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 the extent to which person‑centered service planning reflects individual preferences to increase independence in activities of daily living (ADLs) among people receiving home- and community‑based services. It calculates the proportion of people who express they want to increase independence in ADLs who have a related goal in their service plan.
This measure is intended to capture alignment between expressed preferences and formal service planning and to support monitoring of person‑centered practices that promote independence and self‑determination.
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 whether program participants who express a desire to increase independence in functional skills (activities of daily living or ADLs) have a related goal in their service plan. The ability to complete ADLs is one dimension of the Holistic Health and Functioning domain in the HCBS Quality Framework that was developed based on expert input, including from people with lived experience of disability services (National Quality Forum, 2016). Identifying individual goals is core to Person-Centered Planning and Coordination, another framework domain.
Person-centered service planning is an evidence-based practice specifying the types and amounts of services needed to meet individual goals and preferences and connecting people to those services. If plans do not include corresponding goals for expressed desires, respondents may be less likely to meet these goals (Isvan, Bonardi, and Hiersteiner, 2023). Monitoring the presence of ADL goals in service plans for those who desire them allows programs to develop tailored quality improvement interventions to improve the person-centered planning process, including education, technical assistance and value-based payment or other incentives. Public reporting enables benchmarking against other state programs.
References
Isvan, N., Bonardi, A., & Hiersteiner, D. (2023). 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. Journal of Intellectual Disability Research, 67(12), 1249–1269. https://doi.org/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
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 have a documented goal in their service plan to increase independence or improve functional skill performance in activities of daily living. This is assessed using survey item BI‑56: “In the service plan, is there a goal to increase independence or improve functional skill performance in activities of daily living (ADLs)?” Response options for BI‑56 are 2 = Yes and 1 = No. Individuals with a response of “Yes” to BI‑56 are included in the numerator.
In Section I of the IPS, Question 29 asks respondents “Sometimes people need help with things like getting dressed, taking a shower, brushing their teeth. Do you ever need help with these?” If respondents answer YES or SOMETIMES, they are then asked Question 30: “Do you want to learn to do more of these things (like getting dressed, taking a shower, or brushing your teeth) for yourself or on your own?”
The proportion P is defined as follows: P = X/Y, where
The numerator (“X”) is those cases that:
- are not “INVALID SECTION I cases,” (INVL_CR1_15 = 0)
- respond YES or SOMETIMES to Question 2 (PCP_SELFCARE_HELP_21 = 2 or 3)
- respond YES to Question 30 (PCP_SELFCARE_LEARN_21=2)
- have a response of YES to BI-56(PCP_SPGOAL_INDADL_21): In this person’s service plan, is there a goal to increase independence or improve functional skill performance in activities of daily living (ADLs)?
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 express a desire to increase independence in activities of daily living. This target population is identified using survey item Q30: “Do you want to learn to do more of things like getting dressed, taking a shower, or brushing your teeth for yourself or on your own?” Response options for Q30 are 2 = Yes and 1 = No. Individuals who respond “Yes” to Q30 are included in the denominator.
In Section I of the IPS, Question 29 asks respondents “Sometimes people need help with things like getting dressed, taking a shower, brushing their teeth. Do you ever need help with these?” If respondents answer YES or SOMETIMES, they are then asked Question 30: “Do you want to learn to do more of these things (like getting dressed, taking a shower, or brushing your teeth) for yourself or on your own?”
The proportion P is defined as follows: P = X/Y, where the denominator (“Y”) is those cases that:
- are not “INVALID SECTION I cases,” (INVL_CR1_15 = 0)
- respond YES or SOMETIMES to Question 29 (PCP_SELFCARE_HELP_21 = 2 or 3),
- respond YES to Question 30 (PCP_SELFCARE_LEARN_21=2)
- have a valid response to BI-56(PCP_SPGOAL_INDADL_21)
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 PCP_SELFCARE_HELP_21, PCP_SELFCARE_LEARN_21, or PCP_SPGOAL_INDADL_21 is missing or "Don't know"
- Cases are excluded from denominators when skip patterns or respondent eligibility prerequisite conditions are not met:
- Excluded if NO to Question 29 (PCP_SELFCARE_HELP_21 = 2 or 3),
- Excluded if NO to Question 30 (PCP_SELFCARE_LEARN_21=2)
Measure Calculation
Please see attached 3622-1.18-Calculation-of-Measure-Score-Spring2026.docx
The measure scores are stratified by residence type. This stratification is applied to unadjusted measure scores and respective unweighted n; no clinical or risk adjustment is used.
Residence type categories are as follows:
- Institutional Settings include facilities such as nursing facilities, intermediate care facilities, or other specialized institutional facilities.
- Group Settings include group homes or supervised apartments where services are provided by a service provider agency in a shared residential environment
- Own Home or Apartment refers to a home or apartment owned or leased by the individual, with or without roommate(s) or spouse
- Parent’s or Relative’s Home refers to living in the home of a parent or other relative
- Host Home, Shared Living, or Foster Care refers to living in a single-family residence with a host family or caregiver who furnishes round-the-clock services.
Risk adjustment and clinical adjustment are not applied. Please see 3622-1.19-Measure-Stratification-Spring2026.xlsx for additional information about the stratification table.
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
Support for completing everyday activities is a common service in HCBS programs for people with intellectual and development disabilities (Friedman, 2023). Documenting and planning services around functional and other goals identified by HCBS program participants is a central component of person-centered service planning. Person-centered service planning and goal-based care have demonstrated effectiveness in meeting service needs (Chong et al., 2024; Chong and Caldwell, 2023), on positive health and well-being (Isvan, Bonardi and Hiersteiner, 2023) and improving ADL functioning (Szanton et al., 2021). Assessing whether personal functional goals are reflected in service planning is an important process measure for reinforcing person-centered planning best practices.
References
Chong, N. and Caldwell, J. (2023) The association between person-centered planning and person-reported outcomes in home and community-based services Innovations in Aging 7(1) doi.org/10.1093/geroni/igad104.0808
Chong, N., Caldwell, J., Kaye, H., and Mitra, M. (2024) Outcomes of person-centered planning in Medicaid home and community-based services Gerontologist 64(6) doi: 10.1093/geront/gnae017
Friedman, C. (2023). Medicaid Home and Community Based Services Waivers for People with Intellectual and Developmental Disabilities Retrieved from https://www.aaidd.org/docs/default-source/prepressarticles/medicaid-home-and-community-based-services-waivers-for-people-with-intellectual-and-developmental-disabilities.pdf?sfvrsn=83323d21_0
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
Szanton, S., Leff, B., Qiwei, L. Breysse, J., Spoelstra, S., Kell, J., Purvis, J., Xue, Q., Wilson, J., and Gitlin, L. CAPABLE program improves disability in multiple randomized trials Journal of the American Geriatrics Society https://doi.org/10.1111/jgs.17383
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
This measure, in and of itself, partially reflects its own importance to target population. The denominator of this measure shows the percentage of survey respondents who say they want to learn to perform ADLs more independently. In 2024-25, 5,744 respondents reported that they always or sometimes need help with things like getting dressed, taking a shower, brushing their teeth or other ADLs. Of those, 3201 respondents reported that they wanted to learn to perform ADLs more independently. This demonstrates that 57% of those who sometimes or always need support for ADLs would like to learn to perform ADLs more independently (National Core Indicators-IDD, In Person Survey data 2024-25). This percentage shows that performing ADLs independently and having the support to do so written in service plans is meaningful and important to those who receive services.
This measure is reflective of the Person Centered Planning and Coordination domain and the Holistic Health and Functioning domain that were identified by stakeholders and expert panelists who came together to establish the NQF framework for HCBS quality. This measure reflects Person Centered Planning and Coordination because it demonstrates the extent to which service plans reflect a person’s personal goals. This measure also reflects the Holistic Health and Functioning domain of the NQF framework for HCBS quality, as it measures whether people who so desire are supported to improve ADL skills, a critical daily function.
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. Additional information on the UMN brief and development process is available at the Instrument level. 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.
References:
National Core Indicators. (2024). 2023-24 National Report: Relationships Retrieved from 2023-24 NCI-IDD Relationships National Report
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. The measure combines service plan information provided by the state with self-reported survey data from participants who report that they need help with activities of daily living (ADL) and would like to learn to do more of them by themselves. The mean performance score represents the average percentage of survey respondents in the state who would like to learn to perform ADLs independently who have this as a goal in their service plan. The overall mean for the measure is 77%, ranging from 16% to 97% across the 34 states with valid data. The measure score would be expected to increase with increased efforts to include service users in the service planning process and increased efforts by case managers to learn the preferences and priorities of the people they serve. Both of these system changes will involve concerted efforts to support people with IDD to participate in the planning process by ensuring that they are sufficiently informed about available opportunities and the choices they can make. Half of the states in our sample score below 80% on this measure, meaning that at least 20% of their participants who need help with ADLs and would like to learn perform more of these by themselves but do not have this goal included in their service plans. This indicates a service gap with room for improvement in at least half of the participating states.
Table 1. 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 | 76.7% | 16.2% | 35.0% | 58.5% | 67.3% | 71.8% | 78.3% | 81.5% | 84.6% | 87.9% | 91.5% | 95.2% | 96.6% |
| N of Entities | 34 | 1 | 3 | 4 | 3 | 4 | 3 | 3 | 4 | 3 | 4 | 3 | 1 |
| N of Persons / Encounters / Episodes | 1,838 | 37 | 91 | 264 | 77 | 193 | 304 | 231 | 148 | 98 | 297 | 135 | 29 |
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 attachment “3622-ReliabilityMethodology_Binary-Spring2026.docx”
Total Entities: 34
Overall Mean Performance Score: 76.7%
Overall IUR: 0.882 (min 0.729, max 0.961)
Median Split-half ICC: 0.853 ± SD 0.041 (CI 0.787 - 0.907)
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 | 0.882 | 0.729 | 0.742 | 0.771 | 0.794 | 0.802 | 0.821 | 0.847 | 0.876 | 0.905 | 0.918 | 0.960 | 0.961 |
| Mean Performance Score | 76.7% | 65.0% | 79.2% | 79.3% | 84.6% | 65.1% | 61.7% | 72.3% | 81.1% | 80.1% | 68.6% | 83.8% | 81.4% |
| N of Entities | 34 | 1 | 3 | 4 | 3 | 4 | 3 | 3 | 4 | 3 | 4 | 3 | 1 |
| N of Persons / Encounters / Episodes | 1,838 | 20 | 64 | 100 | 85 | 119 | 101 | 121 | 206 | 206 | 325 | 511 | 177 |
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 | 0.882 | 0.729 | 0.742 | 0.771 | 0.794 | 0.802 | 0.821 | 0.847 | 0.876 | 0.905 | 0.918 | 0.960 | 0.961 |
The overall IUR of 0.882 indicates that about 88% of the variability in the measure is attributable to differences between states rather than to random noise. All deciles in both denominator and reliability deciles have reliability above the 0.7 threshold. These results suggest that the measure is successful in distinguishing between high- and low-performing states.
The ICC results indicate strong and dependable split-half reliability and modest variability across replications.
Validity
These measures have not been modified since original endorsement.
The NCI-IPS includes a question about whether the participant’s service plan includes things that are important to them. We would expect respondents who want to increase their ADL independence and have this included in their service plans to be more likely to respond to this question in the affirmative.
At first sight, this measure appears to share an underlying concept with the measure of wanting an integrated job and having that goal included in their service plan (Community Job Goal); both are indicators of alignment between the person’s preferences and their service plan. However, learning to perform ADLs and getting a community job require very different types of services and supports impacted by different factors in the state’s policy and resource environment. The types of service users who provide data for the two measures (the denominators) are also different. We therefore did not expect to find a strong correlation between these two measures.
One of the state-level factors that impact this measure is the composition of provider agencies within the state’s service system. Specifically, we would expect states that are moving to a managed long-term services and supports (MLTSS) system to differ from states where a fee-for-service framework is predominant. There are mainly two factors that pose challenges for people with disabilities in an MLTSS system. First, managed care organizations (MCO) have a tendency to “cream” their members; that is, they prefer to enroll people with low service needs. Second, service pre-authorization becomes a factor and affects the service planning process, limiting the ability of service users to direct their own service plans. Even though states have been trying to address these challenges by adjusting their capitation frameworks and establishing “no-conflict” service planning by third parties, the success of these measures vary by state (Ne’eman, 2017). We would therefore expect states where MCOs are prominent components of the LTSS system to have lower scores on this measure.
To test these hypotheses, we calculated the correlation between our measure and the following:
- Important Service Plan Content. This measure is based on the NCI-IPS survey item, “Does your service plan include things that are important to you?”. Response options are Yes, In Between, No. We calculated the percentage of respondents with a “Yes” response.
- Community Job Goal. This is measure is calculated as the percentage of respondents who want a community job and have it included in their service plan.
- Percent MCO. We calculated the percentage of Medicaid beneficiaries served by an MCO, based on data from the KFF State Health Facts Database.
We report non-parametric (Spearman’s Rho) correlation coefficients since the distributional assumptions of Pearson correlation are violated for all three correlates. We conducted one-tailed significance tests of the correlation coefficients in line with the nature of the hypothesized associations.
References
Ne’eman, A. 2017. Managed Long-Term Services and Supports: Assessment, Authorization, Service Planning, and Case Management in State MLTSS Systems. White Paper, Community Living Policy Center, University of California San Francisco.
| Hypothesized Correlate | N of States | Spearman Rank Correlation (p-value) |
| Important Service Plan Content | 37 | 0.322 (0.052) |
| Community Job Goal | 32 | -0.013 (0.472) |
| Percent MCO | 28 | -0.406 (0.016) |
As we expected, the measure is positively correlated with percentage of respondents who report that their service plan contains things that are important to them. There is a direct causal relationship between these two measures (process to outcome), lending support for the measure’s construct validity.
We expected there to be no correlation with Community Job Goal since the two measures have different factors of the service environment as determinants, even though they have a conceptual overlap. The data bears this out.
Finally, we anticipated a negative correlation with the prevalence of MCOs among service providers. The results provide strong support for this hypothesis, supporting the measure’s construct validity.
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 alignment between a person’s goals and the services provided. The services should be aimed at helping people achieve their personal goals. In order to ensure this alignment occurs, state DD systems can take several steps:
- Ensure that, if a person has a goal to increase independence in ADLs, this goal is identified. 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 what ADL independence might look like 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 independence, like assistive technology, therapy or environmental modifications. 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.
There are challenges that may make these steps difficult to complete:
- Risk aversion: case managers may avoid including goals that involve trial and potential failure.
- Lack of training for service coordinators and case managers on goal setting
- Challenges related to different communication styles leading to challenges identifying ADL goals
- Workforce shortages may make it challenging to have staff available to help a person learn to do ADLs, as opposed to just getting it done (which is often faster).
The system can work to overcome these challenges by:
- Adjusting metrics so that goals that are not achieved do not reflect badly on the person, staff, case manager.
- Providing training for service coordinators and case managers on skills-based ADL goals
- Providing examples of ADL goals that service coordinators and case managers can use
- Investing in provider and direct support professional capacity
- Encourage training in teaching ADL skills, use of assistive technology, and fading prompts.
- Align reimbursement and service definitions to support learning and independence, not just supervision.
Several states have made policy and program changes to encourage that service plans include a person’s goals. Here are some examples.
- States require provider organizations to demonstrate statutory assurances that service plan regulations are met, including reviews of person-centered planning outcomes. For example, Indiana Bureau of Developmental Disability Services reports to CMS in their 1915(c) Appendix D Service Planning Waiver Performance Measures. Quality of service coordination, and the extent to which service plans reflect their goals are monitored. See page 259.
- California DDS requires Regional Centers to demonstrate that services in the service plan (IPP) relate directly to a participant’s self-identified goals
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 measure has not been revised since its initial endorsement.
We conducted trend analysis of the 26 state systems with reportable data in both 2022-23 and 2024-25. In a paired state-level comparison, we found that performance moved by +1.4
percentage points (76.1% vs 77.5%, p = 0.585); 11 state systems improved, 13 declined, and 3 were unchanged. These results suggest directional improvement, 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 #3622-2 Staff Assessment
Importance
Strengths:
- The measure developer cites literature, dated within the past 5 years, that indicates support for daily functioning is a common service provided by home- and community-based services (HCBS) programs. The developers also cite evidence that person-centered service planning and goal-based care has been shown to improve the health and well-being of individuals with intellectual and developmental disabilities (IDD), as well as their functioning in terms of activities of daily living.
- A performance gap exist with a range in scores from 16.2% to 96.6%, with a median of 78.3% across 34 participating states with ~1,800 individuals with IDD.
Limitations:
- The developers do not address the value of aligning individuals desire to perform their own activities of daily living (ADLs) with their service plan goals specifically. The submission could be strengthened by providing evidence that goal alignment on ADLs contributes to individuals with IDD improving their ADL skills.
- General information about the meaningfulness of the ADL Goal measure is based on patient involvement in developing the National Quality Forum (NQF) Framework for Home- and Community-Based Services (HCBS) quality in 2015. The developers did not address the meaningfulness of the ADL Goal measure to individuals with IDD receiving HCBS.
Rationale:
- This maintenance measure is rated as “Met” for importance because the developer cites recent evidence supporting HCBS programs that are person-centered and goal oriented. The developers also cite evidence that person-centered service planning and goal-based care has been shown to improve the health and well-being of individuals with intellectual and developmental disabilities (IDD), as well as their functioning in terms of activities of daily living.
- The developer identified a performance gap, with scores ranging from 16.2% to 96.6% across 34 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 developer describes the NCI-IDD data collection process including formal agreements among states and defined rolls for program management, technical assistance, and data reporting, supported for an annual participation fee. States follow data collection and data submission protocols, with or without vendor support.
- Details are lacking with regard to state-level burden for states in which data collectors need to contact respondents' case managers for information. It is plausible that cases requiring case management outreach are more burdensome and potentially result in an increased number of non-completed surveys among a subset of individuals with IDD.
Scientific Acceptability
Strengths:
- Data 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 and 100% of entities meet the expected threshold of 0.4 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 34 (Table 2a) states of the 39 participating states (Section 5.1.1) were including in the reliability testing; and they did not describe why only 1,838 (Table 2a) of the 30,888 surveys (Section 5.1.1) were used for testing.
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 and each state's percentage of Medicaid beneficiaries served by a managed care organization (MCO) (Kaiser Family Foundation, year not provided). The survey data included 39 participating states and 30,888 respondents.
- The developer hypothesized that individuals' reports about whether their service plan includes things that are important to them (percent 'yes') and the percentage of respondents who want a community job and have this documented in their service plan would be positively associated with the measure, but they predicted a weaker correlation of the measure (ADL Goal) with desiring a community job, noting the differences in services required to achieve these outcomes. The developer hypothesized that the state-level percentage of Medicaid beneficiaries served by MCOs would be negatively associated with performance on the measure, reasoning that the tendency of MCOs to cherry-pick members and barriers related to pre-authorization would lower states' performance on the measure. The correlation estimates supported these hypotheses (important service plan content, Spearman r=0.322, p=0.052; Community Job Goal, Spearman r=-0.013, p=0.472; percent rural, Spearman r=-0.406, p=0.016). A strength of this approach is the use of a comparator collected separately from the survey, i.e., MCO market penetration for this population.
- A well-grounded, thorough logic model and acceptable reliability support an inference of validity for the measure.
Limitations:
- Literature to support testing of the hypothesized relationship between the measure and percentage of Medicaid beneficiaries served by MCOs is somewhat dated (2017).
- All analyses used fewer than the 39 participating states noted in the methods. The developer did not report the specific states included in validity analyses, somewhat hampering ability to evaluate geographic representativeness of the data, especially for the correlation with percent MCO (n=28 states).
- 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 ‘Met’ for validity because the developer performed the required validity testing for this measure, and validity testing results support a strong inference of validity for the measure, confirming that the measure accurately reflects performance on quality and can distinguish good from poor performance.
- The developer did not conduct case-mix adjustment, but provided a reasonable rationale for why and supporting literature.
Use and Usability
Strengths:
- The developer's provides recommendations for how states can improve performance on the ADL goal measure, and provides linked material. Recommendations include alignment of person's goal with services provided; educationing individuals about what ADL independence might look like; and including services that promote independence like assistive technology and/or environmental modifications. 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.
- Performance has improved slightly from 76.1% to 77.5% between 2022-23 and 2024-25. Fewer states improved (n=11) than declined (n=13). The developer cites reasons for the minimal improvement 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. COVID-19 was identified as another reason for minimal improvement.
- The measure is stratified by residence type, providing more granular data for quality improvement.
Limitations:
- The developer indicates the measure is used in the Center for Medicare and Medicaid Services HCBS Measure Set, but this contradicts information in Section 2.6. In addition, the measure is cited as being used in multiple programs, but in the description of the programs, they use NCI data or NCI measures. It is unclear if these programs use the ADL Goal 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
The submission provides a clear and well-supported rationale for the importance of the measure. It demonstrates that person-centered service planning is an evidence-based practice required within Medicaid HCBS programs and explains how the measure supports monitoring meaningful outcomes, evaluating program effectiveness, and informing quality improvement efforts.
Feasibility Assessment
The submission provides sufficient evidence that the measure is feasible to implement. It describes a well-established data collection infrastructure, standardized processes, built-in data quality checks, confidentiality protections, and ongoing technical support.
Scientific Acceptability
The submission provides strong evidence that the measure is reliable at the accountable entity (state) level. Reliability testing was conducted using a large, nationally representative dataset of over 30,000 respondents across 39 states.
The submission presents a well-reasoned construct validity assessment
Use and Usability
The submission provides compelling evidence that the measure is actively used in national and state quality improvement and accountability programs.
(No subject)
Importance
Per staff preliminary review, overall measure logic model, 2015 framework and percent of respondents desiring to perform more independently, and performance gap data support importance. However, there is limited empirical support for the relationship between alignment between patient and service plan goal and outcomes. Strengthening evidence support would enhance the evaluation of importance.
Closing Care Gaps
Optional
Feasibility Assessment
Same rationale as other measures in set. Would be helpful to have more information about the burden of data collection including the cost for participation (> $19,000)
Scientific Acceptability
Agree with staff preliminary assessment
Agree with staff preliminary assessment; direction and magnitude of correlations for each of the 3 hypotheses supports validity.
Use and Usability
agree with staff preliminary assessment
I support the measure
Importance
Agree with the staff assessment "The developers also cite evidence that person-centered service planning and goal-based care has been shown to improve the health and well-being of individuals with intellectual and developmental disabilities (IDD), as well as their functioning in terms of activities of daily living."
Closing Care Gaps
Optional- Not assessed
Feasibility Assessment
The Measure is already in existence, and there is no change to the measure, and the measure calculation has been shown to be feasible. There is a formal agreement with states for program management and data collection.
Scientific Acceptability
Agree with staff assessment
Agree with staff assessment
Use and Usability
Agree with staff assessment
Summary
I support the measure
I support this measure
Importance
Closing Care Gaps
optional this cycle
Feasibility Assessment
Scientific Acceptability
Use and Usability
Summary
I support the meaningfulness of this measure, attempting to grow independence of the participants.
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