In the middle of Medtrade, several dozen providers, clinicians and representatives from service organizations and manufacturers gathered in a conference room to hear a presentation by Users First Alliance’s executive director, Ann Eubank, MSSW, OTR/L, ATP.
The big announcement: The organization had been granted 501 c3 – non-profit – status just two days earlier and was ready to move forward.
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 its new 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.”
The organization’s mission statement is “The User’s 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.”
Membership in Users First (usersfirst.org) is free.
“It’s an empowerment model,” Eubank says of the organization’s structure. “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.”
Eubank used the meeting in part to announce that she is seeking contributions toward the organization’s first full-fledged budget. During the meeting, The VGM Group and United Seating & Mobility announced they’d signed up for “platinum” sponsorships of $15,000 each. Since then, Eubank says, a number of other meeting attendees have pledged significant support as well.
For Eubank, the effort to move Users First to the next level has been intense and personal. Two years ago, she went back to school to earn a degree in social work to better prepare herself for the job ahead. During that time, she didn’t draw a salary, and funding for Users First was bare bones: about $30,000.
Yet during that time, Users First successfully challenged a Mississippi policy 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.”
With its new non-profit status, a board of directors that includes six wheelchairs users, and a budget taking shape, Eubank looks at the Mississippi situation and sees the promise of many more success stories.
She says, “That’s just one example, and we’ve not even really started yet.”
