Response to Health Care Access Panel

Janna Starr

I come from the world of advocacy and the world of policy, so I'm going to kind of go from that slant. Dr. Suzuki's literature review is absolutely stunning, probably the second literature review I've ever seen of that caliber. People have to know the system and that's been a common theme throughout all the presentations today. And there's so much more to know now than there was 15 years ago. You remember in the early1990s, President Clinton wanted to have health care reform. And to make a long story short, we got managed care, which presented a tremendous challenge.

Lack of appropriate insurance is as big a problem today as it was when health reform first started coming along. Nobody is surprised to see transportation on everybody's list of the biggest barrier for people with disabilities to participating in many aspects of life, let alone good health care. Just look at Dr. Buckley's surveys. You've got to survey both people with disabilities and clinicians and in a collaborative sort of way, in recognition of the individuality of clinics. I'm not surprised that the staff of the clinics was enthusiastic and cooperative in your pilot. I think these people really want to do what's right and unfortunately, a lot of people are starting at square one.

I love PATHS. I love the workbook you based it on. It's from one of the most thorough and brilliant people and she's done it again with this little book. "Making Preventive Health Care Work for You" is online, all 104 pages of it. It's a dynamite document. You are supporting women to manage their own health. Navigating the system is the biggest challenge of all. I really look forward to seeing your data and then the challenge is to get people to use these.

As I sit on the fence between advocacy and research and policy, I know that it's got to be translated down the way somewhere. I spent the last five years in Washington, D.C. before I moved back to Oregon working around the standards for the ADA developed by the U.S. Access Board, one of the most thorough organizations in Washington, D.C. Magnificent people, magnificent minds. But they can't do anything that doesn't get everything down to the gnat's eyebrow. They will make a checklist for you but it's still 45 pages along. Almost everything that's done by the Access Board has to be boiled down by somebody like Dr. Drum.

One of my old bosses that I worked for for seven years Alan Bergmann, and a great mentor of mine always, says data drives policy. Policy drives funding and funding drives what services are put before us. Whether it's private or in the government atmosphere. Ultimately the level dictates the ultimate level of accessibility that we will be living with down road. Thank you for all of your hard work, your contributions to this area, to this field of endeavor and thanks for letting me come today.