Moving the HME Industry Forward

Legislative/Advocacy

Increasing Consumer Access to Complex Rehab

July 29, 2013

EAST ELMHURST, NY – Like many professionals in this field, I have been immersed in the community of people with disabilities for almost 30 years. It matters to me that my fellow citizens with disabilities have equal access to their lives.

The logos on our shirts may have changed a time or two, but not our commitment to facilitate increased independence for wheelchair users. We may also share the feeling of frustration when the “system” inhibits our ability to provide the most appropriate mobility equipment.

Some even describe it as maddening, being obliged to communicate inequitable insurance restrictions to the end user. We may even feel defeated realizing we have involuntarily and unintentionally become part of the “system” – the status quo.

Fear not, there is hope, great hope. This is why I love my teammates (stakeholders). We have been able to work within a flawed system AND push for change. We have collaborated, united our voices and challenged the system from the local level all the way to Washington, D.C.

This collaboration has made it possible for UsersFirst to mobilize wheelchair consumers and advocates to take action and stay engaged in the push to increase consumer access to complex rehab technology (CRT).

Just recently, my boss, Paul Tobin, president of United Spinal Association, and a wheelchair user, along with Don Clayback, executive director of NCART, attended a Congressional briefing to discuss the essential nature of CRT, and the importance of creating a separate category within Medicare.  Also present were as many wheelchair users the room would accommodate.

Everyone was informed and willing to illustrate how CRT is critical for them to live the lives they choose. This is a big deal; Congressional briefings are organized by Congressional offices for Congressional offices. It is the first time we have been able to tell the CRT story in this type of setting. There were more than 100 staffers at the briefing willing to learn about this issue.

A few years ago, Congress knew very little about CRT when we first started making Hill visits. During the CELA (Continuing Education and Legislative Advocacy) conference, many offices asked if we were representing the wheelchairs they saw advertised on TV.

Remaining as calm as possible, we explained that we represented people who use complex wheelchairs, that are adjustable to the consumer’s functional and medical needs—NOT the TV people. We have made great strides, collaborating and storming the Hill.

This year, CELA took place in April. In June, United Spinal Association and UsersFirst rallied wheelchair users and completed about 200 Hill visits. Adam Lloyd, Paul Tobin, and Nick Mewshaw (pictured left to right) spoke with representatives from 56 Congressional offices regarding the need to improve access to complex wheelchairs and seating systems.

As a community and an industry we have made significant headway educating our representatives about CRT. HR 942 currently has 58 sponsors and S 948 has three. During the upcoming CRT week in August we plan to organize consumer visits to every representative in their home states – all 50.

If you have a stake in seeing CRT being more available to consumers, stay plugged with UsersFirst, United Spinal Association and NCART; on the web sites and through Facebook. If you really want to help, you can become a recruiter for UsersFirst and register people. The UsersFirst database is used to educate, provide support, and mobilize consumers and advocates.

Ann Eubank, LMSW, OTR/L, ATP, CAPS, is vice president, Community Initiatives, for UsersFirst, a program of United Spinal Association, East Elmhurst, NY.