Complex rehab technology (CRT) refers to products and services, including medically necessary individually configured manual and power wheelchair systems, adaptive seating systems, alternative positioning systems, and other mobility devices that require evaluation, fitting, design, adjustment and programming. Such technology is designed to meet the specific and unique medical and functional needs of an individual with primary diagnoses resulting from a congenital disorder, progressive or degenerative neuromuscular disease, or from an injury or trauma.

The U.S. Congress has acknowledged that complex rehab power wheelchairs are unique and more specialized than standard durable medical equipment (DME) and should be treated differently. In 2008, it passed legislation exempting these products from inclusion in Medicare’s new Durable Medical Equipment (DME) competitive acquisition program recognizing that such inclusion would jeopardize access to this customized technology for individuals with disabilities for whom it is medically necessary. However, a separate CRT benefit structure was not established at that time. The Centers for Medicare and Medicaid Services (CMS) has recognized the unique nature of other customized products and services and has created a separate and distinct classification for Orthotics and Prosthetics (O&P), i.e. custom braces and artificial limbs.

CRT is unique and differs significantly from standard DME in the following ways:

• CRT is used by individuals with disabilities who have medical conditions significantly different from those experienced by the traditional elderly population in Medicare. This population tends to qualify for Medicare based on their disability and not their age and consists of individuals diagnosed with such disorders as Cerebral Palsy, Muscular Dystrophy, Multiple Sclerosis, Spinal Cord Injury, Amyotrophic Lateral Sclerosis (Lou Gehrig’s disease), and Spina Bifida.

• CRT requires a broader range of services and specialized personnel than those required for standard DME. CRT is provided by way of an interdisciplinary team consisting of, at minimum, a Physician, a Physical Therapist or Occupational Therapist, and a Rehab Technology Professional (RTP) –certified by the Rehabilitation Engineering and Assistive Technology Society of North America (RESNA)–referred to as the CRT Team. Devices in this category require a technology assessment completed by a certified RTP employed by a CRT Company.

• Many of the products require a physical evaluation, a technology assessment, measuring, fitting, simulations and trials, a mixing and matching of products from different manufacturers, significant training and education, and refitting and ongoing additional modifications.

• The Medicare program has established quality standards that all DME companies must meet to qualify for the Medicare program. CMS has included additional and more rigorous quality standards with which CRT companies must comply.

Medicare currently does not have unique coverage for the more complex needs of individuals with disabilities and chronic medical conditions that require customized products and services that are medically necessary. We believe the creation of a separate benefit will actually result in decreased Medicare expenditures by averting hospitalizations due to such conditions as severe pressure sores and blood clots. In the interest of quality healthcare and optimal functionality for individuals with disabilities, a new Medicare benefit category is warranted.

Roll on Capitol Hill is United Spinal Association’s annual legislative advocacy event that addresses issues that will directly impact the health, independence and quality of life of individuals living with spinal cord injury or disease.

For more information on Roll on Capitol Hill, please submit your inquiries here.

Tobin, a wheelchair user and Navy veteran, captivated attendees with an insightful, historic overview of how empowered wheelchair users and other Americans with disabilities have shattered numerous barriers to equal rights and inclusion–and that their future participation in dialogue on sociopolitical reform must be protected.

“People with disabilities succeed when we speak for ourselves,” Tobin asserted as he engaged hundreds of stakeholders from the complex rehab technology industry that filled the room.

Tobin emphasized that in order for people with disabilities to participate in reform, it’s essential that they have access to this type of technology. Complex rehab technology includes manual and power wheelchairs that are professionally tailored to fit a person’s medical and functional needs.

There are some people who believe a wheelchair is just a wheelchair; it works for everyone the same way. Tobin and United Spinal contend this could not be further from the truth. We believe that access to complex rehab technology is vital, and represents the front lines of the battle for equality for wheelchair users and others within the disability community.

“Without the proper mobility equipment, many individuals cannot live with dignity and independence. They may be confined to their homes or forced into nursing homes. They might not be able to get involved in their communities, discover recreational or educational opportunities, attend family and religious gatherings, or seek employment. They lose their voice and, ultimately, their empowerment,” he explained.

Read the full story here.

My name is Tracey and 3 years ago we was in a real bad car wreck. We were hit by a drunk driver. It left my son in a wheelchair for the rest of his life. This will be the first time I have ever told my story like this.

It was on April 26, 2009. It was the perfect Sunday afternoon. I want pics of my boys in the blue bonetts so there for we get ready and head out the door. Robert had asked me to watch him do one last trick on his bike before we left. I watched him do his trick and we got in the truck and took off. We are driving down the road I had no worries in the world. The next thing I know I’m waking up in the hospital with a back brace and neck brace on.

My oldest son lost 6-inches of his colon and broke both his arms and had cuts. My youngest son was in ICU for 3 weeks. They had him in medical induced comma. It was a week after my wreck that I got to see my kids for the first time and that’s when I found out that Robert would never walk again. I didn’t know how I was going to be a mom to him. That’s where I looked deep down inside myself and found the power that I needed to be a mom to a special needs child.

Over the last 3 years I have seen a lot of things and done lots of looking on the internet for different things that can help him grow into a great man. Medicaid tells me that he don’t need any of the things that I ask for. I don’t think they understand what it’s like to not be able to look someone in the eyes when they talk to you or even understand what it’s like not to stand when you want to.

The things that I have gone through and all the tears that I have cried because of the small things that my sons wants to do and yet he can’t. All the people in the higher offices that don’t feel that people in wheelchairs need things are wrong. Unless they have lived that lifestyle or have someone in there close family that live like that then they need to step down and let someone else do there job. I had someone make a choice for me and my family, that drunk driver took him upon himself to change my life. I have a voice that needs to be heard. My son is 10 and doesn’t know how to use his voice so, I will use mine for him. I’m so sick of people thinking that someone in a wheelchair is happy the way they are.

My son wants to do so much that he cant cause of someone else and the choice they have made for him. I have asked medicaid for things to help him his life more normal and they tell me he don’t need it well they don’t know what it’s like to be told no they cant do some of the smallest like stand up or even walk. My son now battles depression from all of this. I’m ready to go to the ones that don’t know what it is like to not be able to walk and put then in a wheelchair for 24 hours and see how they feel when they are done. See what it’s like not to be able to stand and walk, not being able to find a parking spot, having to ask for help at the store cause u cant reach something. I still have so much that I could say but will stop here. Thanks for reading.

My name is Mary Zendejas. In March, I was crowned Ms. Wheelchair California 2012 at the Ms. Wheelchair California Foundation Pageant in Long Beach, California. I will be competing with many other amazing women with disabilities at the 2013 Ms. Wheelchair America Pageant this August in Rhode Island.

As Ms. Wheelchair California, I advocate for independence, education, and employment for people living with disabilities. I also communicate both the needs and the accomplishments of the disabled community to the general public, the business community, and the legislature.

I would like to share a very personal story that you might relate to. I am forced to use a power wheelchair that is almost 20 years old. The tires are run down. The cushion is barely there. The arm-rests are torn and I risk cutting my arms on it every day. My left side arm-rest is broken and does not lock anymore. My foot pedals are caving in and I have to hold them in place by tying them with hair ties. My battery indicator always indicates low battery because it’s broken and I never know exactly how much charge it has left. I have to charge it for a half-hour at a time because it stops charging any longer than that. I am well aware that every day I leave my apartment in this old wheelchair I’m risking being stranded. My chair is also too big and does not fit through my apartment door–much less anywhere else. The chair does not have enough power to go over simple thresholds or tackle my day-to-day encounters with curb cuts and bumpy sidewalks. It is very uncomfortable to sit on after an hour, so spending the whole day in it is unimaginable. This chair is seriously torturous.

You may be asking yourself, why would I still take the risk of using this old power wheelchair whose battery could give out at any moment and that’s being held together by a electrical tape and hair ties. The answer is simple: it’s the only usable wheelchair I have at the moment.

I did not know that when I received this new power chair that I could have refused to sign for it–since I knew it was not going to work for me. I urge people living with disabilities to refuse to settle for wheelchairs and other mobility equipment that they are not satisfied with. Sometimes medical supply companies don’t necessarily care about the wheelchair user. They care more about making a quick buck. It doesn’t matter to them if the wheelchair is appropriate for you. That’s why it’s so important to research the medical supply company that is involved in helping you obtain a new wheelchair.

My first piece of advice is don’t sign! This was my big mistake. When they delivered my wheelchair, they made minor adjustments, even though it did not even have cushion yet. These adjustments meant nothing since I wasn’t sitting on a proper cushion. It’s now a year later and I still don’t have the right cushion. I have tried using different cushions that friends have let me borrow, but they are either too small, too big, too thin, do not have enough support, or aren’t slippery enough for me.

I eventually paid the price for signing off on a chair that didn’t fit my lifestyle. Six months ago, while using the chair around my apartment it completely gave out on me. It died, in the middle of my living room. I tried to reset everything, but nothing worked. I sent it in to get fixed and they brought it back two months later. They said it took a long time because they needed to order a new part, yet I barely used it. When they finally brought it back, I signed for it again! One of the biggest mistakes ever! When I tried it out, the first problem was fixed but now the tilt was broken. Again, I was not able to use my chair. By this time, my insurance no longer covered my medical supplier where my chair was purchased from. So one again my power wheelchair that is supposed to be my avenue towards independence is sitting in my living room collecting dust and I am left without a proper and suitable wheelchair.No matter what our health providers or health insurances says we “do” have a choice.

My second piece of advice is don’t let the “professionals” tell you what “you” need. It is your responsibility to tell them what “you” need. Don’t get me wrong, seating professionals are very experienced and have a lot of knowledge of what is available in today’s market when it comes to purchasing a new power wheelchair, but no one knows you better than you. I had a very professional evaluation done at a highly qualified seating center. This evaluation indicated that in order to keep me mobile and functioning on a daily basis I would need a power wheelchair with enough power to keep up with my daily activities and a high-low chair that could help me transfer. Transferring is a big part of my daily routine since I live with polio. I am supposed to conserve as much energy and strength as possible–so facilitating my many transfers throughout the day is critical. The evaluation also indicated that I needed to tilt to be able to relieve pressure from my bottom since I don’t have the strength to pull myself up. I also can’t swing my arms, so the evaluation suggested elevating the leg-rest, and obtaining a proper headrest.

The evaluation was very specific and was conducted in a professional manner. The problem arose when the medical supplier stepped in. They told me that they would not approve both the tilt and the high-low. They recommended I go with the tilt. They told me, that the tilt would have the ability to take the chair up and down somewhat. I knew I didn’t want that but I didn’t say anything and trusted the “professionals”. The reality is that in order to use the chair I really do need the high-low feature. The tilt alone made it so that I could not use the chair at all. It is extremely difficult for me to transfer to and from my bed and the toilet–two of my major concerns.

Third, if you feel alone–seek help. I felt alone and defeated, with nowhere to turn to. I stuck with a new power chair that does not work for me. I was depressed. I was upset with myself for signing for a new power wheelchair that I was not satisfied with and for trusting the medical supplier. My hope was renewed when I found out about United Spinal Association’s UsersFirst program which focuses on the needs of wheelchair users first, no matter what policies or procedures are set in place. We all have different needs as wheelchair users. We must not be treated like we’re cut from the same mold. There is a tremendous need in the disabled community to understand the complicated process of delivering a wheelchair. I recommend you check out UsersFirst’s Mobility Map–an online tool to find the best wheelchair to fit your needs. Also, be sure to complete their Wheelchair Checklist and receive an emailed copy that you can give to the people who are helping you select a new wheelchair.

As Ms. Wheelchair California 2012, I urge the disabled community and all wheelchair users to speak up and speak out. Don’t let anybody else do the speaking for you! If you feel alone and defeated seek help because you are not alone. Let your voices be heard! Don’t experience a story like my own! Make sure you are completely satisfied with your equipment. Always express your needs. And most importantly, don’t let anybody else tell you what “you” need.

I plan to fight tooth and nail until I get the appropriate and proper power wheelchair that will fit my physical needs as well as my life. I am not alone in this fight, I have UsersFirst on my side just like you do.

Mary is founder and director of DisABLED Professionals Association and very active in her community. She is also a proud member of the American Business Women’s Association and a commissioner for the City of Long Beach Citizen’s Advisory Commission on Disabilities.

Mary Zendejas - Ms. Wheelchair California

Finding the best wheelchair can be complicated. As you enter the exhibition hall facing a sea of booths displaying all types of products related to disability it might feel overwhelming, maybe exciting too. You may think: Where do I start? Who do I trust? Can I actually get in the wheelchair or car, or motorcycle or scooter? How do you know if your insurance will pay for the wheelchair you choose?

Many people found it helpful to stop by the UsersFirst booth for a map. That’s right, a map to help guide you through the process of finding the best wheelchair for you. It is called the Mobility Map. It was up on a screen live for anyone to navigate the process.

The UsersFirst Mobility Map goes step-by-step through this process. The first step is to identify what you want to do with your wheelchair. This may sound like a silly question, but there may be details in your life you might not think about until you ask yourself some questions.

For example, Mary Zendejas , Ms. Wheelchair California, shared her story with us. She said she is still using her 15 year-old wheelchair, which she likes, but it is really old; there are only a few flecks left of its original color and her leg-rests are held on with plastic ties.

Her new chair, which she likes too is, unfortunately, slightly too high and too long for her to use in her life. She says she would have benefitted from going through the wheelchair checklist before attending her wheelchair evaluation.

This checklist goes through different places and activities you use your chair or would like to. It is really important so when you start looking at what type of chair you need, you can match the equipment to your lifestyle and medical needs. We know the clinic and insurance company only want to hear about “medical needs” but if the chair is too long and you are destroying your friends’ houses, that chair, like Mary’s, may become just interesting looking furniture sitting in your home. Mary described her experience at the wheelchair clinic with the therapist and the supplier as pleasant and professional, but her new wheelchair is still not useable.

By going through the checklist, you will be reminded of places and activities that are important, even essential to you, even if you are an experienced wheelchair user. If you want, you can share this information with your wheelchair team (wheelchair supplier and therapist).

Along this theme some attendees reported they were told they would “get used to the chair.” All shared that this resulted in being uncomfortable and eventually not using the chair at all.

UsersFirst believes the wheelchair should fit you, not you fit into the wheelchair. If the chair is off by just a smidge, as you probably know, it might affect your independence dramatically. If you have any wheelchair questions or concerns, log-on and let us know. We will stay with you throughout the process– that’s what we do.

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

UsersFirst’s webinar last week attracted over 400 people. We received lots of feedback from the audience saying they would like for us to discuss more details about actual features of wheelchairs. In case you weren’t able to attend, you can check it out in the webinar archive section at National Spinal Cord Injury Association’s website.

During the webinar, we highlighted UsersFirst’s brand new on-line tool: Mobility Map. It goes over the process of finding the best wheelchair for you. Everyone is very different given who you are, what you want to do with your wheelchair – your lifestyle and what is important to you. Even so, we can present, for example, the specifics of manual wheelchairs. UsersFirst can review the various features that are commonly available and then match the features up to how they might be of use to you, in your life , with your abilities.

It would be fantastic to receive your questions prior to our next webinar so we can address them. The next webinar is scheduled for April 26th. Registration details will be available soon. We will head into the ins an outs of the manual wheelchair: the different types, sizes, weight, wheel sizes, backs, seats, wheel position, the best way to push a wheelchair, etc.

Let us know your questions or issues you have had and we will address them. Drop us an email at usersfirst@unitedspinal.org.

We look forward to your feedback.

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

The Mobility Map provides people with disabilities guidance in getting wheelchairs and other mobility equipment that meets their unique needs. It offers tips on identifying your “wheelchair team” such as physicians and medical equipment suppliers, how to obtain a wheelchair evaluation, and where to find funding.

The easy-to-read map will run timely information about specific policies and legislative issues, as well as provide a forum to take action. It will also feature feedback opportunities on each page so that content can continue to meet the needs of the user.

“The UsersFirst program brings together the voices of consumers, clinicians and wheelchair suppliers while focusing on the empowerment of the consumer,” said UsersFirst executive director Ann Eubank.

“The Mobility Map will play a big role in empowering the consumer because it guides and educates them through the entire service delivery process of seating and wheeled mobility–so that they can take charge in choosing the best equipment to meet their needs,” Eubank added.

As one of United Spinal Association’s newest programs, UsersFirst advocates for greater access to appropriate wheelchairs, mobility scooters and seating systems for people with disabilities.

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.