Advocacy: Mobility Map, Reinvesting in Veterans


United Spinal Needs You!
We believe people with disabilities should have access to quality healthcare, the right medical equipment, and related services and supplies to facilitate greater independence and community engagement.

Medicare’s current bidding process restricts access to, and choice of, medical equipment items and services by forcing individuals with significant disabilities, the chronically ill and the elderly to use certain medical equipment providers whether they furnish the products and services that provide the most benefit to consumers or not. For more information, visit our United Spinal Advocacy Center (www.unitedspinal.org/action-center).

By completing the survey below, you will help us give legislators in Washington, D.C., a better understanding of why the current bidding program is a problem for the disability community.

Thank you!

Medicare Access to Medical Equipment Survey, www.surveymonkey.com/s/CSQMG7Z


A Better Mobility Map

Jennifer Wolff UsersFirst
Jennifer Wolff
UsersFirst

by Jennifer Wolff, UsersFirst

First of all, thank you for all your participation and lively discussions on our social media platforms! The UsersFirst Alliance page on Facebook is much more active than it ever has been. We also succeeded in our first social media Thunderclap. Thunderclap is an app that allows all participants to send out the same message via Twitter, Facebook and Tumblr at the same time. On Thursday, Aug. 21, at 3 p.m. EDT, we had 161 people instantaneously post about the importance of complex rehab technology. That message was seen by over 60,000 people and hopefully brought some much needed attention to complex rehab technology — and the difficulty we wheelchair users have getting the right wheelchairs/equipment.

UsersFirst wants to be more than just an online community. To that end, in the upcoming months, we will be revamping the UsersFirst Mobility Map (www.usersfirst.org/resources/mobilitymap/).  Those of you who have checked out the Mobility Map know that it has a lot of great information to help you select the right wheelchair, but is not as user-friendly as it could be. We are working on making the map more interactive and more pertinent to our needs as wheelchair users.

As I look back on my own wheelchair evaluations and the many I have done as an occupational therapist, I know certain information is extremely important. Here are some examples of information I would like to add:

Having a complete medical history — all conditions/disorders, a history of any falls, wrist, elbow shoulder issues, pressure sores — is essential in helping your therapist be able to document why you need a certain wheelchair and/or parts. We know communication in the medical field is not very efficient. Sometimes doctors do not understand what information they need to provide, so sometimes it is up to us.

Having the therapist and/or assistive technology professional get you out of your chair is crucial. There is no way to do a proper wheelchair assessment without actually seeing the person sit on a mat with no props. It is the only way to truly see posture. Also when possible, having a pressure map analysis done is very helpful.

If the therapist or ATP is unable to get to your home during the wheelchair assessment, it is wise to make your own measurements for doorways and turning radius. A good team will be able to get you the right equipment to work in your environment, but always try to have the wheelchair delivered to your home — so you can try it out and see if it will fit. Sometimes the supplier will have a demonstration chair for you to try in your home as another option.

If you have other ideas that may help improve the evaluation process for others, please share with me at jwolff@usersfirst.org.


Reinvesting in Veterans

Heather Ansley VetsFirst
Heather Ansley
VetsFirst

by Heather Ansley, VP of VetsFirst

Delays in accessing health care from the Department of Veterans Affairs that resulted in veterans’ deaths have sickened Americans who believe that one of our most sacred duties as a nation is to care for those who have served in uniform. Revelations from the Phoenix VA Health Care System about secret waiting lists for VA health care touched off investigations that showed similar problems at VA medical centers around the country. As a result, VA Secretary Eric Shinseki resigned amid accusations that he was out of touch with what was happening under his watch.

VetsFirst recently joined with many leading veterans organizations in calling for renewed investment in VA to ensure that veterans have access to the quality care they need and deserve. History has taught us that advocates are invaluable in ensuring that veterans receive quality treatment and services. That’s why we are also launching the VetsFirst Public Policy Advisory Committee. This group of veterans and family members will work with VetsFirst to provide high-level feedback and support for our efforts in Washington.

Unfortunately, problems in accessing quality VA health care aren’t new. In a May 1970 edition of Life Magazine, horrifying images of the treatment of veterans with spinal cord injuries at the Bronx VA medical center sparked the outrage necessary to replace outdated facilities and improve the care provided. The former leader of this organization, James Peters, was instrumental in exposing the maltreatment occurring at that medical center. In 2005, the Bronx VA medical center was officially renamed the James J. Peters VA Medical Center. A veteran with SCI who has spent the better part of 40 years receiving care at that medical center recently told me that the care he receives today is the best he has received from VA.

As was the case with the Bronx VA, today’s media reports of misconduct have once again provided the catalyst needed for change. In response to the outrageous reports of staff manipulation of waiting lists and veterans unable to access the care they need, changes in VA personnel and policies are being deployed. On July 29, the Senate confirmed a new VA secretary, Robert McDonald. That same week, the chairmen of the Veterans’ Affairs Committees in Congress agreed to legislation that creates new opportunities for veterans to seek care outside of the VA if timely, local VA care isn’t available. The legislation also allows VA to more easily remove managers who are found to have manipulated data and hindered the ability of veterans to access care.

Many veterans who are able to access care through the VA like the care they receive. Congress showed its support for strengthening VA by also agreeing to provide VA with additional resources to hire more doctors, nurses, and other health professionals and address aging infrastructure.

The catalyst of today’s problems can help us ensure better care for veterans for years to come. In the coming months, the results of reform efforts will make it clear whether we are on the right path in addressing the problems that led to the despicable treatment of our veterans in Phoenix and other VA health care facilities. The process of implementing needed changes, however, has only begun. To be successful, we need you.

If you are a veteran with a disability or a family member of a veteran with a disability and you are interested in learning more about how to apply for VetsFirst’s advisory committee, please contact me at hansley@vetsfirst.org or by phone at 202/556-2076, ext. 7702 for more details.


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