What’s New

In the past, NCI-IDD operated in a four-year revisions cycle for the NCI-IDD Surveys (including the In-Person Survey, Adult Family Survey, Family Guardian Survey and Child Family Survey). However, starting this revisions cycle, we are extending the revisions cycle to a six-year revisions cycle. This choice reflects our understanding of how challenging it can be to receive the survey tools for an upcoming data cycle and to see edits/changes to the tool that will affect your internal monitoring efforts. We also know how important it is to be able to maintain questions from year to year to best observe impacts of quality improvement efforts at the state level. Finally, we wanted to be sure there was ample time to understand and operationalize potential requirements regarding the CMS HCBS Quality Measure Set.

 Why is NCI-IDD changing to a six-year revisions cycle?

• States expressed a desire to have a stable tool.
• Creates time to gather meaningful feedback from states, surveyors and people taking the survey about the functionality of questions. We will design feedback opportunities throughout the cycle.
• Allows for testing of proposed new questions before they’re added to the survey.
• Selected NCI-IDD measures have been endorsed by National Quality Forum (the former CMS Consensus Based Entity) as LTSS quality measures. The six-year revisions cycle allows for robust psychometric testing for maintenance of this endorsement as well as similar testing of other measures to submit for endorsement to the new CBE.
• Allows time for time to better understand the implementation of the CMS HCBS Quality Measure set and its impact on NCI-IDD.
• Creates symmetry with the NCI-AD revisions cycle.

What does a “six-year revisions cycle for the NCI-IDD Surveys” mean for me and my state?

• We will only make substantive changes every sixth year. The next year of substantive changes will be used to collect data for the 2026-27 data cycle.
• A substantive change is defined as:
  • The addition or elimination of questions in the main survey tool (states may still add their state specific questions using NCI-IDD’s usual procedure);
  • The removal or restructuring of sections of the survey; wording changes that alter the meaning of the survey questions.
• Small changes may be made in the interim. Small changes are defined as: grammatical, punctuation, or slight vocabulary changes; the correction of typos; the addition of instructions or clarifying guidance for surveyors within the survey tool.  

As always, let us know what questions you have!

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National Core Indicators would not be possible without the tireless work of the surveyors who collect this valuable information. To amplify the voices of the surveyors who make NCI happen, we have created this 3-part video series with Nicole LeBlanc, a peer surveyor in Maryland. Watch the videos below to hear Nicole describe what it’s like to be a peer-surveyor in Maryland, the vital role of surveyors in hearing directly for people who use services, and how surveyors make sure to capture people’s voice in authentic ways. 

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The 2023 Sarah Taub Memorial NCI Webinar was presented on September 6th, 2023 from 3-4pm Eastern Time.

National Core Indicators (NCI) is the most comprehensive and representative source of data on the characteristics and outcomes of people with disabilities and older adults who use long-term services and supports (LTSS). In 2021-2022, NCI surveyed over 27,000 older adults and people with disabilities using long-term services and supports, as well as 27,502 family members and guardians of people with intellectual and developmental disabilities receiving state-funded services. This webinar showcased the key findings about community inclusion and participation, employment, healthcare, rights and respect, and person-centered planning across the populations who participate in NCI. Discussion explored trends in these outcomes across service users, including examining outcomes related to the HCBS settings rule, which outcomes are promising and in need of improvement, as well as outcomes that differ across populations. The findings shared in this webinar helped improve understanding of where there are gaps in outcomes for service users and can be used to inform LTSS policy and practice.

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On August 1-2, 2023, NCI-IDD held the 2023 Annual Meeting in Omaha, NE. With representatives from about 20 states in attendance and many more participating virtually, the meeting presented relevant and thought-provoking content and allowed for robust conversation and knowledge sharing. Plus, we had fun!

The slides contain:
1) States’ “One Slide Challenge” slides in which participating states discussed NCI-IDD in their state
2) Reviews of NCI-IDD and NCI-AD current activities
3) OR presentation on the State DD agency/UCEDD partnership and the work and resources that have been produced
4) TN presentation on the NCI-IDD State of the Workforce and the creation of a State Workforce Advisory Group
5) Review of the Proposed Access Rule and NCI-IDD
6) Translating Knowledge: Best practices for disseminating data to various groups
7) ODESA 2.0
8) IN presentation on surveyor management and survey administration strategies
9) NE presentation on their data dashboard
10) PA presentation on peer surveyors

On June 30, National Core Indicators submitted this comment letter to CMS in response to the Ensuring Access to Medicaid Services Notice of Proposed Rulemaking (Proposed Access Rule).

The service systems providing long-term services and supports (LTSS) to older adults and people with disabilities are currently struggling with challenges recruiting and retaining Direct Support Workers (DSWs). Without an adequate workforce providing support, people receiving services from these systems do not have the quality or continuity of supports they need to live and thrive in their homes. However, to date there is a gap in uniform data collection on the DSW workforce within states and across the nation.

The National Core Indicators-Aging and Disabilities (NCI-AD) State of the Workforce Survey aims to collect crucial indicators of stability and quality of the workforce such as turnover, length of employment, vacancy rates, and more. In addition, the survey collects data to describe the workforce and workforce circumstances, such as demographic information, information on the types of supports provided, wages, benefits, etc. Information collected through this effort is critical to understanding the true scope of the workforce crisis and to provide better a context to support state efforts to recruit and retain DSWs.

In 2022, National Core Indicators-Aging and Disabilities (NCI-AD) launched a pilot to test the NCI-AD State of the Workforce Survey (SotW), which was administered to provider agencies employing direct support workers (DSW) within the aging and disabilities LTSS sector. The survey was piloted with five participating states: Missouri, Washington, Colorado, Wisconsin, and Indiana. The goal of the pilot was to assess the feasibility of collecting this information and to finetune the survey instrument.

The pilot survey and analysis found that the NCI-AD State of the Workforce effort can reliably collect data from provider agencies on the DSW workforce supporting the AD population. Several lessons were learned from the pilot that will facilitate data collection in the future.

See PILOT REPORT here

See Summary here

The team at National Core Indicators (NCI)  is looking to hear directly from people with personal and professional experience with long-term services and supports about priority research topics. The anonymous survey asks respondents to rate the importance of researching various individual outcomes and workforce-related topics, and should take less than 10 minutes to complete. The survey will close on June 30^th. The data from this survey will be used to inform the priority research topics for NCI over the coming years.

To complete the survey, please click here, or use the QR code below. We appreciate your support.

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. (https://onlinelibrary.wiley.com/doi/10.1111/jir.13015)

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

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

Background

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.

Methods

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.

[CAMBIRDGE, MA] – 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 by27 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.

NCI-IDD 2021-22 In-Person Survey AT A GLANCE

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/.

NCI mourns the loss of Judy Heumann, who passed away over the weekend. Judy was a tireless advocate for disability rights and worked to break down barriers to ensure that people with disabilities have equal access and opportunities to live the lives they want to live. Judy was a founder of the independent living movement and played a critical role in the passage of the Rehabilitation Act, the Individuals with Disabilities Education Act, and the Americans with Disabilities Act.

HSRI President Emerita and NCI founder Val Bradley shares her memories of Judy Heumann.

I first became aware of Judy in 1975 when she came to California to be the Deputy Director of the Berkeley Center for Independent Living where she worked until 1982.  The Berkeley Center was the forerunner of the independent living movement.  I knew of the work of the Center since I had the good fortune of spending time with its founder, Ed Roberts, who became the Director of the California Department of Vocational Rehabilitation.  Both Judy and Ed were survivors of polio. 

The next time I was made aware of her was at the White House Conference on Handicapped Individuals Conference which opened on May 23, 1977.  HSRI was under contract with then HEW [Department of Health, Education and Welfare] to assist with the planning and logistics of the Conference.  Judy was a delegate, and I was able to see her in action and to witness the strength and breadth of her advocacy.  Months before the conference, HEW Secretary Joseph Califano had refused to sign off on regulations that would have provided enforcement of Section 504 of the Rehabilitation Act which prohibited discrimination against people with disabilities in any federally funded program.  Judy and colleagues demonstrated at HEW in Washington D.C. and she was an organizer of a sit-in at the San Francisco Office of HEW from April 5, 1977 to May 4, 1977 – the longest such sit-in in history.  Simultaneous sit-ins were happening at 9 other regional HEW offices.  Because of the relentless pressure by Judy and her colleagues, Califano signed the Education for All Handicapped Children’s Act and Section 504 regulations on April 28, 1977 – only days before the White House Conference.  There was an enormous sigh of relief by the Conference organizers. 

Judy took on many roles after that including at the Department of Education and the Department of State and as the co-founder of the World Institute on Disability.  I met her again when she because DC’s first Director of the Department of Disability Services.  We were working with the DD agency to do training and technical assistance with their ongoing federal litigation.  Judy was in her element and raised the profile of the Department as well as the cause of people with disabilities.

The last time I saw her was at the ASAN Gala a few years ago where she received an award for her lifetime of advocacy.  When she finished her speech, she came over to me to say hi and gave me her card.  I was touched to be remembered by such a giant in our field.  Good bye Judy, what an extraordinary legacy you leave behind.

Judy’s impact extended far beyond the borders of the United States. As the co-founder of the World Institute on Disability, she was a leading voice for disability rights on the global stage. She worked tirelessly to raise awareness of the challenges faced by people with disabilities around the world and to promote the inclusion of people with disabilities in all aspects of society.

Judy’s legacy will live on through the countless individuals whose lives she touched and the countless achievements she helped to make possible. Her courage, determination, and unwavering commitment to the cause of disability rights will continue to inspire future generations of advocates and activists.

Rest in peace, Judy Heumann. Your work and your spirit will never be forgotten.

• Created in 1999, National Quality Forum (NQF) is the only federally-recognized organization in the nation that evaluates and endorses healthcare measures or practices as the best, evidence-based approaches to improving care.
• NQF-Endorsed measures, which must meet rigorous criteria, are relied on by the federal government, states, and private-sector organizations to evaluate performance and share information with patients and their families.
• In early 2022, NQF officially endorsed 14 NCI-IDD measures, and the technical specifications can be found on the NQF website. Please note that the data referenced in the NQF endorsement was from survey year 2018-19.
• This all-new Report Chapter showcases the NQF-Endorsed measures using the latest available data (2020-21).

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• 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.

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• 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%.

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This article provides historical context on the evolution of performance measures for system improvement, examines the perspectives and insights of state public managers on the use and utility of NQF-endorsed outcome measures from the NCI®-IDD In-Person Survey (IPS) for quality improvement, and discusses the necessity of ensuring that outcome measures align with public policy goals.

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Baltimore MD. August 3-4, 2022

On August 2, NCI admirers, veterans and friends joined together at the National Aquarium to toast NCI’s 25 years of measuring DD system quality and performance.  It was a fun evening of laughs, memories and good food and drink. 

On August 3-4, 2022, NCI-IDD held the 2022 NCI-IDD Annual Meeting. About 60 people came together to talk all things NCI-IDD, such as sharing strategies for survey administration, discussing challenges, examining state data-dissemination resources, and understanding federal quality measurement initiatives. Everyone is energized for the upcoming survey cycle. 

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On Thursday, July 21, CMS released a State Medicaid Director Letter providing guidance for the first-ever HCBS Quality Measure Set. This letter was the first of two planned guidance documents from CMS related to the measure set. 

As noted in the State Medicaid Director Letter, CMS provides states flexibility to select measures from the consumer survey of their choice from the following validated tools: HCBS CAHPS®, and POM®, and the National Core Indicators Surveys: NCI®-IDD, NCI-AD™.

The significant inclusion of NCI®-IDD & NCI-AD™ within this national measure set is a testament to the vision, dedication and leadership of state human service systems, NCI staff and staff at HSRI, NASDDDS, and ADvancing States. These entities have continued to emphasize the importance of a robust quality monitoring program that ensures that the experiences of people who access LTSS are at the forefront of quality improvement efforts. NCI partners have consistently expressed to our federal partners how NCI measures align with stakeholder and state priorities and expectations for quality and monitoring.

As CMS noted in this communication, quality measures will continue to be developed and enhanced. We are committed to further measure development and testing to ensure that NCI remains a valuable and valued tool that supports states in improving quality LTSS.

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Check out the 2020-21 National NCI-IDD In-Person Survey and Family Survey User Friendly Reports. These reports, designed together with self-advocates, highlight topic-specific data in an accessible, easy-to-read format.

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Webinar Recap: Institute on Community Integration (ICI) Policy Forum

• Low wages are a major factor contributing to the direct support workforce crisis. This webinar discusses the recent Policy Research Brief, which compared wages of direct support professionals (DSPs) to what people earn in other similar professions.

• It also puts them in context by comparing DSP wages to living wages—the cost of living based on typical expenses that meet minimum standards of living.

• ICI’s Julie Bershadsky moderated this forum. The discussants were Dorothy Hiersteiner from the NCI-IDD team at HSRI and Mary Lou Bourne from Management Support Solutions.

• The recording of the ICI Policy Forum held on April 6, 2022 and the slides are now available

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In response to the national COVID-19 public health emergency, we are pleased to announce that data is now available from COVID-19 Supplements to all NCI-IDD surveys. The COVID-19 Supplements were optional for states, and were intended to support the understanding of the experience of people with intellectual and developmental disabilities (IDD), their families, provider agencies, and the DSP workforce at the beginning of the COVID-19 pandemic. Data were collected between July 1, 2020 and June 30, 2021. These survey findings reflect the far-reaching effects of the pandemic on IDD supports throughout our nation and inform states as they plan for the future.

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