Tele-Empowerment for Health and Wellness Project

Principal Investigator: Lex Frieden, M.A.,
Independent Living Research Utilization
Time Frame: Years 1 - 5

INTRODUCTION

The purpose of this research dissemination project is to provide consumers with information by which they may increase their understanding of and motivation to improve their quality of life.

Staff of the Center and other researchers in the disability and rehabilitation fields make presentations on their research activities to an audience of people with disabilities, family members, independent living and vocational rehabilitation personnel, disability organizations, policy makers, and other non-researchers who are stakeholders in the research. Internet-based technology is used for delivering the information. It involves:

  1. Audio-streaming and captioning of a live presentation - As a presentation is made, it is audio-streamed over the Center's Web site. To accommodate audience members who are severely hearing impaired, text of the presentation is displayed by means of real-time captioning.

  2. Making the presentation available via archive to individuals unable to attend in real time - Following the presentation, the audio is archived along with the text and any accompanying 'handout' material.

  3. Establishing a follow along discussion forum on the topic - A discussion forum/newsgroup is established for a four-week period for interaction among audience members and the presenter.

TRAINING GOALS

Objective 1: Develop empowerment topics and materials
Objective 2: Recruit participants
Objective 3: Conduct training
Objective 4: Evaluate project, document and disseminate procedures

METHODS

Objective 1: Develop empowerment topics and materials

From the beginning, we have had overwhelmingly positive responses from researchers when asking them to present on their research on health and wellness topics to an audience of consumers and other non-researchers. To date, 25 presentations have been made (see list below). Each presenter is provided with a set of Web cast guidelines which includes the following note:

Remember that one of the objectives of the presentation is to make clear to non-researchers how research studies lead directly or indirectly to people with disabilities living independently and higher quality of lives. So, any explanation of the reasons which lead to your study and how you selected your research questions/hypotheses would be very useful.

The guidelines also include notes on specific accessibility issues which arise when presenting over the Internet. For instance, the presenter is reminded to provide a narrative description of a chart or table and to speak slowly so that people who are reading the captioning can also read the handout being referenced.

Objective 2: Recruit participants

An announcement for each presentation is e-mailed to some 3,500 individuals and organizations in the independent living field, state and federal rehabilitation agencies, NIDRR-funded research programs, disability rights organizations, and disability-specific organizations.

Since one of the key factors to participation is comfort using the technology, each announcement also includes instructions to participants new to Web casts for connecting to the Web site, obtaining and using Real Player streaming software, downloading handouts, etc.

Objective 3: Conduct training

Every effort is made to make each presentation accessible to people with disabilities. For people who are deaf or hard of hearing, each presentation includes real-time captioning. For people with visual impairments, all materials used in the presentation are posted electronically in formats which can be used with speech synthesizers and/or enlarged to legible type size.

Objective 4: Evaluate project, document and disseminate procedures

For each presentation, participants are asked to complete an evaluation form which can be done on line or downloaded and returned by e-mail. Some questions address usefulness of the information and the quality of the presentation. Others seek information on users’ experience with the new technology for delivering information, such as any problems connecting to the Web site, quality of sound, accessibility impediments with handouts or captioning, etc. Responses from the evaluation have been used to make refinements to Web cast procedures.

A redundant method for tracking traffic is used, including a report of users provided by our Web server, a count provided by the Baylor College of Medicine department assisting with the Web casts, and a count provided by a freeware program which we put on the Web site.

Experience with the early Web casts have led to development and refinement of a set of procedures on doing Web casts. These include

IRC and Telnet -- Good Options for Screen Reader Users
http://www.bcm.tmc.edu/ilru/online/telnet.html

Beginner Information for Participating in On-Line Chats
http://www.bcm.tmc.edu/ilru/online/begin.htm

Chat Etiquette
http://www.bcm.tmc.edu/ilru/online/etiquette.html

Frequently Asked Questions about the ILRU Web Casts:
http://www.ilru.org/online/FAQ.html

  • I don't hear anything.
  • What is buffering?
  • Can I Control the buffering?
  • How do I get the most current version of RealOne Player?
  • Nothing happened when RealOne Player appeared on my screen.
  • Using volume control
  • Why can't I use my Media player?
  • Why do an evaluation?
  • How do I configure my web browser to work with RealOne Player?
  • How do I install RealOne Player?
  • I can't connect--too many people on line?

RESULTS

As noted, 25 Web casts have been presented to date (2003) which address health and wellness subjects. These include:

Risk Adjustment: A Field Guide on Arcane and Little Known Facts presented by Sue Palsbo on Wednesday, February 26, 2003

Self Determination: A Transfer of Power, the Realization of Freedom presented by Tom Nerney on January 22, 2003

Information and Resources for Promoting Affordable, Accessible, and Integrated Housing presented by Marilyn Kirby and Bruce Darling; moderated by Jay Klein, on December 16, 2002

Disability Literacy for Health Plans presented by Sue Palsbo, Ph.D. on December 4, 2002

Full Participation in Independent Living: Are We Making Progress? presented by Glen White, Ph.D. and Dot Nary, M.A. on November 20, 2002

Physical Activity & Independent Living: What's the Connection? presented by Dot Nary, M.A. and Katherine Froelich Grobe, Ph.D., on October 23, 2002

Access to Health Care Services for People with Disabilities in Managed Care and Fee-for-Service Health Plans presented by Phillip W. Beatty and Thilo Kroll, Ph.D. on October 2, 2002

State Legislatures and Olmstead: What's New in 2002 presented by Jo Donlin and Barbara Coleman on November 6, 2002

Leveraging Olmstead in a Difficult Budget Environment presented by Allan Bergman and Tony Records on October 7, 2002

Community First! Getting/Keeping People with Disabilities Out of Nursing Homes and Other Institutions presented by Bob Kafka on September 25, 2002

State Legislatures and the Olmstead Decision: "What's the Latest?" presented by Johanna Donlin and Wendy Fox?Grage on July 17, 2002

State Laws Protecting the Rights of People with Disabilities presented by Aaron McCullough, JD on August 7, 2002

The Power and Scope of Section 504 of the Rehabilitation Act - Using It to Advocate for Your Rights as a Person with a Disability presented by Brian East, August 12, 2002

An Overview of Health and Health Care Issues for People with Disabilities presented by Phillip W. Beatty, MA, and Gwyn C. Jones, MEd, MSW, PhD on July 31, 2002

Health Promotion and the Prevention of Secondary Conditions in People with Disabilities presented by Margaret A. Nosek, Ph.D., Beth Mastel-Smith, RN, MSN, and Heather Taylor, Ph.D. on July 24, 2002

Top 10 Barriers to Quality Health Care for Women with Disabilities presented by Margaret A. Nosek, Ph.D. and Carol Howland on April 24, 2002

Violence Against Women with Disabilities: Findings from Studies Conducted by the Center for Research on Women with Disabilities - 1992 - 2001 presented by Carol Howland on February 27, 2002.

Health Care, Disability and the ADA and Section 504 of the Rehabilitation Act presented by Wendy Wilkinson on December 5, 2001

Health and Wellness: Facilitators and Barriers presented by Laurie Powers and Michelle Putnam on November 28, 2001

Physical Activity, Motivation and People with Disabilities presented by Maria Kosma with Brad Cardinal and Jeff McCubbin on November 21, 2001

Legal Protections in Managed Health Care: A Focus on Additional Protections offered by the States presented by Wendy Wilkinson on Wednesday, November 7, 2001

Application of the Concept of Health & Wellness--From Academia to Real Life presented by Carla Culley on Wednesday, October 31, 2001

Barriers to Health Care: Findings From Consumer Focus Groups presented by Pamela Dautel on Wednesday, October 24, 2001

CONCLUSIONS

We have been overwhelmed by the response of researchers willing to make presentations geared to consumers and other non-researchers. Unmistakable has been their appreciation of the need for such presentations as well as their interest in communicating their findings to this community of stakeholders. Also, we have been pleased by the interest shown by people in the independent living field who have participated as audience members. For instance, on days we have not scheduled presentations, we frequently receive telephone calls asking when the Web cast will start.

IMPLICATIONS

Research

  • What factors keep people from participating in Web casts (lack of time, lack of interest, not aware of event, insufficient equipment, dislike of computer and Internet-related technology, etc.)?

Policy

  • Promoting programs that provide computer equipment to people with disabilities who cannot afford it.

  • Promoting programs that underwrite costs of Internet connections for people with disabilities who cannot afford it.