JACKSON HEIGHTS, NY – As grassrooters in a consumer organization with a strong focus on access to medical equipment, we hear too many demoralizing stories where people with disabilities have been denied access to vital equipment. It seems like policy makers don’t understand the real value of wheelchairs or diabetic supplies.
Sometimes our efforts to “educate” policy makers about how the right type of equipment decreases overall health expenditures, and increases mobility and independence, feels like shouting into the wind.
Also as grassrooters, we are not discouraged. Historically, when speaking out against the status quo, especially for the rights of a marginalized community, advocates may face indifference from people of power.
Yet, in this country we have the freedom to speak, a rich disability history, and now of course the web and social media. UsersFirst and United Spinal have communicated with hundreds of people with disabilities regarding issues like, but not limited to, competitive bidding, complex rehab technology, and the in-the-home rule.
Recently, UsersFirst mobilized wheelchair users in 34 states and the District of Columbia to meet with congressional representatives to encourage them to sign on to a bill that will increase access to good wheelchairs, otherwise known as “complex rehab technology.” The bill is titled, Ensuring Access to Quality Complex Rehabilitation Technology Act of 2013 – HR 942 in the House and S 948 in the Senate.
Our outreach efforts continue to broaden as the message spreads that access to independence, employment, and the community—essentially livelihoods—are threatened. The Americans with Disabilities Act, while historic and robust, does not address access to equipment. The community of people who use wheelchairs is diverse, and mobility is a strong common denominator.
Another important issue to our members, registrants, advocates, and partners is Medicare’s competitive bidding program. The negative affects of this program are becoming evident as we review feedback, via social media, email, calls and our chapter network. We work closely with respondents to identify how competitive bidding is limiting their access to quality medical products and service.
It is energizing to witness mobilization and empowerment in action as we receive daily communication from advocates across the country who are scheduling congressional appointments, preparing for their meetings, and coordinating with other advocates in their states.
Grassrooters work in tandem with the United Spinal DC-based policy department bringing a strong and united consumer voice to policy makers. For example, along with other consumer groups and industry partners, we are planning a meeting with CMS (Medicare) in October about competitive bidding and concerns about access to wheelchairs.
If you are someone who believes Americans should be able to receive the right products and services so they can live the lives they choose, please stay connected by visiting the UsersFirst Web site at www.usersfirst.org, sign up, recruit others and, for fun, like us on Facebook. .(https://www.facebook.com/UsersFirstAlliance).
Ann Eubank, LMSW, OTR/L, ATP, CAPS, is vice president of Community Initiatives for UsersFirst, a program of United Spinal Association.