Push For More–Finding The Right Wheelchair It’s not just your wheelchair. It’s your livelihood. Join UsersFirst for a free webinar on finding the right wheelchair and other mobility equipment, so you can live the life you choose! When: Wednesday, February 29, 2012, 2:00 PM – 3:15 PM EST Speaker: Ann Eubank, LMSW, OTR/L, ATP; VP [...]
News & Events
NSCIA Partnership Empowers Oklahoma Chapter
After five years of running NeuroResources Outreach Services, a non-profit dedicated to helping people with spinal cord injuries, Teresa Tisdell wanted to do more. NeuroResources had already helped secure state legislation, established a hugely successful equipment loan closet and built one of Oklahoma’s most substantial advocacy and support systems, but Tisdell knew there was a [...]
New Video Highlights Benefits of Complex Rehab Technology
So what exactly is complex rehab technology? Basically, it includes mobility devices such as manual and power wheelchairs that are professionally tailored to fit a person’s medical and functional needs. No matter what disability someone may live with, whether it’s spinal cord injury or traumatic brain injury, nobody falls under the same umbrella of needs. [...]
Tapping Into the Authentic Voice of the Consumer
Q&A with Ann Eubank, LMSW, OTR/L, ATP, VP Community Initiatives at UsersFirst Q: You believe it’s critical for consumers to advocate for themselves — i.e., directly communicating to legislators, funding sources, etc., about their needs, concerns, dreams, etc. Why is this a more powerful or eff ective means of communication versus having a clinician or [...]
Medicaid is Not the Culprit
Dr. Siegel’s November 29 column “Don’t Take the ‘Medi’ out of Medicaid” appropriately identifies a financial challenge that is not merely a Medicaid problem but a reflection of the realities of our economic times and a broken healthcare system that has yet to adequately address the issue of cost. With 1 in 6 U.S. families [...]
UsersFirst and Ms. Wheelchair America Host Advocacy Webinar Series
UsersFirst has teamed up with Ms. Wheelchair America (MWA) to host a webinar series for current and former MWA title-holders to enhance their communication, peer-mentoring and advocacy skills. The webinars offer guidance on topics such as public speaking; leadership; sexuality; fashion; health and wellness; and caregiver relationships. “If we can help one person connect with [...]
Rolling Along in North Carolina
August 30, 2011
Ann Eubank, LMSW, OTR/L, ATP
VP Community Initiatives
UsersFirst, a program of United Spinal Association
What a great week of networking and connecting with people in North Carolina. I met with Debbie Myers, executive director of the Raleigh National Spinal Cord Injury Association (NSCIA) chapter. She is a former executive at Sprint and now hones her skills running a successful chapter. It is a small world as we talked about different issues and people and places we both know.
The NC chapter is going strong offering four support groups, a quad rugby team, and a basketball team. Debbie and members of the chapter are developing a variety of programs including a back-to-work, fitness and training, and peer-mentoring program. The next exciting event––the Fourth Annual Wine Gala––will be held on October 13 (for more information or to contact Debbie Myers, visit www.ncscia.org).
On Friday, I presented a day-long seminar with Dr. Mark Schmeler, from the University of Pittsburgh focusing on advocacy and the overall process of attaining the best wheelchair. Forty people attended and 40 people registered to be part of the UsersFirst Movement.
Returning home I was full of motivation and hope. The chapter is a group of volunteers, on a shoestring budget, who provide support and information to their community. The workshop on advocacy attracted dedicated health care professionals exploring ways to increase access to wheeled mobility by partnering with consumers. We talked about how challenging it can be to provide the wheelchair that best matches the consumer’s lifestyle. And, we all agreed, that if we come together as a community, we can fight bad insurance policies.
To unite and make a change, it is important we have a structure. The NSCIA national chapter network is the membership arm of United Spinal Association and provides the necessary structure to unite North Carolina and every other state. UsersFirst is the grassroots and, if needed, the activism arm. UsersFirst Action Groups work within the existing NSCIA chapter network and will challenge discriminatory policies that limit access to appropriate wheeled mobility.
Thank you North and South Carolina – let’s stay connected and make the changes we talked about this week.
Thinking Big in Texas
UsersFirst Empowers Wheelchair Users at Houston Abilities Expo
August 30, 2011
Ann Eubank, LMSW, OTR/L, ATP
VP Community Initiatives
UsersFirst, a program of United Spinal Association
UsersFirst attended the Abilities Expo in Houston this past weekend and it was awesome! We signed up 120 members and a new Houston chapter has begun with enthusiasm and lots of support.
Did you know UsersFirst has access to 34 chapters of the National Spinal Cord Injury Association––the membership division of United Spinal Association? We expect to have access to 50 chapters by March 2012.
The people we met at the Expo agreed that Americans should have access to wheelchairs that increase independence and quality of life. You know, a wheelchair that actually works for you in your life?
Many people expressed frustration about how difficult and confusing it can be to get the right wheelchair. It can be a bear. We offered guidance to people that stopped by our booth on the process of getting the right wheelchair, basically mapping out some of the steps involved and addressing their questions and concerns. The map is a good starting point and they can call us any time if they get snagged.
UsersFirst booth was active all weekend with attendees sharing their perspectives on mobility equipment.
Our booth showcased powerful imagery depicting strong Americans who need wheels to live the lives they choose. The booth did a good job sparking curiosity and allowed us to gather, talk and record wheelchair stories from many attendees. And, everyone has a story when it comes to obtaining mobility equipment.
We talked with a father who has been unable to get the right wheelchair for his son. He said the insurance company has denied it several times. Without the right wheelchair, his son doesn’t have a chance at being independent. UsersFirst is committed to working with this family and others to challenge the policies that prevent people from living actively and pursuing their goals.
Ann Eubank hosts a self-advocacy seminar
on obtaining the right wheelchairs.
During the show, UsersFirst also presented a seminar on self-advocacy––a fancy word for pushing insurance companies for what you need to be independent. A part of self-advocacy––or what some would even call self-respect––is not settling for the status quo. Status quo literally means “the existing state of affairs.” And, I would strongly suggest the “existing state of affairs” is not working for anyone!
But the good news is we all have the power to change that. The UsersFirst Movement empowers people to exercise their right to be independent and demand access to mobility equipment that’s right for them. I think we drove that point home during the Expo and made a positive impact on the lives of many of the attendees.
Stay connected and speak out. I think you will feel really good about it.
You can also email us at usersfirst@unitedspinal.org.
To check out more photos from the Expo, visit our Facebook page.
A Curse On Wheelchair Users
Guest author: Ziggi Landsman
Blogger and VP of Assistive Technology
United Spinal Association
Having options is something that all Americans understand. It is in part what has made us a great people.
Having options allows us to think out of the box, try different ways and things, and come back yet one more time with a different perspective or solution. It gives us choice, one of our most cherished rights, and the tools by which we can solve problems that are global or unique to just one person.
For many wheelchair using Americans the lack of options is a curse that no conjurer can remove. It haunts their independence, their health, their livelihood, and their membership in society. The curse is itself a wheelchair, the wrong wheelchair. One that was supplied through a lack of choice process and one that does not function well or is not appropriate for the user. It is a curse that condemns wheelchair using members of our society to shut-out or closed-in status with few options and little recourse.
For a number of years now funders such as Medicare, Medicaid, and insurers have cursed our wheelchair using friends and relatives with dollar driven decisions and one-size-fits-all mandates. And it’s time this changed.
So what are our options? How can we remove the curse? We can start by helping each other with advice and guidance. Sharing our wheelchair success stories so that others may benefit and find alternative strategies. Sharing our failures and frustrations so that others can choose a different path when searching for solutions to their wheelchair issues.
We can combine our voices in a unified shout loud enough to shake the boardroom walls of manufacturers and loud enough to convince politicians and bureaucrats that it is in the people’s best interests and their own to explore alternatives other than restrictive ones, and that laws and policies need to be as diverse as the people that they were created to serve.
Ziggi
