Kim with Dan Rutherford, IL State Treasurer.

Ms. Wheelchair Illinois 2012, Kim Brown, sat tall and moved with grace, poise and determination as she met with Illinois state representatives and Medicaid officials recently. These qualities are very helpful when meeting with the Deputy Administrator of Medical Programs for the Illinois Department of Healthcare and Family Services. Not only is the title a tongue twister, the meeting was slightly contentious since the state of Illinois passed the SMART Act.

SMART is an acronym for “Save Medicaid Access and Resources Together.” It’s a confusing name since no one has been able to explain the “together” part. The disability community was definitely not included during the planning stages of this law and is now left with diminished services affecting the independence and health of many.

While in the meeting, Kim, forced back her tears of passion to explain there are thousands of wheelchair users in Illinois who cannot live their daily lives without the proper wheelchair. A wheelchair is not a luxury; it is equipment that makes it possible for many people to be active and participating citizens. She urged the politicians and policy makers to put aside petty differences allowing wheelchair users the same access to the community as most Illinois residents enjoy everday.

Almost every week, while the legislature was in session, disability groups visited the state capital in Springfield, IL. Our presence was noticed. The groups communicated openly with each other, discussing the issues and organizing logistics to facilitate travel to Springfield.

It is a powerful experience when various groups collaborate for a common cause. For instance, the SMART Act, requires prior authorization for ALL wheelchair repairs, regardless of cost. That means if you have a flat tire, you could be waiting up to 90 days for the repair to be approved! Another result of the act (I don’t like saying the name too much), slashes funding for wheelchairs so deeply, quality wheelchair suppliers won’t be able to provide wheelchairs to Medicaid recipients.

Kim with Illinois Senator Donne E. Trotter (D)

The word “quality” is not used lightly. UsersFirst and the other consumer groups’ missions paralleled with qualified and scrupulous wheelchair suppliers’ mission. These suppliers are committed to providing good equipment and reliable service. We all have seen the “1-800” TV ads late at night about the wheelchair you can take to the Grand Canyon – the wheelchair industry representatives challenging the SMART Act are NOT that – they are the antithesis of the “TV” wheelchair. UsersFirst and other consumer groups collaborated with qualified suppliers dedicated to complex rehab technology (wheelchairs that are adjustable and reliable).

UsersFirst continues to provide education to wheelchair users and others about how to navigate the wheelchair procurement process. It can often be a complex and many times bewildering process. One of the key points detailed in the UsersFirst Mobility Map, is the importance of working with a certified and qualified wheelchair supplier. It is important to find a supplier who is certified as an ATP (assistive technology supplier) and CRTS (certified rehab technology specialist). This is detailed in the Mobility Map. Not using a qualified supplier is like going to the car mechanic to alleviate your stomach ache. The Mobility Map also suggests some questions to ask a supplier. Like, have they worked with someone like you in the past? Will they service your wheelchair? What is the warranty for the wheelchair?

For more information about this topic and to register with UsersFirst visit www.usersfirst.org.

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

Wheelchair reimbursement is drastically being slashed to the point where no wheelchair supplier can afford to provide them. And, if that isn’t bad enough, Illinois Medicaid says all wheelchair repairs (regardless of the cost) will take 60-90 days to process! We have to stop this.

We (UsersFirst and United Spinal Association) have connected with other consumer groups facilitating wheelchair consumers’ travel to Springfield to speak out against these cuts with state legislators.

If extreme cuts like these go unchallenged, other insurance entities (i.e., Medicare, BlueCross, Aetna, etc.) will very likely adopt similar draconian (cruel) policies.

We are trying to change the law so that Illinois must provide access to complex wheelchairs (wheelchairs that fit you specifically – not the ones in the airports or on TV) and the repairs that you need. Access Living, a nonprofit, consumer organization in Chicago along with the National Spinal Cord Injury Association Chapter of Illinois have been instrumental in scheduling and attending meetings at the Illinois State Capitol every week for the past month.

We have and will continue to encourage Illinois legislators to co-sponsor Senate Bill 1733/House Bill 2503 (complex wheelchairs) and Senate Bill 1734/House Bill 2502 (wheelchair repairs). The wheelchair consumer presence has not gone unnoticed at the State Capitol. Having access to the right wheelchair and service is essential in order for us to participate equally in society, as is our right.

Click here for more information about these issues.

Thank you! We will continue to keep you up to date on this issue.

The total cost of wheelchairs that are “complex” (anything other than what you see on TV or used for transportation in an airport) is miniscule, infinitesimal, even itsy-bitsy within overall health expenditures in the United States. It doesn’t make much sense that insurance companies pay thousands and thousands of dollars to save a life with life-flight, emergency room procedures, surgeries, intensive care stays, rehab stays, home health services, medications, etc. and then not provide necessary medical equipment that facilitates healthy functional independent living!

Complex equipment (like power wheelchairs, good cushions, and lightweight rigid manual wheelchairs) does the following: 1. provides the opportunity for Americans with disabilities to live independently and 2. decreases problematic issues like pressure wounds, pneumonia, pain, swollen legs and feet, with little to no assistance from others.

For example, insurance companies will pay tens of thousands of dollars to fix a pressure wound, but deny a wheelchair that: 1. will last at least five years and 2. only cost $1,000-$5,000 per year. Wheelchairs are in no way as expensive as so many other medical devices, procedures and medications that help keep us healthy.

Last week we (wheelchair users, wheelchair makers, wheelchair suppliers and advocates) met with over 220 elected officials in Washington, D.C. letting them know that “complex” wheelchairs are necessary medical equipment for us to be able to fully participate in our lives. We began our day with a breakfast meeting with Representative Crowley from New York who introduced the bill (HR 942) as a co-sponsor with Representative Sensenbrenner from Wisconsin. HR 942 requires Medicare to treat complex equipment differently than the TV wheelchairs. It’s a BIG deal. We need to be seen for what we are – Americans with disabilities with a life to live. And, we cannot live the life we choose if we are forced to use cheap, inferior products.

We demand equipment that meets our functional and medical needs. When the insurance company says “we don’t pay for wheelchairs that you might use outside” – now it’s personal. Wheelchair users should NOT “just accept what we can get.” Wheelchair users like every American have the right to equal access to the community.

Would you like to voice your opinion to your representative?

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

The form will help UsersFirst mobilize wheelchair users, when needed, to address private, state and federal policy issues through timely alerts.

“We developed the form to make it easier to join UsersFirst’s grassroots movement to improve access to wheelchairs and other mobility equipment that are essential to the health and independence of Americans living with disabilities,” says Ann Eubank, UsersFirst vice president of Community Initiatives.

“ISS is one of premier conferences when it comes to showcasing wheelchair technology that empowers people with disabilities to live the lives they choose,” says Ann Eubank, LMSW, OTR/L, ATP, CAPS, vice president of Community Initiatives at UsersFirst.

For the first time ever, the expo floor at ISS will be open to the public rather than just professionals, giving wheelchair consumers the opportunity to check out the latest products and services from over 100 exhibitors that will enhance their mobility and independence. View the list of exhibitors.

“UsersFirst is excited to give consumers a chance to get a close look at products and services that fit their lifestyle and to meet face-to-face with professionals that understand their needs,” said Eubank.

“It only makes sense to welcome the public to the ISS exhibit floor. There are so many amazing innovations out there that improve mobility, but many people aren’t even aware of them,” she added.

ISS is an annual conference where therapists and clinical professionals gather to discuss advancements in the areas of seating, positioning and mobility. Topics include service delivery, product development, research and outcomes.

Knowledgeable manufacturer’s representatives will also be on hand to answer questions and demonstrate products.

To register for The Wheelchair User Experience, visit https://www.unitedspinal.org/forms/events/iss.html.

This valuable feedback helps us advocate in Washington, DC to change policies that affect our mobility and independence.

You can take the survey here.

Every submission is appreciated and provides real-world examples of how some public policies–which are supposed to help wheelchair users–aren’t doing such a good job at it.

Equipped with your feedback, UsersFirst and United Spinal’s advocacy efforts on Capitol Hill are moving full steam ahead!

Our goal is to bring your opinions straight to legislators and government officials so that they can see and hear firsthand the devastating effects broken public policies have on wheelchair users. Check out our annual Roll on Capitol Hill event for more info on how we achieve this.

The human impact of broken policies can easily get lost in wonky language (DC talk) that legislators breeze through when bills are passed.

With over 300 returned surveys, this is obviously a hot topic. Users speak out, here are some of the comments collected from the survey:

–“I have experience [with] delivery delays, wrong products, difficulty contacting suppliers, [it’s]difficult getting repairs, wheelchair providers far from my home”

–“Most reliable providers in my area have gone out of business so when looking for a new medical equipment place, I had to travel two hours by bus.”

–“The indoor only rule is outdated and ridiculous , … we do go outdoors all the time , and we need outdoor wheelchairs to be covered – not limited to old outdated rules which restrict wheelchair users from going out.”

–“The tread was gone from my wheels on my wheelchair. However, to get it repaired/replaced I was told I had to get the chair to Miami. One: I live nearly 5 hours away from Miami … Two: how can I “send in” the part needing repair when it’s the fricking wheels needed for mobility. Its not like I have a spare chair to use. So in effect I have been told that in the entire state of Florida, only one guy in Miami can repair/replace wheelchair tread?”

Most people might not know the policy by its official name (like competitive bidding), but we are all too familiar with the damaging effects some of these policies have on our lives. That’s why it’s critical we come together as a community to demand that wheelchair users, caregivers, professionals and advocates are included in the conversation when policies are created for us.

UsersFirst will continue working on changing policies for the better and we hope you will continue to supply us with your views and opinions. They are so important to the work we do.

Here are a few ways to join in our efforts. You can register with UsersFirst to stay up-to-date on policies that affect you and learn how to help fix them; participate in our free “Independence Through Advocacy” webinar series, share your wheelchair stories and frustrations so that we may spread the word to others. And, enjoy our candid photos and comments on Facebook.

Thank you!

The grassroots effort was successful! Medicare recognized our stories as we illustrated the devastating effects to our health and independence without appropriate therapy services.  Well-done advocates. Your time spent was definitely worthwhile.

The Medicare December 2012/January 2013 budget discussions resulted in an extension of the therapy cap exceptions process for an additional year through December 31, 2013!

We did it!

UsersFirst will continue to monitor ANY and ALL policies that affect the community of people who use wheelchairs.

Thank You Advocates!

Your information will not be shared without your permission. This is a secure form.

Your voice will help us advocate in Washington, DC to change policies that affect your mobility and independence, such as Medicare’s bidding program. This program not only restricts access and choice of wheelchairs and medical equipment, but also lets Medicare decide what providers its beneficiaries can use.

Not to get too political, but Americans pay into Medicare our entire working lives and most people who use mobility equipment like wheelchairs or scooters expect the device and the service to work. Medicare recipients deserve quality products and service from their medical equipment suppliers that is accessible and not too far from home! It is our right to have access to our communities and be mobile in our own homes.

In different regions of the country Medicare has adopted a program called the “bidding program.” It is what it sounds like. Medicare requires medical equipment companies to bid at a low price to have the opportunity to be offered a contract to provide Medicare business for a specific area, regardless of your choice of provider. That could mean, because they receive such a low price for the products and service they provide, they may only be able to carry the cheapest products (not as durable or comfortable) and may reduce their service. For example, consumers have voiced their concerns stating their equipment supplier is now too far from their home; the provider they have been using is now out of business, or the device they need is not available anymore.

Medicare’s bidding results in decreased freedom of movement and puts Medicare recipients at risk for secondary health issues related to lack of movement.

Take the Survey

We encourage you to speak your mind and thank you for your opinion.

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

Help put an end to these unacceptable delays!

Take Action Now

The provision, signed into law by Illinois Governor Pat Quinn, requires prior approval for all wheelchair repairs for Medicaid beneficiaries. The problem is the approval process takes way too long, jeopardizing the health and well-being of people with significant disabilities living in Illinois.

The National Spinal Cord Injury Association and its Illinois chapter have sent a letter to Governor Quinn and representatives at the Illinois Department of Healthcare and Family Services suggesting alternatives to the preauthorization requirement that will have less of a devastating impact on wheelchair users.

“To a wheelchair-user, a wheelchair is an essential medical device that has been prescribed because of medical and functional necessity. Waiting for even the most basic of wheelchair repairs will compromise a person’s independence, health, employment, schooling, and other daily activities. Therefore, we ask that you address the deficiencies in the existing law through an emergency rule,” the letter states.

Read the Full Letter

The proposed solution includes:

1. The Illinois state legislature should repeal the requirement for prior approval on all wheelchair repairs.

2. Governor Quinn should implement an emergency rule requiring prior approval ONLY on repairs that will cost $1,500 or more.

3. Two-day turnaround time requirement for the administrative review.

4. Establish an appeals process for denials of repairs in excess of $1,500.

Senator Harkin with UsersFirst advocate Jenn Wolff, our president Paul J. Tobin and Jim Weisman, the head of our policy department.

In June, the Roll on Capitol Hill was a great success where 50 wheelchair users and almost 100 advocates completed over 100 congressional visits. We let members of Congress know that our mobility equipment is vital to our independence and we reject the “one size fits all” mentality.

David Estrada, MA chapter leader meets with a member of Congress.

Your story matters! UsersFirst grassroots efforts work because of you. With access to our 29 chapters and 44,000 members we are able to stay connected and represent our community’s needs in DC effectively and quickly. Policy makers understand that each consumer story represents possibly hundreds of people who are similar to you; yet don’t have the opportunity to speak out.

Thank you for your willingness to stay engaged with us.

UsersFirst had the opportunity to spend time with many chapters who are doing amazing work. Thank you to all the peer mentors, chapter leaders and members that make it happen.

Oklahoma chapter leaders making a difference.

We promise to continue updating you on any legislation that affects our community and to take your concerns directly to Washington. We thank our policy department in DC for bringing our message to policy makers with fervor and grace.

This New Year we invite you to stay in touch with us on Facebook www.facebook.com/UsersFirstAlliance

And, as an advocate, ask your friends and network to join the UF movement at www.usersfirst.org/join-with-us/form/

May we push forward this New Year as a united voice of people who believe all people deserve the right to the right to move freely in our lives – the right to independence and freedom.

We wish you a loving and peaceful New Year!

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