Wheels In MotionWheels In Motion

April 2016April 2016

Paralyzed Veterans of AmericaCentral Florida Chapter

2711 S. Design Ct.Sanford, FL 32773-8120Phone (407) 328-7041Fax: (407) 328-7139

Website: www.pvacf.orgEmail: ccentralflorida16@cfl.rr.com

Chapter Officers 2016

President ................................................ Steve KirkExecutive Director .................................. John DeMauro Vice President ........................................ Sean GibbsNational Director ..................................... Steve KirkTreasurer ................................................ Charlie MerrittSecretary ................................................ Sharona Young

Elected Board Members

Jim Trago ........................... ’17 Brian Terwilliger ................. ’15 Richard Cerezo.................. ’16 Ken Weas .......................... ’16

National Liaison Vice President: Charlie Brown

Appointees

National Service Officers: Earnest Hill (386) 755-3016

David Ray (407) 631-1000 Ext. 11835

Hospital Liaison ................................ Sean Gibbs Sports Director.................................. Brian TerwilligerEditor ................................................ Stephanie MojicaOffice Manager ................................. Joanne PorettiFunction Coordinator ........................ Pat GriffithMembership/Vol Coordinator ............ Brenda Ciccarello

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Stephanie MojicaWheels In Motion Editor

Mission Statement

Paralyzed Veterans of America Central Florida, a congressionally chartered veteran’s service organization provides a platform of advocacy, education and research, communication, adaptive sports and recreation for veterans paralyzed as a result of spinal cord injury or dysfunction, in an effort to afford them with the highest quality of healthcare and life experiences.

Joanne & Sharona...................On the Cover Van Raam Veloplus - the retail value of the bike is $6,125 and will be featured in this year’s Memorial Day Parade

President.............................................4Executive Director...............................6Vice President.....................................8Who’s Who.........................................10 Advocacy & Legislation pics...............11Birthdays/Membership........................12Wheelchair Games.............................14Golf Tournament.............................15 & 16National Service Officer.......................17Wheels on the Go................................19

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From the President

April is Paralyzed Veterans of America Awareness Month, and I thought what a good time to mention our first and only

paralyzed US President, Franklin D. Roosevelt.

In 1932, in the depths of the Great Depression, Roosevelt successfully defeated incumbent Republican president Herbert Hoover to win the presidency of the United States. In his first hundred days in office, which began March 4, 1933, Roosevelt spearheaded unprecedented major legislation and issued a profusion of executive orders. These instituted the New Deal—a variety of programs designed to produce relief (government jobs for the unemployed), recovery (economic growth), and reform (through regulation of Wall Street, banks and transportation). The repeal of Prohibition in 1933 added to his popularity, helping him win re-election by a landslide in 1936. Having been energized by his personal victory over his polio, FDR relied on his persistent optimism and activism to renew the national spirit.

Let us revisit that last statement, because it is not entirely accurate. In August 1921, while the Roosevelts were vacationing at Campobello Island, New Brunswick, Canada, Roosevelt fell ill and was diagnosed with polio. It left him with permanent paralysis from the waist down. Following the illness, Roosevelt remained out of the public eye for several years, turning his attention away from politics and toward his legal practice.

For the rest of his life, Roosevelt refused to accept that he was permanently paralyzed. He tried a wide range of therapies, including hydrotherapy. In 1926, he purchased a resort at Warm Springs, Georgia, where he founded a hydrotherapy center for the treatment of polio patients; it still operates as the Roosevelt

Warm Springs Institute for Rehabilitation. In 1938, FDR founded the National Foundation for Infantile Paralysis, now known as the March of Dimes.

Below is a rare photograph of FDR in a wheelchair, with Fala, his dog, and Ruthie Bie, the daughter of caretakers at his Hyde Park estate. The picture was taken by his cousin Margaret Suckley. Because of our Chapter’s repurposing of durable medical equipment an old wheelchair was donated that Roosevelt used, when traveling by train. (That’s the claim, we have no way to verify it)

He laboriously taught himself to walk short distances while wearing iron braces on his hips and legs by swiveling his torso, supporting himself with a cane. He was careful never to be seen using his wheelchair in public, and great care was taken to prevent any portrayal in the press that would highlight his disability. Another photo was taken by a sailor aboard the USS Indianapolis in 1933, and one more was published in a 1937 issue of Life magazine.

Film clips of the “walk” he achieved after his illness are equally rare. He usually appeared in public standing upright, supported on one side by an aide or one of his sons. FDR used a car with specially designed hand controls, providing him further mobility.

Roosevelt’s health seriously declined during the war years, and he died three months into his fourth term. He is often rated by scholars as one of the top three U.S. Presidents, along with Abraham Lincoln and George Washington.

Steve Kirk

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Executive Director

From February 29-March 3, the Government Relations Department conducted its annual Advocacy and Legislation Seminar. There

were nearly 100 total attendees with one of the biggest participation rates ever. It also included quite a few new attendees as well.

The Seminar included a two-day training session that focused on the wide variety of issues being addressed by the National Advocacy and Legislative Programs. The Advocacy staff focused heavily on air travel and the Air Carrier Access Act, as well as Complex Rehabilitation Technology and voting. The Legislative staff focused on protection of specialized services and the need for reinstatement of the mandated capacity report, as well as procreative services, expansion of the VA Caregiver Program, and potential reform of the delivery of veterans’ health care. One of the major highlights of the week was the presentation of Fred Downs, PVA Prosthetics Consultant, on his military service in Vietnam and his subsequent 38 years of service in the VA’s Prosthetics Service.

After the two-day training, Sean Gibbs and I spent two days working our way through the halls of congress visiting the offices of sixteen representatives from the State of Florida. Three of them (Rep. Daniel Webster, Rep. Jeff Miller and Rep. John Mica) were actually in their offices and took the time to speak with us. All three congressmen were very supportive of our concerns and expressed an interest in helping sponsor the bills we were proposing.

The week concluded with the annual testimony of President Kovach and the Congressional Reception on Capitol Hill. House VA Committee Chairman Jeff Miller (R-FL) was presented with the 2016 Gordon H. Mansfield Congressional Leadership Award during the reception.

While I was “on the hill” I used a power wheelchair to help me, since my post-polio syndrome was making walking a little challenging. By doing so, I was able to get a “waist’s eye view” of the world and an understanding of some of the challenges people confined to a wheelchair face every day. I found out how difficult it is to balance lunch on your lap while maneuvering through masses of able bodied people who had no real concern about my struggle. I learned that it is not advisable to try to work your way through the right side door of a double door when your joy stick is on the same side you need to use your hand to push open the door. I

learned that waiting for an elevator while sitting in a wheelchair doesn’t mean other people, who arrive at the elevator after you, are going to be courteous and let you in the elevator but will instead push by you to get ahead of you. I learned that people walking on the sidewalks are not necessarily going to step to one side to allow you to make your way in the opposite direction. On more than one occasion, I found it necessary to holler out “look out, coming through!” In order to not run right into them. I learned that underground rail systems, although accessible, are not easily accessible and often mean

wheeling from one end of the train station to the other just to get up or down a level. I also learned it is not smart to leave your charge cord in your hotel room expecting your battery to have enough power to carry you throughout a long day.

My week in Washington DC was eventful, interesting and educational. I returned home with one important lesson learned. Knowledge plus experience equals wisdom. I am wiser and better understand because.....

John DeMauro.

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Every year, PVA National hosts an Advocacy / Legislation Seminar in Washington D.C. The Advocacy /

Legislation Seminar allows all PVA chapters including PVA Central Florida to visit our local Senators and Congress(wo)men to discuss topics that are important to our SCI/D members. This year, PVACF sent our Vice-President (Sean Gibbs) and Executive Director (John DeMauro) to the event. All topics were important, but because of time restraints, we could only talk about 3-4 topics within our 15-minute scheduled appointment. This year’s main topics (Point Papers) included:

• Expand Eligibility for the VA Comprehensive Caregiver Program –

This topic deals with expanding eligibility of caregiver services to pre-9/11 Veterans. The current legislation only covers Veterans with Post-9/11 service.

• VA Reproductive Services – This topic is about getting the VA to cover the costs of reproductive services to SCI/D Veterans.

• Air Carrier Access Act – This topic was presented because it is the 30th Anniversary of the passing of the Air Carrier Access Act. PVA presented a website where (Veterans AND Non-Veteran) persons with disabilities can go to share stories and experiences at airports and on airplanes. www.AirAccess30.org.

• Veterans Healthcare Reform

• Protection of Specialized Services – This topic was talked about because there have been talk of transforming Veteran healthcare to a system where Veterans can go to any provider to get services and the VA system would be phased out. We were reassured by ALL legislators that we spoke to that no one wanted to dissolve the VA Healthcare system. This is important to our PVACF members because the VA provides services to SCI/D Veterans that no other civilian hospital can match.

• Problems With Denial of Clothing Allowance

• A Separate Medicare Complex Rehabilitation Technology

• Seniors and Veterans Emergency Benefits Act

• Improved Beneficiary Travel for Catastrophically Disabled Veterans –

PVACF found this topic important for our members because we are starting to see a trend in non-service connected Veterans in regards to their healthcare. We are finding that non-service connected Veterans are postponing their doctor visits due to the cost of driving to the VA. If travel benefits were extended to these Veterans, PVACF feels that we would see an improvement in their general health.

Due to the high number of visitors to the Senator and Congress(wo)men offices, we usually discuss point papers to a staff member or intern at the offices. I want to point out that for the past three years that I’ve done this seminar, Congressman John Mica has dropped what he is doing and found time to speak to us in person. This year, we were also honored to speak to the Chair of the House Committee on Veterans Affairs, Congressman Jeff Miller. Both meetings were very productive and both Representatives were very receptive to the specialized needs of Veterans with SCI/D. For more information on these point papers, please visit our newly updated website at www.PVACF.org.

Vice President

Sean GibbsIn front of Rep. Corrine Brown’s office

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Who’s Who in the PVACF

Paralyzed Veterans of America’s National President is Al Kovach, Jr. of Coronado, CA. He was

re-elected national president in May of 2015. A member of the elite U.S. Navy SEALs, Mr. Kovach broke his neck in a parachuting accident in 1991. He has served at the highest levels of leadership within the organization since 2007. Al began his service to PVA in 1991 at the chapter level as Government Relations Director for the Cal-Diego Chapter in San Diego and has since served on its board of directors. Al has been a two-time winner of the LA Marathon, a participant in the 1996 Paralympic Games and completed a 3,700 mile transcontinental

Deloitte Consulting Donates $2,600 to PVACF

triathlon. He was selected as San Diego Hall of Champions’ Disabled Athlete of the year in 1999. He was honored by KPBS in San Diego as a “Local Hero” in October 2013 during “Disability

Awareness Month.”

In 2015, he received the “Breaking Away Award of Excellence” from KUSI News and Torrey Pines Bank, in recognition of his commitment for improving the quality of life for veterans and all people living with spinal cord injury or disease. A native of Philadelphia, PA, Al attended

Indiana University (1983-1987) and was a member of their legendary swim team before joining the Navy in 1988.

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Advocacy and Legislation Seminar

Washington D. C.

April 2016

Help us welcome our new member: Erick G. HernandezHere are our new volunteers: Tina Kendrick Christina Rey Katelynn Geib

Support Our Newsletter!

Place your ad in WHEELS IN MOTION to be in touch with other veterans and their families. If you are a member, there’s no charge! If you are NOT a member of the Central Florida Chapter of the Paralyzed Veterans of America, but would like to place an ad, our rates are listed below. All submissions must be in our office by the 15th of month prior to the month you want to advertise.

Please email the Editor, Stephanie Mojica, for further details or information at smojica@centralfloridapva.org

1 Month Annually (12 issues) 1/4 Page $20.00 $200.00 (Savings of $40)1/2 Page $40.00 $400.00 (Savings of $80)Full Page $80.00 $800.00 (Savings of $160)

01- Christopher J. Henning02- Daniel G. Preston03- Van B. Gentry03- Patrick W. McElrath03- Ray A. McKay04- Nemesio Gonzalez04- Robert H. Watson04- Dora L. Jordan04- Sandra L. Koenig05- Charles W. Aiden06- Richard E. Rousseau, Jr.07- Edna Mack08- Michael S. Figueroa09- D. Sean Mullvain09- David C. Ray10- Edward J. Pollick

10- Gerald Mizenko10- Luis Santana-Martinez, Jr.11- Abigail J. Henning12- Tracey G. Johnson12- Jessica J. Garofalo-Scoullar13- Michael I. Rauchway13- Buford L. Blizzard13- Michael D. Digue14- Michael G. Franks15- Jesus M. Sanchez15- Byron M. Washington16- Gilbert Garcia16- Kenneth E. Stintson16- Anthony Hargrove16- Buster Epperson

17- Anthony N. Grillo20- George T. Farrell21- Paul N. Arledge21- Maryann S. Franchak22- William C. Gilliam22- Wade L. Churchfield25- Carmen F. Costa25- Warren H. Jernigan25- Wendell L. Mains26- Robert Sjoberg28- Nydia E. Rivera29- Luther K. Bernhart29- Larry E. Angell29- Larry J. Wester29- Joseph C. Woods30- Lisa M. Miljevic

Last month, we stated in the Who’s Who article that Brian Terwilliger was the first president of the chapter. We have made a mistake. James Atwell was the first chapter president. Please accept our apologies.

Brenda Ciccarello

Please check this proof CAREFULLY. Wewill not be responsible for ANY errors afterthis proof is approved.❒ OK As Is ____________________________❒ OK With Changes _____________________❒ Another Proof RequiredSignature _____________________________* If Proof Approval Is Not Received Within 30Days, A $6.00 Typesetting Charge Will Apply

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Finally!AN E-Z WAY TO CLOSE THAT DOOR

The E-Z Pull Door CloserAn assistive device that enables wheelchair, scooter and walker users to close doors

behind them when the doorknob is out of reach.

• Designed and manufactured by a paraplegic Veteran, the E-Z Pull is made from clear, durable polycarbonate.

• Replaces spring loaded doors and unsightly belts and ropes.

• Easy to install. Almost invisible. Hangs unobtrusively on door when not in use.

• Even helps able-bodied persons when their hands and arms are full.

• The E-Z Pull comes with a lifetime warranty.

• www.e-zpulldoor.comwww.e-zpulldoor.com

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On June 27th, 2016 there will be over 500 Disabled Veterans in wheelchairs that will gather in Salt Lake City, Utah for 6 days to compete in the 36th National Veterans Wheelchair Games (NVWG). This year, the Paralyzed Veterans of America Central

Florida (PVACF) chapter will be helping sponsor local paralyzed veterans to attend these Games. Sponsorship from PVA Central Florida is a tremendous help, providing approximately 75% of the necessary funds for 10 of our local paralyzed veterans to attend the Wheelchair Games. However, we need your help in sponsoring the remaining costs and additional participants. Each Veteran will need airline tickets to Salt Lake City, Hotel reservations and food for 6 days. It will cost each Veteran approximately $1,800 to attend these Games. So we are asking our community to help sponsor our Central Florida team of paralyzed veterans.

What is the National Veterans Wheelchair Games?

The NVWG are multi-event sports and rehabilitation programs open to U.S. military service veterans who use wheelchairs for sports competition due to spinal cord injuries, certain neurological conditions, amputations or other mobility impairments. This year, there will be 19 adaptive sports to compete in including; track & field events, wheelchair slalom, quad rugby, basketball, air-rifles, softball, hand cycling, 9-ball and bowling.

What is Paralyzed Veterans of America?

Paralyzed Veterans of America (National) is a congressionally chartered veteran’s service organization dedicated solely to serving veterans with spinal cord injury or disease. For nearly 70 years, Paralyzed Veterans has worked to ensure benefits, quality health care, accessibility, employment, and rehabilitative sports and recreation for veterans with disabilities. With more than 70 offices and 34 chapters, Paralyzed Veterans serves veterans, their families and their caregivers in all 50 states, the District of Columbia and Puerto Rico.

Paralyzed Veterans of America Central Florida (PVACF) a congressionally chartered Veteran’s service organization, provides a platform of advocacy, education and research, communication, adaptive sports and recreation for Veterans paralyzed as a result of spinal cord injury or dysfunction, in an effort to afford them with the highest quality of healthcare and life experiences. Currently PVACF’s membership is close to 400 members.

Office located at: 2711 S. Design Ct. Sanford, FL 32773

How can you help?

The best way to help is to call PVACF office at 407-328-7041 or email us at centralflorida16@cfl.rr.com or go to our website at www.pvacf.org.

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Paralyzed Veterans of America Central Florida

2nd AnnualJerry Dugan Memorial Charity

Golf Tournament

1700 Alaqua Lake Blvd. Longwood, FL 32779

June 13, 2016Club will allow special golf carts for

disabled players on the course Registration: $125.00 per golfer

Veterans: $100.00Foursomes: $440

Cart & Green Fee, Range Balls, Buffet Dinner, unlimited drinks before & during play (beer, soda & water), Goodie Bag and Special Gift

for each player included

Hole in One Prize: 2016 Mercedes Benz and other great prizesPrizes for closest to the pin, longest drive,

Raffle/Silent auctionSend check to: PVACF 2711 S Design Court Sanford, FL 32773

For more information call Joanne Poretti at 407-328-7041 Thank You for your support

Sponsor Levels Platinum ($2,500): Includes an additional foursome, ¼ page ad in PVACF Chapter Newsletter for 1 year and everything included in the Gold package. Gold ($1,000): Includes golf foursome, recognition in PVACF Chapter Newsletter, name printed on all promotional material, strong presence at event (logos, banners, and signs), DJ announcement at luncheon, sponsor table at registration area, banner at 1st hole Silver ($500): Golf for two, recognition at event, sponsor table at registration area, signage at 1st hole. Bronze ($250): Recognition at event, sponsor table at registration area, signage at 1st hole. Hole Sponsor with Table ($175): Table, two chairs at hole (sponsor can distribute promotional material). Hole Sponsor ($100): Signage at hole******************************************************************************************

Player Registration

Player____________________ Address ______________________________________

#1_______________________________________________________________

Phone:_________________________Handicap_______Shirt Size_______email______________________________

#2_______________________________________________________________

Phone:________________________Handicap_______Shirt Size_______email______________________________

#3________________________________________________________________

Phone:________________________Handicap_______Shirt Size_______email______________________________

#4________________________________________________________________

Phone:_________________________Handicap_______Shirt Size_______email______________________________

Check________________ Amount $________________

Credit Card Type______________ Card #_____________________________ Exp. Date_____________ v-code________

Signature__________________________________________________________

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National Service Officer

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The treatment of Spinal Cord Injury and Dysfunction (SCI) is generally administered to veterans by the Veteran Health Administration

(VA) through a Hub and Spoke model. What this means is that there is one main facility that oversees care (Hub) and another facility with a trained SCI staff that supports the Hub (Spoke). In Florida, there are 2 Hub facilities in Tampa and Miami. Most of the Spoke facilities in Florida actually feed into Tampa and the West Palm facility feeds into Miami. The Spoke facilities are generally in the larger outpatient clinics and VA Medical Centers. Not every VA Medical Facility is a spoke for this system. PVA urges our membership to get their care at the Hub and Spoke facilities as opposed to the other VA facilities because of the SCI trained staff in those facilities.

As a result of this set up, many SCI vets are often receiving care and services from two facilities. This is performed in such a manner so that veterans who live great distances from the Hub can have their needs met in an efficient manner. This eliminates the need for veterans to travel possibly hundreds of miles to have their medical needs met. I would like to briefly discuss the annual exam process and what to do if equipment is ordered through this particular process.

The Hub facilities are the specialists in providing care for SCI veterans. The staff is trained specifically to take care of every concern of the SCI patient. They have access to greater numbers of vendors who supply auxiliary services to this demographic. The VA requires that veterans are seen every year to monitor everything from their physical medical conditions to their equipment and Mental Health needs. They require that veterans have their blood and urine labs monitored, their Mental Health needs assessed, their equipment needs assessed and many other things.

At these annual exams, it is extremely important for the veteran to bring up their concerns. If they need something such as a seat mapping, and they know prior to the annual exam, they should attempt to make an appointment for that procedure prior to going. The Hub is not going to assume that veterans will need seat mapping, and they will not just arbitrarily schedule it. With those specialized services, it is highly unlikely they will be available on the day of the annual exam if the appointment is not pre-scheduled. It is likely that the vet would have to come back if this situation is brought up at the annual exam.

The Hub and Spoke system is very good at providing an SCI veterans Primary Care needs locally and monitoring the overall SCI concerns centrally. One downfall of the system is that the Spoke Facilities are not as efficient at taking care of some of the needs of the SCI veteran as the Hub Facilities are. A prime example is the ordering of Sports Wheelchairs. Quite frequently, the Spoke facilities are not as experienced with ordering Sports Equipment so it may be more of a hassle to get the equipment at the Spokes Facility. So when the veteran goes to their annual exam they can set up the evaluation for the equipment. Eventually when the Hub Facility orders the Sports Chair, it will need to be repaired. There is no need for the veteran to take the piece of equipment all the way to the Hub facility to get the repairs if there is a facility that can authorize repairs closer to them.

When a veteran needs to get a repair it needs to be pre-authorized by a VA facility. Most of the vendors in the local area are familiar with the process and able to work with the local VA to get the repairs done. When the equipment is not on the veteran’s equipment list at the local VA because it came from another facility, or from an outside provider, repairing it will present a problem. To ensure that the equipment is on their list veterans can have their Primary Care Provider initiate the consult to Prosthetics, or they can go directly to Prosthetics. Prosthetics will verify that the veteran has the equipment. If the equipment was obtained outside of the VA the veteran may need to be evaluated by Physical Medicine and Rehab to ensure that they need a device. The VA will also need to ensure that the device they have is appropriate. Once these things are done, the veteran should be able to go to any vendor who is familiar with working with the VA to get the repairs done.

I wish all systems and procedures within the VA were straight forward, but unfortunately they are not. The annual exam process for veterans receiving Primary Care at the Spoke Facilities can be quite confusing. If you have any questions please do not hesitate to contact your PVA NSO.

David Ray

YOUR FUTURE AWAITSParalyzed Veterans’ scholarship program now accepting applicationsParalyzed Veterans of America invests in our members and their families.

Our Educational Scholarship Program assists members and their immediate family members by providing scholarship funds to help with a post-secondary education.

We will award scholarships in the amount of $1,000 to full-time students and $500 to part-time students for an academic year.

APPLICANT MUST BE: • A Paralyzed Veterans of America member, spouse of a member, or an unmarried child (under 24 years of age) who is dependent (as defined by the IRS) on the member for principal support

• A United States citizen

• Accepted and enrolled as a full- or part-time student in an accredited U.S. college or university

Previous award recipients may apply.

Download an application at pva.org, or for more information contact Christi Hillman at 800.424.8200, ext. 776; ChristiH@pva.org. Applications must be completed in full and postmarked no later than June 17, 2016.

WHEELS ON THE GO

We will pay you for where you go and what you know!Paralyzed Veterans of America Central Florida is ready to pay its members

to go out on the town and have fun! And as you do, we want you to tell us how accessible your experience was. Go out to dinner, the theatre, a sporting event or any other public place where people eat or are entertained. Report back to

us if the facility was accessible, if the staff was receptive to your visit and if you would recommend the establishment to others in wheelchairs.

Here is how this works:• Go to a restaurant or a place of entertainment and enjoy!

• Send your receipt to us with your name and the name of your guest written on the

back side.

• Answer the questions on our questionnaire (online at http://tinyurl.com/wheelsgo) or

mail the form below to 2711 S. Design Court Sanford, Florida 32773. If using the

online method let us know that when you send in your receipt.

• Cash your reimbursement check for 100% of what you spent and enjoy using it again

and again (up to $500 per year per member/guest) As long as funds are available!

Please remember this program is for members and their guest only!

This questionnaire (with answers) must be sent with the receipt in order to receive a refund

(Cut along this line)**************************************************************************

Where did you go (Name and address of the establishment)?

When did you go (Day of week and time of day)?

Was there adequate parking for the disabled? Was it wheelchair friendly?

Was there a ramp? Was it wide enough?

Was the entrance wheelchair friendly (was the doorway wide enough, was

there an automatic door opener for the disabled)?

Were you received well by the staff?

Was the facility accommodating (restrooms, countertops, buffet counters,

drink stations, etc.)?

Would you recommend the establishment to other PVACF members?

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Paralyzed Veterans of AmericaCentral Florida Chapter2711 South Design CourtSanford, Florida 32773-8120

NON-PROFIT ORGU.S. Postage

PAIDOrlando, FL

Permit No. 2825