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Making Materials Useful for People with Cognitive Disabilities

A key factor in successful dissemination and utilization is identifying the audiences you want to reach and knowing how they prefer to receive information. It is important to keep in mind that members of an audience are individuals with unique needs, although they may share characteristics with others in that group.

Some audiences may need alternate formats in order to benefit from the information you have to share, such as larger print, tactile or oral formats for people who are blind or visually impaired. Others may need a modification of the content in order to make use of the information. People with cognitive and developmental disabilities present a widely varied audience whose individual members may benefit from modified content, as well as alternate formats.

This issue of The Research Exchange provides an overview on modifying materials for people with cognitive disabilities; interviews with Tia Nelis, a self-advocate from the RRTC on Aging with Developmental Disabilities and with Laurie Powers, a researcher and Co-Director of the Oregon Health & Science University's Center on Self-Determination; tips and examples of modifications for print and electronic dissemination; and selected resources from NIDRR grantees and others. This issue was developed in collaboration with the Center for Human Policy's NIDRR-funded National Resource Center on Supported Living and Choice (Syracuse University). Bonnie Shoultz, Associate Director of the National Resource Center, conducted interviews and was instrumental in the planning and development of this issue.

Overview

People with cognitive disabilities reflect a range of unique abilities and needs across the lifespan. Data from the U.S. Census Bureau's 1997 Survey of Income and Program Participation (SIPP) identified 14.3 million people over the age of 15 with a mental disability, or 27 percent of 53 million people with disabilities overall (U.S. Census Bureau, 2001).

Within this group are people with developmental disabilities, learning disabilities, autism, acquired brain injuries, and diseases of aging such as Alzheimer's. Cognitive disabilities may affect a variety of intellectual and social functions, such as memory, concentration, perception, organizational skills, problem-solving abilities, language reception and production, among others.

With such a wide range of impairments and abilities, how does one know what sorts of modifications and formats will be most useful? The best way is to ask representatives of the people you intend the information to reach. This is facilitated by maintaining a dialogue and ongoing relationship with members of targeted audiences. Working with self-advocates throughout the research process will ensure that the research and its outcomes should be beneficial to consumers with cognitive disabilities. For NIDRR researchers using a Participatory Action Research model, such a relationship is established at the beginning of proposal and project design. Dissemination planning means thinking about the use of research results or outcomes at the early stages of project development.

The elements of effective dissemination (Westbrook and Boetel, 1995) should be examined to see how implementation might be modified to meet the needs of consumers with cognitive disabilities. The following represent areas important to dissemination planning and identify characteristics that should be tailored to fit consumers with disabilities.

User. Understanding the following user characteristics is necessary in order to tailor information appropriately:

  • User's readiness to change
  • Format and level of information needed
  • Level of contextual information needed
  • lierceived relevance to own needs
  • Dissemination media lireferred
  • Information sources trusted

Working with self-advocates will help researchers learn about the characteristics of users with cognitive disabilities. Clear and concise materials are needed, with expanded contextual information to help convey the content. Reading levels may be adjusted, and some users may prefer non-print media.

Source. Users' perceptions of these elements form the basis of their willingness to accept information from a specific source:

  • Perceived competence
  • Credibility of experience
  • Credibility of motive
  • Sensitivity to user concerns
  • Relationship to other sources trusted by users

Sensitivity to users and their relationship with other trusted sources will help convey credibility and competence of the source. An ongoing relationship with self-advocates helps establish you as a trustworthy and credible source.

Content. Consideration of these elements directs the choice of content to be disseminated:

  • Credibility of research and development methodology
  • Credibility of outcomes
  • Comprehensiveness of outcomes
  • Utility and relevance for users
  • Capacity to be described in terms understandable to users
  • Cost effectiveness
  • Research design and procedures

In order to be useful, the content must be presented in clear formats with appropriate terminology. A glossary may help to explain unfamiliar concepts in the content.

Context. Other factors in the environment impact the user's perception and acceptance of new information:

  • Relationship between outcomes and existing knowledge or products
  • Current issues in the field
  • Competing knowledge or products
  • General economic climate

The audience with cognitive disabilities may benefit from additional background information and contextual supports in order to increase usability.

Medium. Consider these factors in determining how the content is to be packaged for presentation to users:

  • Physical capacity to reach intended users
  • Timelines of access
  • Accessibility and ease of use, user friendliness
  • Flexibility
  • Reliability
  • Credibility
  • Cost effectiveness
  • Clarity and attractiveness of the information "package"

Potential users with cognitive disabilities can help identify the most appropriate media for specific outcomes to be shared. Other articles in this issue will describe specific modifications for printed material and electronic settings (World Wide Web, electronic mail).

Modifying printed materials

People with cognitive disabilities have a range of abilities to read and comprehend. There is no one all-inclusive way to ensure what is presented can be understood. To enhance readability, however, the information should be presented in clear, concise language. To make content clearer and more understandable, use shorter sentences, choosing common rather than complex words. Provide definitions of new or uncommon words that must be used. Be sure that concepts are presented separately and in a logical sequence. Additional contextual material and explanations may be needed to facilitate understanding. Field-testing with self-advocates and others with cognitive disabilities will show what level of readability is appropriate.

The readability of text can easily be checked. For example, Microsoft Word™ software has the Flesch-Kincaid Reading Scale and the Flesch Reading Ease scores as part of the Spelling and Grammar features. The Reading Scale uses the average number of syllables per word and words per sentence to determine the reading grade level up to the 12th grade. The average reading level of the general population is around the 8th grade, so materials for people with cognitive disabilities will be more easily understood when written at the 4th-5th grade level. The Reading Ease score is based on a 100-point scale, with higher numbers indicating greater ease of comprehension (METRIC, n.d.).

To turn on the Readability feature in Word™, go to the Main Menu and under "Word," select "Preferences." There, select "Spelling and Grammar." Under "Grammar," check the box for "Check grammar with spelling." Next, check the box for "Show readability statistics." Then click "OK." At the end of a spelling check, a box will provide the following readability statistics:

  • Word, character, paragraph, and sentence counts
  • Average number of sentences per paragraph, words per sentence, and characters per word
  • Percent of passive sentences (lower is better)
  • Flesch Reading Ease score (0-100) (higher indicates easier)
  • Flesch-Kincaid Reading Scale (up to grade 12)

Other changes in text presentation can help readability. Breaking text into shorter sections, each with a specific point, helps comprehension. Using bold headings and numbering the items, rather than using bullets, also clarifies the content. A question-and-answer format is more easily understood than straight narrative. Occasional checkpoint questions can be included, to ensure the reader understands the material already covered before new ideas are presented.

Use pictures or graphic images to demonstrate or depict points presented in text. The images should be closely related to the content and carry meaningful information. Take care to ensure the document does not become cluttered with images. More pages, with less on each page, will make the document more reader-friendly.

Color can also be used to help separate points or to identify sections that go together. Use of color just to brighten a page might end up making it more distracting or confusing for some readers. See the related list of tips developed by self-advocates from the Milton Keynes People First organization.

Modifying documents on the Web

Many of the suggestions presented to make printed materials more readable and comprehensible can also be applied to documents that are presented on the World Wide Web. Multi-media files on the Web can help reinforce the printed words. For example, an audio version can be provided, where the words are read aloud.

Designers need to keep their pages simple and clear, without several frames or links that can take the reader to other areas where they may lose the thread of what they are reading. To help with navigation, use simple icons/colors to identify elements of the site or pages to be accessed. Keep navigation tools in the same place on each page. Consistency in design will guide the visitor.

The World Wide Web Consortium (W3C) receives funding from NIDDR as partial support for the Web Accessibility Initiative (WAI). The WAI's Education and Outreach Working Group is developing a document on "How People with Disabilities Use the Web"to provide an introduction to use of the Web by people with disabilities. The current draft illustrates some specific requirements of people with different disabilities, including cognitive and neurological disabilities, when using Web sites and Web-based applications. The draft describes scenarios, barriers, and possible solutions, and offers supporting information for the guidelines and technical work of the WAI. The final version may eventually be published as a W3C Note and maintained by the W3C. The current document is a W3C Working Draft: http://www.w3c.org/WAI/EO/Drafts/PWD-Use-Web/20010104

Another article in this issue describes Think and Link: E-mail for Individuals with Cognitive Disabilities. This NIDRR-funded project focuses on how people use E-mail and how to make E-mail more accessible for people with cognitive disabilities.

"Web Accessibility for People with Cognitive Disabilities: Universal Design Principles At Work!" is an article that discusses the process used by the NIDRR-funded ADA Insights project to develop print and Web-based documents on the Americans with Disabilities Act, specifically for people with cognitive disabilities.

These articles and others in this issue demonstrate the wide range of abilities and issues to address in modifying materials for people with cognitive disabilities. There is no single strategy to make information accessible, and useful, for all. Maintaining a relationship with self-advocates is key to being able to provide information in usable, understandable formats.


REFERENCES

Measurement Excellence and Training Resource Information Center (METRIC). (n.d.). Flesch Score (Flesch-Kincaid Grade Level and Flesch Reading Ease). Accessed Sept. 8, 2003. http://www.measurementexperts.org/term_pop.asp?ID=112

U.S. Census Bureau. (2001). "Nearly 1 in 5 Americans has some level of disability." Press release, March 16. Washington: U.S. Census Bureau, Public Information Office. http://www.census.gov/Press-Release/www/2001/cb01-46.html

Westbrook, J. D. and Boethel, M. (1995). General Characteristics of Effective Dissemination and Utilization. Austin: Southwest Educational Development Laboratory. http://www.ncddr.org/du/products/characteristics.html


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