Meeting the Challenge

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Iowa attendees Angie Plager (left) and Jen Wolff brought their positive energy to the awards reception, following a long day of lobbying as part of this year’s Roll on Capitol Hill.

More advocates, more congressional visits and more excitement made the 2nd Annual Roll on Capitol Hill, held June 16-19 in Washington, D.C., even more successful than its predecessor. Over 60 wheelchair users from NSCIA chapters across the country stormed our nation’s capital for 200-plus visits with legislators to make them understand the needs of the SCI/D community and how they can better serve it.

Attendees spent Monday preparing for their day on the Hill with a series of informative speakers and presentations on issues ranging from Medicare and Medicaid to complex rehab technology and what to expect during legislative visits. Tuesday morning kicked off with a procession of vans, buses and cabs transporting all the advocates to the Hill for a long but fun day of meetings, capped off by a rousing awards reception that honored Sen. John McCain, among others. Throughout, the energy level was high and there was an inescapable sense that we were laying the groundwork for real change.

“It was amazing,” said United Spinal President Paul Tobin. “If I were to compare the first Roll on Capitol Hill to the second, I think there was a completely different feel to it this year. We had a much a higher level of engaged individuals coming from the chapters this year, who are interested in advocacy, who want to do advocacy and are passionate about it — and I think that came across.”

Here’s what some of the attendees had to say about their week in Washington.

Getting There

Finn M. Bullers, Kansas

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Finn Bullers (right) and Willis Washington are all ears in one of the 200-plus Hill visits this year’s attendees made.

I should have known the moment the alarm sounded that the Roll on Capitol Hill was going to be a grand and perilous adventure.

The challenge? Haul my dead-weight carcass, a teenager, a nurse, a 300-pound Permobil C300, batteries, ventilator, suction machine and “normal people” stuff from Kansas City to the Marriott in Arlington, Va., for a three-day conference.

The goal? Import Midwestern common sense to Capitol Hill in an ongoing struggle to fight for the health, independence and freedom of people with disabilities worldwide.

Day One — Sunday, June 16: 5:40 a.m., Kansas City: Pre-printed boarding passes in hand, Delta wants $100 for four bags of medical stuff. No ADA way and another delay, I say. OK, says a mid-level manager. Charge removed. Security frisk. Chemical swabs across my power chair.

Positive hit trips alarm and flashing red light. Closed-door private screening and crotch pat. Oddly enough, I can find no record of a wheelchair unabomber or a Timothy McVeigh quad with enough fertilizer jammed inside aircraft aluminum wheelchair tubing to blow up anything larger than a balloon. No bomb found.

Sent to the wrong gate, separated from my nurse. We miss our flight. Rebooked 90 minutes later. Our luggage flies to Atlanta — without us. New gate. Security check, again — swab, pat and stern look from a humorless, never-missed-a-meal security guard.

“I need to see that,” he told me.
“What,” I said.
“That,” he said, finally pointing to my stomach. “I need to see your pouch.”
“Kind, sir,” I think to myself. “Surely you have mistaken me for a kangaroo.”

On to Atlanta. Aisle chair barely fits between seats. Aisle arm rests scrape hard my coccyx on the transfer. Damn. Poor seat location introduces my knee to all the plane’s carry-on luggage. We watch out the plane window as five men in orange vests bounce my Permobil C-300 down at least 30 steps to the underbelly of the plane.

Ka-thunk. Ka-thunk. Ka-thunk … On board, the breathing machine battery emits its annoying beep, foreshadowing future frustration.

Touchdown D.C. Off to Super Shuttle and what begins as a confirmed-ahead-of-time, 20-minute wait for an ADA ride to the Marriott turns into a 4-hour and 45-minute debacle of delays, misinformation and malfeasance.

Two hours later, the big blue shuttle folks still tell us: Only 20 minutes more.

By hour 3.5 a shuttle arrives. We wait. And wait. It’s hot and claustrophobic. The van walls close in. The lift refuses to return to its upright position and simply won’t respond to quiet curses, hand cranks or swift kicks from steel-toed boots. That’s it. We’re outta there.

Super Shuttle calls competitor Red Top Taxi to do what they can’t — deliver us to the Marriott. Reimbursement? File a complaint, they say, and we’ll get back to you “later.”

Our entourage moves in to the Marriott for a three-day “Roll on Capitol Hill” lobby effort. We have a few real-life experiences to discuss with our congressional leaders, but not before an extra bit of drama in Room 5031.

The Trilogy ventilator keeping me breathing beeps shrilly and in rapid succession. Its message: Dude, your batteries are dead and you’ve got about two minutes of internal power and then I’m going to bed. Lights out. The other three batteries we packed — which respiratory supply provider Sleepcair techs said each would last 3.5 hours per charge — we’re dead after less than two hours.

One option? Plug in the vent, rendering me immobile — unable to attend the conference social hour where the real networking happens. Plan B: Get security to find a PlayStation cord identical to the one I use for my breathing machine. But PlayStation is passé these days and hotel security tells us the cords were thrown out months ago.

Less than a minute of air left.

Thirteen-year-old Christian, my problem-solving son, makes a sudden move to his camera bag, grabs his charger and yanks out the camera-charging cord.

Christian plugs one end of the cord into the headboard outlet, and the other end into the breathing machine. My angel descends. And Bingo, the green “good-to-go” light shines brighter than ever before. I take countless deep breaths and hug my son. Silence fills the room as the breathing machine begins again its rhythmic pattern to force air into my muscular-dystrophy compromised lungs.

At nightfall, recollections of a Danish lullaby my dead father would often recite to me fill my head:
Let me think over all the deeds I have done today.
Good deeds to do again. Bad deeds to forego and forget.
And now I shall sleep and grow while I sleep.
And tomorrow I shall be happy.

A Sea of Wheelchairs

Kevin Weilacher, Ohio

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Monday’s busy schedule of speakers kept Kevin Weilacher’s attention.

I can only imagine what all the individuals that work at the Capitol must have had on their mind when they saw this literal sea of wheelchair users, rolling everywhere. Up the elevators, down the elevators, back and forth on the tram that runs from the Senate side to the House side and back again, in and out of Congress and Senate offices. We were everywhere.

I am very active in advocacy for the neurological disorder I have, and when I had this opportunity to attend ROCH 2013, I knew I had to go. This was one more step in my advocacy work that I just had to do.

My overall experience attending this event was one of the most exciting opportunities I’ve ever had. Just the fact that I was there at the Capitol, the building where our nation’s laws are made, the history of those hallowed halls — it was an experience that I will not soon forget.

To be there to have an opportunity to speak to members of the Congress and Senate or their assistants meant a lot. We were there to speak for the millions of disabled people throughout the nation, to try and make a difference and make the world better and more accessible for us. I truly felt after the event was over that we did make a difference.

I know that the members of Congress and Senate are some busy folks, so in most cases we spoke with an assistant, but in following up with those assistants, I have come to find out that most of the representatives whose offices I visited had read the material we left and seemed to be supportive of the programs that we were concerned with. This made me very happy and it verified in my mind that we did truly make a difference.

Having the opportunity to meet and work with the other NSCIA representatives from all over the United States was an incredible experience. Each person made it from whatever state they came from to Washington, D.C., regardless of challenges, to share their own stories. These were some very passionate people who believed in this goal. I would gladly work with each and every one of these people again, and the staff of the United Spinal Association are some of the most amazing people I’ve ever come to know.

I made some lifelong friends in four short days. How wonderful is that?

Educating Congress

Angie Plager, Iowa

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Angie Plager, and her mom, Becky, listen as Sen. John McCain accepts the VetsFirst Congressional Bronze Star Award.

Throughout the Roll on Capitol Hill I heard about many positive and encouraging encounters with legislators and their staffs from other fellow participants. Personally, my four meetings went very well. I felt I was well-received, and the staff members were not trying to rush through our scheduled meeting just to say they met with a person that has a disability. Not every staff member I spoke with was aware of all six of the issues we were advocating for so it was refreshing that they took the time to ask me questions, rather than just glazing over the issue. (For more on the issues, see United Spinal’s position papers at www.unitedspinal.org/action-center/2013-position-papers.)

In addition to just talking about the issues, I was able to actually demonstrate one of the six issues we were discussing – complex rehab technology. When explaining the complex rehab technology issue and why it’s important, the staff person started to look slightly confused, so I asked him, “Are you familiar with what complex rehab is?” He said, “I think so, but why don’t you refresh my memory.” So I did! I explained to him that I’m sitting in complex rehab … my power chair. I proceeded to use my joystick and show him what tilt, recline, and powered foot rest features do while telling him the importance of why my body needs my chair to change positions (avoid pressure sores, less hospitalizations, avoiding secondary health issues, decreasing medical costs, etc.). He was glad I showed him why the features on my chair are needed and realized how much sense it makes to not cut complex rehab technology, and why competitive bidding has a very negative impact on individuals who require these specific items of durable medical equipment.

I thoroughly love advocating even though it is exhausting at times, but it’s totally worth it. Being on Capitol Hill and rushing to most of the meetings was tiring, but the meetings themselves were good, and I feel that each staff member I spoke with was glad we were there being advocates for ourselves and others.

Overall, the entire experience was exciting, exhausting, enlightening and empowering. I’m looking forward to next year and strongly encourage you to attend.

Standing Up for CRT

Vanessa Cizmar, Texas

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Vanessa Cizmar provides a first-person demo of CRT.

Roll on Capitol Hill was a very empowering event, with giant implications. As a physically disabled person, it is easy to pigeonhole yourself as helpless, dependent on others and angry when things do not happen the way you want them to. Breaking out of the “limited” norm is a reminder of how powerful our voice is. Speaking face to face with many of our representatives and their staff members showed there is concern with the current struggles in the disabled community.

All of the people we spoke with were extremely receptive to our voices, whether they were Democrat or Republican. Our struggles stretch to both sides of the aisle. Being a very high level quadriplegic, I was not expected to ever regain any type of function. This became an issue when it came time to purchase my wheelchair. It took a year to fight to get the chair that not only I needed, but that I believe all wheelchair users truly need. My chair has the capability to stand, which prevents many health issues associated with a spinal cord injury. One thing that is extremely disappointing is this chair is not even presented as an option to patients. The “Ensuring Access to Quality Complex Rehabilitation Technology Act of 2013” would help address this issue. I encourage everyone to fight for this piece of equipment, due to the fact the benefits greatly outweigh the cost.

The most memorable moment from ROCH was visiting Congressman Lamar Smith’s office with fellow Texas NSCIA member Earle Powdrell. We both rolled into the congressman’s office standing up. It was a very powerful moment. After hearing our testimonies regarding the miraculous recoveries we are both experiencing, the staff were able to see exactly why we are fighting for this piece of legislation.

I believe our representatives have genuine concern and want to help people who legitimately need assistance.
The biggest factor in receiving the much needed assistance is the stigma associated with the large population
of people abusing our current assistance programs. Let us not kid ourselves, it is a huge problem. Unfortunately we are stigmatized by association with those who are abusing the system. It is about time we have a better check and balance in these programs for the good of the individual tax payer and the country as a whole. Participating in Roll on Capitol Hill has proven to me how important it is to let my voice be heard and convinced me that our representatives are listening.

First Time = Success

Willis Washington, Oklahoma

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UsersFirst director Ann Eubank and Willis Washington enjoy the opening night reception.

ROCH 2013 was a great opportunity to share my prior experience at conferences and interacting with our congressional representatives. As part of the event, I was asked to speak to the first-time NSCIA members and those who had been before. The focus of my presentation was to explain what an advocate is, why we are needed, and how we can effect positive change by participating in ROCH 2013.

I attempted to lay out the overall process of advocating on the Hill and defining our goal. I hope that I eased the nerves of our first-time advocates. I used the last portion of my presentation to ramp up and rally the advocates with confidence. We then left for our scheduled meetings on Capitol Hill.

My first three meetings with congressional staff members went surprisingly well. The fourth and final meeting with Congressman Lankford from Oklahoma also was very pleasant. I briefly explained the three talking points I was most familiar with and focused on the need to “Preserve ocial Security Benefits.” I explained my personal situation, which is that I’m college educated, wanting to re-enter the workforce and contribute to society but that I am caught in a Catch-22: If I earn a certain amount over my SSDI cap, I risk losing the financial stability and medical insurance coverage of Medicare. For example: “If I go back to work full-time get off SSDI and Medicare completely and I’m laid off due to the economic instability, I risk being totally exposed and my health care being at high risk with no ability to re-apply for Medicare assistance for two years.”

As luck would have it Congressmen Lankford was about to vote on the House floor on some issues related to this talking point, in which we found a connection. Congressmen Lankford asked me if he could call me to further discuss some issues related to Social Security benefits. Overall I would have to say the 2013 ROCH was in many ways a success.

More Than Advocacy

Kim Harrison, Georgia

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The well-attended awards ceremony was bustling with members of Congress, staffers, veterans, supporters and advocates like Kim Harrison, center.

For my second time attending the Roll on Capitol Hill, my husband, Brian, and I went up two days early for a mini vacation. After seeing the sights and figuring out the accessible local transit, by Sunday night it was time to reconnect with friends from ROCH 2012. As we were checking in at the hotel, more and more familiar faces appeared in the lobby. We picked up where we left off last year.

Monday’s info day was very enlightening and informative.
The speakers knew their topics and helped us better prepare ourselves for our day on the Hill. After we broke for dinner, the old and new friends joined back up and made Monday a great night into the wee hours.

Tuesday morning breakfast led into a motivational speech, and we headed to Capitol Hill with a pep cheer. The vans were lined up out front ready to load. NSCIA/Georgia was slotted for three meetings and three drop-bys, where we stop in and leave information packets. While zig-zagging from House to Senate six times in the tunnels I ran (rolled) into U.S. Representative John Lewis (Ga.). I blocked him and his entourage until he could hear what I had to say. Before his aide pushed him by me, we gave him pamphlets from the ACCESSCRT website. He has signed on and agrees to help us gain support. Just when we felt like pros navigating the tunnels, it was time to head to the U.S. Capitol for the awards reception.

It was an honor to be in the same room with so many positive activists and leaders. Once the awards were over, I turned into a one-woman USA/NSCIA welcoming committee. I went to everyone in the room that did not have on a United Spinal Association lanyard and introduced myself, thanking them for attending and for their support. I felt a little like Eric Stratton, Delta house Rush Chairman from Animal House. As the reception wound down, we all started to head back to the vans to be loaded up and taken to the hotel. On the way down the hill a few of us stopped for a moment, and had a picture taken with the U.S. Capitol behind us. We rolled into the vans as the sun set and reflected on our day and our many accomplishments. We were already talking about ROCH 2014.

As everyone gathered for pictures and exchanging information on the final morning, I started to feel like a kid leaving summer camp. I am both touched and honored to have been a part of such an exciting event and know that all of us who attended ROCH 2013 will take away an experience that cannot be measured. We can’t wait share what we learned with our local chapters. This will keep them fired up, excited and continuing to pursue the work from ROCH 2013.

Legislative Update

As this issue goes to press a month after the Roll on Capitol Hill, the impact and the success of the event is obvious in the halls of the Senate and House. Thanks to the personal connections and follow-up efforts of our members and advocates, approximately 100 representatives of more than 70 congressional offices attended a July 15 briefing on HR 942/S 948, the Ensuring Access to Quality Complex Rehabilitation Technology Act, which will create a separate benefit category for complex rehab technology and ensure access to critical medical equipment for people with disabilities. Just a few years ago the idea of complex rehab was completely foreign to almost all of our representatives. Now, thanks to our efforts, 59 representatives have signed on to the House bill and three sponsors on to the Senate bill (which was only just introduced in May).   We’ve also signed up 29 cosponsors for the ABLE Act since ROCH, adding up to a total of 199. The ABLE Act is the bill that helps individuals and families save private funds to support people with disabilities for the purpose of maintaining their health, independence and quality of life. Twelve cosponsors from both parties have signed on to HR 1717, the bill that improves your access to all types of durable medical equipment and supplies — not just your wheelchair — out of a total of 142 cosponsors. With your help, more cosponsors are signing on to both bills every day.

In addition to those bills, much progress was made on moving the Senate toward ratifying the UN Convention on the Rights of People with Disabilities and educating representatives on both sides of the Capitol about the issues facing people with disabilities who rely on Medicare, Medicaid and Social Security benefits. Time and again, we hear from representatives how invaluable your personal stories are in shaping their views and policy efforts. Let’s not give them an excuse to ignore us or our issues. Let’s keep the pressure on, let’s tell them who we are and what makes us roll — and we can make a difference in how policies impact us.

united-spinal-teamThe United Spinal team: Front row: Bill Fertig, Paul Tobin, Ian Ruder, Nick LiBassi. Back row: Abby Fitzsimmons, Alexandra Bennewith, Ann Eubank, James Weisman, Mary Peterson, Amy Blackmore, Lindsey Elliott, Marlene Perkins, Carol Khoury, Megan Duffy, Carol Tyson. Not pictured: Heather Ansley.

Seen around The Roll

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Famed disability advocate Judy Heumann chats with an attendee at the awards reception. Heumann was one of many speakers during the ROCH info day.
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The camera loves UsersFirst head Ann Eubank and Life in Action editor Ian Ruder.
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Attendees always found time to make new friends and connections despite the busy schedule.
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Sen. John McCain is congratulated by Terry Moakley, chair of the VetsFirst Committee.
tobin-langevin-greetPaul Tobin, president of United Spinal, greets Congressman Jim Langevin, an honoree at last year’s ROCH.