# Presentation: 450308

## The Disability Measurement Matrix

- Barbara M. Altman
- Jennifer Madans
- Elizabeth Rasch
- Angela Me
- Margaret Mbogoni
- Elena Palma

## Orientation and Process

- Matrix as it evolved from first meeting of Washington City Group
- Instructions and expectations
- Meetings at the U.N.
- Resultant draft

## Overview of Matrix Presentations

- Part 1 – Explanation of the conceptual model
- Barbara Altman

## Overview of Matrix Presentations

- Part 2 – An examination of the empirical reality in place now
- Margaret Mbogoni & Malin Synneborn
- Elizabeth Rasch
- Elena dePalma

## Overview of Matrix Presentations

- Part 3 – Using the matrix, identifying the gaps and other uses
- Jennifer Madans

## Matrix Objectives

- Put some order into the discussion of disability measurement
- Help clarify the purpose of data collection in order to identify appropriate measures
- Understand choices being made when time, expenses and respondent burden limit number of questions

## Mapping the Space

- Disability measurement is multidimensional like the phenomena itself.
- Not every measure is appropriate for every purpose, nor is a single measure always sufficient.
- Objective of the *The Disability* *Measurement Matrix* is to develop a tool to guide the choice of measures appropriate to the purpose of the data collection.

**Notes:**
I reiterate the goal a second time – since our purpose is not to dictate, but to provide a tool that will make the process of choosing measures more systematic and less confusing.

## Matrix Components

- 3 major elements of basic matrix
- Conceptual model –
- Work in progress, to be shared here
- Actual examples –
- Work in progress, to be shared here
- Ideal examples –
- Future project, for European meeting and beyond

## Matrix Components

- The conceptual model is made up of three parts, A, B & C.
- Part A represents the variety of purposes for measurement . In graphic format it is represented by the Y axis.

**Notes:**
You may want to follow along using you Part A and Part B components that should be in your notebooks

## Matrix Components

- Part B represents the substantive aspects of the questions that enhance the understanding of the concept of disability. In graphic format it is represented by the X axis.
- Part C represents  the characteristics of the questions that specify details about either the concept of disability or the format of the questions that can influence the data that is gathered. In graphic format it is represented by the Z axis.

**Notes:**
You may want to follow along using you Part A and Part B components that should be in your notebooks

## Visualizing the Matrix Components

- Part A-Purpose

- Part B – ICF Domains

- Part C - Characteristics

## Part A – Y Axis

- Data collection for a variety of purposes can be conceptualized at two levels of collectivity:
- Individual -  Data needs to reflect the differences as well as similarities between and among persons with disabilities. Data collected with a focus on its use relative to the individual.
- Population – Data reflects the aggregate level of measurement, detail is lost in an effort to reflect the nature of the group as a whole.

**Notes:**
An example of the need to capture data at the individual level can be the example of the implementation of a policy to close institutional facilities for persons with developmental disabilities.  If the objective is to move out all the individuals, there is a need to know about their characteristics, physical, behavioral, etc. in order to find suitable placements.  Administrative and clinical data would be a good source for this information. This isn’t necessarily a survey type activity.  Another example would be the kind of infromation a manufacturer of prostheses or wheelchair needs in order to be prepared to produce appropriate equipment.   That is why equipment is usually custom made and creates increased cost, since clients are never the same height, weight, have other complicating comorbidities, etc. 

## Part A – Y Axis

- Within the two basic components the Y axis represents a variety of categories of purposes for which data may be collected including:
- Equalization of Opportunity
- Financial Support
- Needs Assessment
- Prevention
- Research and monitoring

## Purposes at the Individual Level : Examples

*Equalization of opportunity* at the individual level is associated with providing access to services that will level the playing field for persons with limitations. Data provides information that will reflect needs of an individual or group of individuals.
- Personal assistant services.
- Advocacy training.
- Access to legal services.

**Notes:**
Use example of closure of institutions where a census of the institution is necessary in order to provide the information that planners will have to act on.  So that it is important to understand the individual combinations of problems and other specifics in order to accomplish the transition.  In the same way, a manufacturer of prostheses of assistive devices needs to know what capacities need to be built into a device in order to know the design problems, costs, etc.  Knowledge of how many persons have amputations doesn’t provide the specific information that is necessary to conduct a business.

## Population Level Purposes

*Needs assessment* at the population level provides information to assist with policy development and decisions about issues on a broader scale, such as:
- Accessible transportation
- Location  and types of rehabilitation
- Housing units

## Part B – X Axis

- In the first section of the Measurement Matrix the elements of the X axis represent the components of the ICF as translated into measurement language or regularly used elements of disability measurement.
- Environment elements represented by.
- Immediate physical world and social world measures.
- Assistive technology which provides accommodation.
- Participation elements represented by.
- Involvement in social role activities such as those associated with work, family and recreation. Participation implies taking on social roles.

**Notes:**
I have also included a glossary of definitions of the terms used in the matrix – while the ICF is used a a theoretical basis for the development of the matrix, the language of measaurement is used to describe what is measured. There amy be some lack of direct relationships between the two – that is yet to be worked out.

## Part B – X Axis (continued)

- Activity limitations represented by
- Tasks or the substructure elements of role participation
- Body and structure elements represented by
- Functional limitation measures that reflect abilities to coordinate the body and structure to accomplish tasks
- Impairments or pathology represented by indicators of conditions or residual damage to body structure.

## Part C – Z Axis

- The second table, Part C, contains the Z axis.  Part B reflected characteristics of the individual and their situation.  In Part C, most of the units are associated with characteristics of the question or further characteristics of the elements of Part B.
- Duration of a circumstance.
- Number of categories included in the response choices.
- Specificity of items

**Notes:**
This table represents details of the questions themselves or of the qualities identified in Part A.

## Taking a Closer Look

- Each different Y-axis general purpose category is explained briefly.
- Equalization of Opportunity – In the population context refers to the development of programs to improve life circumstances.
- For each example of a purpose category, the relevance of each type of ICF category is briefly explained across the row.
- Purpose of measurement to protect civil rights  (see page 3) – 5 types of indicators are relevant for measurement.

**Notes:**
Example is from page 3

## Examining a Cell from Parts A and B

- Participation

- Financial Support

- Major role participation is the concern here, can the person be self-supporting

## Adding Part C to Parts A and B

- Participation as related to  Financial Support

- Duration

- How long has the work role limitation lasted?

## Examining a Row – Parts A,B&C

- Identifying the research question tracking the success of implementation of civil rights legislation
- Part A - Equalization of Opportunity, Purpose 1
- Part B – All categories of substantive measures are seen as contributing to information needed for policy formation and population trend monitoring
- However, impairment if the only type of measure referred to in the legislation itself
- Part C – Severity level is a characteristic of the measure to consider. For financial support is becomes an essential element, but for a civil rights measure, is it?

## Culturally Relevant Subheadings

| Population Data | How Internationally Compatible are Concepts? |
| --- | --- |
|        Needs Assessment
       Purposes | Generally an internationally compatible purpose |
|             Transportation | The examples provided here are based on the U.S.
 |
|             Nursing Home Beds | How relevant are they elsewhere? |

**Notes:**
I want to point out that the examples used in the matrix are limited by my experience and need to be supplemented so that we have a broader representation of more cultural diversity.

How relevant elsewhere – transportation can be a donkey or a jet – is the idea of transportation as a problem compatible?

We tend to farm out our care of persons because of small nuclear families and working women. Is this problem limited to developed countries.

## Translating the Matrix into an International Tool

- Are the generalized purpose categories (Y-axis) universal?
- What can be added?
- Should we limit the matrix to the population aspects for international purposes?
- What concepts or characteristics (X-axis) do we want to include? Are some aspects of the ICF unsuitable for survey use or for international use?
- Are there international differences that would impact on question formats or characteristics.

## Looking Toward the Future

- Do we want to identify 1-2 purposes that a general measure can satisfy?
- Do we want to identify the questions we have, from all sources, that address those 1-2 purposes and select those that appear most promising?
- What other steps can we take to narrow this search?