National Core Indicators for Intellectual and Developmental Disabilities Home- and Community-Based Services Measures ("NCI for ID/DD HCBS Measures" hereafter) originate from NCI(R) In-Person Survey (IPS), an annual multi-state cross-sectional survey of adult recipients of state developmental disabilities systems’ supports and services. First developed in 1997 by the National Association of State Directors of Developmental Disabilities Services (NASDDDS) in collaboration with Human Services Research Institute (HSRI), the main aims of NCI for ID/DD HCBS Measures were to evaluate person-reported outcomes and assess state developmental disabilities service systems performance in various domains and sub-domains accordingly. The unit of analysis is "the state", and the accountable entity is the state-level entity responsible for providing and managing developmental disabilities services. Currently, 48 states and the District of Columbia are members of the NCI program. To align with member states’ fiscal schedules, the annual survey cycle typically starts on July 1 and ends on Jun 30 of the following year.
Gathering subjective information and data from people with ID/DD poses unique challenges due to potential intellectual and developmental limitations experienced by the population. As such, extensive work went into the processes of developing NCI IPS administration methods, survey methodology and measure design and revisions. The original development built on direct consultation with members of the target population and their advocates, as well as extensive literature review and testing.
This measure assesses social connectedness by examining the frequency with which people receiving home and community‑based services experience loneliness. It calculates the proportion of people who report that they do not feel lonely often. The measure is derived from a National Core Indicators survey item that asks whether the respondent ever feels lonely or feels like they do not have anyone to talk to. Responses of “no” or “yes, sometimes” are recoded to indicate the desired outcome, while responses of “yes, often” indicate frequent loneliness. This measure is intended to capture perceived social connectedness and to support monitoring of social well‑being and inclusion among people receiving HCBS.
Measure Specs
General Information
National Core Indicators® - Intellectual and Developmental Disabilities (NCI®-IDD) is a national effort to measure and improve the performance of public developmental disabilities agencies. The measures in this submission are all derived from the NCI-IDD In-person Survey (IPS), which collects experience of care data from adults who receive case management and at least one other paid service from their state developmental disability program. These paid services, collectively known as home and community-based services (HCBS), are intended to support people with disabilities to live and engage in their communities. They include assistance with activities of daily living/instrumental activities of daily living (ADLs/IADLs), employment supports, transportation, support to participate in community life, occupational, physical and other therapies, residential services, behavioral health services, and family and caregiver supports, among others. More than one million people in the U.S. receive services from state developmental disability agencies (Administration for Community Living, n.d.). Medicaid is the predominant payer for HCBS for people with intellectual and developmental disabilities (U.S. Government Accountability Office, 2023). Medicaid-funded HCBS is required to follow person-centered service planning practices where service plans are built around the expressed, individual goals and preferences of the person receiving services.
A 2015 expert panel, which included individuals with disabilities, developed a framework for assessing HCBS quality that comprises 11 domains (National Quality Forum, 2016). The NCI IPS encompasses many of the domains from this national HCBS quality framework, including Person-Centered Planning and Coordination, Choice and Control, Community Inclusion, and Holistic Health and Functioning. Because many HCBS outcomes are individual to the service recipient, they are often best assessed from the person’s perspective. NCI measures provide representative data on whether services are person-centered and meet HCBS users’ needs, priorities, and goals. These data are rolled up to the system-level in state-specific reports. These system-level results, along with more granular data, can be and have been used for quality improvement activities to improve system performance.
Since NCI-IDD was first launched, 48 states have participated. State programs have used NCI-IDD measure results to monitor and improve program participants’ experience with services, including efforts to increase employment. For example, in Missouri, NCI-IDD data demonstrated low rates of people who express they want a job who have a related goal in their service plan. This led to improvement initiatives called Employment First Collaborative and Empowering Through Employment. As a result of these initiatives, significant increases in the number of service plans with employment authorizations occurred between 2016 and 2020. Several NCI-IDD measures are also included in the Centers for Medicare & Medicaid’s (CMS) HCBS Quality Measure Set (QMS). States using the NCI-IDD IPS for compliance with the QMS requirements are required to report on the measures included as QMS mandatory measures using either the 2024-25 or 2025-26 data.
References
Administration for Community Living (n.d.) 30 Years of Community Living for Individuals with Intellectual and/or Developmental Disabilities (1987-2017) Retrieved from https://acl.gov/sites/default/files/Aging%20and%20Disability%20in%20America/30%20Years%207-13-21.pdf
CMCS (2024) Informational Bulletin. Retrieved from https://www.medicaid.gov/federal-policy-guidance/downloads/cib041124.pdf
CMCS (2024) MFP Grant Note: Note to Money Follows the Person (MFP) Demonstration Grant Recipients: Updates to the Home and Community-Based Services (HCBS) Quality Measure Set (QMS) Reporting Requirements for the MFP Demonstration. Retrieved from MFP Supplemental Services Notice
Missouri Department of Public Health (N.d.) Employment Initiatives. Retrieved from Employment Initiatives | dmh.mo.gov
Missouri Department of Public Health (2021) MOQO and You: Daily Life & Employment . Retrieved from MOQO & You: Daily Living & Employment Report | dmh.mo.gov
Missouri Department of Public Health (N.d.) Empowering Through Employment. Retrieved from Empowering Through Employment | dmh.mo.gov
National Quality Forum. (2016). Quality in Home and Services to Support Community Living: Addressing Gaps in Performance Measurement. Washington, DC. Retrieved from https://clpc.ucsf.edu/sites/clpc.ucsf.edu/files/HCBS_Final_Report.pdf
United States Government Accountability Office (GAO, 2023). Medicaid: Characteristics of and Expenditures for Adults with Intellectual or Developmental Disabilities. Retrieved from https://www.gao.gov/products/gao-23-105457
This measure assesses the proportion of people who report that they do not feel lonely often. Loneliness, or more specifically its absence, is one dimension of social connectedness and community inclusion. Community inclusion is one of the 11 domains in the HCBS Quality Framework (National Quality Forum, 2016). This measure is also included in the Centers for Medicare & Medicaid Services (CMS) HCBS Quality Measure Set (QMS). States using NCI-IDD IPS for compliance with the QMS requirements are required to report on the measures included as mandatory measures of the QMS using either their 2024-25 or 2025-26 data.
People with IDD value social inclusion (Stancliffe and Hall, 2023). Loneliness is individually defined and thus people are the best source of information about whether they experience loneliness. Through person-centered service planning processes people can identify community inclusion and social connectedness goals and the services that can help achieve them (Chong and Caldwell, 2023). This outcome measure can support state programs to monitor people’s self-reported loneliness and explore options to increase social connectedness through person-centered service planning, as well as monitor effectiveness of any quality improvement efforts.
References
Chong, N. and Caldwell, J. (2023) The associations between person-centered planning and person-reported outcomes in home- and community-based services Innovation in Aging https://doi.org/10.1093/geroni/igad104.0808
National Quality Forum. (2016). Quality in Home and Services to Support Community Living: Addressing Gaps in Performance Measurement. Washington, DC. Retrieved from https://clpc.ucsf.edu/sites/clpc.ucsf.edu/files/HCBS_Final_Report.pdf
Stancliffe, R. J., & Hall, S. A. (2023). Social inclusion of adults with intellectual and developmental disabilities: Toward belonging. International Review of Research in Developmental Disabilities 64;253-306 doi: 10.1016/bs.irrdd.2023.06.002
Measures 3622-1-m (NCI for ID/DD HCBS: Community Job Goal) and 3622-2-m (NCI for ID/DD HCBS: Activities of Daily Living (ADL) Goal) are both calculated by examining data collected in the Background Information Section of the survey on goals included in the persons Individualized Service Plan (ISP), and then contrasting that with whether the person has an expressed desire for that goal (Data collected during the survey).
The Background Information Section data are collected separately from the survey itself and come from existing administrative records. The Background Information data used for the above measures comes directly from the respondent’s ISP. In some states, the Background Information data collectors do not have access to the respondent’s ISP. In those cases, surveyors can contact the respondent’s case manager to access this information, and the case manager should review the ISP.
To mitigate challenges related to differing languages used across states to refer to ADL and Community Job Goals, the survey questions are deliberately broad to encompass varying wordings or phrasing of goals in ISPs.
Numerator
The numerator for this measure consists of individuals who report that they do not feel lonely often. This is assessed using NCI-IDD In-Person Survey question Q20: “Do you ever feel lonely? (Do you ever feel like you don’t have anyone to talk to?)” Response options are 2 = Yes, often; 3 = Sometimes; 1 = No; and 99 = Don’t know, no response, or unclear response. Individuals who respond “1 No” or “3 Sometimes” are included in the numerator.
The numerator for this measure consists of individuals who report that they do not feel lonely often. This is assessed using NCI-IDD In-Person Survey question Q20: “Do you ever feel lonely? (Do you ever feel like you don’t have anyone to talk to?)” Response options are 2 = Yes, often; 3 = Sometimes; 1 = No; and 99 = Don’t know, no response, or unclear response. Individuals who respond “1 No” or “3 Sometimes” are included in the numerator.
More details are available in attached 3622-1.18-Calculation-of-Measure-Score-Spring2026.docx
Denominator
The denominator for this measure includes adults receiving services who participate in the NCI‑IDD In‑Person Survey and respond to the loneliness item (question Q20, please see above).
The denominator for this measure includes adults receiving services who participate in the NCI‑IDD In‑Person Survey and respond to the loneliness item (Q20, please see above).
Exclusions
In general, cases are excluded from the denominator when the surveyor indicates that the respondent did not appear to understand the questions or did not answer in a consistent manner. Cases are excluded from denominators when required survey responses are missing, declined, or otherwise not interpretable. This includes responses such as “don’t know,” refusals, or blanks. Only responses explicitly listed as valid response options are included in the denominator. For measures that depend on skip patterns or respondent eligibility, cases are excluded from denominators when prerequisite conditions are not met. For example, items that follow a screening question include only cases that affirmatively meet the screening criteria, and all other cases are excluded from the denominator.
- Cases are excluded from the denominator when the surveyor indicates that the respondent did not appear to understand the questions or did not answer in a consistent manner:
- Excluded if INVL_CR1_15 = 1
- Cases are excluded from denominators when required survey responses are missing, declined, or otherwise not interpretable:
- Excluded if LONELY_21 is missing or "Don't know"
Measure Calculation
Please see attached 3622-1.18-Calculation-of-Measure-Score-Spring2026.docx
Please see 3622-1.19-Measure-Stratification-Spring2026.xlsx for measure stratification details.
Staff
The NCI-IDD® In-Person survey (IPS) was designed to collect information directly from individuals receiving developmental disability system services. The IPS offers valid, reliable, person-centered measures that states use to demonstrate how publicly funded supports are impacting people’s lives and to determine where state systems can improve the quality of those supports.
However, gathering subjective information and data from people with IDD poses unique challenges due to potential intellectual and developmental limitations experienced by the population. NCI IPS administration methods, survey methodology and measure creation and revision were designed with the survey population in mind and are uniquely designed to collect data from this population.
Instructions for Data Collection:
IPS Patient-Reported Data and/or Survey Data are collected via a direct conversation with a person receiving support and services from the state’s lead agency or accountable entity at the state level that administers services to people with intellectual and developmental disabilities (IDD).
The measured entity for all measures included in this submission is the state. In each member state, the lead agency or accountable entity at the state level that administers services to people with IDD is responsible for the state’s IPS administration, in accordance with NCI’s methodological standards.
NCI provides training and technical assistance at all stages of the effort from sampling design through standardized surveyor training and data collection and performs validity checks on the collected data. NCI allows, and has developed training and guidance for, survey administration via face-to-face survey or remote surveying via video conference. NCI offers the IPS survey tool translated into Spanish and written Chinese for trained surveyors who are bilingual. If a trained bilingual surveyor is not available, and/or the respondent requests a language for which there is not a translated survey tool available, NCI allows for the use of interpreters and provides surveyors with training and guidance on how to administer the survey with an interpreter.
Though eligibility for services varies by state, the population surveyed by the IPS includes individuals with IDD.
The IPS consists of two main sections, denoted by Roman numerals I and II.
Section I of the survey contains questions which pertain to personal experiences and require subjective responses; this section may only be answered by the individual receiving services.
Section II of the survey—which consists of objective questions on the individual’s involvement in the community, their choices, rights, and their access to services—allows for responses from a “proxy,” that is, a person who knows the individual well (such as a family member or friend). Surveyor training ensures that surveyors are able to identify acquiescence (e.g. all yes responses), and indicators of inability to understand and respond to questions.
At the end of Section I, the surveyor indicates whether the respondent appeared to understand the questions and answered them in a consistent manner. If the surveyor’s response to this question is negative, Section I data are excluded from analysis. If Section I data are excluded from analysis based on the surveyor’s assessment of inconsistent responses and potential lack of understanding, Section II data are also excluded for this case unless a proxy respondent was used.
A third part of IPS data, known as “Background information” or BI, comes from administrative records and is used to characterize the demographics of respondents. These data are not Patient-Reported Data and/or Survey Data. In some cases, BI data is used to determine whether a question is relevant for the respondent to answer.
Response rates:
The data analyzed for the most recent testing came from 39 states. Each state is instructed to construct a sample frame of adults (18 and over) who are receiving at least one publicly funded service in addition to case management from their state developmental disability service system. Based on this sample frame and the assumption of a middle response distribution (50%), each state is recommended to have a sample size that will support both (1) a 95% confidence level, and (2) a ±5% margin of error. States whose final sample of completed surveys does not include a number of completed surveys that reach this threshold will not be included in NCI reporting. Most states sample more than this minimum recommended size to account for refusals and surveys that may be deemed incomplete or invalid. Some states stratify their samples by factors such as region, program, or funding source.
Incomplete surveys are those that have no valid responses in Section I or Section II.
Surveys are deemed invalid based on the standard data validation and cleaning procedure. A standard data validation and cleaning procedure is applied to returned surveys to identify inconsistent responses and responses noted by the surveyor to be inconsistent or the result of the respondent’s lack of understanding (see above paragraph for details). It should be noted that not all member states collect all of the data elements required to construct all of the proposed measures.
Ultimately, for each measure, the response rate is the number of valid responses to the underlying question. For composite measures, data are treated as missing following the protocols described in each measure-specific submission.
The NCI team offers many potential strategies for states to increase response rates, including designing the initial scheduling approach to ensure surveyors are emphasizing the importance of the survey and how states will use the data, producing resources to let people and families know in advance that they may be selected to participate, sharing the previous years’ data in accessible and user-friendly formats, ensuring case managers and staff are aware and on-board with the survey, and can help prepare the participant, and more. Surveyors are flexible in the time and place where the survey is conducted.
For each measure in the instrument, if the sample size of valid responses from the accountable entity is 20 or below, the data are not analyzed or reported at the accountable entity level for confidentiality protection.
Supplemental Attachment
Point of Contact
NCI® and National Core Indicators® are registered trademarks of the NASDDDS and HSRI. The NCI measures and specifications were developed by and are owned by the National Association of State Directors of Developmental Disabilities Services (NASDDDS) and Human Services Research Institute (HSRI). NASDDDS and HSRI hold a copyright on all materials associated with the NCI measures and specifications and may rescind or alter these measures and specifications at any time. Users of the NCI measures and specifications shall not have the right to alter, enhance, or otherwise modify the NCI measures and specifications or associated materials. Anyone desiring to use or reproduce the contents of reports, inclusive of data results, without modification for a non-commercial purpose, may do so without obtaining approval from NCI. The use or reproduction of NCI survey instruments and questions requires prior approval by the NASDDDS and HSRI. All commercial uses or requests for alteration of the measures and specifications must be approved by NASDDDS/HSRI and are subject to a license at the discretion of NASDDDS/HSRI. NCI measures and specifications are not clinical or disability services guidelines, do not establish a standard of medical care, nor a standard for disability services and are not intended or tested for all potential applications.
The measures and specifications are provided “as is” without warranty of any kind. NASDDDS and HSRI make no representations, warranties, or endorsements about the suitability or utility of any product, test, or protocol identified as deriving from or based on an NCI measure or specification. NCI also makes no representations, warranties, or endorsements about the quality of any agency of a state, contractor of a state agency, or other organization who uses, applies, or reports NCI performance measures. NASDDDS/HSRI has no liability to anyone who relies on NCI measures and specifications or data reflective of performance under such measures and specifications.
Henan Li
Cambridge, MA
United States
Henan Li
Human Services Research Institute
Cambridge, MA
United States
Importance
Evidence
The NCI-IDD® IPS collects data from people receiving HCBS from state developmental disability programs about their services, including whether they are person-centered and reflect individual goals and needs. Person-centered service planning is an evidence-based practice (Chong and Caldwell, 2023; Isvan, Bonardi and Hiersteiner, 2023) required in Medicaid HCBS programs. Feedback on the extent to which public developmental disability programs are meeting individual goals and needs across a range of valued outcomes such as employment, functioning, and social connectedness enables states to monitor and address program efficacy and quality, though targeted quality improvement initiatives. It also supports assessing the value these systems are realizing from their investments.
The high level of NCI-IDD adoption and robust response rates are evidence of the value placed by service users and program officials on the measures and their importance. Further, NCI-IDD measures, including those in this submission, align with the 2016 HCBS Quality Framework (National Quality Forum, 2016) and selected NCI-IDD measures have been included in Centers for Medicare & Medicaid national reporting requirements for HCBS programs.
References
Chong, N. and Caldwell, J. (2023) The associations between person-centered planning and person-reported outcomes in home- and community-based services Innovation in Aging https://doi.org/10.1093/geroni/igad104.0808
CMCS (2024) MFP Grant Note: Note to Money Follows the Person (MFP) Demonstration Grant Recipients: Updates to the Home and Community-Based Services (HCBS) Quality Measure Set (QMS) Reporting Requirements for the MFP Demonstration. Retrieved from MFP Supplemental Services Notice
Isvan, N., Bonardi, A., & Hiersteiner, D. (2023). Effects of person-centered 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. Journal of Intellectual Disability Research, doi: 10.1111/jir. 13015. https://onlinelibrary.wiley.com/doi/10.1111/jir.13015
National Quality Forum. (2016). Quality in Home and Services to Support Community Living: Addressing Gaps in Performance Measurement. Washington, DC. Retrieved from https://clpc.ucsf.edu/sites/clpc.ucsf.edu/files/HCBS_Final_Report.pdf
A lack of social connectedness is associated with adverse health outcomes for people receiving HCBS (Crowe et al., 2021; Park et al., 2020). People with disabilities are more likely to experience loneliness and social isolation, which is associated with lower personal wellbeing (Emerson et al., 2021). The COVID-19 public health emergency had a disproportionate impact on social participation among people with disabilities (Kersey, 2022), underscoring the need for supports to access community resources and strengthen social connections.
Person-centered service planning, which includes developing service plans around individual goals such as building relationships, is an evidence-based practice that can increase community participation (Chong and Caldwell, 2023). Socially inclusive community participation is strongly associated with better friendship outcomes for people with IDD (Standcliffe, Pettingell, Houseworth, and Ticha, 2023).
References
Chong, N. and Caldwell, J. (2023) The associations between person-centered planning and person-reported outcomes in home- and community-based services Innovation in Aging https://doi.org/10.1093/geroni/igad104.0808
Crowe, C. L., Domingue, B. W., Graf, G. H., Keyes, K. M., Kwon, D., & Belsky, D. W. (2021). Associations of loneliness and social isolation with health span and life span in the US Health and Retirement Study. The Journals of Gerontology: Series A, 76(11), 1997-2006. DOI: 10.1093/gerona/glab128
Emerson, E., Fortune, N., Llewellyn, G., & Stancliffe, R. (2021). Loneliness, social support, social isolation and wellbeing among working age adults with and without disability: Cross-sectional study. Disability and health journal, 14(1), doi: 10.1016/j.dhjo.2020.100965
Kersey, J. (2022). Experiences of social isolation among people with disabilities during the COVID-19 pandemic. Archives of physical medicine and rehabilitation, 103(12), e46-e47. doi: 10.1016/j.apmr.2022.08.544
Park, C., Majeed, A., Gill, H., Tamura, J., Ho, R. C., Mansur, R. B., Nasri, F., Lee, Y., Rosenblat, J., Wong, E. and McIntyre, R. S. (2020). The effect of loneliness on distinct health outcomes: a comprehensive review and meta-analysis. Psychiatry research, 294, 113514. DOI: 10.1016/j.psychres.2020.113514
Stancliffe, R., Pettingell, S., Houseworth, J. and Ticha, R. (2023) Participation and companions for socially inclusive community activities by U.S. adults with intellectual and developmental disabilities Intellectual and Developmental Disabilities 61(4), 326-344 doi: 10.1352/1934-9556-61.4.326
Measure Impact
Various groups of interested parties have been involved in efforts to identify quality measures for HCBS services, and the resulting measures have included reference to NCI measures, NCI concepts or specific NCI measures themselves. The inclusion of NCI measures in frameworks and measure development that relied heavily on stakeholder input demonstrates the importance of NCI measures to the target population.
For example, priorities defined by the target population and other stakeholders were brought forward through expert panelists who came together to establish the NQF framework for HCBS quality described earlier in this submission. A 2015 committee of 18 people including individuals with disabilities and caregivers, and seven Federal Advisors, developed this framework for assessing HCBS quality that comprises 11 domains (National Quality Forum, 2016).
Beyond inclusion in the NQF framework itself, evaluation and psychometric testing of the framework further demonstrated that concepts measured in NCI are valued by the target population. Researchers at University of Minnesota’s Rehabilitation Research and Training Center on Outcome Measures conducted a study to establish the content and social validity of the NQF HCBS Quality Framework with stakeholders. As described in their research center’s brief: “Involving Stakeholders to address challenges in HCBS Measure Development,” this was accomplished through a Participatory Planning and Decision-Making (PPDM) process. The PPDM process included meeting with all stakeholder groups and providing them with an opportunity to evaluate the NQF framework, add to it, and stipulate which personal outcomes and service characteristics were most important to measure. To obtain a nationally representative sample, PPDM groups were conducted across the country with each stakeholder group which included people with intellectual and developmental disabilities, mental health conditions, traumatic brain injury, physical disabilities, and a variety of age-related conditions.
Additional focus groups were organized for family members, HCBS support providers, and groups of public managers. The research center’s brief: “Involving Stakeholders to address challenges in HCBS Measure Development” does not specify the number of people included in the stakeholder groups.
Overall, results from PPDM groups conducted by the University of Minnesota indicated a high degree of stakeholder support for the content of the NQF HCBS Quality Framework, further validating the framework to support quality improvement work. Stakeholders prioritized measures of Person-Centered Planning and Coordination, Choice and Control, and Human and Legal Rights.
Stakeholders in the study did provide input resulting in recommendations for number of revisions or additions to the NQF Quality Framework. These included: (1) adding within the broad community inclusion domain a subdomain focused on access to and quality of transportation; (2) the addition of a stand-alone domain for employment; and (3) a greater focus on the self-determination of people with disabilities rather than the degree of choice and control they experience.
The NCI-IDD measures being submitted are entirely responsive to priorities identified by the stakeholders through this study. Measures of choice and control which are submitted can be viewed as core elements that are supportive of self-determination, as detailed in the logic model section above.
Some measures from this instrument are also part of the Centers for Medicare & Medicaid Services (CMS) HCBS Quality Measure Set QMS). To create the HCBS QMS, CMS published an RFI to solicit public comment from stakeholders on a draft set of quality measures. A goal of this stakeholder engagement was to ensure that the resulting measure set included measures that were important to and important for people receiving services. “Since releasing the RFI, CMS has also engaged with a broad range of stakeholders, including states, managed care plans, consumer advocates, quality measurement experts, researchers, and other federal agencies, to receive additional feedback on the draft measure set and on opportunities to support states with using the measure set, including to meet quality measurement and reporting requirements under various Medicaid HCBS authorities (Page 4).” The number of stakeholders consulted for this work is not specified. The following NCI-IDD measures submitted in this package are included as part of the HCBS QMS:
- Social Connectedness (3622-4-m)
- Satisfaction with Community Inclusion (3622-3-m)
Several states, including California and Kentucky, review NCI-IDD results with statewide groups of service users and families. For example, the Kentucky DD Services Quality Improvement Committee, made up of people receiving services, tracks performance of NCI-IDD measures across 3-year cycles. There were 11 members of the 2024 Quality Improvement Committee including people with disabilities, caregivers and other experts. They identify areas of priority for service users and produce a report. The 2024 Committee Recommendations Report includes priorities based on several measures being submitted in this maintenance package, such as community inclusion, relationships, and employment. The 2024 Committee Recommendations include specific interventions needed to accomplish improvement goals including enhanced information dissemination and service coordinator training.
References:
National Core Indicators. (2024). 2023-24 National Report: Relationships Retrieved from 2023-24 NCI-IDD Relationships National Report
Kentucky National Core Indicators. (2024). Recommendations Report Retrieved from Kentucky National Core Indicators Recommendation Report 2024
National Quality Forum. (2016). Quality in Home and Services to Support Community Living: Addressing Gaps in Performance Measurement. Washington, DC. Retrieved from https://clpc.ucsf.edu/sites/clpc.ucsf.edu/files/HCBS_Final_Report.pdf
Rehabilitation Research and Training Center on HCBS Outcome Measurement (RTC/OM). (2020). Brief 1: Involving stakeholders to address challenges in HCBS measure development: Toward person-centered measurement [Research Brief]. Institute on Community Integration, University of Minnesota-Twin Cities. https://publications.ici.umn.edu/rtcom/briefs/brief-one-involving-stakeholders-to-address-challenges-in-hcbs-mesure-development
NCI-IDD data support the importance of social connectedness to those receiving services. NCI-IDD In Person Survey data from 2023-24 demonstrate that an average of 55% of respondents report wanting or maybe wanting help to make friends or keep in contact with friends (N of those with a valid response to the question=9499). State averages range from 71% of respondents in one state, to 21% of respondents in another state. This shows that among those receiving state DD system services, there is strong demand for friendships which points to a desire for connection, the absence of which can result in feelings of loneliness.
This measure is reflective of the Community Inclusion domain that was identified by stakeholders and expert panelists who came together to establish the NQF framework for HCBS quality. The development of the NQF framework included robust input from groups of various interested parties. A 2015 committee of 18 people including individuals with disabilities, caregivers, and seven Federal Advisors, developed this framework for assessing HCBS quality that comprises 11 domains (National Quality Forum, 2016).Additional information on the development process is available at the instrument level.
Researchers at University of Minnesota’s Rehabilitation Research and Training Center on Outcome Measures conducted a study to establish the content and social validity of the NQF Conceptual Framework for HCBS Outcome Measurement with stakeholders. As described in their research center’s brief Involving Stakeholders to address challenges in HCBS Measure Development, this was accomplished through a Participatory Planning and Decision-Making (PPDM) process. The PPDM process included meeting with all stakeholder groups and providing them with an opportunity to evaluate the NQF framework, add to it, and stipulate which personal outcomes and service characteristics were most important to measure.
The research center’s brief: “Involving Stakeholders to address challenges in HCBS Measure Development” does not specify the number of people included in the stakeholder groups.
Additional information on the UMN brief and development process is available at the instrument level.
This measure is also part of the Centers for Medicare & Medicaid Services (CMS) HCBS Quality Measure Set. To create the HCBS QMS, CMS published an RFI to solicit public comment from stakeholders on a draft set of quality measures. A goal of this stakeholder engagement was to ensure that the resulting measure set included measures that were important to and important for people receiving services. “Since releasing the RFI, CMS has also engaged with a broad range of stakeholders, including states, managed care plans, consumer advocates, quality measurement experts, researchers, and other federal agencies, to receive additional feedback on the draft measure set and on opportunities to support states with using the measure set, including to meet quality measurement and reporting requirements under various Medicaid HCBS authorities (Page 4).”
References:
National Core Indicators. (2024). 2023-24 National Report: Relationships Retrieved from 2023-24 NCI-IDD Relationships National Report
CMCS (2024) State Medicaid Director Letter Retrieved from HCBS Measure Set SMDL
National Quality Forum. (2016). Quality in Home and Services to Support Community Living: Addressing Gaps in Performance Measurement. Washington, DC. Retrieved from https://clpc.ucsf.edu/sites/clpc.ucsf.edu/files/HCBS_Final_Report.pdf
Rehabilitation Research and Training Center on HCBS Outcome Measurement (RTC/OM). (2020). Brief 1: Involving stakeholders to address challenges in HCBS measure development: Toward person-centered measurement [Research Brief]. Institute on Community Integration, University of Minnesota-Twin Cities. https://publications.ici.umn.edu/rtcom/briefs/brief-one-involving-stakeholders-to-address-challenges-in-hcbs-mesure-development
Performance Gap
The data used to create Table 1 come from the 2024-2025 NCI In-Person Survey, based on the survey item, “Do you ever feel lonely?” Response options are: Often, Sometimes, No. The mean performance score represents the average percentage of survey respondents in the state with valid responses who did not select the “Often” option. The overall mean for the measure is 87%, ranging from 81% to 98% across the 39 states with valid data for this item. The measure score would be expected to improve with enhanced efforts to combat social isolation among people with IDD. The participating states have generally favorable scores for this measure but there is room for improvement. Given the negative impact of social isolation on mental and physical health, states should identify the categories of participants most likely to report feeling lonely often, and provide them with social integration supports tailored to their specific cultural and other characteristics.
Table1. Mean Performance Score by Decile, Accountable Entity, 2024-2025
Overall | Min | Decile 1 | Decile 2 | Decile 3 | Decile 4 | Decile 5 | Decile 6 | Decile 7 | Decile 8 | Decile 9 | Decile 10 | Max | |
| Mean Performance Score | 87.3% | 81.4% | 82.7% | 84.7% | 85.8% | 86.8% | 87.8% | 88.3% | 89.5% | 90.2% | 91.3% | 95.2% | 98.3% |
| N of Entities | 39 | 1 | 4 | 4 | 4 | 4 | 4 | 3 | 4 | 4 | 4 | 4 | 1 |
| N of Persons / Encounters / Episodes | 17,157 | 553 | 1,766 | 1,682 | 1,202 | 6,038 | 1,167 | 826 | 1,293 | 1,345 | 1,090 | 748 | 173 |
Care Gaps
Closing Care Gaps
This domain is optional for the Spring 2026 cycle
Feasibility
Feasibility
The Online Data Entry Survey Application (ODESA) is a web-based platform that all participating National Core Indicators (NCI) states use to enter survey data for the NCI Intellectual and Developmental Disabilities (NCI-IDD) (including data for the measures included in this package).
Every year, ODESA is updated to reflect the current year’s survey tools. The ODESA application resides on a secure server and requires unique login information for each user. ODESA contains built-in logic checks and skip patterns to standardize data entry across states and across data enterers. In addition to its data entry functions, the system includes administrative features to allow states to manage users and groups, track progress, and download the state’s survey data.
Data are collected yearly, and structured state data exports are available to participating states throughout the data cycle. Cleaned state datasets in Excel, .csv and/or SPSS format are available upon request after the cycle’s standard reports are released publicly. National datasets, with the state names deidentified, are available to researchers upon approval of a proposal and payment of a fee.
Datasets may include missing data due to skip patterns (which may render a question not-applicable to a particular respondent based on their answer to a previous question), unavailable data (in the case of data that are collected in the Background Information section) or the respondent’s inability to, or desire not to respond to a specific question. Information on missing data on specific measures included in this package is included in each measure template.
NCI collects data on subjective experiences and the data reflect the individual’s feelings and experiences, therefore these data cannot be “inaccurate”. Data inaccuracies can potentially result for questions in Section II if a proxy respondent’s responses do not reflect the individual’s true feelings, or, for questions in both sections, if the individual (or proxy) do not correctly interpret the question. Data inaccuracies can also result if the data from the Background Information section are not gathered reliably.
The NCI In Person Survey is implemented in many states and has been in use for many years. As a result, inaccuracies at the state level can often be identified comparing data to previous years and comparing to other states’ data.
There have not been any changes to the instrument or measure specifications since initial submission.
NCI-IDD data collection at the state level occurs in the context of an agreement between states that participate in the National Core Indicators, the National Association of State Directors of Developmental Disability Services (NASDDDS) and Human Services Research Institute (HSRI). An annual NCI participation fee is required to participate in the NCI-IDD data collection. For the 2025-26 data cycle, this fee was $19,300.
Along with the participation fee, states sign an agreement. As part of the agreement, NASDDDS and HSRI commit to being responsible for various NCI activities such as
- Program Direction and Management: Provide general oversight of NCI-IDD activities. Prepare, maintain, and ensure industry standard security protocols for the Online Data Entry Survey Application system (ODESA 2.0).
- Technical Assistance: Furnish a wide range of technical assistance to support states to administer NCI and use NCI data for performance measurement and systems improvement.
- Data Analysis, Management and Reporting: Prepare and distribute reports from the national data sets annually.
As part of the agreement, states commit to being responsible for various NCI activities and the costs incurred therein, such as general operational tasks necessary to gather and enter NCI-IDD data into the NCI data collection portal, staying current with NCI-IDD protocols and undertaking the procedures necessary to meet the national program requirements.
States may choose to hire a vendor to administer the NCI-IDD IPS survey or to use their own staff to collect data. NCI is not involved in payment discussions between states and vendors, and we have no information about the costs of these arrangements.
The NCI-IDD IPS dataset, which includes the measures in this submission, does not include any PHI (Protected Health Information) or PII (Personally Identifiable Information). Data are maintained in a secure data collection platform. Data are de-identified and minimum threshold reporting requirements are in place. Participation in an NCI-IDD interview is voluntary.
The measure specifications have not changed. This was done to maintain consistency with the original specifications and ensure results remain comparable. There has also been no feedback or evidence suggesting a need for changes, such as concerns about burden or requests for revisions. As a result, the existing measure specifications were retained without change.
Proprietary Information
As noted in 4.1b above, an annual NCI participation fee is required to participate in the NCI-IDD data collection. For the 2025-26 data cycle, this fee was $19,300. Participating state agencies own their state’s data.
If a researcher would like to use NCI data for research, there is a fee required for access to the National datasets. Here is the basic fee framework:
Basic fee framework:
Undergraduate/Graduate students (unfunded single study, single survey type) Each additional survey type will cost $600 Support for IRB applications may increase fees. | $600 |
Undergraduate/Graduate students (funded research study, single study, single survey type) Each additional survey type will cost $600 Support for IRB applications may increase fees. | $1,500 |
Academic Institutions (participation in funding application, IRB as necessary, ongoing communication, single study, single survey type) Support for IRB applications may increase fees. This level of access will require additional discussion with the NCI team around terms, conditions and fees for additional surveys and any add-on analyses. Additional data proposal forms may be required if additional research is conducted beyond the aims expressed in this proposal, or if additional team members access the survey tools. | $12,500 and up |
Other External Organizations Terms, conditions and fees are established based on review of proposed study and extent of support required | Case-by-case |
Scientific Acceptability
Testing Data
NCI-IDD In-Person Survey 2024-25 dataset with 39 participating states and 30,888 survey respondents in total.
July 2024 to June 2025.
None.
| Measured Entities | Number of NCI-IDD IPS Respondents | Type |
| Alabama | 601 | State |
| Arizona | 404 | State |
| Arkansas | 409 | State |
| California | 8614 | State |
| Colorado | 1025 | State |
| Connecticut | 611 | State |
| Delaware | 405 | State |
| District of Columbia | 374 | State |
| Georgia | 411 | State |
| Hawaii | 356 | State |
| Illinois | 417 | State |
| Indiana | 844 | State |
| Kansas | 1196 | State |
| Kentucky | 423 | State |
| Louisiana | 458 | State |
| Maryland | 408 | State |
| Michigan | 653 | State |
| Minnesota | 385 | State |
| Missouri | 403 | State |
| Montana | 468 | State |
| Nebraska | 420 | State |
| Nevada | 496 | State |
| New Hampshire | 360 | State |
| New Jersey | 505 | State |
| New York | 1750 | State |
| North Carolina | 451 | State |
| North Dakota | 426 | State |
| Ohio | 571 | State |
| Oklahoma | 396 | State |
| Oregon | 415 | State |
| Pennsylvania | 882 | State |
| South Carolina | 821 | State |
| South Dakota | 349 | State |
| Texas | 1246 | State |
| Utah | 366 | State |
| Virginia | 813 | State |
| Washington | 410 | State |
| Wisconsin | 944 | State |
| Wyoming | 402 | State |
The unit of analysis is the individual respondent. Eligible units are adults with intellectual or developmental disabilities who receive Home- and Community-Based Services and who are able to participate in the NCI In-Person Survey, either independently or with needed communication supports. Individuals may have a range of disabilities, functional abilities, service types, and living arrangements, reflecting the diversity of the HCBS population served by participating state systems.
Reliability
These measures have not been modified since original endorsement.
Please see 3622-ReliabilityMethodology_Binary-Spring2026.docx
Total Entities: 39
Overall Mean Performance Score: 87.3%
Overall IUR: 0.774
IUR Range: 0.380 (minimum) to 0.978 (maximum)
Median Split-half ICC: 0.725 ± SD 0.085 (CI 0.479 - 0.810)
Please see Tables 2a and 2b as well as 5.2.3a attachment for details.
Table 2a. Reliability by Denominator Decile, Accountable Entity, 2024-2025
Overall | Min | Decile 1 | Decile 2 | Decile 3 | Decile 4 | Decile 5 | Decile 6 | Decile 7 | Decile 8 | Decile 9 | Decile 10 | Max | |
| Reliability | 0.774 | 0.380 | 0.520 | 0.612 | 0.645 | 0.664 | 0.677 | 0.703 | 0.733 | 0.759 | 0.801 | 0.885 | 0.978 |
| Mean Performance Score | 87.3% | 95.9% | 91.2% | 86.9% | 89.3% | 87.7% | 91.8% | 89.5% | 86.7% | 86.5% | 89.2% | 83.6% | 86.8% |
| N of Entities | 39 | 1 | 4 | 4 | 4 | 4 | 4 | 3 | 4 | 4 | 4 | 4 | 1 |
| N of Persons / Encounters / Episodes | 17,157 | 74 | 548 | 757 | 869 | 945 | 1,005 | 851 | 1,320 | 1,508 | 1,928 | 7,426 | 5,234 |
Table 2b. Reliability by Decile, Accountable Entity Level, 2024-2025
Overall | Min | Decile 1 | Decile 2 | Decile 3 | Decile 4 | Decile 5 | Decile 6 | Decile 7 | Decile 8 | Decile 9 | Decile 10 | Max | |
| Reliability (IUR) | 0.774 | 0.380 | 0.520 | 0.612 | 0.645 | 0.664 | 0.677 | 0.703 | 0.733 | 0.759 | 0.801 | 0.885 | 0.978 |
The overall IUR indicates that 77% of the variability in the measure is attributable to differences between states rather than to random noise. There is considerable variation across states in reliability, ranging from 0.52 in the first decile to 0.86 in the tenth decile (by denominator). Approximately half of the states, comprising three quarters of the total sample of persons, have reliability at or above the threshold of 0.7. The single state with reliability lower than 0.4.has the smallest sample size among the 39 states whose data are used in constructing Table 2b. All other state-level sample sizes are at least over 100 and most are over 200, while this state has a sample size of 74. It is likely that the low sample size is impacting the state-level reliability measure in this case. On the whole, these results suggest that the measure is fairly successful in distinguishing between high- and low-performing states in a sufficient proportion of the test sample.
Validity
These measures have not been modified since original endorsement.
We expected Social Connectedness, calculated as the percentage of respondents who do not feel lonely often, to be positively correlated with having friends outside of family and paid staff, and frequently going out and engaging in community activities. We further hypothesized that being satisfied with the level of community inclusion would have a stronger correlation than the measure of community inclusion, since satisfaction is a more proximate determinant of feeling socially connected.
To test these hypotheses, we calculated correlations between this measure and the following measures:
- Community Inclusion Scale. This is a composite of four NCI survey items of the form, “During the past month, how many times did you…[go shopping, go out on errands, go out for entertainment, go out to a café or restaurant]. The four response options are: Not at all, once or twice, 3 or 4 times, 5 or more times. This measure addresses three of the five items that comprise the Satisfaction with Community Inclusion measure; therefore, we expected some shared mechanisms. However, it doesn’t address the individual desirability of the activities, so we expected that the correlation would be limited.
- Satisfaction With Community Inclusion. This is a composite of four NCI survey items of the form, “Think about how often you went out for [shopping, entertainment, eating out, participating in religious/spiritual activities]. Would you like to do this more, less, or the same amount as now?” These were combined with an item about whether or not respondents who did not belong to a community group would like to do so. Responses indicating that the person was satisfied with the level of engagement were averaged to create the measure.
- Has Friends. This is a measure of the percentage of the state’s survey respondents who reported that they had friends outside their family and staff.
After testing for and ruling out violations of distributional assumption, we calculated Pearson correlation coefficients. We conducted one-tailed significance tests of the correlation coefficients in line with the nature of the hypothesized associations.
Table 5.3.4. Correlations between the Social Connectedness Measure and Hypothesized Correlates
| Hypothesized Correlate | N of States | Pearson Correlation (p-value) |
| Community Inclusion Scale | 39 | 0.156 (0.172) |
| Satisfaction With Community Inclusion | 39 | 0.692 (<0.001) |
| Has Friends | 39 | 0.201 (0.110) |
The results support our hypothesis: Satisfaction with community inclusion has a stronger positive correlation than community inclusion, and having friends outside one’s family and staff has a positive correlation. These finding support the measure’s construct validity.
The magnitude and significance level of two of the correlations are lower than the expected thresholds for establishing empirical validity. It should be noted, however, that the thresholds are more realistic for clinical indicators measured with less noise than is the case for self-reported LTSS experiences based on personal judgment. The sample size of 39 states is also too small to provide sufficient power to detect significant correlations. These results should be regarded with these caveats in mind.
Risk Adjustment
There is an ongoing discussion about the pros and cons of risk adjustment for social and functional characteristics. While it is a useful tool in addressing case mix differences among providers in the context of value-based payment systems, authors have also pointed out that it raises concerns about the likelihood that it may mask meaningful disparities in the quality of care that are within the provider’s ability to address (ASPE Report to Congress, 2016; Joynt et al., 2017; NQF, 2021). To a large extent, the decision to risk-adjust for socioeconomic and functional factors depends on the purpose of the measure. For value-based payment purposes, adjustment may, indeed, reward providers with high-risk clients. However, if the purpose is continuous quality improvement, it may be preferable to use unadjusted measures that reveal, rather than mask disparities in the quality of care, this opening the way for improvements.
The purpose of this measure is to inform state DD agencies of the extent to which their services are providing positive experiences for participants. This information is used by officials to make adjustments to the state’s service system. Ideally, services should be tailored to provide equally positive experiences for all participants, regardless of their level of support need. Adjusting for case mix could mask the failure of the system to tailor services to certain categories of service users. In other words, it would reduce the measure’s usefulness to support continuous quality improvement and to address disparities in service experiences. We do report the measure separately for groups in different living arrangements to provide state planners with additional information about different experiences of services received in different settings. This could be regarded as a type of measure stratification.
References:
U.S. Department of Health and Human Services, Office of the Assistant Secretary for Planning and Evaluation. (2016). Report to Congress: Social Risk Factors and Performance Under Medicare’s Value-Based Purchasing Programs. https://aspe.hhs.gov/reports/report-congress-social-risk-factors-performance-under-medicares-value-based-purchasing-programs
Joynt, K. E., Zuckerman, R., & Epstein, A. M. (2017). Social risk factors and performance under Medicare’s value-based purchasing programs. Circulation: Cardiovascular Quality and Outcomes, 10(5), e003587. https://doi.org/10.1161/CIRCOUTCOMES.117.003587
National Quality Forum. (2021). Developing and testing risk adjustment models for social and functional status-related risk within healthcare performance measurement: Draft technical guidance, version 2. https://www.aahd.us/wp-content/uploads/2021/07/NQFRiskAdjustment-06172021DraftRept-SocialFunctionalStatus-07192021_CommentDeadline.pdf
Use & Usability
Use
The Centers for Medicare & Medicaid Services’ Home‑ and Community‑Based Services (HCBS) Quality Measure Set (QMS) is a national framework for standardized quality reporting in Medicaid‑funded HCBS programs. CMS sponsors the HCBS QMS to promote consistent measurement, transparency, and accountability across state HCBS delivery systems, with a particular emphasis on person‑centered outcomes, access, health and safety, and equity for individuals receiving services in home‑ and community‑based settings.
The HCBS Quality Measure Set is national in scope and applies to all state Medicaid agencies administering HCBS through waivers or state plan authorities. Participation is mandatory under the Ensuring Access to Medicaid Services final rule, with phased‑in reporting requirements. The percentage of accountable entities and individuals included is expected to increase as states implement required reporting, beginning with Medicaid HCBS populations specified in CMS guidance.
Measures are applied at the state system level and are used to assess performance of Medicaid HCBS programs overall rather than individual providers. The applicable care setting is home‑ and community‑based services delivered through Medicaid HCBS waivers and state plan options.
NCI is used by the State of California as part of its statewide Quality Assessment Program for developmental disabilities services, administered by the California Department of Developmental Services in partnership with the State Council on Developmental Disabilities and Human Services Research Institute. The program uses National Core Indicators measures as a standardized tool for assessing outcomes experienced by individuals receiving services through California’s developmental disabilities system. The purpose of the program is to support oversight, policy development, and continuous quality improvement across the state’s developmental disabilities service system. NCI measures are used to evaluate person‑reported outcomes related to community inclusion, choice, rights, health, safety, and service coordination, and to identify areas for system improvement at both the statewide and regional levels.
The program is statewide in scope and includes all regional centers responsible for coordinating developmental disabilities services in California. Data collection covers a representative sample of adults receiving publicly funded developmental disabilities services, with the goal of reflecting experiences across the entire service system.
Measures are analyzed and reported at the statewide and regional center levels. The applicable care setting includes home‑ and community‑based services provided through California’s developmental disabilities system.
The purpose of the Adult Core Set is to provide CMS and states with a consistent set of indicators that reflect priority areas in Medicaid quality, including access, experience of care, and outcomes for adult beneficiaries. Measures derived from National Core Indicators are used to address experience‑of‑care and person‑centered outcome domains for adults receiving long‑term services and supports through Medicaid, complementing clinical and administrative measures within the set.
The Adult Core Set is national in scope and applies to state Medicaid programs. While reporting has historically been voluntary, CMS has expanded required reporting for Adult Core Set measures over time, increasing participation across states. The population represented includes adult Medicaid beneficiaries, including adults receiving HCBS, as defined by CMS reporting specifications.
Measures are reported at the state Medicaid program level and used for system‑level assessment rather than provider‑level accountability. The relevant care setting for this measure within the Adult Core Set context is Medicaid‑funded home‑ and community‑based services.
The purpose of Pennsylvania’s use of NCI measures is to support statewide quality management, program oversight, and continuous quality improvement. NCI data are used to assess system performance in areas such as community inclusion, employment, choice and self‑determination, health, safety, and service coordination, and to inform programmatic decisions, policy development, and targeted improvement initiatives within ODP‑administered services.
The program operates statewide and includes individuals receiving services through Pennsylvania’s intellectual disability and autism service system. Data collection reflects a representative sample of adults served by the system, allowing for analysis of outcomes across the Commonwealth and over time as part of ongoing system monitoring.
Measures are used and reported at the state program level and, where applicable, at sub‑state or provider network levels to support internal analysis and quality improvement. The applicable care setting is home‑ and community‑based services delivered through Pennsylvania’s developmental disabilities service system.
The Employment First Collaborative was developed in response to findings from National Core Indicators for Intellectual and Developmental Disabilities (NCI-IDD) data showing low rates of individuals who wanted employment but did not have employment goals included in their service plans. The initiative aimed to increase competitive integrated employment opportunities for individuals with intellectual and developmental disabilities receiving HCBS services in Missouri.
The initiative was implemented statewide in Missouri through the developmental disabilities service system. It targeted HCBS providers, care coordinators, and individuals receiving developmental disability services.
Level of analysis: State developmental disabilities system
Care setting:
- Home- and community-based services (HCBS)
- Community employment and vocational support settings
Empowering Through Employment was created to expand employment supports and improve employment outcomes for individuals with intellectual and developmental disabilities. The initiative built on NCI-IDD findings and Missouri’s Employment First efforts by promoting employment authorizations and employment-focused service planning. Missouri reported significant increases in service plans containing employment authorizations between 2016 and 2020.
The initiative operated statewide across Missouri’s developmental disabilities HCBS system. It involved individuals receiving HCBS services and provider organizations participating in employment-related supports.
Level of analysis: State developmental disabilities system
Care setting:
- Home- and community-based services (HCBS)
- Community employment and vocational support settings
The primary target population includes adults (18+) who receive publicly funded long-term services and supports from their state ID/DD service systems.
The accountable entities are state ID/ DD service systems.
The care settings relevant to the measures are primarily home- and community-based settings. The measures may also capture services delivered in residential settings, such as group homes, supported living arrangements, intermediate care facilities for individuals with intellectual disabilities (ICFs/IID), and nursing facilities. The measures are not intended to assess episodic inpatient care.
Across the measures derived from this instrument, social risk factors are addressed primarily at the measure level through stratification. All IDMs are stratified to facilitate fair and meaningful comparisons across specific residential setting categories. For a small subset of measures, an additional case mix adjustment is applied using a defined risk model to level the playing field where outcomes are especially sensitive to underlying differences in individual support needs. For the remaining measures, adjustment is intentionally not applied, reflecting a person‑centered measurement philosophy in which service systems are expected to align supports with individuals’ needs.
These measures are best suited for use in a state-level quality accountability and improvement program for publicly funded long-term services and supports (LTSS) for individuals with intellectual and developmental disabilities (ID/DD). The measures align with system-level accountability frameworks that monitor and compare performance across states or within-state systems over time. Accordingly, the measures are most appropriate for public reporting, federal and state oversight (e.g., HCBS quality assurance). These measures are not appropriate for provider-level accountability because 1) the outcomes are shaped by system-level policies, care coordination, and individuals’ long-term service environments, which cannot be validly or fairly attributed to a single provider, and 2) these measures are based on sampling strategies designed for state-level estimates rather than provider-level analyses, particularly given that individuals typically receive services from multiple provider types.
Usability
As a system performance measurement tool, the NCI-IDD In Person Survey (IPS) was designed to support state development disabilities (DD) service systems (“states”) to benchmark, set goals, and compare to the NCI-IDD average and other systems’ performance. Federal partners such as the Centers for Medicare & Medicaid Services (CMS) and The Administration on Community Living (ACL) explicitly recognize NCI as a core dataset for managing, funding, and improving DD systems. To achieve those goals, states can take the following steps:
- Systematically analyze IPS results across multiple years to identify trends and priorities for improvement.
- This can be done through meetings of a quality improvement committee and should include the input of service users and other interested parties. Their input can drive decisions about what an ideal system looks like and where targeted improvement efforts might be focused.
- This can include comparing state results to those of other states, and the NCI-IDD average.
- Once priority areas have been identified, states should work to translate findings into specific goals tied to policy or program design such as waiver strategy, provider expectations, training requirements, or other areas.
- Plans should be made to set benchmarks to track improvement year to year, and review plans if benchmarks aren’t met.
- NCI results and the review of the results can be built into agency strategic plans, quality strategies, or legislative/budget justifications.
There are potential challenges related to using NCI data for system performance improvement.
- States may have limited resources and capacity to examine the breadth of NCI data and/or convene groups to review the data.
- For some NCI measures, there are not straightforward, easily accessible “levers to pull” to make improvements. It can take some time and thought to understand the drivers of some outcomes.
- Outcomes of policy/programmatic changes can take years to appear in the data.
- Necessary improvements may include actions from other agencies/areas of government and coordination can be challenging.
- Challenges around “owning” poor performance metrics.
However, these challenges can be mitigated by:
- Ensuring state staff working on NCI and the resulting performance improvement are dedicated, and work cross-agency with program, waiver and fiscal staff. This can ensure multiple perspectives and diverse ideas drive change.
- Examining NCI data in tandem with administrative and claims data to bolster findings and potentially target root causes.
- Setting smaller goals within larger goals to demonstrate improvement over time, as opposed to rapid results of policy changes.
- Making sure NCI is not framed or used as a “scorecard” but instead as a planning tool, or a “road sign” indicating areas for examination and improvement. This can encourage the use of NCI data to improve services, and not as referendum on the operations of the system.
One example of this process comes from Ohio.
Ohio noted in their NCI-IDD data that respondents were often not receiving routine dental care at the recommended intervals. The state examined Medicaid claims data to validate this finding and found that about two-thirds of NCI respondents did not have dental claim with Medicaid within the recommended timeframe. Further work led to the finding that there is a lack of Medicaid dental providers and some providers had waitlists approaching two years.
After convening a quality council and using data to bolster advocacy efforts, IDD considerations were included in the State of Ohio’s Oral Health Plan. This led to cross agency efforts such as:
- Funding for Ohio State’s Developmental and Intellectual Disabilities Dental Certificate Program for Community Providers for postgraduates.
- Enhanced Medicaid reimbursement rates, including a behavior management code for dentists.
- Working towards permitting Ohio’s primary care providers to use silver diamine fluoride for cavity management.
Beyond those described at the instrument level, here are some actions that the measured entity (state DD systems) can take to improve performance on this specific IDM.
This IDM is focused on ensuring social connectedness and that people are supported to reach social goals. The services should be aimed at supporting people to make social connections and helping people achieve their personal goals. To ensure this occurs, state DD systems can take several steps:
- System-wide, define “social connection” as a key quality of life component and mental health issue.
- One step to achieving this would be by explicitly listing “social connection” and “belonging” as a desired outcome in quality strategies and waiver goals.
- Another potential step would be to include “social connectedness” in any mental health surveillance or experience of care indicators
- Examining NCI-IDD data to identify populations who might be at higher risk of loneliness (for example, those with higher support needs or those who are older). Then develop targeted interventions for those populations.
- Ensure that, if a person has a goal related to connectedness, this goal is identified and included in their service plan. The state DD system can impact what is included in the plans in a few ways.
- This might include the inclusion of questions directed at assessing the presence of this goal in service planning paperwork and/or IT systems
- This will require that people receiving services know their options related to social connectedness and are able to communicate their goals effectively. This can include plain language resources, interpreters, trusted people included at service planning meetings.
- Ensure that, if the goal is present, it is translated into explicit service plan goals. This may mean breaking the goal down into steps, or benchmarks such as working on specific skills. These service plan goals should also include services that promote social interactions, like assistive technology, therapy or skills training. This might also include a focus on teaching and coaching instead of a goal of task completion. States can ensure this happens by implementing a process for service plan evaluation and review.
- Address systemic challenges with transportation or staff support, which might isolate people.
- Support providers and workforce to be aware of social inclusion goals and social connectedness strategies
There are some challenges that may inhibit this work:
- Loneliness and friendship are often seen as outside the purview of DD service systems.
- With resource constraints, case managers and providers and staff may see social connectedness as a “nice to have” as opposed to a critical part of service provision.
- Workforce challenges
- States may not trust NCI data on loneliness since loneliness is subjective and a relatively complex concept
Some of these challenges may be overcome:
- Ensure that providers, case managers, and state staff are aware of the links between loneliness and other negative outcomes.
- The workforce challenges are wide and systemic and extend beyond individual programs. States can make concerted efforts to stabilize the workforce.
- Strengthening person centered service planning and practices across the state.
- Using this IDM’s data to benchmark, guide and evaluate efforts to increase social connectedness for those who want it.
Here are some ways states have addressed social connectedness:
- Kentucky DD Services Quality Improvement Committee track performance on the measure of across 3-year cycles. The 2025 Committee Recommendations include specific interventions needed to accomplish community inclusion goals including enhanced information dissemination, ensuring providers comply with the CMS Settings Rule, and working with a group of waiver recipients and other interested parties to improve relationships and community inclusion.
- Massachusetts DDS has worked with the Arc of Massachusetts to develop Pathways to Friendship. Pathways to Friendship aims to address loneliness of people with disabilities through:
- Exploring the benefits of relationships between people with and without disabilities
- Providing information and resources to help individuals, families and community organizations engage in and sustain those relationships
- In 2020, The Virginia Department for Aging and Rehabilitative Services partnered with Virginia Commonwealth University, Virginia 2-1-1, and United Way Worldwide on a project to better serve Virginia residents’ social connections. The group won ACL's MENTAL Health Innovation Challenge to build the Social Health Connector which uses a person-centered virtual assessment to generate a customized social health connection plan for people with disabilities, older adults, and family caregivers. This personalized plan uses AI and machine learning examine individualized strengths and highlight local recommended resources for users in Virginia. After individuals complete the survey, they receive a customized social connection plan.
Each year, NCI has several methods to receive feedback on the survey.
- The NCI Annual Meeting brings together state representatives, people administering the survey, contractors and others to discuss survey implementation, troubleshoot challenges, examine how data are used and more.
- The NCI Annual Meeting allows states to discuss how they’ve used data and any achievements they’ve made related to NCI.
- Yearly training processes allow for direct feedback from surveyors on challenges or potential improvements,
- NCI holds office hours to allow those administering surveys at the state level to hear about innovations, changes or other areas of interest. States ask questions and provide feedback.
- Some states solicit feedback directly from people who respond to the survey. Survey administrators then raise any ideas and/or concerns to the NCI team.
Every 6 years, NCI rolls out a survey that has undergone a “revisions cycle.” This work, that spans several years, includes the gathering of extensive feedback from interested parties in the form of online surveys, focus groups, an Advisory group and user groups. The goals of these revisions cycles are to:
- Ensure the survey gathers information that is most relevant and timely for state systems
- Ensure the survey gathers data that will help state systems support people to achieve their goals
- Ensure the survey reflects the latest research and innovations
- Ensure the survey reflects the feedback received through the above channels
Each year, NCI has several methods to receive feedback on the survey.
- The NCI Annual Meeting brings together state representatives, people administering the survey, contractors and others to discuss survey implementation, troubleshoot challenges, examine how data are used and more.
- The NCI Annual Meeting allows states to discuss how they’ve used data and any achievements they’ve made related to NCI.
- Yearly training processes allow for direct feedback from surveyors on challenges or potential improvements,
- NCI holds office hours to allow those administering surveys at the state level to hear about innovations, changes or other areas of interest. States ask questions and provide feedback.
- Some states solicit feedback directly from people who respond to the survey. Survey administrators then raise any ideas and/or concerns to the NCI team.
NCI has not received any specific feedback on this measure.
Updated guidance allowing remote surveying was added after a pilot study/implementation. This change helped address implementation challenges, particularly during COVID-19, by providing a flexible alternative to in-person surveying. No additional updates have been made since then, and there has been no feedback indicating further changes are needed.
This IDM has not been revised since its original endorsement.
We conducted trend analysis of the 32 state systems with reportable data in both 2022-23 and 2024-25. In a paired state-level comparison, we found that performance moved by -0.2
percentage points (87.3% vs 87.1%, p = .642); 15 state systems improved, 14 declined, and 3 were unchanged. These results suggest directional movement, but the change was not statistically significant.
These modest results are expected. Improvements often take many years to show up in survey-based quality measures. This is because:
- Change takes time to implement, especially at the system-level. Changes often require redesigns of workflows, training, cultural change and policy changes.
- People’s perception often takes time to change. Sometimes it takes many years to shift.
- Workforce challenges across the system can impact the ability to make changes, as can other external influences like social and economic stressors.
There have been no adverse or unexpected findings from the administration and reporting of the NCI-IDD® In-Person Survey.
There have been no unexpected findings related to this measure based on the data and time period reflected in this submission.
Comments
Staff Preliminary Assessment
CBE #3622-4 Staff Assessment
Importance
Strengths:
- The developers cite recent literature in which researchers found that a lack of social connectedness is associated with adverse health outcomes for people receiving home- and community-based services (HCBS). The developer also cites that individuals with disabilities are more prone to loneliness and social isolation, which is associated with lower personal wellbeing.
- Performance gaps exist with a range in scores from 81.4% to 98.3%, and a median of 87.8% across 39 participating states with ~17,000 individuals with intellectual and developmental disabilities (IDD).
Limitations:
- General information about the meaningfulness of HCBS measures to patients is provided. It is based on patient involvement in developing the National Quality Forum (NQF) Framework for HCBS quality in 2015.
- The developers did not specifically address the meaningfulness of the Social Connectedness measure with individuals with IDD.
Rationale:
- This maintenance measure is rated as “Met” for importance because developer cites recent evidence that social connectedness, facilitated through HCBS, can help reduce adverse health outcomes and improve personal wellbeing by reducing loneliness and isolation.
- The developer identified a performance gap, with scores ranging from 81.4% to 98.3% across 39 participating state.
Closing Care Gaps
The developer did not address this optional domain.
Feasibility Assessment
Strengths:
- As a maintenance measure, data collection for the measure and the measure calculation have been shown to be feasible. There are no changes to the measure specification for the current submission.
- NCI-IDD data collection is conducted through a formal agreement among states, NASDDDS, and HSRI, with defined roles for program management, technical assistance, and data reporting, supported by an annual participation fee. States are responsible for collecting and submitting data in accordance with established protocols and may use either internal staff or external vendors to do so. (Section 4.1b)
Limitations:
- The measure relies on patient-reported data and administrative data (noted as background information). It is unclear how burdensome the data collection and administrative data integration is for the states implementing the survey (dollars; staff hours),or what proportion of states opt to use a vendor for survey activities.
- In addition, the developer notes that in states where background information collectors do not have access to respondents' services plans, the data collector needs to contact respondents' case managers for information. This raises a question about differential completion rates for cases with background information readily available vs. cases requiring outreach to case managers?
Rationale:
- This maintenance measure is rated as “Met ” for feasibility because the develop describes the NCI-IDD data collection process including formal agreements among states and defined rolls for program management, technical assistance, and data reportingm, supported for an annual participation fee. States follow data collection and data submission protocols, with or without vendor support.
Scientific Acceptability
Strengths:
- Data sources used for reliability analysis were sourced from surveys from participating states during the period July 2024 to June 2025.
- The developer conducted signal-to-noise reliability testing at the accountable entity-level. More than 70% of accountable entities meet the expected threshold of 0.6 for signal-to-noise reliability testing.
Limitations:
- The developer did not provide a sufficient description of the data used for reliability; specifically, they did not describe why only 17,157 (Table 2a) of the 30,888 surveys (Section 5.1.1) were used for testing from the 39 participating states.
- One accountable entity had reliability below 0.4, and the developer provided an interpretation of and a rationale for these results, stating that this state (entity) had the smallest sample size (74) among all of the states, with most having a sample size greater than 200, and that the small sample size is impacting the reliability estimate of this state.
Rationale:
- This maintenance measure is rated as 'Met' for reliability because the developer performed the required reliability testing for this measure and results demonstrate sufficient reliability at the accountable entity-level.
Strengths:
- The developer performed the required validity testing for this maintenance measure, namely, they performed accountable entity-level (“measure score”) validity testing at the level for which the measure is specified. Data sources used for validity analysis are adequately described and include survey data collected in 2024-2025. The survey data included 39 participating states and 30,888 respondents.
- The developers hypothesized that the Social Connectedness measure (percentage of respondents who do not feel lonely often) would be positively correlated with three other NCI-derived measures, the Community Inclusion composite (frequency of specified community activities), the Satisfaction with Community Inclusion composite, and 'Has Friends' (a survey item measuring whether respondents reported having friends outside family and staff); the developer predicted a stronger correlation of the measure with the satisfaction composite than with the community inclusion composite, reasoning that satisfaction with their level of inclusion is more closely related to feeling a sense of social connectedness. The correlation estimates largely supported these hypotheses (community inclusion scale, Pearson r=0.156, p=0.172; satisfaction, Pearson r=0.692, p<0.001; has friends, Pearson r=0.201, p=0.110).
- A well-grounded, thorough logic model and acceptable reliability support an inference of validity for the measure.
Limitations:
- A limitation of this approach is the lack of a comparator measure that is independent of the NCI survey, limiting the developers' ability to evaluate the external validity of the measure. The developer did not offer an interpretation for the relatively small correlation of the measure with 'having friends'. While two of the correlations do not meet the threshold for significance, as the developer pointed out, a sample of states offers limited statistical power.
- The developer did not conduct risk or case-mix adjustment, but provided a rationale stating that using unadjusted measures is preferable for quality improvement purposes, to avoid masking disparities in quality of care. The developers state that services should be tailored to provide equally positive experiences for all participants, regardless of participant case-mix.
Rationale:
- This maintenance measure is rated as ‘Not Met But Addressable’ for validity because the validity testing results partially support an inference of validity for the measure, suggesting that the measure somewhat accurately reflects performance on quality and can distinguish good from poor performance to a limited extent.
- The developer did not conduct case-mix adjustment, but provided a reasonable rationale for why and supporting literature.
Use and Usability
Strengths:
- The Social Connectedness measure is included in the Centers for Medicare and Medicaid Services (CMS) HCBS quality measure set. The developer detailed a process for collecting feedback from states (noting none had been received to date), and they reported no adverse or unintended findings from the measure.
- The developer's provides recommendations for how states can improve performance on the Social Connectedness measure, and provides linked material. Recommendations include creating a system-wide definition of “social connection” and identify it as a key quality of life component and mental health issue; include “social connection” and “belonging” as an outcome in quality strategies and waiver goals; and examining NCI-IDD data to identify populations who might be at higher risk of loneliness and then developing targeted interventions for those populations.
- Performance on the Social Connectedness measure has decreased slightly from 87.3% to 87.1% between 2022-23 and 2024-25. Fifteen states improved and fourteen declined. The developer providers potential reasons why scores remained essentially unchanged including the longer timeframe required to show system-level improvement and workforce, economic, and social challenges across the system that can impact the ability to make impactful changes.
Limitations:
- The developer cites multiple programs, in addition to the CMS HCBS, that use National Core Indicators (NCI) data or NCI measures. It is unclear if these programs are using the Social Connectedness measure specifically.
Rationale:
- This maintenance measure is rated ‘Met’ for use and usability because it is actively used in at least one accountability application, with a systematic feedback approach that allows for continuous updates based on stakeholder feedback. Despite no consistent change in performance over time, the developer noted that state-level policy and systems changes take time to flow down to service providers and affect outcomes, and also that the COVID-19 public health emergency presented a significant disruption. The developer reported no adverse or unexpected findings.
Committee Independent Review
(No subject)
Importance
Yes- importance is met. The measure addresses a meaningful outcome. Social connectedness is directly linked to health, well-being, and quality of life for individuals receiving HCBS , aligns with evidence-based practice., and measure holds policy relevance.
Feasibility Assessment
Yes- this measure is feasbie. The submission provides sufficient evidence that the measure is feasible to implement in routine practice. The measure has been successfully implemented over many years.
Scientific Acceptability
The submission provides adequate evidence that the measure is reliable at the accountable entity (state) level.
The submission provides sufficient evidence of construct validity through theory-driven hypotheses and empirical testing at the accountable entity level.
Use and Usability
The submission provides strong evidence that the measure is not only implemented but is actively used to support quality monitoring, accountability, benchmarking, and quality improvement across multiple programs and jurisdictions. The measure is used by multiple state developmental disability systems, including California, Pennsylvania, and Missouri.
(No subject)
Importance
Provides same support for importance as other measures in set, i.e., logic model, participation in framework development and testing, results of 230-24 survey indicating majority wanted help to make friends.
Two questions
1- availability of recent evidence supporting importance of social connectedness
2. Data on performance gap - mean is high 87%, with range 81-% to 98 % - although measure developers note some room for improvement is it time to re-evaluate the framework and suggest a measure with greater room for improvement.
Closing Care Gaps
Optional
Feasibility Assessment
Same question as other measures related to impact of burden of data collection and cost of participation.
Scientific Acceptability
IUR .774
agree with staff preliminary assessment - as with all measures reviewed in this set, validity testing is done via hypothesis testing. As noted in staff assessment, data used for hypothesis testing all come from NCI measure. Correlations are in the predicted direction, magnitude of relationship with "has friends" is lower than hypothesized. Same explanation for lack of support. Maybe time to generate other hypotheses? and use measures other than NCI items.
Use and Usability
agree with staff preliminary assessment
I support the measure
Importance
Agree with staff assessment
Closing Care Gaps
Optional and not assessed
Feasibility Assessment
Agree with staff assessment
Scientific Acceptability
Agree with staff assessment
Agree with staff assessment
Use and Usability
Agree with staff assessment and rationale. "‘Met’ for use and usability because it is actively used in at least one accountability application, with a systematic feedback approach that allows for continuous updates based on stakeholder feedback."
Summary
I support the measure
Important measure
Importance
Closing Care Gaps
optional this cycle
Feasibility Assessment
Scientific Acceptability
Use and Usability
Summary
Social connectedness is an important and meaningful measure for the ID/DD community, and I support it.
I agree with the staff…
Importance
Closing Care Gaps
Feasibility Assessment
Scientific Acceptability
Use and Usability
Summary
I agree with the staff comments.
Public Comments
No public comments
No public comments