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, 46 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.
The NCI for ID/DD HCBS Measures consist of 14 measures in total, including: Five measures in the HCBS Domain: Person-Centered Planning (PCP) and Coordination #PCP-1 The proportion of people who express they want a job who have a related goal in their service plan (Community Job Goal) #PCP-2 The proportion of people who report their service plan includes things that are important to them (Person-Centered Goals) #PCP-3 The proportion of people who express they want to increase independence in functional skills (ADLs) who have a related goal in their service plan (ADL Goal) #PCP-4 The proportion of people who report they are supported to learn new things (Lifelong Learning) #PCP-5 The proportion of people who report satisfaction with the level of participation in community inclusion activities (Satisfaction with Community Inclusion Scale)
Four measures in the HCBS Domain: Community Inclusion #CI-1 The proportion of people who reported that they do not feel lonely often (Social Connectedness) #CI-2 The proportion of people who reported that they have friends who are not staff or family members (Has Friends) #CI-3 The proportion of people who report adequate transportation (Transportation Availability Scale) #CI-4 The proportion of people who engage in activities outside the home (Community Inclusion Scale)
Four measures in the HCBS Domain: Choice and Control #CC-1 The proportion of people who reported they chose or were aware they could request to change their staff (Chose Staff) #CC-2 The proportion of people who reported they could change their case manager/service coordinator (Can Change Case Manager) #CC-3 The proportion of people who live with others who report they can stay home if they choose when others in their house/home go somewhere (Can Stay Home When Others Leave) #CC-4 The proportion of people who report making choices (independently or with help) in life decisions (Life Decisions Scale)
And one measure in the HCBS Domain: Human and Legal Rights #HLR-1 The proportion of people who report that their personal space is respected in the home (Respect for Personal Space Scale)
The NCI for ID/DD HCBS Measures use values between 0 and 1 as the scores. Typically, the numerator is the number of respondents who selected the most positive response category (e.g. "yes", "always"). The attached file SuppTable_Measures_210420_508.xlsx lists what constituted the most positive response categories for each measure item, as well as other detailed information as relevant for S.2b.
Denominator
1.15 Denominator
For each measure, the denominator is the number of respondents (adult recipients of state developmental disabilities services) who provided valid answers to the respective survey question, except those that meet the exclusion criteria (see S.8. below for details).
If the denominator for a state is fewer than 20, the measure score is censored to protect the confidentiality of respondents.
Exclusions
Exclusions
At the end of Section I, the surveyor assesses whether the respondent appears to understand at least one question and answers in a cohesive manner. This assessment is the only subjective process in the exclusion determination process, but it is not done on an arbitrary or state-by-state basis. Rather, it is based on a protocol, included in the survey manual and reviewed during surveyor trainings, that apply uniformly to all surveyors across different participating states. The protocol is straightforward—the section must be marked “valid” if at least one question in the section was answered in a manner that the basic level of comprehension was shown, and a clear response given either verbally (e.g. yes/no) or non-verbally (nodding/shaking head). NCI and participating states routinely conduct surveyor training and surveyor shadowing and reviewing processes that ensure, among other things, that surveyors are applying this assessment (whether or not Section I was valid) strictly based on the protocol. If the surveyor´s assessment is that Section I is not valid, the respondent´s Section I data are flagged for exclusion from the numerators and denominators. However, the individual is not removed from the dataset. If Section I data are excluded, Section II data are flagged for exclusion from the numerators and denominators -unless- a proxy respondent was used in Section II. If the respondent or proxy did not answer any questions in Section II, the survey is removed from the denominators of Section II items.
Responses are excluded from numerators and denominators for Section I items if: (a) The surveyor indicated that the respondent did not give consistent and valid responses, or (b) All questions in Section I were left blank, or marked "not applicable" or "don’t know".
Responses are excluded from numerators and denominators for Section II items if: (a) the individual receiving supports was marked as the sole respondent to all questions in Section II but Section I was deemed invalid, or (b) All questions in Section II were left blank, or marked "not applicable" or "don’t know".
For each measure item, missing responses and responses indicating "not applicable" or "don’t know" were excluded from denominators. The distribution of exclusions among states is shown in Testing Attachment 2b2.2. Please see S.9. for more details on denominator exclusions.
Measure Record
Most Recent Endorsement Activity
Endorsed Patient Experience and Function Spring Cycle 2021
Initial Endorsement
Last Updated
Point of Contact
Steward Organization
Human Services Research Institute
Steward POC email
hli@hsri.org
Steward Organization Copyright
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