E Health and Disabilities
Oakland, CA, April 4 - 5
40 people sat at a U shaped table in a very large room; the short side of the U had 10
Ed Penhout, Dean, UC Berkeley School of Public Health welcomed; then Judith Heumann;
Marilyn Hamilton, wheelchair designer and board member of the funder, CA Endowment (the
foundation created when Blue Cross was required to divest). Disability was
understood from the civil rights/human rights perspective. The goal of the summit
was to develop an e health agenda driven by people with disabilities. The keynoter
was formerly employed by the west coast Lewin Group and the audience gasped when she said
"wheelchair bound" and "incapacitated." She said the health care
paradigm is stalled, that consumers and technology will be the drivers, that physicians
know that paper records are not confidential, that it isn't privacy that is an obstacle --
if we can bank we can do medical records -- but that the biggest barrier is lack of
interoperability of the various medical systems and that HIPAA is a start. She drew
an analogy between orphan diseases, orphan drugs, and technology that might help only a
few people with disabilities would become orphan technology, no profit, no attention.
Universal design is a way to address that and Deborah Kaplin, WID, noted the
harm language can cause and cautioned against associating the word "orphan" with
technology. The keynoter's research says that the digital divide is mostly economic
(but I've heard people argue there is also a cultural divide).
There followed a number of brief presentations, laying the groundwork for the work
groups that will come later. June Kailes raised concerns about literacy,
translation, content. Bruce Bronzan is developing an on-line case management system
and Santa Cruz has invited him to give a demonstration. He's a former elected
official, a member of the CA assembly. He said that 20 e mails or
letters got attention, and when you get 1000, you stop and go home to your district to
speak directly to your constituents. Sean Ennis emphasized how important "doing
it right" is important to accessibility; good web design can become accessible to
voice output, speech recognition, ... . The CA e government site is fully accessible
and all the *main* page documents are at an 8th grade reading level; CA had a Director of
e government, Arun Babeti, a presenter I found fascinating. Total redesign budget
I spoke with the focus and brevity and density that I've learned here on the Internet,
and was well received.
Kaplan: The experience of aging is changing.
E health: information, support, local resources with significant consumer input and
disability specific perspectives.
An agenda for action steps was developed and I will post the web address when I have
At a smiliar mental health meeting, the major concerns were privacy and transparency.
Here the key issues were access and relevancy.
Web sites mentioned :
http://lila.ucla.edu - LA specific and interesting
example of community resources