2011 Editorial Round Table

Users First Alliance Gains Non-Profit Status, Seeks 2011 Budget

2011 Round TableIn the middle of Medtrade, several dozen providers, clinicians and representatives from service organizations and manufacturers took a break from their meetings to gather in a conference room to listen to a presentation by Users First Alliance’s executive director, Ann Eubank, MSSW, OTR/L, ATP.

And they seemed to like what they heard.

Eubank announced at the meeting that just days before, Users First had been granted 501 c3 status as a non-profit organization. And she outlined some of the steps the organization would be planning to take next.

The organization’s mission statement is “The Users First Alliance seeks to ensure appropriate access to seating and mobility equipment by empowering wheelchair users, clinicians and providers with education and information resources that inspire action and motivate change.”

Unparalleled Transparency & Accountability

The 501 c3 status is crucial, Eubank says, because of the transparency and accountability that such organizations are required by law to have.

As part of the non-profit status’ vetting process, the Internal Revenue Service (IRS) asked, Eubank says, a number of detailed questions. “They wanted to make sure there was no selling of wheelchairs, that there’s no promotion of any type of specific product, that it’s completely consumer related and that it’s for the education of consumers to navigate the service-delivery process for access to mobility equipment.”

Eubank said the IRS also asked about Users First’s board of directors. Six of seven board members are also wheelchair users. “(The IRS) wanted to know who the board members were — are they industry people, are they community people? If (board members) were weighted toward the industry, we would not get that (non-profit) status.”

Users First board members are Josh Anderson, VP of marketing for TiLite; Andrea Cooper, an attorney with expertise in accessibility law; Tim Gilmer, editor of New Mobility; Darrell Gwynn, drag racer and motorsports legend; Todd Hatfield, executive director of the National Wheelchair Basketball Association; Darren Jernigan, Nashville metro council member and Permobil’s director of government affairs; and Jackie Klotz, corporate event & marketing specialist for The ROHO Group.

Fighting with, Not for, Consumers

For Eubank, the effort to move Users First to the next level has been both intense and intensely personal. Two years ago, she went back to school to earn a degree in social work, with the end goal of learning how to propel Users First forward in a big way.

When discussing current policies that can deny consumers access to the seating & mobility technology that would give them the most function and liberty, Eubank evokes civil rights perspectives.

“When states do this (deny accessibility), it’s the same as discriminating against a certain race,” she says. “Some of the stuff that goes on, they’re arbitrary policies about why they won’t pay for something. The minority model that I teach about is to view people with disabilities just as you would any other minority. And sometimes, the medical model is the opposite of that, where you’re half a person because you have a disability. It’s not how the disability community wants to be seen.”

Users First, Eubank says, seeks therefore to fight with seating & mobility consumers rather than for them.

“It’s an empowerment model,” Eubank says of the organization. “When something is done for somebody, they’re not sure how they ever got the chair. This is an education model to teach the consumer how to navigate the service delivery process, each step of it.”

Consumers who aren’t aware of how the process works, Eubank says, aren’t necessarily denied equipment entirely, but instead can “end up with something, but don’t realize it’s half of the (technology) they could have gotten five years ago.”

Transcending Industry Competition

In the meeting, Eubank was seeking contributions toward the organization’s first formal budget of $200,000. During the meeting, United Seating & Mobility and The VGM Group were announced as platinum-level sponsors at $15,000 each.

Eubank says she has spoken to every manufacturer and group represented in the meeting, and all have pledged financial support. Eventually, the plan is to obtain much of Users First’s operating revenue from grants – a process already underway.

Users First made its debut in March 2007 at the International Seating Symposium in Orlando, Fla. At that time, it was a joint venture supported by Permobil, The ROHO Group, and TiLite.

But the gathering in Atlanta included representatives of more than a dozen presumably competing providers and manufacturers, as well as organizations. An informal, incomplete tally of attendees included representatives not only from Permobil, ROHO and TiLite, but also ATG Rehab, Bodypoint, Colours Wheelchair, Frank Mobility, Innovation In Motion, Invacare Corp., Mobility Management, Motion Concepts, National Seating & Mobility, NCART, New Mobility, Pride Mobility Products, Prime Engineering, Rifton, United Seating & Mobility, the University of Pittsburgh and U.S. Rehab/VGM Group.

Since its inception more than three years ago, Users First has been working with bare-bones funding; Eubank didn’t draw a salary from the organization for the years she was back in school.

Yet during that time, Users First successfully challenged a Mississippipolicy that restricted power chair purchases based on a consumer’s age. Thanks to Users First’s membership roster, Eubank says, the organization was able to bring together members to confront the state’s policy.

“We found a clinician who understood the process, who’s been through my training, and she found a consumer that understood, and a supplier that understood, and they put the claim through,” Eubank says. “And we addressed the Mississippi issue.”

She adds, “That’s just one example, and we’ve not even really started yet.”

Asked how she would eventually measure Users First’s success, Eubank answers, “An increase in membership and success with challenging discriminatory laws — discriminatory policies — toward people with disabilities.”

Users First aims to preserve and improve access to technology for consumers, in part by working to change policies that work against that. And Eubank says the overarching importance of that goal, along with Users First’s new non-profit status, is unifying the industry’s players.

Join the fight by signing up at usersfirst.org. Membership in Users First is free.

Eubank sums it up by quoting Pride Mobility’s Julie Piriano: “As Julie says, this transcends competition.”

This article originally appeared in the January 2011 issue of Mobility Management.

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