UsersFirst Blog

Happy New Year! It seems like people and organizations are reviewing the past year: the successes, challenges, the amazing people you met, the goals you reached and the ones where you fell short. Overall, an insightful process, and, a powerful process if you are able to act accordingly on the feedback. Below is this very [...]

September 27, 2011

Ann Eubank, LMSW, OTR/L, ATP
VP Community Initiatives
UsersFirst, a program of United Spinal Association

Dedicated mobility specialists taking on challenges together.

UsersFirst’s recent activity has given me the opportunity to speak with hundreds of people from varying backgrounds and organizations. A week ago, UsersFirst lead a leadership course for clinicians (out in the woods) and this past weekend we participated in the Independence Expo––a consumer conference. All the rich conversations and interactions––gifts really––have filled my heart with hope and determination and inspired me to share how my community affects me.

Reflections from the Road

If you are not mindful, the world might beat you down by declaring you don’t fit in, insisting you change, or implying that you are not enough. Those thoughts can ferret their way into my world at any moment, leaving me feeling alone and ineffective. But, remarkably, when I am in community, reaching out and connecting––even if it is in my own clumsy way––the negative thoughts almost disappear. And then I remember my nature, which I think is human nature––to make space for everyone to be heard, to be seen––to matter.

When I am connected in my community I feel like I matter. When I feel seen and heard I am more apt to understand that I need others and others need me. It is truly amazing how being connected can give us the energy to get and stay connected, to have compassion for everyone––making space for EVERYONE to participate.

During my recent travels, collaborating with all types of people and organizations to continue pushing for the right of freedom of movement, it become very clear to me how much we need each other.

UsersFirst is a movement from the bottom up, meaning––“of the people” and inherently inclusive. “The people” are you and me and there is space for everyone. If this movement is unsuccessful and we lose the ability to access appropriate mobility equipment, many advancements of the disability community and the health care professions (yes, we are in it together) is for naught. That thought is unacceptable and motivates me to continue reaching out to you as someone who cares that Americans have the right to the freedom of movement.

We need each other. Think about it––if millions of Americans are “homebound”, which, I think, translates to “bedbound” then we will be sicker as a nation. I thought that was what all the fuss was about in Washington, that health care is expensive. If humans are not able to move, in every aspect of the concept, will we not be more expensive due to illness?

Logically and emotionally we need to STAY CONNECTED AND ACT TOGETHER.

Here is a reminder of what you can do today:

1. Sing up yourself and everyone you know at www.usersfirst.org
   • The more people signed up, the more clout we have when trying to create positive policy change.
2. “Like” UsersFirst on Facebook at www.facebook.com/UsersFirstAlliance – and – ask your network to “like” UF.
   • The more people signed up, the more clout we have when trying to create positive policy change.
3. Tell your wheelchair story at www.usersfirst.org/submit-your-story/
4. Ask any wheelchair question at usersfirst@unitedspinal.org

Ann Eubank, LMSW, OTR/L, ATP
VP Community Initiatives
Users First, a program of United Spinal Association

Finding and getting the right wheelchair has become almost impossible. And, if you have a good wheelchair now, don’t count on getting the same type next time you need one, with all the same features.

Without a good wheelchair, you can’t live the life you choose. Our independence is being taken away by crumby wheelchairs that don’t fit our needs and lifestyle. Why is this happening?

There are a lot of reasons. For one, the insurance industry makes money by denying benefits. The more they deny, the wealthier they become. In their mind the wheelchair does not fix anything––so why pay for it? That is the same reason they don’t pay for hearing aids either.

The mindset of public insurance (Medicare and Medicaid) is not much different. They will cut spending for wheelchairs unless someone speaks up about it.

How come you can get all the little blue pills you and your friends might need, but not a wheelchair? That’s because drug companies are richer and more powerful than the wheelchair companies. They make sure they have policies in place to provide their drugs. We need to change policy, but we have to do it grassroots.

This negative cycle results in: 1) Lack of consumer choice; 2) Therapists can’t prescribe the wheelchair they think is best; 3) The medical equipment supplier is unable to provide good product and service without adequate payment from the insurance; and 4) The wheelchair manufacturer cannot design the best wheelchair. This is a big problem.

This is a civil rights issue. We are a community of Americans that live life using wheels. We are not “less than.” If we can’t access the equipment we need, our right to travel freely in our community will be stripped from us.

Who is going to change this? Not big business (insurance companies)––they are making tons of money with things just the way they are. Who then? The only ones who can: You and me, together with all Americans who care that there is such incredible discrimination going on in our country.

What can we do about it? The same thing all minorities in the US have had to do to receive equal treatment. We have to come together with a focused, united voice.

UsersFirst provides a space for you to speak out. It is you speaking, not us. And, we will make sure your story receives the audience it deserves. The purpose is to show the funding agencies and policy makers how important the right wheels are, and that we are not going away. To make sure they know we are going to talk publically about their policies and how negatively they can affect our lives, we will bring your story to Washington, DC, to your state legislator, and to the insurance company. Maybe even some of you will come with us.