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 Community Initiatives–Users First, a program of United Spinal Association

The right wheelchair, mobility scooter or seating system is important to maintaining good health, quality of life, and independence. There’s no such thing as an “average” wheelchair user, we all have individual needs and lifestyles. So why should our equipment be average?

This interactive webinar will offer strategies and resources to help navigate the process of getting mobility equipment that is right for you. Plus information on finding appropriate doctors; locating resources; and protecting your rights as a consumer.

Please join us. Click here to register.

So perhaps it wasn’t by chance that Tisdell ran into United Spinal Association’s UsersFirst program Executive Director Ann Eubank and United Spinal President Paul J. Tobin at a Medicaid summit last year.

Eubank and Tobin explained what United Spinal and National Spinal Cord Injury Association (NSCIA) could offer NeuroResources if it became affiliated as an NSCIA chapter.

“I realized that this was what we’d been looking for,” says Tisdell. “We were looking for more support to have a stronger voice for advocacy and more resources available to ac- complish more, and that matched up with what they had.”

In January NeuroResources was introduced as the new Oklahoma chapter of NSCIA. “This is a huge opportunity for us,” says Tisdell. “I’m really confident it’s going to allow us to accomplish a lot.”

Tisdell has only partnered with NSCIA and United Spinal for a few weeks but is already seeing returns.

“Already they’ve been able to provide support with fighting the state over catheter cuts that are going on,” she says.

The chapter is currently working to change state policy on closed catheter systems. Other legislative campaigns include an effort to get a separate waiver system for complex rehab consumers and a bill to ensure qualified people are involved in wheelchair seating and purchases.

With nearly 500 people on its mailing list and a solid Facebook following, Tisdell is confident the chapter can be a legislative force. In part thanks to the new affiliation, the chapter received a grant that it will use to hire someone to build a state- wide spinal cord injury registry.

“It’s a win-win situation,” says K. Eric Larson, senior vice president for membership and chapter services at United Spinal. “By pairing with us they can get access to the resources we have, and they give us increased visibility and presence in Oklahoma.”

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. We are all different, and that’s a good thing.

Some folks in DC do not recognize the positive impact that complex rehab technology has on many lives. They’d rather group everyone into one category. And why not, it’s easier–except for those who must learn to live with equipment that strips them of their independence and health. A wheelchair that works for one person, doesn’t work for everyone else.

Read more at UnitedSpinal.org.

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 process for UsersFirst–a movement that belongs to you. It would have fizzled long ago if not for your interest and active support. Please take a moment to review and plan with us.

What happened in 2011
For UsersFirst, 2011 was a year of transformative growth. In April, UsersFirst became a program of United Spinal Association, a consumer organization, who, since 1946, has pioneered some of the most historic events and legislation of the Disability Movement.

➢ The UsersFirst mission remains intact with full support from United Spinal Association:
UsersFirst advocates for greater access to appropriate wheelchairs, mobility scooters and seating systems for people with disabilities. UsersFirst rejects the one-size-fits-all idea of mobility and challenges discriminatory policies that deprive Americans of independence and freedom. UsersFirst focuses on the following goals:

1. Enroll all people who believe Americans should have access to
appropriate wheeled mobility.
2. Offer education and guidance through the service delivery process
of wheeled mobility.
3. Challenge discriminatory policies.

UsersFirst teamed up with Ms. Wheelchair America (MWA) to host a webinar series to enhance communication, peer-mentoring and advocacy skills.

➢ There are now approximately 3,000 registrants of UsersFirst. It is a powerful list, these are people who state they are advocates and are willing to take action.

➢ UsersFirst had a busy schedule in 2011 including the following:

o Attended and presented at all of the Abilities Expos.
o Participated and presented at the CELA (Continuing Education and Legislative Advocacy Conference) and visited with members of congress.
o Presented to over 1,800 people at the International Seating Symposium.
o Kept in touch with over 1,300 people on social media with an average weekly following of 700.
o Became a program of United Spinal Association.
o Was invited to present at multiple consumer-based conferences.
o Participated in the Heartland Conference.
o Attended and presented at the Independence Expo in Florida.
o Published various articles in industry magazines (New Mobility, Mobility Management, HME News, OT Practice).
o Three UsersFirst Action Groups were started (chapter-based) – since April.
o Worked with over 100 consumers providing guidance through the wheelchair process.
o Conducted four empowerment/advocacy courses for clinicians.
o Invited to present the UsersFirst model at the European Seating Symposium in Dublin, Ireland.
o Developed an advocacy and leadership training program with Ms. Wheelchair America.
o Attended the NCART (National Coalition for Assistive and Rehab Technology) Medicaid meeting.
o Worked with several third-party payers providing education about the needs of consumers and the necessity of appropriate wheeled mobility and service.

Where We Are as a Community
It is still very difficult to get the best wheelchair to meet your needs. One of the main reasons is that insurance companies, public and private, make more money when they deny products and procedures. And, people who use wheelchairs have historically not spoken out. Like many Americans, maybe we are unaware of bad policies until they hit us right up side the head. For example, when Medicaid decides to “save money” and use only ONE medical equipment company for the entire state! This might not mean much until you pick up the phone to ask for a simple repair on your w/c and find out the closest store is 100 miles from your home. Now what? We receive calls relating to this scenario weekly.

What Still Needs To Be Done?
Change policies that negatively affect wheelchair consumers so people can receive the wheelchair that fits their functional and medical needs.

How?
➢ Contact UsersFirst: We have qualified staff who will speak with you and support you through the process. Additionally, we will keep track of how many Americans are affected by bad policies like this.

What UsersFirst Will Do in 2012
➢ Provide webinars every month on a variety of topics
➢ Distribute brochures and posters upon request
➢ Help-line available for all wheelchair questions at
➢ Develop UF Action Groups and National Spinal Cord Injury chapters throughout the country
➢ On-line wheelchair process guidance through the Mobility Map will be live by February 15, 2012.
➢ Weekly blogs where you will be kept informed about all UF activities and consumer stories – feel free to subscribe feed://www.usersfirst.org/feed/
➢ Presence at many consumer conferences and National Spinal Cord Injury Association chapter gatherings
➢ Attending the CELA conference where the CEO of United Spinal is the Key-note speaker.
➢ Attending United Spinal’s Roll on Capitol Hill, June 25 and 26.
➢ A few other partnerships and programs you will see rolling out in the beginning of 2012 (we can’t tell you everything all in one shot).

Making history together.

What You Can Do To Help Strengthen Your Voice
➢ Be counted and register at www.usersfirst.org
➢ Tell your entire network to register, it is free. This is a way to stay connected to what is happening around the country with individuals striving to create better access to wheelchairs.
➢ Stay connected on Facebook at http://www.facebook.com/UsersFirstAlliance
➢ Be heard and tell us your wheelchair story at www.usersfirst.org under “Users Speak”
➢ Be supported and contact us with any wheelchair question at usersfirst@unitedspinal.org
➢ Contact us if you would like to be more involved in a chapter, would like brochures, or need support regarding a limiting policy.

We are excited about the momentum of this movement and invite you to increase your participation.

We have the opportunity to make history together.

A united voice is a strong voice.

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

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 equipment supplier relay such messages?

Ann Eubank: In the history of successful consumer movements, one of the essential elements is the authentic voice of the consumer. Whether conveyed from the unique perspective of the consumer or in collaboration with the interests of other stakeholders, this voice off ers insight into potential consumer impacts. It is particularly important that the messages convey an independence of thought and the capacity to draw upon the actual consumer experience. Can medical providers and clinicians discuss that experience? Certainly! But will it have the power of the first-hand stories of those most directly affected? Seldom!

Read the entire Q&A with UsersFirst’s Ann Eubank at MobilityManagement.com.

My husband is a SCI@T5 with Syringomyelia and Central Neuropathic Pain. We also have a young child. When my husband first had his accident in 2006 he was given a lightweight manual wheelchair which we had to argue for as I was pregnant. But it was a wheelchair and it allowed us to get out and about. We are very grateful for it.

About 1.5 yrs later his right arm partially paralyzed as a result of Syringomyelia and made it difficult for him to move about. After waiting 1.5 yrs in March 2010 we finally got his power chair. It only partially worked. We kept having the company come out and then we went into the hospital only a few weeks after sitting on the new cushion (not the one we requested) for a level IV decubitus.

The power chair company refused to come out and fix the chair while he was in the hospital. When he finally came home we again had to fight and eventually contacted the corporate office to the maker of the chair. They extended the warranty and got the chair fixed. Again in 2011 my husband had many hospital visits and now that he seems stable I remembered that I needed to get the tune up. I called the corporate office as I was not interested in using the same DME vendor as who initially sold us the broken chair. It has taken me two months, too many calls and the charger no longer charges the chair. The sales rep to the corporate office is having me make all the calls to find someone to fix the chair.

I just learned that even though we have a warranty it is customary for them to charge a fee to look at the chair, customary for them for us to charge us for everything even though we have a warranty and customary for this process to take at least a month.

I am placing a call to our insurance company (as I just learned thanks to the NSCIA – Bill F.) that insurance might cover this.

In the meantime, my husband has a power chair that we can only seem to get “visitation rights” to and is pretty much stuck in bed. He doesn’t use the manual unless its an emergency as the handle bars for the caregiver push into his back and set off his Central Neuropathic Pain.

As a side note I can’t get a high end replacement cushion because the one I want for my husband I can’t get anyone to sell it to us…even with a pre-auth from the insurance company.

One final note….thank you for having a site like this…I will be handing it out. My thoughts are that cars are not one size fits all and yet we require there use to pretty much live each day. Power chairs MUST be thought of in the same vein!

With 1 in 6 U.S. families now living at or near poverty, we have seen considerable growth in Medicaid enrollment since the recent recession. According to a 2010 Urban Institute analysis, Medicaid has been more cost-efficient than private insurance based on spending per enrollee but is growing because of genuine need. States are responding to their fiscal challenges by cutting Medicaid and other expenses. Like Dr. Siegel, we too are concerned about providers denying or limiting access to Medicaid patients because of reduced payments, but that begs the question of what is adequate payment.

According to the Organization for Economic Cooperation and Development (OECD), among industrialized nations, U.S. health spending ($7,960 per person) is more than 50 percent higher than in the next costliest nation, Norway ($5,352), and more than double Britain’s ($3,874) and France’s ($3,978) and the OECD member average ($3,233). This cost difference in America does not equate with appreciably better outcomes and we do far worse on many health indicators such as our 34th place ranking on infant mortality.

We spend more despite other nations having more doctors per capita and nearly double the average number of doctor consultations annually. And yet, a recent Commonwealth Fund study concluded that more than 40 percent of Americans went without care in 2009 because of cost. Our steep costs continue to rise and high-cost procedures such as knee replacement, appendectomy and angioplasty are undertaken far more often at significantly higher costs than in other industrialized nations. As Dartmouth studies have indicated, costs for the same procedures can differ widely at hospitals within 60 miles of one another in the same states. Our health care system needs basic reforms to eliminate such unjustifiable discrepancies and achieve more genuine balance between cost and value.

Dr. Siegel notes that a 2009 study suggested that as much as a third of annual health expenditures are wasteful. He fails to acknowledge, however, that the Affordable Care Act (ACA) is the first comprehensive legislation to foster the kind of scrutiny and innovation that attempts to seriously address the waste, medical error, avoidable care, lack of care coordination, fraud and abuse and dubious care quality he describes. But these efforts are only a part of the answer and will take time to take root in a health care system that has long been too costly, fragmented and overspecialized. We have rewarded more, often unnecessary, care under in our fee-for-service payment system but have done too little to rein in costs.

Dr. Siegel’s inaccurate portrayal of Medicaid coverage of wheelchairs as excessive hits particularly close to home. I live with a spinal cord injury. My injury requires me to use a power wheelchair to maintain a productive and independent life. Medicare is the primary source of government support of wheelchair purchases and most state Medicaid programs, only after ensuring that stringent medical qualifications are met, will pay only the difference in what Medicare does not cover. After lengthy scrutiny, coverage for a medically-necessary wheelchair may be approved but it is not soon replaced as Dr. Siegel suggests. Instead, each wheelchair experiences several years of use, with approval of the costs of maintenance and necessary repairs often requiring long waiting periods. Medicaid’s typical “useful life” requirement for this durable medical equipment is 5-7 years, during which, significant changes in the medical condition of the patient that may require wheelchair upgrading are typically ignored until the minimum 5-year “useful life” is achieved.

Dr. Siegel highlights the Affordable Care Act’s expansion of Medicaid coverage to millions of new recipients – Americans who live at the fringes of poverty and cannot afford insurance otherwise – as merely exacerbating the problem. These are people whose health care costs are now being cross-subsidized by all those with insurance through premiums that have annually risen for small businesses at average double digit percentages, well beyond inflationary growth. The reality is absent coverage, these costs get shifted to those who can pay. Dr. Siegel rightly suggests that many limited care access turn to the hospital emergency room. But lacking coverage, they will often do so after their illness or injury becomes far more serious and costly to treat. Providing coverage to more of the uninsured will help to spread risk more fairly and help deal more directly with these hidden costs of health care.

Medicaid isn’t the culprit here, excessive health care cost is, particularly at a time when our ability to absorb these costs is weakened. We believe that the ACA’s incentives to shift the program’s current bias from institutional care to more home and community-based services and prevention will help measurably in this regard. Dr. Siegel’s recommendation that Medicaid recipients have “more skin in the game” via a system of co-pays is worthy of further exploration but the burden must be placed as well on physicians, hospitals, nursing homes, drug companies and other stakeholders in the healthcare industry who have resisted limits to their choices.

Paul J. Tobin, MSW
President and CEO
United Spinal Association

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 a resource that they were not aware of or find the confidence to use her voice for personal or social change then this webinar series will be worth it,” said Autumn Grant, MA, senior academic advisor, Academic Achievement Center, Bridgewater State University and a former MWA title holder.

“During our discussions with Ms. Wheelchair America we realized the two organizations’ missions complimented each other. MWA and UsersFirst focus on advocacy and empowerment for people who use wheelchairs. The MWA title-holders are located throughout the nation and this format provides them the opportunity to stay connected throughout the year,” said Ann Eubank, LMSW, OTR/L, ATP, VP of Community Relations at UsersFirst.

The first meeting took place on December 6 and included 15 participants.

“We hope to grow that number substantially over the coming months. Past and current contestants had a number of reasons for wanting to be involved including connecting with friends, expanding their peer support network, learning more about advocacy issues and just wanting to see what it is all about,” Grant added.

The webinar format also makes it easier for people with transportation issues or those who live in rural areas to participate.

“I believe this is a unique opportunity for many of the participants because it allows them to express their ideas and opinions in a safe and supportive atmosphere,” Grant said. “The participants are excited about sharing their knowledge and learning from one another.”

The idea for the webinar series came from discussion between Grant, Eubank, and the President of the Executive Board of Directors of Ms. Wheelchair America Inc. Kristen Connors, who wanted to give contestants a way to connect and begin talking about advocacy before Ms. Wheelchair America 2013–which will take place this summer in Providence, Rhode Island.

“I am so pleased to be working with UsersFirst. I think this is a great collaboration between two groups who work hard every day for people with disabilities. These webinars will further the understanding of women who happen to use wheelchairs along with building a camaraderie between previous, present, and future titleholders where they can feel free to discuss whatever is on their mind without fear of feeling different,” said Connors.

Ms. Wheelchair America provides an opportunity of achievement for women who happen to be wheelchair users to successfully educate and advocate for the more than 52 million Americans living with disabilities. Unlike traditional beauty pageants, Ms. Wheelchair America is not a contest to select the most attractive individual. It is instead a competition based on advocacy, achievement, communication and presentation to select the most accomplished and articulate spokeswoman for persons with disabilities.

For more information on the webinar series, contact Autumn Grant at mswheelchairmass06@yahoo.com.

Tom Scott
Staff Writer
UsersFirst

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