual Meeting in Louisville, Kentucky. The conference sessions and plenaries highlighted exciting innovations in research, practice, and policy, and HSRI attendees returned feeling motivated and energized about progress in the field. Here we provide a number of the presentations they gave, covering such topics as staff stability, the new HCBS requirements - tools for tracking compliance and for self-advocates, and quality of life data and trends.
Take a Look! HSRI President Shares NCI Findings in New Video Series(02/2015)
The American Association on Intellectual and Developmental Disabilities has produced a series of TED Talk-style videos that highlight issues of interest. HSRI President Val Bradley stars in a video on National Core Indicators (NCI) findings. Val's video is the first under the heading "Supports." To learn more about the core indicators, check out the NCI website.
HSRI National Core Indicators Team Participates in Webinar on Reducing Medication Use in Adults with ID/DD(03/2014)
On February 18, Val Bradley and Dorothy Hiersteiner participated in a webinar titled “Reducing Medication Use in Adults with ID/DD,” organized by the American Network of Community Options and Resources (ANCOR). Val and Dorothy presented NCI findings on rates of psychotropic drug use among the NCI Adult Consumer Survey population and discussed initiatives undertaken by states to manage over-medication. Other webinar presenters demonstrated the findings of state-specific studies into psychotropic drug use and discussed the measures their states have taken to reduce over-medication in adults with ID/DD. The webinar brought attention to an important issue, and it was well-attended and well-received.
New NCI Data Brief on Race and Ethnicity and Preventive Healthcare(12/2013)
NCI is proud to announce the release of a new data brief entitled "What do NCI data tell us about the racial and ethnic disparities in healthcare utilization experienced by adults with intellectual and developmental disabilities?" The data brief explores significant differences among racial and ethnic groups in demographics such as age, mobility level, level of disability and residence type. The data brief goes on to examine significant differences in preventive healthcare use.
The data brief can be found at http://www.nationalcoreindicators.org/resources/data-briefs/
NCI 2011-2012 Annual Report Released(11/2013)
National Core Indicators (NCI) is proud to announce the release of the 2011-12 Annual Summary Report. The Annual Report highlights selected findings from the 2011-12 data cycle. Please take a look at this valuable and informative resource.
NCI Staff To Present Poster at National Conference on Health Disparities Research at the Intersection of Race, Ethnicity and Disability(04/2013)
On April 25, 2013, NCI staff will be presenting a poster at Health Disparities Research at the Intersection of Race, Ethnicity and Disability: A National Conference in Washington, DC. The poster will look at what NCI data show about racial and ethnic disparities in healthcare utilization faced by individuals with ID/DD.
Current NCI Psychotropic Medication Data and State Efforts to Combat High Rates of Medication Use(04/2013)
On Friday, March 29, HSRI conducted a webinar on current NCI medications data and state efforts to quell high rates of medication use by the adults they serve. NCI staff began the webinar by discussing the NCI program, what the NCI data show about medication use, and specific outcomes for those who take medications. Employees from three state agencies (Massachusetts, Georgia and Missouri) then presented on steps they have taken to address high rates of medication use. Questions from the audience followed. Presentation is attached.
NCI Webinar on Medication and State Efforts to Reduce Overuse(02/2013)
As part of the NCI’s efforts to offer state DD managers and stakeholders useful data for systems change, NCI data on adults with I/DD taking medications for mood, anxiety, psychosis and behavior will be presented on a national webinar. NCI staff will describe differences in use of these medications by diagnosis, by residential type, and other demographic differences. Featured will be four states’ (Ohio, Massachusetts, Missouri, Georgia) quality improvement initiatives to reduce overuse of these types of medications. This webinar is free and open to the public.
Date: Friday, March 29, 2013
Time: 1:30 pm, Eastern Daylight Time (New York, GMT-04:00)
Meeting Number: 598 173 487
Meeting Password: medicine
- Go to https://hsri.webex.com/hsri/j.php?ED=225538662&UID=1595622362&PW=NZDIxMDMwNjU4&RT=MiMxMQ%3D%3D
- If requested, enter your name and email address.
- If a password is required, enter the meeting password: medicine
- Click "Join".
To view in other time zones or languages, please click the link:
To join the teleconference
Call-in toll-free number: 1-866-503-4560 (US)
Show global numbers: https://www.tcconline.com/offSite/OffSiteController.jpf?cc=7385424346
Conference Code: 738 542 4346
National Core Indicators has been profiled in Governing Magazine(01/2013)
National Core Indicators has been profiled in Governing Magazine in an article called "Measuring Developmental Disabilities Services' Success."
The article discusses the origins of NCI and its use as an outcomes measure. "It started around the time states began flirting with managed care," says Charles Moseley, associate executive director of NASDDDS. "And we were also starting to hear from other directors that they were getting a different kind of question from legislators during budget hearings. They didn't want to hear about outputs -- how many clients we were serving -- they wanted to know what difference we were making in these folks' lives."
In addition, Steven Hall, Kentucky's commissioner of the Department for Behavioral Health, Developmental and Intellectual Disabilities, talks about how NCI data has helped design programs and policies that will improve the quality of life of many individuals involved with the system. Some changes impemented in KY include: "A 180-degree shift away from sheltered workshops to supported employment based on clear evidence that clients who have actual jobs report far better life outcomes than those who are simply being shuttled to and from workshops. Those with jobs reported key improvements in measures like healthier relationships, less loneliness and even less obesity, not to mention such other incidentals as higher incomes."
GOVERNING is the nation's leading media platform covering politics, policy and management for state and local government leaders. Recognized as the most credible and authoritative voice in its field, GOVERNING provides nonpartisan news, insight and analysis on such issues as public finance, transportation, economic development, health, energy, the environment and technology.
You can read the article here: http://www.governing.com/topics/health-human-services/col-measuring-developmental-disabilities-services-success.html
NCI Data Brief on Psychotropic Medication(12/2012)
The latest Data Brief from the National Core Indicators Project has been published on NCI’s website. The Data Brief is entitled "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?". The subject of the Brief is a descriptive analysis of adults with ID/DD who take medications for the four conditions described in the title. Data on utilization of these medications and co-occurring diagnoses are presented. In addition, data on outcomes are compared between people who take one of these medications and people who do not. Some of the notable findings include a high percentage of people who take medications without a recorded diagnosis, as well as the link between taking medications and being overweight or obese. The NCI team plans to continue these analyses and publish the results in a peer-reviewed journal.
The data brief can be downloaded from NCI's website for reading (PDF, 367kb).
NCI Publishes User-Friendly Version of the Consumer Outcomes Report(10/2012)
NCI is excited to introduce a new User-Friendly version of the Consumer Outcomes Report. The Report uses plain language and pictures to describe select items from the Consumer Outcomes Report. We owe a great thanks to California’s Consumer Advisory Committee (CAC) who were instrumental in helping develop this new way of presenting NCI data.
The inaugural “What We Have Learned from the NCI Adult Consumer Survey” shows 2010-11 National NCI data. In future years, along with the national report, each state will receive its own report showing the state’s specific data. The User-Friendly Reports will be released with the national data and located on the NCI website under the User-Friendly Reports section of the Reports Page.
Thanks again to the CAC! We look forward to getting your feedback.
2010-11 National Core Indicators Annual Report Released(10/2012)
HSRI and NASDDDS are pleased to announce the release of the National Core Indicators 2010-11 Annual Summary Report. The Annual Summary Report highlights selected aggregate results from several of the NCI data sources. For 2010-11, particular attention was paid to the Family Surveys data.
The report is avaiable on the NCI website: http://www.nationalcoreindicators.org/resources/reports/
Follow National Core Indicators on social media!(09/2012)
We're proud to announce that National Core Indicators presence on Facebook and Twitter! Follow them to receive news and updates about the program, as well as links to relevant developmental disabilities issues.
HSRI President Valerie Bradley speaks at the National Disability Authority conference in Dublin(09/2012)
The People with Disabilities Participating Fully and Safely in the Community Conference, held in Dublin, Ireland by the National Disability Authority invited HSRI President Valerie Bradley to speak on using National Core Indicators data to Manage Public Systems. Below is a video recording of her presentation:
Recording of other presentations may be found here.
NASDDDS and HSRI Present at AAIDD Annual Meeting(06/2012)
The American Association on Intellectual and Developmental Disabililties held its 136th Annual Meeting this week in Charlotte, North Carolina. NASDDDS and HSRI staff were there presenting on NCI data, specifically on the following topics: employment, psychtropic medications, and obesity. You can download the PowerPoints by visiting the Presentations page on NCI's website, or directly download a copy from the two links below:
National Core Indicators' Data Implementation Guide Published(05/2012)
This handbook was created to enhance the use and application of information generated through the collection of data a part of National Core Indicators (NCI). The audience for this guide includes managers of public intellectual and developmental disabilities (ID/DD) systems, providers of services, board members, people with disabilities and their family members, and other interested advocates.
The guide may be viewed either on the web or downloaded as a PDF file here:
HSRI Presentations at IASSID World Congress and AAIDD Annual Meeting(04/2012)
HSRI staff will be presenting several papers at the upcoming AAIDD Annual Meeting in Charlotte, North Carolina in June and the IASSID World Congress in Halifax, Nova Scotia in July. Presentation topics at the AAIDD meeting will focus on NCI results, including community employment, family outcomes, and data related to the use of psychotropic medications, but also on HSRI’s work pertaining to building individualized budgets based on a measure of individual support needs. Likewise in Halifax, the NCI program will be the focus of a plenary session entitled “National Core Indicators: Outcomes and Services for Adults with Intellectual Disabilities,” presented jointly by Roger Stancliffe from the University of Sydney and Sarah Taub from HSRI. HSRI and our partners at NASDDDS are excited about the opportunity to share NCI findings with an international network of colleagues. In addition, HSRI staff will also be presenting on work related to self-advocacy, systems change and establishing individualized budgets.
More information about the conferences is available here:
Plenary information is available here:
National Core Indicators (NCI) Launches New Website(02/2012)
HSRI and NASDDDS are pleased to announce that the new and improved National Core Indicators (NCI) website is now live! Along with a fresh look and expanded information about NCI and participating states, the new site includes an enhanced chart generator. This feature allows users to create customized charts of NCI data using filters such as state, type of residence, year, and many others. Users can also easily access documents such as the NCI member states' most recent state reports.
Administration on Developmental Disabilities Awards Funding for NCI Expansion(01/2012)
The Administration on Developmental Disabilities (ADD) has awarded NASDDDS $1.5 million dollars over five years in order to expand and improve NCI. Below is a press release from ADD:
The U.S. Department of Health and Human Services (DHHS), Administration for Children and Families (ACF), Administration on Developmental Disabilities (ADD) has awarded a five year contract totaling $1.5 million to the National Association of State Directors of Developmental Disabilities Services (NASDDDS), of Alexandria, VA to increase their efforts with the National Core Indicators (NCI) Project.
"We are very excited about supporting the qualitative approach to understanding the DD service system that the National Core Indicators offers, and helping NASDDDS expand this effort to more States. The NCI data is a useful tool for service systems, researchers, policymakers, families and individuals with developmental disabilities, and will be a great addition to the longitudinal data projects that ADD funds."
In all, 11 states applied to receive funding to join in NCI in the first year of this contract. We are pleased to announce the five states who were accepted to receive this funding to support their ability to measure and track service outcomes and performance during this first year: Virginia, Maryland, South Carolina, Michigan, and Connecticut. Another five states will be selected over the next few months for year two. For more information, please contact Josh Engler at firstname.lastname@example.org.
HSRI President Valerie J. Bradley Presents to the Irish National Disability Authority(10/2011)
Val Bradley recently presented an overview of the National Core Indicators program to approximately 250 attendees in Dublin, Ireland. The theme of the conference was "People with disabilities participating fully and safely in the community", and the title of the presentation was "National Core Indicators: Using Data to Manage Public Systsems"
You can download the powerpoint slides below:
Report Released: National Core Indicators (NCI) 2009-10 Annual Summary Report(10/2011)
The 2009-2010 Annual Summary Report highlights the most interesting information collected from all the NCI survey tools over the 2009-10 data collection period. The cover was designed by Daniel May- a self-advocate from Canada.
For more information on NCI, please visit www.nationalcoreindicators.org.
National Core Indicators Mentioned in Parade Magazine's Featured Story on "Autism’s Lost Generation"(04/2011)
This past weekend Parade Magazine’s feature story on “Autism’s Last Generation” cited the National Core Indicators program, a long-standing data collection effort across half the states and coordinated by HSRI and NASDDDS. The article references an NCI Data Brief on Autism from 2008.
You can read the article here: http://www.parade.com/health/autism/featured/autisms-lost-generation.html
We are also pleased to announce that three new NCI Data Briefs have just been posted to www.nationalcoreindicators.org, including an update of the Autism issue. You can find them on the reports page.
Spread the word and join us in observing National Autism Awareness month!
Reports Available for Download: 3 Data Briefs and the Consumer Outcomes Final Report for 2009-10(04/2011)
National Core Indicators has released 3 new Data Briefs and the Consumer Outcomes Final Report for 2009-10.
The Date Briefs are:
The Consumer Outcomes Final Report for 2009-10 serves as the final report for the consumer outcomes portion of Phase XII (2009-2010) National Core Indicators (NCI) data collection. All consumer survey data submitted between July 2009 and June 2010 are included in this report.
You can download these reports by clicking on the links above, or by visiting www.nationalcoreindicators.org and navigating to the Reports page.
HSRI to Implement the North Carolina Relationships Initiative(04/2011)
HSRI is implementing the North Carolina Relationships Initiative to identify reasons why self-advocates experience loneliness and barriers to relationships in their daily lives. Project staff will host focus groups and conduct interviews with self-advocates, family members, and provider agency staff who live in urban and rural communities around the state. Resulting information will reveal what gets in the way of self-advocates experiencing relationships and also what supports self-advocates need to have relationships. We will use this information to challenge local self-advocates working together to address identified barriers and to develop policy recommendations that increase opportunities for self-advocates to experience safe and healthy relationships in their daily lives.
The project page is available here:
DOJ settlement with Georgia specifies use of NCI for quality assessment(11/2010)
In the recent settlement agreement between the U.S. Department of Justice (DOJ) and the State of Georgia, the State agreed to expand home and community-based services to 750 individuals with developmental disabilities who are currently residing in institutional settings and to prevent institutional placement of another 400 individuals currently living in the community. As a provision of the settlement, DOJ stipulates that the State will institute a quality management system, including a specific directive that participant feedback about the system shall be gathered through participation in the National Core Indicators (NCI) program.
Report Released: National Core Indicators (NCI) 2008-09 Annual Summary Report(11/2010)
HSRI and NASDDDS are pleased to announce the release of the National Core Indicators 2008-09 Annual Summary Report. The Annual Summary Report highlights selected aggregate results from several of the NCI data sources. For 2008-09, particular attention was paid to:
- Whether people living in different residential arrangements experienced different outcomes, and
- Whether people with a dual diagnosis of intellectual disabilities (ID) and mental illness had outcomes that differed from people with ID only.
You can download the entire report here: http://www.hsri.org/publications/download/nci-annual-summary-report-2008-2009
For more information on NCI, please visit www.nationalcoreindicators.org.
“The NCI Blog” is a place where we will share the successes, challenges, and other issues related to the National Core Indicators (NCI). We hope that you the State officials, surveyors/interviewers, self-advocates, family members, and other interested stakeholders will join this discussion by sharing your own NCI experiences. There are no restrictions on content, as long as it’s related to NCI, the language is appropriate (i.e., no cursing), and that absolutely no confidential information is entered. This blog is open to the public.
NCI Annual Report 2007-2008(09/2009)
This report provides detailed state system performance data on individual outcomes, including employment, community participation, choice and decision making; health, welfare and rights covering personal safety, self advocacy and use of medications; family outcomes, addressing information and planning, choice and control and access to support; and other dimensions such as staff stability and competency, and system performance.
Intended to be used in combination with other quality measures such as critical incident reporting, risk assessment and provider monitoring, the NCI indicators are standardized and risk adjusted to permit state to state comparisons and performance benchmarking against national norms. Many states include NCI data as a core component of their CMS mandated waiver program quality management strategy. Currently over thirty state developmental disabilities agencies gather NCI data on a regular basis and the program continues to grow as new states join each year.
News: An article featuring NCI data was recently published in the April 2009 issue of the journal Intellectual and Developmental Disabilities (Volume 47, Number 2).(05/2009)
Satisfaction and Sense of Well Being Among Medicaid ICF/MR and HCBS Recipients in Six States
Roger J. Stancliffe, K. Charlie Lakin, Sarah Taub, Giuseppina Chiri, and Soo-yong Byun
Abstract: Self-reported satisfaction and sense of well-being were assessed in a sample of 1,885 adults with intellectual and developmental disabilities receiving Medicaid Home and Community Based Services (HCBS) and Intermediate Care Facility (ICF/MR) services in 6 states. Questions dealt with such topics as loneliness, feeling afraid at home and in one's neighborhood, feeling happy, feeling that staff are nice and polite, and liking one's home and work/day program. Loneliness was the most widespread problem, and there were also small percentages of people who reported negative views in other areas. Few differences were evident by HCBS and ICF/MR status. The findings document consistent benefits of residential support provided in very small settings-with choices of where and with whom to live-and to individuals living with family.
NCI 10-Year Report(11/2007)
This short report describes the evolution of the National Core Indicators over the past 10 years, the accomplishments of the initiative, and challenges and opportunities going forward