The Need for Norming Instruments That Measure Inclusion Activities Among People Who Have Intellectual Disability

Author

James Gunther

Date

December 9, 2024

The Need for Norming Instruments That Measure Inclusion Activities Among People Who Have Intellectual Disability

Link to article on the Science Innovations Journal website

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By: Scott Spreat1, Dylan Hicks2

1Woods System of Care

2American University

Keywords: Intellectual Disability, Inclusion, Norming

Abstract

More attention has been brought towards efforts to better integrate people with Intellectual

Disability (ID) with the rest of society. Part of this integration is understanding the similarities

and differences in the number of interactions that people with Intellectual Disability and the

normative population have in various scenarios. In the absence of normed scales measuring

inclusion, community participation data collected from 2005 people with Intellectual Disability

were compared with data from a variety of samples of members of the general public. Studies

suggest a means by which inclusion data might be interpreted. Preliminary results suggested that

people with Intellectual Disability participated in social community events slightly more than the

general public but slightly less in life support events such as grocery shopping. This study

provides insight into how people with Intellectual Disability interact in different community

settings, but also a greater need for more public data on average interaction data from the general

population as a whole.

Introduction

Inclusion and equitable community participation have been cornerstones of the

deinstitutionalization movement in the Intellectual Disability field. The deinstitutionalization

movement of the 1960s and 1970s was driven by concerns regarding quality of care, unnecessary

segregation, and the belief that better alternatives existed. Thaler (1991) summarized the new

mission of Intellectual Disability services in the document “Everyday Lives.”

Conroy and Bradley conducted one of the early large-scale evaluations of the

deinstitutionalization movement, focusing on the life outcomes for persons discharged from the

Pennhurst Center in Spring City, PA (Conroy and Bradley, 1985). They employed a multitude of

outcome indicators in their study, including a series of questions that specifically addressed

community involvement. Specific items included:

Inclusion in community activities
Changes in adaptive behavior
Type of Day Activity
Satisfaction with Life Quality
Ability to make and implement decisions

Other researchers have followed in this tradition of attempting to monitor the extent to which

these formerly segregated individuals were able to participate in the general community. Most

notably, the National Core Indicators project (National Core Indicators-Aging and Disabilities,

2023) regularly addresses a sample of inclusion questions in their annual surveys. Given the size

of their sample and the fact that it approximates a national sample, it is reasonable to suggest that

the National Core Indicator data are perhaps the most reliable and valid estimates of inclusion

that are currently available.

Returning to the Conroy and Bradley Pennhurst study (1985), note that the researchers also

studied changes in adaptive behavior over time. As a measure of personal competence, a desired

outcome in adaptive behavior would be a documentable increase in personal skills, with adult

Americans typically earning a perfect (or near-perfect) score on most measures of adaptive

behavior (Spreat, 2017). Norming is not a particularly relevant construct with reference to

adaptive behavior because the real norm approaches absolute performance. Adaptive behavior is

not normally distributed. Simply put, the higher the adaptive behavior score, the better the

welfare and independence of the individual.

Inclusion metrics, however, do not approach maximal outcomes for any population. Norming

among the general population is really needed in order to interpret scores obtained in studies

such as those conducted by NCI and Conroy & Bradley (1985). The goal of inclusion is not so

much to maximize inclusion but rather to attempt to match the extent of the community

participation rate achieved by members of the general public who do not experience disabilities.

Ultimately, the goal of the inclusion movement is to promote an everyday sort of life (Thaler,

1991).

Norming of inclusion expectations is absolutely necessary in order to interpret the findings of

inclusionary studies in the Intellectual Disability field. Going to the movies 50 times per month

is not so much the goal as going to the movies about as often as everyone else does.

Unfortunately, none of the more typically used inclusion scales are normed with a general public

population. Without data that address normative expectations for inclusion, it is not really

possible to interpret findings for inclusion studies involving people with Intellectual Disability.

To date, no one has established normative expectations for inclusionary community-based

activities. The purpose of this study was to attempt to locate publicly available data that offer

insight into the extent to which members of the general public actively participate in community

events that are typically listed in measures used to quantify inclusion in the Intellectual Disability

field. Conroy’s (1997) scale on integration activities served as the starting point for the

investigation. This scale has been used in many large-scale studies in the United States, and its

content is typical of other measures of social inclusion. Conroy’s scale contains 15 discrete

questions on the frequency of inclusion. A general description of each item appears in the table

below. The task at hand was to attempt to locate empirical data that might yield some suggestion

of the extent to which members of the general public participate in the activities listed in the

Conroy (1997) scale.

Conroy’s scale on integrative activities included 15 discrete questions. Responses to each item

were framed in terms of the monthly frequency with which a given individual participated in that

activity. The questions are listed in the table below.

Items included in Conroy’s 1997 Integrated Activities Scale

Visit with close friends, relatives, or neighbors
Visit a grocery store
Go to a restaurant
Go to church or synagogue
Go to shopping center, mall, or other retail store to shop
Go to bar or tavern
Go to a bank
Go to a movie
Go to a park or playground
Go to a theater or cultural event (includes local)
Go to a post office
Go to the Library
Go to a sporting event
Go to a health or exercise club, spa, or center
Use public transportation

In an effort to establish rudimentary normative expectations for community inclusion and

integration efforts, a search was conducted to locate surveys of the general public that addressed

items similar to those in Conroy’s (1997) scale. Sources varied widely, often coming from

industry surveys. The following surveys contributed to the estimation of everyday life

inclusion/integration activities:

Civic Science (2023) survey on socialization
NASDAQ (2023) survey on grocery store use
USFoods (2023) survey on restaurants
Gallup poll (2010) survey on church attendance
ICSC survey (2015) of shopping frequency
World Metrics (2024) survey on bars and taverns
Forbes (2023) survey on bank use
Popflick survey (2022) on movie attendance
National Recreation and Parks Association survey (2019) on park use
Statistica (2013) survey on theater/cultural event attendance
USPS (2023) survey on the use of post office
Gallup Poll (2019) survey on library use
Sports Business Journal (2023) report on attendance at professional sporting events
Media Market (2021) report of gym and spa attendance
APTA (2024) report on the use of public transportation

The findings of the review of surveys done with the general public were compared with findings

reported in a statewide survey of the Intellectual Disability system in mid-western states. The

table immediately below depicts those Conroy items for which estimates of monthly

participation frequency were available for both the sample with Intellectual Disability and a

sample of the general public. Note that each question relied on a different sample for the general

public.

There were several items for which the responses of the general public were quantified in terms

of the percentage of individuals who did attend the events. They were not reported as monthly

counts. Where necessary, the data were converted to the percentage of people who attended in

any given month. Similar adjustments were made for the data from the Intellectual Disability

sample. This information is presented below:

Utility of these data

This is admittedly a rudimentary effort to attempt to impose some limited degree of

interpretability on Intellectual Disability inclusion and integration data. The limitations of these

data must be recognized, and it must be understood that their value derives solely from the

complete absence of normative data on scales typically used in the Intellectual Disability field.

Certainly, they do not constitute a satisfactory norm group, but they do offer some preliminary

suggestions for the interpretation of data collected from people who have Intellectual

Disabilities. Ideally, the better solution would be to collect normative data from a large sample

using Conroy’s scale. In this manner, evaluators might be better able to assess the outcomes

associated with efforts to include people with Intellectual Disability in community activities.

Subjectively examining the discrepancies between the sample with Intellectual Disability and the

samples from the general public, there is the modest suggestion that people with Intellectual

Disability have the opportunity to participate in increased levels of socialization activities such

as going to the Library, Movies, or Church. Members of the general public appear to devote

greater effort to maintenance activities, such as grocery shopping.

Considerable caution needs to be exercised with regard to these data. The intent is not so much to

establish an alternative approach for establishing socialization norms but rather to call for the

norming of scales that attempt to quantify the extent to which individuals with Intellectual

Disability participate in community integration activities. Ultimately, the goal is to promote

socialization/integration activities that essentially match the participation level of members of the

general public. To do this, it is essential to establish norms for scales that measure

inclusion/integration activities.

Overall, this analysis has some limitations. First, without having a true norm group, percentile

rankings cannot be acquired. Because of this, analysis was limited to subjective ratings of above,

at, or below average when comparing norm data to survey data. Also, the samples are not truly

from the norm group but rather from those who responded to the survey. There is bias based on

the people who respond to surveys versus those who don’t, so there is potential for different

perspectives to be missed out on because of those who did not respond to the survey. To help

mitigate this, a true norm group needs to be established, but the difficulty of that ties into the

difficulty of survey responder bias.

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