On Dec. 14, 2000, I attended a HealthCoverage 2000 conference in Los Angeles, representing the California Disability Alliance (CDA). Apparently, conferences like this were being or had been held in several cities around the country.
Presenters at this conference included many key players - including a woman who was working on health-care coverage for Gov. Davis's office; Republican Assembly Member Keith Richman, who has introduced a bill requiring coverage for children immediately after birth; Walter Zelman, head of the California Association of Health Plans (the HMO trade association); a representative from the SEIU Home Care Workers' Union; and Ron Pollack from Families USA.
Attendees included several people I have worked with on health-care issues from various organizations, including Health Access; some people that Jean Nandi (CDA founder/ Executive Committee Member emeritus) and I worked with on the California Universal Health Insurance Coverage Study; several health plan representatives - and two people (Margaret Belton from Pasadena, who is on the Area Agency on Aging Advisory Council, and me) who were using scooters.
Overall, the conference involved a lot of preaching to the choir, since virtually all of the attendees already agreed that coverage needed to be expanded, though they differed on how to achieve the goal. Unfortunately, the official program format really didn't allow for much effective give and take. However, I used the occasion to network with key people who are working on this issue and to raise the awareness of at least some attendees about disability-related coverage issues.
Both Margaret Belton and I tried to get the panelists to address or at least recognize that *under*-insurance (e.g., lack of coverage for prescription drugs or DME) should be considered part of the "uninsurance" problem. But there was no real discussion of the issue, and I'm not sure some of the presenters even understood what our questions were about. However, I know that at least some of the attendees understood, because they realized that my question on this subject hadn't really been answered.
My concern is that in the drive to expand coverage to more groups of people (which we clearly need to do), it must be remembered that people who technically have health insurance but aren't covered for what they need most (frequently a problem for people with disabilities) are, for key intents and purposes, uninsured, too.
I made this point privately to another conference presenter, former legislative staffer Lucien Wulsin, who more recently has been doing public policy work on expanding coverage for the uninsured. I used myself as an example of the problem. I am a Kaiser member (for which my husband and I pay - a lot - personally. But my plan *doesn't* cover prescription drugs or durable medical equipment (DME), like wheelchairs and scooters. And because I have MS, the reality of the private market is that I don't have the option of switching to a plan that *will* cover these items.
Wulsin seemed surprised to meet a real person in this situation! He said this generally is discussed only in theoretical terms and added that in order to get legislative or other policy action, we need to provide more real-life cases to demonstrate that the is a genuine problem.
If you have health coverage but there is a serious coverage gap, please let us know. It's important for us to make sure that in the effort to expand coverage to more people, the range of covered services needed by people with disabilities isn't reduced (especially since those services really need to be *expanded*)!
Finally, just for good measure, I made a point of telling several people from the sponsoring organizations that they really should have had at least one presenter with a disability perspective!
I don't know whether any of this will make a difference, but at least with two scooter users there, people with disabilities weren't completely invisible (as we often are at these kinds of events). We have a long way to go, however. We can't afford to let the system to continue treating people with disabilities as an afterthought or, even worse, as a troublesome "cost" to the system that must be "managed"!
P.S. Remember - if you have a serious gap in your health coverage, please let us know! You can contact me by e-mail at firstname.lastname@example.org. Please include at least your name and e-mail address. A mailing address and phone number would help in case we need to do follow-up.