Diane Nelson Bryen, Ph.D., Temple UniversityYvonne Gillette, Ph.D., University of Akron

Murdo Dowds, Ph.D., Spaulding Rehabilitation Hospital, Harvard Medical School

Advancing Cognitive Technologies through Multi-Site Collaboration

RERC-ACTState of the Science Conference

October 26, 2007

Background NIDRR - DRRP focus

♦ Assistive Technology♦ Cognitive Disabilities♦ 5- years with $300,000 per year

Collaboration♦ Multi-site♦ Disability and age expertise♦ Research & dissemination expertise♦ Sharing the work

Collaborators University of Akron, School of Speech-

Language Pathology - Children and adolescents with TBI and Intellectual Disabilities

Temple University, Institute on Disabilities - Adults with Intellectual Disabilities

Moss Rehabilitation Center - Adults with TBI (Year 1 only)

Spaulding Rehabilitation Hospital, Harvard Medical School - Adults with TBI

Brain Injury Association of America – Dissemination and Policy

Collaboration

structured, recursive process where two or more people work together by ♦ building consensus ♦ sharing knowledge♦ sharing the labor……..♦ toward a common goal

Goals of the AT & CD Collaborative -- 5 Years

Identify trends in use of generic technologies: electronic organizers (PDA), cell phones, and later smart phones among children and adults with TBI and ID;

Conduct usage trials to determine effectiveness of using generic electronic memory aids among children & adults with TBI and children & adults with ID;

Provide consumers, manufacturers, and other stakeholders with information about the enhancers and barriers to the use of PDAs, cell phones, and the WWW;

Disseminate catalog of relevant electronic devices to

consumers and caregivers,

Why Generic Technologies NOT specialized AT?

It is in the public domain - we all use it!

The prices are more reasonable for purchase and replacement!

These devices are more socially acceptable!

The adaptations needed and that should be recommended to manufacturers will aid all of us!

Collaborative Methodology

Jointly developed the survey of use of generic technologies to enhance memory and organization: questions, sampling, method, and analysis

♦ Conference calls, face-to-face meetings, work groups lead to survey research that included:

Larger sample size for overall analysis Ability to address children and adults Ability to address TBI AND Intellectual Disabilities Inform our approach to the in vivo usage trials Resulted in individual research findings and joint findings Ability to immediately disseminate findings through collaborators to TBI and

ID stakeholders

Collaborative Methodology Jointly developed the in vivo usage trials that were

common across all three sites

♦ Conference calls, face-to-face meetings, work groups lead to survey research that included:

Larger sample size for overall analysis (35 per site) Ability to address children and adults Ability to address TBI and Intellectual Disabilities Data that can be analyzed by individual site, individual age group, individual

disability group, and across all sites (ages and disability groups) Ability to immediately disseminate findings through collaborators to TBI and

ID. stakeholders

Highlight Some Results/Outcomes

Catalog on BIAA Website - approximately 20,000 hits for catalog

Highlight Some Results/Outcomes

Town Hall Meeting Webcast - reaching 312 sites

Highlight Some Results/Outcomes – Survey Findings

Strategies for Remembering Contact Information

MR Adult TBI Adult Children

Do it in my head 30% 21% 47%

Write it down 21% 24% 9%

Paper system 19% 38% 19%

Someone does it for me

25% 0% 17%

Computer 4% 4% 2%

Electronic Organizer

0% 4% 2%

Other 1% 10% 2%

Highlight Some Results/Outcomes – Survey Findings Technologies Used

Technology Used ID Adults = 3.98 Children = 5.61 TBI Adults

Telephone 89% 76% 93%

Cell Phone 28% 32% 49%

Remote Control 83% 91% 91%

Computer 41% 85% 71%

Internet 25% 59% 43%

Electronic Mail 19% 43% 43%

Electronic Organizer

11% 11% 8%

ATM 21% 0% 50%

Video Games 37% 79% 28%

Pocket Video Games

19% 56% 11%

Paper 10% 2% 9%

Walkie-Talkie 0% 25% 3%

Cb Radio 7% 8% 0%

Highlight Some Results/Outcomes – Survey Findings

Important Technology Features

Kids TBI / ID Adults ID Adults TBI

Can store lots of information 59%

Battery lasts a long time 74%

Can store a large amount of information

64%

Battery lasts a long time 51%

Good technical support 70%

Battery can be recharged 63%

Beeps or flashes so you can find it

47%

Voice output 69% Has technical support, like a help

line 61%

Good technical support 45%

Large, easy to see display 68%

Simple to learn how to use 60%

Simple to learn 45%

Simple to learn 45%

Battery lasts a long time 58%

Highlight Some Results/Outcomes - FindingsWidely Disseminated Across Disability & Age Groups

Gillette, Y. & DePompei, R. (2004). The potential of electronic organizers as a tool in the cognitive rehabilitation of young people. Neurorehabilitation, 19(3), 233-243.

Hart, T., Buchhofer, R., & Vaccaro, M. (2004). Portable electronic organizers vs. memory and organizational aids after TBI: A consumer survey study. Journal of Head Trauma Rehabilitation, 19(5), 351-365.

Carey, A.C., Friedman, M.G., & Bryen, D. (2005). Use of electronic technologies by people with intellectual disabilities. Mental Retardation, 43(5), 322-333.

Bryen, D., Carey, A.C., & Friedman, M.G., &. (2007). Use of cell phones by adults with intellectual disabilities., Mental Retardation, 45(5).

Gillette, Y.& DePompei, R. (in press). Do PDAs enhance the organization and memory skills of students with cognitive disabilities? Psychology in the Schools.

Highlight Some Results/Outcomes – In vivo Usage Trials: Findings

Students (with TBI & ID) and adults with TBI benefited more from the electronic devices than the paper planner or baseline; less clear for with adults with ID

High between-subject variability for all groupsHigh between-subject variability for all groups Students (TBI & ID) in least restrictive environments and adults

with ID not in sheltered workshops did the best Effective Use of electronic organizers NOT dependent on IQ

within age and disability groups Better performance with Palm over Dell, especially for adults

with TBI

Highlight Some Results/Outcomes -

Improving Access to Cell Phones Based on survey of 83 adults with Intellectual Disabilities1

♦ Larger buttons♦ Menu prompts♦ Voice activation and voice output

Supported by Trace Center and CTIA2

♦ Adjustable scroll speed ♦ Standard icons♦ Automatic answer & automatic redialing♦ One-touch dialing♦ Picture ‘caller identification’♦ Voice dialing

Voice messaging3

1 Bryen, D.N., Carey, A. & Friedman, M. (in press). Use of cell phones by adults with intellectual disabilities. Mental Retardation.

2 http://www.AccessWireless.org/product/consumer_access_guides.htm

3 Source: The Wall Street Journal, 09/29/2005

Highlight Some Results/Outcomes -

Improving Access to Electronic Organizers - Features Recommendations for improvements in features

and functions Source: 32 adults with Intellectual Disabilities (ID) and 35 children

with ID or Traumatic Brain Injury (TBI) - also support personnel Feature Recommendations

♦ Use of icons to augment print♦ Louder volume for alarms♦ Continued sounding of alarm until deactivated♦ Adjustable screen brightness and contrast to aid reading the screen♦ Improved battery life♦ More accessible & usable manual and troubleshooting guide♦ Voice output to augment print (text to speech and speech to text)♦ Larger print and bigger icons♦ Internal back up of memory within the device, not just sync to computer♦ Improve wear ability♦ Add a locator-special tone (quite loud) to alert user to get device in a.m.

Highlight Some Results/Outcomes - Improving Access to Electronic Organizers: Functions

Function Recommendations♦ Add more fun features on standard device: A balance

between “fun” and “functional” keeps users motivated♦ Add a phone function at a reasonable cost

(accessible and usable smart phones)

Use pictures, graphics, icons and symbols to augment text.

Simplify writing/reading Use clear and simple text with commonly-used words. Use short, simple sentences. Maximum 20 words per sentence. Reduce amount of reading. Limit text on page. Use short paragraphs, bullets or numbers rather than continuous prose. Use active verbs Say ‘we will do it’ rather than ‘it will be done by us.’

Use consistent navigation and design on each page.

Use headings, titles, and prompts rather than long paragraphs.

Improving Web Accessibility for People with Cognitive Disabilities1

Support screen readers. Use alternate text tags.

Use larger fonts, fonts in minimum 12 pt or 14 pt. Some guidelines suggest 14 pt, 18 pt or 20 pt.

Use uncluttered, simple screen layout. Present one idea at a time.

Maintain white space. Use one-column layout with generous margins on each side.

Make web site customizable. Provide for individual choice for items Font size, placement of navigation, contrast, color,

large print and sound.

Use navigation aids.Exit, home, help, next page buttons on every page.

1These features are based on an extensive analysis of twenty (20) of the existing Web Design Guidelines for Cognitive Disabilities. Only the recommendations where there is at least 25% agreement on the feature have been included. Mark Friedman & Diane Nelson Bryen (2005). “Web Accessibility Design Recommendations for People with Cognitive Disabilities.” Institute on Disabilities, Temple University.

What Have We Learned?

Electronic aids are useful for some persons with memory/organization problems as a result of cognitive disabilities.

Evidence based studies, such as the ones we have conducted, are emerging to support use.

Generic devices may be most accessible and useful♦ Handhelds (Mobile Devices): PDAs, smart phones♦ Computer based devices: internet, e-mail,web-based (Health

Assistant)

What Have We Learned?

There are functions/features of generic devices that might need to be altered to facilitate usability/universal access

Generic devices have appeal because♦ Socially more acceptable♦ Prices are lower than “dedicated devices”♦ General public understands use more easily

What Have We Learned?

There are barriers Cost

Perceived Lack of Need

Lack of Training and Supports

Lack of Accessibility in Design Features♦ Cell phones/smart phones♦ PDAs♦ Web

What is Not Known?

Who within the larger population of folks with cognitive disabilities can benefit?

Is there a larger base to consider? Of interest to manufacturers?♦ 22 million people with cognitive disabilities

• TBI• Intellectual Disabilities (aka Mental Retardation)• Dementia

♦ Global income of people with disabilities exceeds $1 trillion (2001)

♦ Annual discretionary income of Americans with disabilities exceeds $175 billion

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What is Not Known?

What factors besides the TBI or ID are significant?♦ Motivation♦ Supports♦ Opportunity♦ Prior experience with technology♦ Digital divide issues♦ Does exposure to technology at younger ages make a

difference?

Who was Missing from or Under-represented at the Table?

Manufacturers of Devices♦ Our discussions with them revealed most of what we are asking

for is already available or doable—just not readily accessed or cheap to do (White Paper available from DePompei)

Vendors♦ Businesses already have software/ programs to make what is

recommended by researchers do-able.

More people with disabilities, families and advocates

Answers will be found through collaborations….. among

Manufacturers of Devices

Researchers and Developers

Consumers and advocates

Questions???