At the National Council on Disability Summit – Summing Up, and Top Three Take-Aways

[Jon Kuniholm]

I was fortunate enough to be able to attend the NCD Summit in Washington, DC this year. I have never seen a more diverse collection of people united in their desire to overcome their collective challenges, and celebrate the progress that has been made in government's commitment to helping them do it in the 20 years since the passage of the Americans with Disabilities Act. Tom Perez, Assistant Attorney General for Civil Rights quoted the late Senator Ted Kennedy yesterday in saying that the ADA was “a bill of rights for the disabled, and we are a better and fairer nation because of it.”

While there was some celebration of what has been accomplished so far, there has been an acknowledgment that we are by no means finished. The forward-focused portions of the Summit were dedicated to “living, learning and earning,” and with a recognition of the mechanisms such as policy that must be implemented in order to achieve the objectives.

At the Summit wrap-up, one consistent theme that has emerged is one of an embarrassment of riches of opportunity for action. If the needs of people with disabilities have one thing in common, it may indeed be the diversity of these needs. Rather than simply despair in the lack of obvious focus emerging from discussions over the last couple of days, I think that this observation in itself represents a call to action to address the need to improve a single area—communication and organization to address this breadth of needs and issues.

As the experience that we have had on Open Prosthetics over the last several years suggests, there is a great need in our underserved communities for improved communication and organization. And our success indicates not that we have done a great job, but of the dearth of similar opportunities elsewhere. Open Prosthetics itself is but one of a number of underserved communities who could substantially benefit from the development of common tools for us to better interact across stakeholder groups and with all of the information available on the internet from the government and other sources. Because of the poor track record of the government in providing access to its own and other information, I despair in anyone's ability to create “one-stop shopping” or the perfect “internet portal.” I believe instead that we should provide the ability to create niche-focused “Web 2.0 'Hubs'” that better organize and connect these diverse sources of information to the equally diverse stakeholder groups who serve them. Most importantly, taking advantage of the true promise of Web 2.0, is to empower individual users to create, identify and add value to this content.

This brings me to the first take away mission for NCD from the summit: (1) EMPOWER CONSTITUENT COMMUNITIES AND INDIVIDUALS WITH DISABILITY WITH THE SOCIAL NETWORKING INFRASTRUCTURE NECESSARY TO ORGANIZE THEMSELVES AND THEIR CONNECTIONS WITH INFORMATION AND OTHER STAKEHOLDER GROUPS. Open Prosthetics has made the decision to join with ACOR and the Chordoma Foundation to form the first parts of a hopefully much larger group of underserved patient communities that have pledged to begin development. See more on this initiative, which we have agreed will be Drupal-based, and modularly designed the incremental improvements around Drupal modules in future posts.

I am pleased that we had an apparent consensus by applause around a second possible take-away mission for the NCD. Prosthetics research is not unique among disability research focuses in that it is conducted by a slew of government agencies, and program managers at one agency may or may not be aware of parallel or redundant efforts (or a total lack of efforts) by other players. While in a perfect world we might wish that NCD had control of these purse strings, we all know that this will never happen. What power might there be, however, in simply identifying all of the purse strings? I propose a second take-away mission to be (2) USING NEW SOCIAL TOOLS DESCRIBED IN (1) ABOVE, CREATE A RESOURCE ORGANIZING INFORMATION ABOUT GOVERNMENT-FUNDED RESEARCH FOCUSED ON DIFFERENT DISABILITY COMMUNITIES THAT CAN BE SORTED, EXPLORED AND ADDED TO BY INDIVIDUALS. By becoming the best source of information both retrospectively and prospectively, this resource can influence the direction of future research targeted toward individuals with disability. More and better information about the successes and failures, results and extent of government research support is the sunshine necessary to better inform the people and agencies that make funding decisions, as well as the institutions who apply for the support.

While it came up only in the universal design breakout session that I attended, I would like to highlight a third very important theme. The technology and infrastructure that is created through the government funding described in (2) above needs to have the maximum impact on the targeted communities. The third potential take-away mission for the NCD I believe should be to (3) USING THE MEANS IN (1) AND (2) ABOVE, PROSPECTIVELY ENCOURAGE THE CREATION AND MAINTENANCE OF OPEN STANDARDS AND OPEN SOURCE HARDWARE AND SOFTWARE TECHNOLOGIES CREATED THROUGH GOVERNMENT FUNDED RESEARCH. RETROSPECTIVELY, EXPLORE LEGAL TOOLS SUCH AS BAYH-DOLE MARCH-IN RIGHTS THAT MIGHT BE USED TO MAKE GOVERNMENT-FUNDED TECHNOLOGIES THAT HAVE FAILED TO REACH CONSUMERS OPEN SOURCE OR LICENSE-FREE. Using the transparency regarding funding and the performance of projects, likely targets could be identified, and NCD could work with the Department of Justice, advocacy groups and pro-bono programs to help create petitions. The websites described above could be used to disseminate the IP and technology to the relevant communities.

I will elaborate on each of these three take-away missions in more detailed posts, and look forward to working with interested folks to help realize these goals.

Jon Kuniholm