1Vol. 7, No. 6

“A ctivity-based interventions” (ABint), or “activity-based thera-py”, has become a common term

in the spinal cord injury rehabilitation field. The suggested promise of recovery of neural function, and therefore the re-turn of valued functional abilities, such as walking or using ones’ hands, has led health care providers to establish new ac-tivity-based programs, without evidence supporting the use of the interventions employed in these programs. Hope for re-covery of neural function and abilities has led consumers to seek out such programs, without critically analyzing the putative benefits of these programs given their spe-cific type of injury.

Activity-based interventions or thera-

pies include any therapy activity, or in-tervention, that is focused on improving muscle function and sensory perception below the level of injury, and not simply accommodation or compensation for the paralysis and sensory loss due to the spi-nal cord injury (SCI), in order to improve overall function after SCI.

The Shepherd Center, with support from the National Institute on Disability and Rehabilitation Research (NIDRR) has recently completed a systematic review of activity-based Interventions to improve neurological outcomes after SCI.

This systematic review examined the literature published between January 1998 and March 2009 to see if there is evidence to suggest that activity-based interven-

tions can lead to neural recovery after SCI.Results of this systematic review show

that there are few randomized controlled

trials in SCI, and even fewer related to as-sessing the effectiveness of activity-based

Continued on page 6

www.spinalcord.org Vol. 7, No. 6

Leading the way in maximizing quality of life for people with spinal cord injuries and diseases since 1948.

By Cindy L. Krieg

“Before my injury, my family loved to hike together at the nearby state park,” explains Alicia Reagan (T10

incomplete SCI) of West Union, OH. “Af-terward I found myself sitting on the side-lines. Hikes were no more. I encouraged my husband to take the children without me but they said ‘it just isn’t fun anymore without you.’”

When a family member has an SCI, the initial focus is on recovering strength and healing from the injury. Once home, after months of rehab, even the simplest tasks are daunting and often physically painful. They feel isolated and frustrated by their inability to get around. What is often not considered is the toll this takes on the rest of the family.

“I had lost a lot of who I was and the path forward was not yet clear,” shares Bill Fertig (T7 complete SCI), of Pittsburgh, PA, and manager of Spinal Cord Central, the NSCIA resource center. “The effect on my family and friends was palpable. It was clear

that my family bore the greatest burden of the supports that I required. It took a men-tal and physical toll on them as well.”

As they get stronger, individuals with SCIs can become frustrated by their remain-ing limitations. While a wheelchair is an inte-gral part of mobility, it can also limit the user. The chair’s small front casters are easy to push over smooth flat indoor surfaces, but they can make many outdoor activities almost death-defying. The idea of spending the rest of their lives on the sidelines is not acceptable.

“It felt like it was somehow my fault that our activities as a family were so different,” related Alicia.” When navigating outside, much of the wheelchair user’s focus is on the ground instead of the activities taking place around them as they watch for and try to avoid even the smallest obstacles. Con-stantly worrying about falls and injuries or simply being unable to easily traverse rough surfaces, wheelchair users spend less time participating in outside activities in which their families would normally participate.

Thankfully, a new piece of adaptive equipment is helping wheelchair users get

back outside with their families. The Free-Wheel™ Wheelchair Attachment is a light-weight, durable, third wheel that quickly and easily attaches to the footrest of a rigid-frame manual chair.

“I spotted the FreeWheel on a SCI chat room and immediately saw how useful it would be,” explained Bryce Hendrickson

(C5 incomplete), of Chandler, AZ. Vising his parents in Washington State, he at-tached his FreeWheel and headed down a hilly gravel road he had avoided since his accident. After he sailed down the hill, his mother pushed him back up. “She wouldn’t have been strong enough to keep me in a

Continued on page 5

Study Reviews Published Research on Activity-Based Interventions

Rediscovering Your Freedom and Your Family Naomi Clark and Bryce Hendrickson in Costa Rica.

2 Vol. 7, No. 6

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LOF-011Cons_SCILife_1.indd 1 4/25/08 1:21:37 PM

3Vol. 7, No. 6

SCILIfe STAffMANAGING EDITOR: K. Eric LarsonDEsIGN AND LAyOuT: Nikolai AlexeevADvERTIsING sALEs: Megan BellDATA INpuT: Bonnie J. Haynes

NSCIA NATIONAL OffICe STAff ChIEf ExECuTIvE OffICER: K. Eric Larson REsOuRCE CENTER MANAGER: Bill FertigINfORMATION spECIALIsT: Daniela CastagninoINfORMATION spECIALIsT: Charleene FrazierWEb sERvICEs/pubLIshING: J. Charles Haynes, JDWEbMAsTER: Nikolai Alexeev

BOArd Of dIreCTOrS Executive CommitteepREsIDENT: Patrick MaherIMMEDIATE pAsT pREsIDENT: Harley Thomas (1939 – 2007)ChAIR, ExECuTIvE COMMITTEE: Andy HicksvICE-pREsIDENT fOR ChApTERs: David EstradasECRETARy: Janeen EarwoodTREAsuRER: David EstradaCEO/ExECuTIvE DIRECTOR: K. Eric LarsonvICE-pREsIDENT fOR COMMuNICATIONs: Paul AronsohnvICE-pREsIDENT fOR DEvELOpMENT: Carmen DiGiovine, PhDvICE-pREsIDENT fOR MEMbERshIp: Debbie Myers

Directors Mary BroonerJohn FioritiGretchen FoxChristine N. Sang, M.D., M.P.H

General CounselLeonard Zandrow, Esquire

SCILife PUBLISHerpubLIshER: J. Charles Haynes, JD

SCILife is a publication of theNational Spinal Cord Injury AssociationOne Church Street, Ste. 600Rockville, MD 20850

SCILife is dedicated to the presentation of news concerning people with spinal cord injuries caused by trauma or disease.

We welcome manuscripts and articles on subjects re-lated to spinal cord injuries or the concerns of persons with disabilities for publication, and reserve the rights to accept, reject, or alter all editorial and advertising materials submitted.

Manuscripts and articles must be accompanied by a self addressed stamped envelope if return is requested. Items reviewed in New Products Announcements and advertising published in SCILife do not imply endorse-ment of organizations, products or services.

If you have any questions related to your membership with NSCIA, or would like to join, contact us atHDI Publishers, PO Box 131401, Houston, TX 77219-1401,e-mail: membership@spinalcord.org, fax: 713.526.7787, or phone us toll free at 800-962-9629.

For questions not related to membership, write to: SCILife, HDI Publishers, PO Box 131401, Houston, TX 77219-1401voice: 713.526.6900fax: 713.526.7787email: info@spinalcord.org or website: www.spinalcord.org.

For additional information on advertising in SCILife, contact: Advertising Sales Department, SCILife, HDI Publishers, PO Box 131401, Houston

TX 77219-1401 tel: 713.526.6900 fax: 713.526.7787

email: chaynes@hdipub.comwww.hdipub.com

SCILife © 2011

guest editorial

A Tribute to NSCIA Member Laura HersheyBy Michael Ervin

The “gimp” community has been blessed with a metric boatload of incredible writers. Laura Hershey was/is the best.

No question in my mind about that.Laura died the day after Thanksgiving.

But fortunately for all of us, she has a glori-ous paper trail. Go google her up right now. You’ll find a ton of amazing stuff. It’s like a big basket of fresh, ripe fruit. No matter what you select, it will be great.

You’ll find essays, poetry, blog posts, etc. But it’s all poetry. Even when writing about something like the minutiae of public policy, Laura spelled it all out with a sharp clarity that hits you in the gut like good poetry. Of-ten while clawing through my brain rubble for words to express my opinion or feelings about some major gimp affair, I’d look up and find Laura had already nailed it, strik-ing precisely the right note. A good example was that whole Terri Schiavo mess a few years back. I wanted to write something ripping those on the right and left for their raging hy-pocrisy. Both sides claimed to be the friends and guardians of disabled folks, when really they only differed on the timeframe for slit-ting our throats. The most mature response I could formulate in my mind was, “You guys

are all a bunch of ass holes!” Meanwhile, Laura’s essay “Killed by Prejudice,” appeared in The Nation. She particularly stuck it to the homophobes and gimpophobes on the right. She wrote: “I’m a lesbian feminist. I’m a secu-lar thinker who believes government should serve the public good. I abhor the fundamen-talist religious movement’s selective advocacy of some rights for some people.

“My partner and I squirmed as we watched Senator Rick Santorum, Repre-sentative Marilyn Musgrave and others who championed Schiavo’s rights. Robin and I are both disabled women. If either of us were incapacitated, these right-wingers might ar-gue to keep us alive; but they would oppose our right to stay by each other’s bedsides.

“While they defended one woman’s right to live, they jeopardized many other disabled lives by attempting to gut Medic-aid, which provides essential healthcare and support services.”

Amen.The last time Laura and I met up was

in Los Angeles in ’09. It was Oscar week-end but we weren’t there to breathe the same air as Angelina Jolie. We were there to protest Jerry Lewis being chosen to receive the Jean Hersholt Humanitarian Award. Laura had the same disability as me. She too was once a poster kid. She too grew up to righteously resent how Jerry and the Muscular Dystrophy Association turn kids with MD into tragic clowns for their own marketing purposes. A bunch of us parked ourselves (uninvited, of course) in the lobby of the Academy of Motion Picture Arts and Sciences. We chanted. We sang to the tune of “I Feel Pretty:”

He feels pity, so much pity.He feels pity, and to this we object!Because pityheightens fear and undermines respect.He feels giddy,oh, so giddy,for on Sunday he’s getting a prize,for his pity

and his patronizing tears and lies.The cops couldn’t scare us away. It was enormous fun.

For these types of antics Laura was of-ten accused of the mortalest of gimp mortal sins: ingratitude. She had something bril-liant to say about that too. Just last week in her blog Life Support on the website of the Christopher and Dana Reeve Foundation, she wrote “The Good and Bad of Grati-tude.” She expressed how disabled folks are reluctant to express gratitude, even when we really feel it, because gratitude has his-torically been shoved down our throats:

“All too often, people with disabilities are pressured to feel gratitude for things that are their basic human rights – subsi-dized housing, support services, inclusion in the community, basic acceptance and respect. Some people think that disability is a drain on the economy, and an imposi-tion on others. They don’t want to be re-minded of the prevalence and inevitability of disability in any society, in any person’s experience or family. In response to this deep discomfort, they try to impose condi-tions on anything “given” to people with disabilities – conditions like passiveness, submissiveness, limited demands, and con-stant thank yous.

“We have to demand the things that are essential to our lives, equality, and quality of life. We must refuse to feel gratitude for these, except the normal level of gratitude that anyone might feel for living in a time and place that still supports human life. We can’t succumb to feelings like embar-rassment or shame regarding our needs, even if those needs are more extensive than the average person’s needs. That will only reinforce and perpetuate our inequality, and the pulling away of vital state- and federally-funded support services.”

Editor’s Note: Among many other things, our good friend Mike Ervin writes at www.smartasscripple.blogspot.com. And, trust me, he lives up to the title.

GOLdCoLoPLAST www.us.coloplast.com

INVACARewww.invacare.com

MoBILITY WoRkS www.mobilityworks.com

PRIde MoBILITYwww.pridemobility.com

SuNRISe MedICALwww.sunrisemedical.com

uNITed SeATINg ANd MoBILITYwww.unitedseating.com

SILver

CHeSAPeAke ReHAB equIPMeNTwww.chesrehab.com

THe RoHo gRouPwww.therohogroup.com SYNAPSe BIoMedICALwww.chesrehab.com

BrONze

AdVISACARe www.advisacare.com

AMeRIgLIde www.ameriglide.com

deLTA www.delta.com

FALVeLLoLAW www.falvellolaw.com

FRee WHeeL www.gofreewheel.com

MYPLeASuRe www.mypleasure.com

SCooTARouNd www.scootaround.com

TILITe www.tilite.com

WYNg PRoduCTS www.wyngproducts.com

NSCIA BuSINeSS MeMBerSIf the businesses you patronize are on this list, please thank them for supporting you and your fellow NSCIA members. If they aren’t on this list – ask them to join today!

Acknowledgements on our web site, SCILife, SCI e-news or any other NSCIA publication should not be considered as endorsements of any product or service. It is the individual’s responsibility to make his or her own evaluation of such.

www.spinalcord.org/business

4 Vol. 7, No. 6

from the executive director Remembering Mick Countee By K. Eric Larson, Executive Director and CEO, NSCIA

Thomas H. “Mickey” Countee Jr. passed away on Saturday, October 30, 2010. Mick (as he was known to us in NSCIA

circles) served as Executive Di-rector during the 1990s when I first got in-volved with the national board. He is credited with bringing us safely through some substantial financial chal-

lenges at the time, as well as initiating our move to a virtual office environment, a true innovation at the time and one that has

served us and our members well. Mick lived with a spinal cord injury and he lived fully from everything I observed.

Perhaps the board of directors of NSCIA best captured our collective appre-ciation of Mick’s contributions to NSCIA when we created the Thomas H. (Mick) Countee Jr. Award, shortly after Mick stepped down from his role as Executive Director in June, 2001, after serving in this capacity pro bono.

This (the Thomas H. (Mick) Countee Jr) award is given to an individual in honor of Thomas H. (“Mick”) Countee, Jr., the Executive Director of the National Spinal Cord Injury Association, Inc. (“NSCIA”), from February, 1997 through June, 2001. Under Mr. Countee’s leadership and as a re-sult of his personal efforts, business acumen, and initiative, the NSCIA emerged from a period of uncertainty and indebtedness to a point of financial stability, renewed promise, and growth. Throughout his 4-year tenure as Executive Director, Mr. Countee demon-strated extraordinary determination, judg-ment, and dedication. He labored in excess of full, 40-hour work weeks, paid substantial travel and personal expenses from his own pocket, and refused to accept compensation of any kind for all of his efforts. He exhibited unparalleled commitment to the NSCIA --

despite many other personal and professional demands upon his time. A 40-year veteran of spinal cord injury, Mr. Countee reflected the highest ideals of resilience, character and generosity. Although the qualifying criteria for this award are high, it is hoped that cir-cumstances will support awarding this honor each year, but this practice is not required.

A final and classic example of who Mick Countee was is that, in his will, he asked his brother Michael to donate his body to science, particularly if that science is being applied to spinal cord injury research. As a fellow board member, Len Zandrow, said re-cently, “even in death, giving everything he had to us and to the community that he so faithfully served and loved.

Mick’s brother Michael provided me the following biography of his brother, so I’ve chosen to share it as out of respect for Mick, Michael and their family.

Thomas H. “Mickey” Countee Jr., esq., August 7, 1939 – october 30, 2010Mickey Countee lived a full, fascinating and vigorous life. Actually, he had two distinct parts to his life: the first, from August 7, 1939 to August 2, 1958; the second, from August 3, 1958 to October 30, 2010.

Mickey Countee was the first born of

three boys of Thomas H. Countee Sr., an attorney, businessman, college professor and high school teacher, and Arrieanna C. Countee, a Social Worker and homemak-er. His father was an “old school” father, in tune with the times. He spoke, Mickey listened and did as he was told. His father told him he would go to Phillips Academy, in Andover, Massachusetts, for secondary school. He went, studied hard and played football, lacrosse and ice hockey. His father told him he would go to Harvard University. He went, studied hard and played football and ice hockey. Following his father, Mickey pledged the Kappa Alpha Psi fraternity, at the Boston University chapter.

During the summer after completing his second year at Harvard, he was enjoying the last days of his vacation in the late eve-ning of August 2, 1958, at Highland Beach, a small beach community founded early in the 20th century by affluent blacks looking for a retreat on the Chesapeake Bay. Mickey was partying with friends. From the end of a pier going out some yards from the beach into the Bay, he dove into the water. He hit bottom, broke his neck, injured his spinal cord and from that moment was paralyzed from his mid-chest downwards.

It is said that, when he awakened the next day, after surgery stabilizing his spinal

Continued on page 17

CALIfOrNIACASA CoLINA CeNTeRS FoR ReHABILITATIoNPomona, CA(909)596-7733

NoRTHRIdge HoSPITAL MedICAL CeNTeRNorthridge, CA(818) 885-8500 ext. 3669

COLOrAdOTHe RoCkY MouNTAIN RegIoNALSPINAL INJuRY SYSTeM-CRAIg HoSPITALenglewood, Co(303) 789-8306

WASHINGTON, dCNATIoNAL CAPITAL SPINAL CoRd INJuRY ModeL SYSTeMNational Rehabilitation Hospital Washington, dC(202) 877-1425(202) 877-1196

fLOrIdA BRookS ReHABILITATIoN HoSPITAL-uNIVeRSITY oF NoRTH FLoRIdAJacksonville, FL(904) 858-7600PINeCReST ReHABILITATIoN HoSPITAL (CARF)delray Beach, FL(561) 495-0400

GeOrGIAgeoRgIA RegIoNAL SPINAL CoRd INJuRY CARe SYSTeM-SHePHeRd CeNTeR, INC.Atlanta, gA(404) 350-7591

ILLINOISMeMoRIAL MedICAL CeNTeR. NeuRoMuSCuLAR SCIeNCeS & oRTHoPedIC SeRVICeS Springfield, IL 217-788-3000

INdIANA ReHABILITATIoN HoSPITAL oF INdIANA Indianapolis, IN317-329-2000

KeNTUCKy CARdINAL HILL ReHABILITATIoN HoSPITALLexington, kY(859) 254-5701

MAryLANd AdVeNTIST ReHABILITATIoN HoSPITAL oF MARYLANdRockville, Md (240) 864-6000

keNNedY kRIegeR INSTITuTe Baltimore, Md(443) 923-9200

keRNAN oRTHoPedICS ANd ReHABILITATIoNBaltimore, Md(888) 453-7626

MICHIGANMARY FReeBed ReHABILITATIoN HoSPITAL grand Rapids, MI(616) 242-0343

uNIVeRSITY oF MICHIgAN ModeL SPINAL CoRd INJuRY CARe SYSTeMAnn Arbor, MI(734) 763-0971

MISSOUrI THe ReHABILITATIoN INSTITuTe oF kANSAS CITYkansas City, Mo(816) 751-7900

NeBrASKAIMMANueL ReHABILITATIoN CeNTeR omaha, Ne(402) 572-2121

MAdoNNA ReHABILITATIoN HoSPITALLincoln, Ne (402) 486-8296

ALegeNT IMMANueL ReHABILITATIoN CeNTeRomaha, Ne(402) 572-2121

NeW JerSey NoRTHeRN NeW JeRSeY SPINAL CoRd INJuRY SYSTeMkeSSLeR INSTITuTe FoR ReHABWest orange, NJ (973) 243-6849

NeW yOrKMouNT SINAI SPINAL CoRd INJuRY ModeL SYSTeMNew York, NY(212) 659-8587

NOrTH CArOLINAJ. PAuL STICHT CeNTeR oN AgINg ANd ReHABILITATIoNWinston-Salem, NC(888) 605-9568

MoSeS CoNe HeALTH SYSTeMgreensboro, NC(336) 832-7000 CARoLINAS ReHABILITATIoNCharlotte, NC (704) 355-4300

OHIONoRTHeAST oHIo RegIoNAL SPINAL CoRd INJuRY SYSTeMCleveland, oH(216) 778-8781

PeNNSyLvANIAuPMC INSTITuTe FoR ReHABILITATIoN & ReSeARCH Pittsburgh, PA(877) 287-3422

THe WILLIAMSPoRT HoSPITAL ANd MedICAL CeNTeRgIBSoN ReHABILITATIoN CeNTeRWilliamsport, PA. (570) 321-1000

SOUTH CArOLINA HeALTHSouTH ReHABILITATIoN HoSPITALColumbia, SC(803) 254-7777

TeNNeSSee PATRICIA NeAL ReHABILITATIoN CeNTeRknoxville, TN(865) 541-3600

TeXASBAYLoR INSTITuTe FoR ReHABILITATIoN dallas, TX. (800) 422-9567

TIRR MeMoRIAL HeRMANN (THe INSTITuTe FoR ReHABILITATIoN ANd ReSeARCH) Houston, TX (713) 799-5000

Texas Health Harris MethodistForth Worth, TX(817) 820-4800

vIrGINIAINoVA MouNT VeRNoN HoSPITAL Alexandria, VA703-664-7592

WISCONSIN FRoedeRT MeMoRIAL LuTHeRAN HoSPITALMilwaukee, WI(414) 805-3000

OrgANIzAtIONAl MeMBerS Of NSCIAFLoRIdA SCI ReSouRCe CeNTeRSt. Petersburg, FL (866) 313-2940

PRoJeCT WALkCarlsbad, CA(760) 431-9789

PuSH To WALkRiverdale, NJ(862) 200-5848

quest to Walkoverland Park, kS (913) 451-1500

HOSpItAl MeMBerSNSCIA thanks its growing list of hospital and organizational members, each of which has expressed their commitment to partner with us in our mission of improving the quality of life for people

with spinal cord injury and disorders. Visit www.spinalcord.org for a full list of Hospital Members with links to their web sites, and information on how your hospital can join NSCIA.

5Vol. 7, No. 6

from the president

By Patrick Maher, President, NSCIA Board of Directors

Maybe it was the first blast of another Chicago winter that had me feeling testy. As my colleague and I pinballed

from one dead end exit to another in the East Monroe Street garage on Chicago’s lakefront for an evening meeting in early Decem-ber, I began to express my utter frustration with our nation’s lag-ging commit-ment to genuine

accessibility. I’m like that. I’d parked in an “accessible” spot in the cavernous, poorly lit structure - you know - the parking places with our iconographic disability symbol, anticipating that there would be a nearby elevator to take us to street level. Foolish me. Now running late for a meeting that we were to moderate, I angrily grabbed hold of the left and right runners of a steep escala-tor, imploring my co-worker to fall in be-hind me. Thankfully she’s also a take charge type and, though this was a new experience for her, she quickly and gamely jumped on.

As I pulled forward at the top of the run I was faced with another bleak, non-descript landing with no access to the street, nor any elevator. There was, how-ever, yet another steep escalator with an adjacent sign “To Street Level”. Well, I thought, some hope! My friend didn’t need

to ask me what our next move should be as she saw me lurch around the first and onto the next people mover. Our odyssey wasn’t over yet. At the second landing we spied another sign to street level. Rushing for-ward and pushing open the double doors to breath in the bracing air I ran straight into...a final flight of stairs! Not only that, but a biting, driving snow made for a nerve-wracking portage for the two of us and a kind stranger who happened upon us on his way into the garage to head home. As I held the slick metal rail tightly, the two of them lifted me in my chair up the short flight to - drum roll- street level!

After nearly thirty years of managing life from the perspective of a ninety degree bend - give or take - from legs to torso, I have exhausted my reserve of diplomatic haggling, cajoling, educating, imploring, begging, or otherwise hoping that our na-tion as a collective will finally embrace and support the core principles of the Americans with Disabilities Act (ADA) because it’s the right thing to do. Each time any of us is faced with a deplorably inaccessible public garage, bathroom stall door that opens “in” - thereby stealing any possible opportunity for navigating in a wheelchair and closing the door to provide privacy that most people take for granted in such a personal setting, an accessible parking place of questionable dimensions, or the pride-stripping require-ment to beep, wave, or frantically gesture to a gas station employee - assuming of course that we have found a station with at least two employees on duty - to lift a nozzle and pump gas into our cars to save us some time, and atypical effort - for which we gladly pay - it’s impressed upon us that we continue to be second class citizens.

Despite what a variety of pundits, commentators, and “handicapped” writers might suggest related to some question-able and even illogical requirements of the ADA, its profound impact on the lives of millions of citizens is clear. It is appalling that anyone would fail to recognize the tangible improvements related to physical access alone that the law has compelled that have led to opportunities to lead a more complete and engaged life for mil-lions. Can it be argued that the require-ments for the number of accessible parking spaces in a given lot might be too stringent? Absolutely. Have some employers been put off of hiring people with disabilities by the specter of a lawsuit related to dismissing an employee under the provisions of Title I? Undoubtedly. Are there unscrupulous attorneys - and people with disabilities - who access the ADA as a tool to profit vs. enforce the validity of the law? We know they’re out there. Might reasonable people argue over the extent of the ADA canvas and who should be covered under the law? Without question. But in the final analy-sis the ADA’s impact has been dramatic on the landscape of our nation. For those who would argue that the law has been a haven for unfounded legal actions...please! Every law in our nation is ripe for abuse. It’s not the law. It’s the abuser.

Penn Jillette, front man for the comedy team Penn and Teller, has openly criticized the ADA over the years. He narrates a short video featuring a “handicapped” writer – the writer’s term – of technology manuals and now author of a text that is also harshly critical of the law. Greg Perry notes that, had he been born after the passage of the ADA, he’d have been a “loser”. His general prem-ise being that the ADA is simply a crutch for lazy citizens hoping to exist off of the government dole. What a sad and dismissive comment. Is this man suggesting that, re-gardless of the nature or complexity of your disability, if you only show that good old American get up and go you too can make it on your own? And further that you could have made it without any laws in place to support you? I wouldn’t even honor this suggestion by reflecting on it if only I didn’t

believe that it’s probably a view shared by millions of Americans. Let’s put the argu-ment, such as it is, to rest. Unfounded.

Disability is complex and unfortunate-ly very severe in many cases. I have many friends, colleagues and acquaintances who manage profound disability. Without the ADA, or some equally aggressive laws in place, they would be relegated to limited opportunities to engage with the world - like past generations of citizens who were faced with managing severe disability in a world that would rather not have accepted their existence, let alone supported their integration.

In the wrap up of the video that I’ve ref-erenced, the comedian Penn is looking over his shoulder at the camera and waxing po-etic about how common sense and human decency should prevail in interacting with people with disabilities. In the background is an athletic guy doing aggressive wheelies in his chair, another iconic and acceptable symbol of disability in our nation. Penn adopts a homey but professorial tone as he suggests, and I’m paraphrasing, that “using the law to bludgeon people is bull---- “ and that we should all just help one another out. Open a door, park a little farther away in a lot so that, should a fellow citizen with a disability require a closer spot, he’ll have it. For this caustic comedian to suggest that we’d all just embrace the equality of people with disabilities and do what we need to do without the ADA is akin to believing Scrooge would have come around without being visited by ghostly apparitions in his desolate London flat.

Do people think that we are so progres-sive on our own that we would have just awakened one morning and treated people with disabilities with dignity and respect? Oh, but of course we would have, just as we did women and people of color. I forgot we did wake one morning as a nation and say, “Let’s give women the right to vote, and while we’re at it, let’s begin treating our fellow citizens who aren’t Caucasian with dignity and respect”. How naive of the ar-chitects of the ADA not to recognize that we’re such a forward-thinking and egalitar-ian society.

Another Year, Another opportunity to Learn to Love the AdA

Rediscovering Your...Continued from page 1 wheelie and push me up the hill without the FreeWheel.”

Bryce’s partner Naomi Clark (T7) says the FreeWheel allows her to be out on the family apple farm and hangout with family members. “I am a lot less limited and when people do push me it is so much easier for them. I don’t worry about hitting a rut and falling out.”

Recently, Bryce and Naomi have traveled to the beaches of Costa Rica and hiked areas around the Grand Canyon. With the sand and rough terrain, this type of trip on their own would have been insurmountable.

As a manager of Spinal Cord Central, Bill Fertig sees a lot of adaptive equipment and initially was skeptical about the FreeWheel. “I wondered whether I really would use it myself.”

Now a FreeWheel enthusiast, Bill has rediscovered outdoor activities with his fam-

ily. “I cannot predict what ‘adventures’ may await now that I no longer have a viable ex-cuse to stay on the relative sidelines.”

Alicia’s family had the same reaction. “The Freewheel has helped me physically be-cause I am no longer confined to smooth sur-faces. This takes away much of the ‘disability’ stigma that I felt when I was sitting on the sidelines. It has given me my freedom back and as a family we are on the go again!” Her son Isaiah expressed it best, “Mommy, it’s just like it used to be.”

The FreeWheel was designed by me-chanical engineer Patrick Dougherty (C6/7 incomplete). After his accident he felt iso-lated, watching from the patio as his chil-dren played in the backyard. Today, with the FreeWheel, they go hiking, camping and skiing as a family. “I am right there with my kids, participating in their lives. You can’t beat that.”

Cindy L. Krieg, of Krieg & Associates, rep-resents the manufacturers of the FreeWheel Wheelchair Attachment. More information on FreeWheel is available at www.gofreewheel.

com. Alicia Reagan with children.

6 Vol. 7, No. 6

Review of Literature...Continued from page 1 interventions for individuals after SCI. There is, however, evidence reported from studies using other approaches, such as quasi-experimental and descriptive re-search methods, that support the use of ABint to improve function in some per-sons with incomplete SCI.

Many questions remain after this sys-tematic review. How much ABint is need-ed to gain improvements, and for how long? This question remains unanswered because the studies that do exist have used different dosages and frequencies of treat-ment. Who are the best persons to receive or participate in ABint? What is the level of injury or degree of completeness (AIS a, B or C)? For instance, there is little to no research in people with complete SCI re-search performed in individuals with com-plete (AIS A) or sensory incomplete (AIS B) SCI. Future study is needed to more fully explore how the field can help these individuals reach their maximal potential after SCI.

Consumers related to SCI rehabilita-tion and research should continue to mon-itor the evidence regarding the efficacy of ABint for SCI to determine if any given program or approach is the right one for any given person with SCI. This will lead to more realistic expectations on the part of the patient with SCI and their loved ones and caregivers, more creativity on the part of clinicians to incorporate the ABint appropriate to any given individual with SCI, and perhaps more agreement and reimbursement of such programs by the payers.

useful Information for People with SCI

One of the deliverables of the project un-dertaken by The Shepherd Center is the compilation of brief reviews of each of 14 key articles identified in the study of being useful to people living with SCI. The first four of those reviews follow below:

Locomotor Training Approaches for Individu-als with Spinal Cord Injury: A Preliminary Report of Walking Related outcomes

Reviewed by Edelle Field-Fote, PT, PhD; Ste-phen D. Findley, MS; Andrew Sherman, MD

Body-weight supported (BWS) training improves walking ability in patients with motor incomplete (ASIA C&D) spinal cord injury (SCI). There are various ap-proaches to using this training technique but no agreement on which approach is best. This study examines four (4) differ-ent approaches in 27 patients. The patients were randomly assigned to one of four dif-ferent groups as follows:

a. Treadmill training with manual assis-tance in walking (TM)

b. Treadmill training with electrical stimu-lation (TS)

c. Over ground training with stimulation (LG)

d. Treadmill training with robotic assis-tance (ZR)

Before any of the above training was started, each patient was evaluated with the outcome measures of over ground walking speed, training speed, step length and step symmetry. All of these were as-sessed after training.

Results of combining all groups showed a significant positive effect of training. But the difference among the four groups was not statistically meaningful although there was a trend for more improvement in the B and C groups. Analysis of walking speed change in the group who started with the slowest walking speed showed an increase of 85%. Only 9% increased in the fast walking group. Step length increased in all groups except group D. Step symmetry increased in groups A and D.

The conclusion is that all forms of as-sisted walking training demonstrate im-provement in over ground walking speed. The improvement was greatest in those patients who started training with the slowest walking speed. This suggests that treatment should be directed at those with slow initial walking speed. Step length and step symmetry do not appear to be affected by training. This study should encourage therapy using whatever form of locomotor training available to improve walking speed in patients with motor-incomplete SCI.

Resistance Training and Locomotor Recovery after Incomplete SCI: A Case Series

Reviewed by C.M. Gregory et al

Walking after spinal cord injury (SCI) is a goal of most patients. Many patients with SCI, if incomplete, regain the ability to walk in a modified way. However, the speed of walking may be so slow that it be-comes impractical to use this for mobility.

This study of three (3) patients with chronic SCI was performed combining two modes of therapy. The first is resis-tance training which increases the maximal strength of those muscles trained in similar fashion athletic sports training. (The focus in on the ankle plantar flexors (straighten), and the knee extensors (which also straight-en). The second therapy mode is called ply-ometric training, which is used to improve performance in those activities which in-volve high speed stretch-shortening, i.e. like a rubber band. Jumping and sprinting use these muscle fibers. Combining these two training activities results in improved jump, height, and sprint speed in neurologically normal individuals.

Results: The pre and post therapy mode results in this small group (3) were com-pared. The results suggest that combining plyometric training in patients with motor incomplete SCI results in bilateral improve-ment in torque (twisting) around the axis of the knee and ankle. As a consequence, there was an increase both in walking speed and maximum speed as selected by the patient. This increase was explained by enhanced propulsion in the more neurologically in-volved limb as well as improved torque around the knee and ankle.

Locomotor Training after Human Spinal Cord Injury: A Series of Case Studies

Reviewed by Andrea L Behrman; Susan J Harkema

A series of 4 adult SCI patients, 3 paraple-gia and one tetraplegia, were evaluated prior to receiving training to provide sen-sory information associated with walking. Each patient was identified according to the ASIA impairment scale. Prior to enter-ing the study, each was evaluated regarding functional assessment, locomotor disabil-ity, walking speed and distance covered in 2 minutes, balance and handicap.

The training procedures utilized feed-ing (sensory) reminders related to walking. Some of these reminders were maintaining an upright and extended trunk and head, and mimicking normal hip, knee and ankle motions used in walking. Much of the training took place on a treadmill and some training was done walking over the ground. All subjects improved in stepping on a treadmill. One of the 4 subjects was able to perform over ground walking while 2 improved their over ground walking. It was concluded that using sensory assistance in locomotor training may enhance the po-tential for recovery of walking in patients with spinal cord injury.

Locomotor Training Progression and out-come after Incomplete Spinal Cord Injury

Reviewed by Andrea L Behrman et al

A case report is presented to describe the process for retraining a patient injured at C5-6 with an ASIA impairment scale classification of D. Prior to training, the patient was using a rolling walking in the home. The patient received 45 sessions of body weight supported treadmill training. At the conclusion of training, the patient had improved walking speed using only a cane for community mobility. This result paralleled other results in the literature. The value of this study is presentation of an algorithm for making decisions on in-dividual patients on the progression of lo-comotor training. The study demonstrated the value of the Functional Independence Measure (FIM) in charting the patient’s progression. In this case, at the start, the patients’ FIM score was 24 points out of a total of 51 points. At the conclusion, the patient’s score was 75 out of 91 points.

The full report and additional information is available at www.spinalcordcentral.org or contact an information specialist at help@spinalcordcentral.org or 800-962-9629 M-F, 8:30am - 5:00 pm (ET). Brief reviews of each of 14 key articles are being drafted and will also be available online in our resource center as they become available, along with links to the full articles. As part of their ongo-ing efforts, The Shepherd Center is interested in learning if readers utilize this information in any way. If you are interested in complet-ing a brief survey, please contact Leslie Hud-son directly at Lesley_Hudson@shepherd.org.

{ }ACtIvIty-BASed INterveNtIONS

tO IMprOve NeurOlOgICAl OutCOMeS After SCI

After a critical review of the literature for both rigor and meaning, the following 14 articles are recommended:

1. Beekhuizen kS, Field-Fote eC (2005). Massed practice versus massed practice with stimulation: effects on upper extremity function and cortical plasticity in individuals with incomplete spinal cord injury. Neurorehabilitation and Neural Repair 19:1.

2. Behrman AL, Lawless-dixon ARL, davis SB, et al. (2005). Locomotor training and outcomes after incomplete spinal cord injury. Physical Therapy, 85:12.

3. Behrman AL, Nair PM, Bowden Mg, dauser RC, Herget BR, Martin JB, Phadke CP, Reier PJ, Senesac CR, Thompson FJ, Howland dR (2008). Locomotor training restores walking in a non-ambulatory child with chronic, severe, incomplete cervical spinal cord injury. Physical Therapy, 88:6.

4. Behrman AL, Harkema SJ (2000). Locomotor training after human spinal cord injury: A series of case studies. Physical Therapy, 80:7.

5. dobkin B, Apple d, Barbeau H, Basso M, Behrman A, Saulino M, Scott M, & the Spinal Cord Injury Locomotor Trial (SCILT) group (2006). Weight-supported treadmill vs. over-ground training for walking after acute incomplete SCI. Neurology, 66.6.

6. Field-Fote eC, Lindley Sd, Sherman AL (2005). Locomotor training approaches for individuals with spinal cord injury: A preliminary report of walking-related outcomes. Journal of Neurological Physical Therapy, 29:6.

7. gardner MB, Holden Mk, Leikauskas JM, Richard RI (1998). Partial body weight support with treadmill loco-motion to improve gait after incomplete spinal cord injury: A single-subject design. Physical Therapy, 78:4.

8. grasso R, Ivanenko YP, Zago M, et al. (2004). distributed plasticity of locomotor pattern generators in spinal cord injured patients. Brain 127.

9. gregory CM, Bowden Mg, Jayaraman A, Shah P, et al. (2008). Resistance training and locomotor recovery after incomplete spinal cord injury: A case series. Spinal Cord, 45:6.

10. griffin L, decker J, Hwang JY, Wang B, kitchen k, ding Z, Ivy JL (2008). Functional electrical stimulation cycling improves body composition, metabolic and neural factors in persons with spinal cord injury. Journal of Electromyo-graphic Kinesiology.

11. Hoffman LR, Field-Fote eC (2007). Cortical reorganiza-tion following bimanual training and somatosensory stimulation in cervical spinal cord injury: A case report. Physical Therapy, 87:6.

12. Hornby Tg, Zemon dH, Campbell d (2005). Robotic-assisted, body-weight-supported treadmill training in individuals following motor incomplete spinal cord injury. Physical Therapy, 85:6.

13. Prostas eJ, Holmes A, qureshy H, Johnson A, et al. (2001). Supported treadmill ambulation training after spinal cord injury: A pilot study. Archives of Physical Medicine and Rehabilitation, 82.

14. Wirz M, Zemon dH, Rupp R, Scheel A, Colombo g, dietz V, Hornby Tg (2005). effectiveness of automated locomotor training in patients with chronic incomplete spinal cord injury: a multicenter trial. Archives of Physical Medicine and Rehabilitation, 86:4.

7Vol. 7, No. 6

business member profileNSCIA Business Member delta Air Lines Honors employee for Work with People with disabilities

delta Air Lines, an NSCIA Business Member, has recognized the work of David Martin, Program Manager of

Delta’s DOT Compliance Disability Pro-gram, as a member of this year’s Chairman’s Club, the most prestigious recognition a Delta employee can earn.

Martin is one of 101 honorees selected from more than 8,500 employee nomina-tions received by Delta’s Employee Recogni-tion area. Each honoree was nominated by a

peer or manager and selected after a detailed process that involved multiple interviews with the nominees’ managers, peers and customers.

Now in its 14th year, the Chairman’s Club is an annual event that recognizes employees worldwide who consistently demonstrate dedication and determination to the highest standards of service to Delta customers, co-workers, and to the commu-nities Delta serves.

The selection of each of these employees recognizes their accomplishments through-out their career at Delta and further salutes their tremendous dedication and determina-tion to the highest standards of service to our customers and the communities we serve.

Martin has developed outreach pro-grams with SCI Hospitals where he works to teach people living with spinal cord in-jury how to travel. He works with centers to develop training classes and then take a select number of patients to the airport for a “behind the scenes” tour. Martin says the outreach programs are about helping people

with disabilities advocate for themselves and become familiar with the airport environ-ment. Another benefit of the outreach is that it brings people with disabilities togeth-er with people without disabilities, thereby achieving an element of disability awareness at the same time.

Martin has been doing this for about eight years but Delta’s relationship with the Shepherd Center in Atlanta (the first out-reach program) is celebrating its 20th year.

Delta’s disability program has four com-ponents - regulatory compliance to domestic and international regulations, the outreach

programs, ABLE Network (Delta’s employ-ee network on disability) and the Advisory Board on Disability (on which NSCIA’s board president Patrick Maher serves). The outreach programs address the importance of connecting with the disability communi-ty as it applies policy, procedures, practices and training.

The sustainable goal of Delta’s disability program is to make Delta carrier of choice for people with disabilities by ensuring op-erational excellence, service that exceeds the expectations of our customers and con-nections with the disability community.

resource centerA Web of Caring

For a person with a spinal cord injury and his or her family members, seek-ing support from friends and relatives

can seem trivial or too time consuming in the midst of a sudden crisis. Now, how-ever, there is a way to receive support and provide information, while increasing time available for the individual and family.

National Spinal Cord Injury Associa-tion (NSCIA), in partnership with Caring-Bridge, provides a free, nonprofit website creation service that connects family and friends to share information, love and sup-port when facing a significant health chal-lenge – all at no cost to NSCIA members and their families.

CaringBridge started back in 1997. Sona Mehring was devastated to learn that a close friend had delivered a premature baby and that both the baby and the moth-er were in critical condition. Ready to help in any way possible, Mehring was given the task of updating family and friends about the situation. Mehring utilized her back-

ground in web design to develop a website to communicate information to a wide cir-cle of family and friends without disturb-ing the mother’s need for rest or placing additional demands on hospital staff.

“I wanted to provide a space for my friend to update her support network and for her support network to provide love and encouragement,” says Mehring. “The Internet was the perfect medium for that.”

Sadly, after a nine-day struggle against tremendous odds, Baby Brighid died in surgery. But Mehring’s revolutionary com-munication tool, CaringBridge, was born out of this tragedy.

Today, CaringBridge is a nonprofit providing free, private websites that con-nect family and friends during a significant health challenge.

A CaringBridge website saves time and energy by centralizing communication

during a serious health event. This eases the burden of updating family and friends and keeps the focus on caring for the patient.

The websites can be an important tool for patients and families to reduce isolation and stress in a difficult time, giving them a much-needed outlet for sharing their feel-ings and receiving support. Rather than in-dividually contacting each member of their support system, a CaringBridge site allows patients and their caregivers to update ev-eryone concerned with just one journal entry.

With the help of a CaringBridge site, authors are able to expand their support network. “On the first day I created my CaringBridge website, I received 120 hits,” says CaringBridge user Sara Pallen. “I never could have communicated with 120 people in one day without this website.”

A CaringBridge site also helps patients

build therapeutic connections with their support networks, allowing family and friends to send messages of love and en-couragement through the patient’s guest-book. Many authors of CaringBridge sites say that the large volume of well-wishes and compassion they receive through the guestbook helps them experience emotion-al healing and improved quality of life.

Karen Cooley, a CaringBridge author, has personally felt the cathartic benefits of writing on a CaringBridge site. “Caring-Bridge has been a real comfort to me,” says Cooley. “It lets me talk to people in a way and get encouragement.”

More than a decade after the first Car-ingBridge site was created, the organization has grown to host more than 240,000 per-sonal sites that connect over half-a-million people daily.

NSCIA CaringBridge sites can be maintained for as long as the family finds them helpful. There is no time limit, or any conditions around their ongoing use – the sites can be used when someone is facing a serious medical condition, in treatment, recovery, or on an ongoing basis – dealing with a permanent disability such as SCI/D, for instance. For more information, or to create your own site, visit www.Caring-Bridge.org/spinalcord.

david Martin conducts tour with The Shepherd Center in Atlanta.

david Martin working with darius Weems of Darius Goes West on his first delta flight.

8 Vol. 7, No. 6

health and wellnessIs exercise a Medical Necessity?By Andy Hicks, ATP

one offshoot of the bruising healthcare debate over the Affordable Health Care Act is a growing understanding that

we must bring down the cost of care and improve effectiveness. There is still a debate about how much preventative care will save money. For example, if people continue to smoke they will die younger, saving Medi-care dollars, but on the other hand, improved prenatal care can save society a great deal of money. Where there is little debate, is on how prevention can improve quality of life. This is very true for people with a spinal cord in-jury or for anyone with a disability. There are many areas of prevention but one that can address many medical problems and that is exercise. It seems, almost every day we hear about new health benefits from routine ex-ercise for the general public, but what does this mean for the disabled community? The truth is, the general health of people with a disability poorly compared to the able-bod-

ied population. The disabled population has slightly higher rates of smoking and alcohol consumption but the main reason for poor health is because of metabolic syndrome.

Metabolic syndrome is a multitude of medical problems such as high blood pres-sure, high bad cholesterol, coronary heart disease, stroke, type two diabetes, early onset dementia, gallbladder disease, some cancers (endometrial, breast, colon), and sleep apnea. This disease can have a genetic predisposi-tion but is often resulting from obesity. The prevalence of metabolic syndrome is higher in the disabled population because some neu-rological deficits result in muscle cell loss and fat cells replacement. But the greatest con-tributing factor is the lack of opportunities for good cardio vascular exercise. Also, many people with disabilities are not identified for this risk, because they look to be thin but are actually, what is termed, normal weight obese. Also, some people that have had a spi-nal cord injury, especially people with triple-gia, often look thin except for extensive belly fat. This is concerning, because of the added risk of pressure sores, from the force on the pelvic, but also from recent studies indicat-ing that an increase in visceral (belly fat) can lead to an increase in death by heart disease. It was found that men that have a waist size over 40” and women over 35” have double the risk from premature death due to heart disease and diabetes. But, a recent study in-dicates that people that are technically obese, such as ex-football players, are healthier,

than their size would indicate. The players had less prevalence of diabetes and other metabolic problems, if they stayed fit, than men the same age and size from the general population. Another problem resulting from the vascular risk factors from obesity is early onset of Alzheimer’s disease and dementia. The good news is studies also indicate that the best prevention is a good diet and regular exercise.

Obesity is becoming a large health care problem for the general population, but it has graver implications for people with dis-abilities, especially as this population ages. For example; a sixty year old, male with a C6 spinal cord injury that developed meta-bolic syndrome; what are the implications for pressure sores, if he has diabetes? How will his care be affected if he develops dementia? What impact will these problems have on his independence and on his family/caregivers?

The greatest benefit exercise can provide a person may not be physical health, but mental health. Vigorous activity can release tension and stress, as well as improve self im-age and motivation. As the body and mind strengthen so does a person’s confidence to overcome obstacles in life.

Cardio vascular exercise and good diet are the most proven ways to combat obesity and the affects of metabolic syndrome. If some-one uses a manual wheelchair many people think that they are getting plenty of exercise pushing, but the reality is, they do not get nearly as much cardio vascular exercise and calorie consumption as an able body person walking. The opportunities for exercise is often overlooked by therapist in discharge

planning, by doctors that are overwhelmed with the other medical issues and from insur-ance companies that do not view exercise as a medical necessity for people in wheel chairs. So, it is up to us to motivate ourselves and others to get active and advocate for exercise as part of the medical solution. Many gyms now have accessible equipment and many rehab centers have exercise programs tailored for people with disabilities, but few insurance programs help with the expenses, so this has to change. Also, rehabilitation equipment companies have developed more advanced exercise devices for people with disabilities to preserve range of motion, strengthen bones and muscles, and to provide good cardio vas-cular workouts. Funding resources to pay for the exercise equipment is limited, but is available if a good case for a medical neces-sity is stated. We still have a medical model that primarily pays for the treatment of the symptom, but does not pay for the preven-tion of disease. This will have to change as wheelchair users (as well as the general pub-lic) age and the cost to treat all the problems associated with metabolic syndrome increase. This problem can be overcome by motivated people, with access to good cardio vascular exercise, facilitated by insightful healthcare providers.

Find more information and resources on exercise and hundreds of other SCI/D related topics at Spinal Cord Central (www.spinalcordcentral), or contact an information specialist at help@spinalcordcentral.org or 800-962-9629 M-F, 8:30am - 5:00 pm (ET).

9Vol. 7, No. 6

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Looking for more thantraditional outpatienttherapy can offer?Beyond Therapy® is an aggressive rehabilitation program that challenges people with spinal cord or brain injury to reactivate every last ounce of ability to achieve a healthier, stronger body. Created by Shepherd Center and based on innovative research in activity based training, Beyond Therapy® integrates intense physical therapy and exercise physiology to help people with disabilities get stronger, return to school, return to work, and lead healthier lives.

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13Vol. 7, No. 6

community outreachopen Arms Campaign Spokesperson Henry Winkler among AARP THe MAgAZINe’S 2011 Inspire Award Honorees

AARP The Magazine today announced the recipients of its ninth annual Inspire Awards. The Inspire Awards pay tribute

to extraordinary people who inspire others to action through their innovative thinking, passion and perseverance. The 2011 honor-ees include Maya Angelou (Andrus Award Winner – AARP’s highest honor), Tony Danza (Motivating Students), Lisa Niemi Swayze (Searching for a Cure), Pedro José Greer Jr., M.D (Caring for the Poor), Joy Behar & Eve Behar Scotti (Tackling Heart Disease), Helene Gayle, M.D. (Fighting Global Poverty), Henry Winkler (Help-ing Stroke Survivors), Sandy Chen Stokes (Breaking Cultural Taboos) and Elizabeth Warren (Fixing Finances).

Henry Winkler, best known for his role as the jovial Fonzie on “Happy Days,”is an award-winning actor and national spokes-person for Open Arms: Raising Awareness of Upper Limb Spasticity, in which Nation-al Spinal Cord Injury Association (NSCIA) is a participant. Winkler is serious about al-leviating the suffering of people living with this condition, and it comes from personal experience. After watching his mother suffer from upper limb spasticity resulting from a stroke, Winkler is helping the estimated 1 million Americans affected by this con-dition. He travels the country as a spokes-person for the campaign, which highlights treatment options, including a promising new Botox treatment.

Honorees are profiled in the January/February 2011 issue of AARP The Maga-zine, in homes beginning November 24th and available online now at www.aarp.org/

magazine. The honorees will receive their awards at a private gala in Washington D.C. on December 9th, presented by Platinum sponsor VITAS Innovative Hospice Care® and hosted by renowned broadcast jour-nalist Jane Pauley, AARP’s Ambassador of Your Life Calling.

“These ten compassionate, forward-think-ing and daring individuals define inspiration,” said Nancy Graham, Vice President and Edi-tor of AARP The Magazine. “Through their extraordinary contributions to society, this year’s Inspire Award honorees motivate our readers to get involved, give back, and make a difference in their own communities.”

Additional 2011 Inspire Award Winners

Maya Angelou – AARP Andrus Award Winner AARP’s prestigious Andrus Award pays trib-ute to the legacy of AARP’s founder, Dr. Ethel Percy Andrus. This national award recognizes an individual who, like AARP’s founder, has generated positive social change in the world and whose work and achievements reflect AARP’s vision of bring-ing lifetimes of experience and leadership to serve all generations.

Maya Angelou is no stranger to adver-sity— after being sexually molested as a young child, she prevailed to become one of the most revered voices of the century. With a life full of extensive achievements as a poet, author, playwright and civil rights activist, Angelou is undoubtedly one of the most influential voices of our time and is still expanding her influence at age 82. Shedding 40 pounds in the past year, she shares her wisdom on nutritious food in her 31st book entitled, “Great Food, All Day Long: Cook Splendidly, Eat Smart.” With predictable poignancy, she stresses the importance of love; “The only way we can heal and grow hearty is if we know love.”

“Maya Angelou is the epitome of ser-vice and inspiration and we are honored to have her accept the 2011 Andrus Award,” said A. Barry Rand, CEO of AARP. “Our founder Dr. Andrus was a dynamic woman who fought to enrich and improve the qual-ity of life for older Americans. She lived by the philosophy: To serve, not to be served—and Maya is the perfect example of some-one who has done just that. She remains

the standard for selfless action to which we should all strive to achieve.”

Tony Danza – Motivating Students Former “Taxi” and “Who’s the Boss?” star Tony Danza shattered all skepticism about his teaching capacities at the Philadelphia high school where he taught 10th grade English for a year while filming the A&E documentary series “Teach: Tony Danza.” After winning over the school’s stern prin-cipal, Danza continues his career in public education. He returned to Philadelphia in October to promote the Obama adminis-tration’s TEACH initiative, which seeks to recruit gifted teachers. The actor, who is in the midst of writing a book about the expe-rience, draws a passion for teaching from his mother. Said Danza, “My mother used to say every kid should have someone who is irrationally committed to their future.”

Joy Behar & Eve Behar Scotti – Fighting Heart Disease A family history of cardiovascular problems motivated this mother-daughter duo to be-come advocates for heart health. As leaders of the Mom’s Second Chance campaign, Joy and Eve have teamed up with the nonprofit WomenHeart and Bayer aspirin to promote the use of aspirin to prevent heart attacks after symptoms emerge.

Lisa Niemi Swayze – Searching for a Can-cer CureA year after her famous husband Patrick Swayze died from pancreatic cancer, Lisa Niemi Swayze, who is a talented author, choreographer and director in her own re-spect, has added “cancer crusader” to her list of accomplishments. As a spokesperson for the Pancreatic Cancer Action Network and activist for federal legislation to increase research funding, she has worked tirelessly to raise awareness of the disease. Niemi Swayze, whose goal is to see her husband’s name attached to a breakthrough drug for pancreatic cancer, asserts, “I know Patrick would hold that in higher regard than his entire acting career.”

Pedro José Greer Jr., M.D – Caring for the PoorGreer found inspiration from personal ex-perience to open the Camillus Health Con-cern, a medical clinic that cares for 10,000 homeless patients in Miami each year. Of his good deeds, the son of Cuban immigrants is humble about his work: “There was a huge

need out there and the only thing I knew how to do was be a doctor.” Greer, who is also co-founder of the St. John Bosco Clinic to treat destitute immigrants, has little to be modest about— he has received a 1993 Mac Arthur award, the 2009 Presidential Medal of Freedom and three papal medals.

Helene Gayle, M.D. – Fighting Global Poverty As head of the humanitarian organization CARE, Gayle has played an active role in huge charitable initiatives in the devastated areas of Haiti and Pakistan. Despite these large scale projects, she has a defined view of philanthropy: “I see change at the commu-nity level.” Gayle, who is focusing her work on empowering women in the developing world, is passionate about helping others: “We touch 60 million lives. But every one of those 60 million people goes on to change others. That’s the power of what we do.”

Sandy Chen Stokes – Breaking Cultural TaboosSandy Chen Stokes has dedicated her life to broaching the subject of death with the families of terminally ill Chinese American patients, whose cultural ideology considers the discussion bad luck. As a founder of the Chinese American Coalition for Compas-sionate Care (CACCC), Stokes works with more than 60 different health care organiza-tions, including the American Cancer Soci-ety, to train health care workers about this little-known, yet pressing issue for Chinese Americans.

Elizabeth Warren – Fixing Finances Elizabeth Warren has endless knowledge about the effect of debt on families; she has published more than eight books on the subject and was appointed to oversee the government’s bank-bailout program in 2008. Now, with more than three million homes in foreclosure, Warren is serving as the head of the Bureau of Consumer Fi-nancial Protection, the Obama administra-tion’s new consumer-watchdog agency. De-spite criticism from opponents of the new agency, Warren is passionate about its goal to protect Americans from fraud: “This is ultimately about people who work hard and shouldn’t have to worry about credit cards and mortgages that rip them off.”

Exclusive videos of the honorees and additional information on AARP The Magazine’s 2011 Inspire Award honorees can be found online at www.aarp.org/magazine.

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14 Vol. 7, No. 6

public policy

The Recent elections, deficit Woes and the Future of Social Security, Medicare and Health Reform By Joe Isaacs, CAE

The November elections brought major balance of power changes to the U.S. Congress and to the majority leadership

among state governors. While the Demo-crats clung to a narrow majority in the Sen-ate and hold the White House, the major-ity in the House of Representatives shifted dramatically to the Republicans, who now also hold the majority of gubernatorial seats nationwide. These changes have significant implications for three major issues of con-cern to the disability community -- Social Security, Medicare and the Affordable Care Act enacted last year. Moreover, the Con-gress must also seriously rein in spending in order to reduce the federal deficit and avert the kind of financial collapse already experienced by several European nations. How this will be achieved in a highly in-flammatory, partisan atmosphere remains to be seen.

Social SecurityAs I write this, both houses of Congress are trying to work out a continuing reso-lution or omnibus FY 2011 spending bill that would allow federal programs to op-erate for another year. Most programs will likely see their spending frozen at FY 2010 levels at best. But based on recent House proposed legislation, Social Security would receive an increase of $440 million. This would allow the Social Security Adminis-tration to maintain staffing levels in order to meet workload needs such as timely processing of applications for benefits and continuing to reduce the backlog of more than 700,000 pending appeals of disability cases. While the dollar increase is consider-ably lower than the $900 million increase proposed by President Obama and sup-ported by United Spinal, it would be a vic-tory if approved in view of the current cost control focus. Since entitlements such as Social Security and Medicare account for $1.00 in ever y $ 5.00 expended by the fed-eral government, these programs will not entirely escape deficit reduction and long-term solvency changes.

Amid deficit reduction discussions, United Spinal Association recently urged support of a Senate Resolution that would express the sense of the Senate against (1) privatizing Social Security, (2) further el-evating the retirement age for full benefits eligibility and (3) scaling back benefits based on beneficiary income levels rather than health and social service needs. Unit-

ed Spinal reminded Senators that Social Security benefits are underwritten by dedi-cated payroll taxes and did not contrib-ute to our current deficit. It urged them to reject savings achieved by diminishing the already modest Social Security benefits provided to disabled individuals and fami-lies with adult disabled children, many of whom depend on the benefits for their eco-nomic security. More than half of all dis-abled workers would have incomes below the federal poverty line without their Social Security benefits.

United Spinal also explained that peo-ple with disabilities often physically age at an accelerated pace to their chronological ages. Therefore, raising further the age for full benefit eligibility for Social Security (which is already scheduled to move from 65 to 67 years of age) would be detrimental not only to those disabled but also to their family caregivers who often suffer prema-ture incapacitation and unemployment af-ter years of caring for their loved ones.

MedicareThe good news is that it appears that com-promise legislation supported by United Spinal will be enacted before the end of 2010 that will avert for at least another year massive reductions in Medicare Part B phy-sician fee payments and the elimination of the exceptions process to the artificial out-patient therapy payment caps so critical to United Spinal constituents dependent on non-hospital – based physical, occupa-tional and speech therapy. The failure to address the doctor payment issue would have contributed to reduced accessibility to care as many physicians have vowed to bow out of Medicare or take no new Medicare patients if their payments were slashed by 25% as scheduled. As far as the therapy caps go, until alternative payment models are established preserving the exceptions process will enable needed care beyond the arbitrary annual enrollee benefit limit of $1860 to go undisrupted. United Spinal is also a part of a coalition effort to cre-ate a separate Medicare benefit that help to underwrite the complex rehab technology needs of those requiring power wheel chair systems, adaptive seating systems, alterna-tive positioning systems and other mobility devices.

Deficit reduction proposals for both Medicare and Medicaid could mean benefi-ciary premium increases and new limits on the federal subsidy of benefits in the future. United Spinal will be vigilant in its efforts to ensure that such changes will not be detri-mental to the health and wellbeing of those with spinal cord injuries and disorders.

Affordable Care ActDespite the bluster of House and Senate Republicans who have vowed to repeal the health reform law, their chances of doing so and undermining the many provisions favorable to the needs of our members is slim at best. Besides any such efforts awaits a veto by President Obama. Thus, while there will be a great deal of effort to slow further implementation of the new law with multiple oversights hearings in the Republican-held House, it is doubtful that health reforms will continue to forge for-ward.

Where action can be seriously slowed

is in the states where Republican governors could refuse federal funds and not partner with the federal government to create the insurance exchanges, Medicaid program expansion and public health accommoda-tions so central to the law’s success. With state budgets under their own constraints, however, states would be hard-pressed to turn away this additional federal support. A major court case brought by the State of Florida and joined by 20 other states challenges the implementation of the new law on the grounds that the federal gov-ernment cannot compel states to expand their Medicaid programs. If this suit is suc-cessful, the federal government will appeal and the case would likely have to await a decision by the U.S. Supreme Court to hear perhaps no earlier than the year 2012. Another case brought by the State of Vir-ginia, claiming the law’s requirement that individuals obtain health care coverage as unconstitutional, was upheld in Federal District Court in Richmond on December 13. The judge did not enjoin the law and halt its implementation since the mandate does not go into effect until 2014, provid-ing ample time for corrective measures.

National Spinal Cord Injury Association (NSCIA) and United Spinal Association invite you to share your views on these topics at policy@unitedspinal.org orwww.spinalcordadvocates.org.

Joseph C. Isaacs, CAE is Vice-President of Public Policy for Spinal Cord Advocates, a Public Policy Collaborative of United Spinal Association & National Spinal Cord Injury Association (NSCIA).

Members wishing to receive SCILife by uS mail must subscribe to help cover

the cost of mailing.

Complimentary copies will be available through our NSCIA

Chapters or Hospital Partners, and full electronic copies of SCILife will still be available

online at no charge.

The only way to guARANTee you receive every issue of

SCILife is to subscribe!

only $15.00 for all six annual issues! Visit www.spinalcord.org/scilife

15Vol. 7, No. 6

dMePoS Competitive Bidding ProgramNew Medicare-covered Equipment and Supplies Program in 2011

Starting on January 1, 2011, Medi-care began the first phase of the Du-rable Medical Equipment, Prosthet-

ics, Orthotics, and Supplies (DMEPOS) Competitive Bidding Program. The new program will begin January 1, 2011 in nine areas around the country, including Charlotte-Gastonia-Concord, NC-SC; Cincinnati-Middletown, OH-KY-IN; Cleveland-Elyria-Mentor, OH; Dallas-Fort Worth-Arlington, TX; Kansas City, MO-KS; Miami-Fort Lauderdale-Pompa-no Beach, FL; Orlando-Kissimmee, FL; Pittsburgh, PA; Riverside-San Bernardino-Ontario, CA.

The program’s stated goal is to save bil-lions of dollars for people with Medicare and other taxpayers – while preserving access to quality items and services from qualified suppliers. The concern on the part of many is that while the program may save money short term, those short term savings may be more than offset by a reduction in access to appropriate products and services, as well as an increase in long

term costs related to those.What is certain is that, in the areas

designated, this will change the suppliers people with Medicare will need to use and the process for getting the products and supplies you need.

Under the competitive bidding pro-gram, suppliers submit bids for certain medical equipment and supplies that must be lower than what Medicare now pays for these items. Medicare uses these bids to set the amount it will pay for those equip-ment and supplies under the new program. Qualified, accredited suppliers with win-ning bids are chosen as Medicare contract suppliers.

Medicare beneficiaries with Original Medicare in nine areas of the country will obtain program items from approved con-tract suppliers for nine categories of DME-POS. Beneficiaries who obtain program items in program areas will usually need to get these items from contract suppliers if they want Medicare to help pay for the item, unless their current suppliers become grandfathered suppliers (non-contract sup-pliers that choose to continue to provide certain rented equipment under the terms of the program).

People with Original Medicare who live in or travel to one of these nine areas with a prescription for any of the items listed below will almost always need to get these items from contract suppliers if they want Medicare to help pay for the item, unless their current suppliers become grandfa-thered suppliers (non-contract suppliers

that choose to continue to provide certain rented equipment under the terms of the program).

So people will need to find out which suppliers are Medicare contract suppliers to make sure their medical equipment and services will be covered by Medicare. You can find a list of suppliers included in the program by calling 1-800-MEDICARE or by using the online supplier locator tool at www.medicare.gov/supplier. The online supplier locator tool has been up-dated recently with new features for the competitive bidding program. From www.medicare.gov/supplier, here’s how to access a list of Medicare DMEPOS Competitive Bidding Program contract suppliers for a particular beneficiary’s area: • enter the Medicare beneficiary’s zip

code and click “Submit;”• a list of product categories will ap-

pear; those product categories with a star icon next to them are included in the competitive bidding program;

• after selecting a competitive bidding product category, click “View Re-sults”

• a page will display stating you’ve se-lected a competitive bidding product category and briefly explain the pro-gram; click “Continue”

• a list of all Medicare contract supplier locations in the competitive bidding area will appear.

The nine product categories that are in-cluded in the program are:

1. Oxygen, oxygen equipment, and supplies

2. Standard power wheelchairs, scooters and related accessories;

3. Complex rehabilitative power wheel-chairs and related accessories (Group 2 only);

4. Mail-order diabetic supplies; 5. Enteral nutrients, equipment, and

supplies;6. Continuous Positive Airway Pressure

(CPAP) devices and Respiratory As-sist Devices (RADs) and related sup-plies and accessories;

7. Hospital beds and related accessories;8. Walkers and related accessories; and 9. Support surfaces (Group 2 mattresses

and overlays in Miami-Fort Lauder-dale-Pompano Beach, FL only).

You can find more information on the Medicare DMEPOS competitive bidding program by visiting http://www.cms.gov/Partnerships/03_DMEPOS_Toolkit.asp.

If beneficiaries have questions, they may call 1-800-MEDICARE (1-800-633-4227), visit www.medicare.gov or call their State Health Insurance and Assistance Pro-gram (SHIP) for more information.

Find more information and resources on this and hundreds of other SCI/D related topics at Spinal Cord Central (www.spinalcord-central), or contact an information specialist at help@spinalcordcentral.org or 800-962-9629 M-F, 8:30am - 5:00 pm (ET).

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16 Vol. 7, No. 66 September/October 2007

NSCIA will celebrate 14 new inducteesand an emerging leader at the 3rd an-nual Spinal Cord Injury (SCI) Hall of

Fame gala and induction ceremony on theevening of Tuesday, Nov. 6, at the John F.Kennedy Center for the Performing Arts inWashington, D.C. in recognition of the ac-complishments of people with SCI andthose committed to their quality of life.

Once again, NSCIA will be host to aperformance on the Millennium Stage, fol-lowed by the 2007 induction ceremony anda dessert reception in the Roof TerraceRestaurant. Nashville based singer/song-writer JP Williams will perform on the Mil-lennium Stage, and award-winningjournalist, Leon Harris will emcee the event.

Hosted last year by inaugural SCI Hallof Fame member and former DatelineNBC correspondent John Hockenberry,this black tie optional celebration is at-tended by business professionals, govern-ment officials from a variety of departmentsincluding the U.S. Departments of Healthand Human Services, Labor, Justice, Edu-cation, Housing and Urban Developmentand the Social Security and Veterans Ad-ministrations, healthcare providers, mediarepresentatives, researchers, individuals, andfamilies – all of whom share a commitmentto maximizing the quality of life for peoplewith spinal cord injury and disease.

This year’s categories include AssistiveTechnology, Benefactor, Corporate Execu-tive, Disability Activist, Disability Educator,Entertainment, Entrepreneur, GovernmentExecutive, Grassroots Organizer, Legislative,Media, Research in Basic Science, Researchin Quality of Life, and Sports. In addition,NSCIA will award an “Emerging Leader,” aspecial award which was introduced last yearin conjunction with the 2006 SCI Hall ofFame.

The process began in August whenNSCIA called for nominations. Far exceed-ing last year’s nominations by almost 50stellar nominees, NSCIA has received morethan 165 qualified nominees! These nomi-nees were voted on by NSCIA membersand reviewed by a selection committee toratify the voting. One nominee from eachcategory will be inducted and celebrated atthe gala.

Formed by NSCIA in 2005, the SCIHall of Fame was created to celebrate andhonor individuals and organizations thathave made significant contributions to qual-ity of life and advancements toward a betterfuture for all individuals with spinal cord in-jury and disease.

To find out more about the SCI Hall ofFame or to see a list of previous inductees orthis year’s nominees, visit www.spinalcord.org.

Join Us at NSCIA’s 3rd Annual Spinal Cord Injury (SCI) Hall of Fame Gala

Attorney Ronald R. Gilbert

Attorney for the Spinal Cord Injuredif you, a friend or loved one, has been injured by: (1) Aproduct or use of a product (e.g. helmet, vehicle even if it is aone vehicle accident and you are the driver, ladder, trampolinemore), (2) On someone else’s property (e.g. falls, gunshot,recreation or athletic events more), (3) During a medicalprocedure or as a result of a prescription drug — YOU MAY BEENTITLED TO ECONOMIC RECOVERY.

Put the nation’s top personal injury specialist to work foryou. Ron Gilbert has helped over 300 spinal cord injuredpersons in 35 states collect the compensation they deserve. Ifyou have suffered a spinal cord injury, he will try to help you.

Compensation from successful and responsible litigationcan open doors to a better life.

Some of Ron Gilbert’s many efforts to help the spinal cordcommunity include:

• Helped sponsor legislation benefitting spinal cord injuredpersons.

• Served as Secretary and member of the Board of Directorsof the National Spinal Cord Injury Foundation.

• Received a Certificate of Appreciation for Prevention workfrom Michigan PVA.

Time may be working against you. A rule of law called theStatute of Limitations puts a time limit in which you may file aninjury claim. This time can be as short as one year. If you havebeen seriously injured, time may be running out. Don’t wait.There is no cost to talk to Ron.

For help, call Ron Gilbert today for a free review of yourlegal options. He’ll provide legal help as well as assistance inplanning, and coping with the physical, emotional and otherchallenges you face.

1-800-342-0330Ronald R. Gilbert, P.C.

www.fscip.org / ron@fscip.orgwww.aquaticisf.org

rrgpc@aol.comIf you have suffered a spinal cord injury, call today to receive afree legal consultation and complimentary copy of SpinalNetwork and a handbook on legal options for victims of spinalcord injuries.

Cases HandledPersonally Nationwide

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Advocate for the Spinal Cord InjuredPut the nation's top personal injury specialist to work for you. Ron Gilbert has helpedover 200 spinal cord injured persons in 35 states collect the compensation they deserve.If you suffered a spinal cord injury, maybe he can help you.

Compensation from successful and responsible litigation can open doors to a bet-ter life. With the high cost of disability related expenses, you need to know all your op-tions. It takes an experienced, committed, caring specialist to make the system work foryou.

Among Ron Gilbert's many prevention and advocacy efforts, he has:

° Helped sponsor legislation benefiting spinal cord injured persons.

° Founded the Foundation for Aquatic Injury Prevention and the Foundation forSpinal Cord Injury Prevention, Care and Cure (www.fscip.org).

° Served as Secretary and a member of the Board of Directors of theNational Spinal Cord Injury Foundation.

° Received a certificate of appreciation for Prevention work from theMichigan PVA.

° Served as a member of the SCI/TBI Advisory Committee - Michi-gan and Vice Chairman 1988 - 1996.

Time may be working against you. The rule of law called the Statuteof Limitations puts a limit on the time in which you may file an injuryclaim. This time can be as short one-year. If you have been seriouslyinjured and haven't talked with a lawyer, time may be running out.Don't wait. It won't cost you a cent to talk with us. And it may be themost important telephone call you'll ever make.

To get started, call Ron Gilbert today for a free review of your legal options. He'll pro-vide legal help as well as assistance in planning, networking and coping with the phys-ical, emotional and legal challenges you face.

If you have suffered a spinal cord injury, call today to receive a free legal consultationand complementary membership in the National Spinal Cord Injury Association, includ-ing the publication Options, a complementary copy of Spinal Network and a hand-book on legal options for survivors of spinal cord injuries.

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1-800-342-0330Ronald R. Gilbert, PC

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OPTIONS FOR SURVIVORS OPTIONS FOR SURVIVORS OF SPINAL CORD INJURIESOF SPINAL CORD INJURIES

° Financing The Future: Managing Disability Re-lated Expenses

° Prevention: Helping Others Avoid Accidents ° Liability, Compensation And Your Rights ° Legal Options ° Improving Safety Through Legal Action ° Finding and Choosing An Attorney ° Getting Help: A Guide To Organizations

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NSCIA Member ServicesSCILife, HDI Publishers, PO Box 131401,

Houston, TX 77219-1401Phone (713) 526-6900

Toll free (800) 962-9629Fax (713) 526-7787

e-mail: membership@spinalcord.org web site: www.spinalcord.org

The National Spinal Cord Injury Association (NSCIA) is anon-profit membership organization for people with spinalcord injuries, diseases and dysfunction, their families, their re-lated service providers, policy makers, organizations, hospitalsand others interested in the issues affecting the spinal cord in-jury community. Our mission is to enable people with spinalcord injuries, diseases and dysfunction to achieve their highestlevel of independence, health and personal fulfillment by pro-viding resources, services and peer support.

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scilife19:SCILIFE 12/30/2007 21:50 Page 6

public policyPublic Comment on Accessible Web In-formation to the u.S. department of JusticeRevising the ADA Regula-tions to Address Accessible Web Information and Ser-vices, Movie Captioning and Video Description, Next Generation 9-1-1 and Equipment and Furniture

on behalf of the millions of Americans with spinal cord injuries and disorders nationwide, the United Spinal Associa-

tion wishes to thank the U.S. Department of Justice for this opportunity to comment publicly on the possible revisions of the ADA regulations to address accessible web information and services, accessible com-munication supports and adaptive equip-ment and furniture. My name is Joe Isaacs and I am the Vice President for Public Pol-icy at the United Spinal Association. My

brief remarks today will focus on feedback we have received from constituents about their challenges in clinical facility settings relative to the proposed regulations.

Accessibility to doctors’ offices, clinics, and other health care providers is essential in providing medical care to people with dis-abilities. Due to barriers, both physical and communication-related, individuals with disabilities are not as likely as those without disabilities to receive routine examinations and preventive medical care, nor are they as likely to be informed partners in their care.

Access to medical care is legally required by the Americans with Disabilities Act but feedback from our constituents suggests that many providers continue to be out of compliance with the law. United Spinal As-sociation asked its members and others with disabilities about the barriers they encounter when seeking medical care and treatment. The most frequent response involved access to medical equipment such as examination tables, dentist chairs, scales, and mammog-raphy and colonoscopy equipment.

Tables and chairs that are not adjustable for easy transfer create a huge barrier to in-dividuals using wheelchairs or those of short stature. If they were not informed in ad-vance to bring someone with them to help them transfer on to the furniture or equip-ment, these patients were often told at their appointment that they could not be treated at that particular facility.

Another barrier is weight scales as most patients are required to stand and be weighed as part of a routine medical exami-nation. Even if a scale is accessible and is able to weigh a person still sitting in his/

her wheelchair, the accuracy should not depend on the patient’s knowledge of the wheelchair’s exact weight. Not having the weight of a patient or an inaccurate weight may hinder the effectiveness of any medica-tion that is based on the patient’s weight and related absorption rate.

The United Spinal Association would like to see adjustable examination tables, accessible scales, Hoyer lifts, and other adaptive medical equipment be read-ily available in all clinical settings to serve people with disabilities with accompanying technical criteria to ensure their appropri-ate use.

Additionally, we have received numer-ous complaints about the unwillingness of medical practices to address communica-tion challenges with people with disabili-ties by denying needed sign language in-terpreters, who are critically important to ensure patient understanding of complicat-ed medical procedures, new treatment regi-mens and billing issues. These constituents were typically told that they needed to be accompanied by a family member or friend to address their communication needs or no accommodation would be provided otherwise.

In closing, we would like to urge the Department of Justice to more strictly en-force the current ADA regulations to ensure that the needs of persons with disabilities in medical care facilities are adequately accom-modated with the provision of adaptive fur-niture and equipment that does not deprive these patients from receiving care equal to other consumers of health care. Moreover, we emphasize the need to ensure that health

care providers provide effective communica-tion to and from patients with disabilities.

Thank you again for this opportunity to comment.

These comments were submitted by Joe Issacs on December 16, 2010 as part of Spinal Cord Advocates, a Public Policy Collaborative of United Spinal Association & National Spinal Cord Injury Association (NSCIA). National Spinal Cord Injury Association (NSCIA) and United Spinal Association invite you to share your views on these topics at policy@unitedspi-nal.org or www.spinalcordadvocates.org.

Spinalcord.org is looking for

volunteers

Please contact us at volunteer@spinalcord.org

17Vol. 7, No. 6

vOluNteer OppOrtuNItIeS At NSCIA

Are you looking for a way to make a difference? Volunteering with the National Spinal Cord Injury Association (NSCIA) offers the opportunity to do just that – and in a way that fits your levels of experience and availability. Since we have a national Chapter network, and so much of our work is done via phone and email,

we can work with any motivated volunteer no matter where they live.

Volunteer support is vital to our organization’s ability to accomplish as much as we do with limited staff and budget. You can make a difference by…

If you would like more information or to apply to serve as an NSCIA volunteer, please contact Eric Larson at 847-997-2109 or volunteer@spinalcord.org.

…building resources. The Development Committee helps NSCIA identify and connect with sources of funding and foster the development of the Association’s financial well being.

…raising voices. The Communications Committee works with the VP of Communications and NSCIA staff to facilitate communications both within and outside the Association.

…growing our membership. The Membership Committee works with the VP of Membership to promote the growth and develop-ment of the Association’s membership and helps to build and communi-cate the value of membership in NSCIA.

…supporting special projects. our Resource Center also uses volunteers on a project basis, depending on current activ-ity, ranging from research to phone/email contact to planning or staffing events.

…working with local Chapters. Most of our national network of Chapters also use volunteers and we would be happy to connect you with a Chapter in your area.

Committees typically meet monthly via teleconference, and time commitment varies but can average as little as 2 - 5 hours per month depending on your committee, or as high as you want, lim-ited only by your passion for progress.

Mick Countee...Continued from page 4 cord and saving his life, at Georgetown University Hospital, the first thing he heard from his mother and father was “ This is not going to change anything in your life. You will do everything you ever want to do.” They said this over and over to him during the next two years.

At the lowest point of his life, bewil-dered with the magnitude of the unknowns of a condition he had probably never heard of or imagined himself with, his mind grasped and internalized the meaning and import of those words from his parents. He lived these words over the years to overcome every obstacle and challenge he encountered to become the determined and relentlessly positive achiever who we remember today.

After spending two and a half years in hospitals (unimaginable amounts of time and money by today’s standards and practic-es of medical care), with the help of personal care attendants and family support, he went back to college and received his BA at Amer-ican University in 1963. He searched for jobs, got several offers and began working---long before elevators for wheelchairs, curb cuts and Minivans. Four years later, he went back to school again. He attended George-town University school of Law and received his JD in 1967. He did legal work in the public and private sectors for four years and then returned to Boston and Harvard, on this occasion for two years, and received an MBA from the Harvard Business School.

Along this entire journey, he had an infectious “ joie de vivre ”, easily spread-ing over friends, his work and business col-leagues, associates and just plain folks he met every day. He maintained an exuberant, curious and active lifestyle, enjoying sail-ing on the Chesapeake Bay and elsewhere, meeting and interacting with all kinds of people, listening to jazz, eating good food and traveling. His daily disposition was in-evitably warm and friendly.

He acquired a taste for international traveling when his father received a Full-bright Fellowship to help design the science curriculum of the Dutch school system. The family lived in The Hague, Holland in 1951-1952, visiting much of Europe dur-ing vacations. Over his lifetime, Mickey traveled all over the world, including two trips to both China and Cuba. He enjoyed the company of lovely ladies, married three times and had one daughter.

His attitude towards life was “ Never look back. Look only forward.” He is an in-spirational life model as a perfect rhetorical example of examining yourself with:

“ Why not ? ” and “ What‘s holding you back ? ”

Early in his career, he worked at several federal agencies including the Peace Corps, VISTA, and Comptroller of the Currency, the SEC and the OMB. He also taught at Howard University School of Business. For some years he advised and secured capital for aspiring business entrepreneurs in the Washington, D.C. area and then capped his public service as Executive Director of the Maryland National Park and Planning

Commission, for a tenure of ten years.

After retiring from public ser-vice, Mr. Countee lightly practiced law, and served for several years as pro bono Executive Director of the National Spinal Cord Injury Asso-ciation. He was active in helping to pass the Americans with Disabilities Act, conducted advocacy and of-fered testimony on disability issues in Congress, at local, state and na-tional levels and participated in the first White House Conference on the Handicapped during the Clinton Administration. He was one of many people who, when the initial model of Franklin D. Roosevelt’s Memo-rial was publically unveiled, without a wheelchair included, rebuked and reprimanded the planners and ar-chitects. He acted through not only through writing but by organizing a protest, en masse, including many in wheelchairs at the proposed site. The memorial model was indeed revised by the architects to show the former President in a wheelchair.

He was irrepressibly positive, and particularly enjoyed meeting, mentoring and advising young peo-ple. In his leisure time, he sated his intellectual and philosophical bent by monitoring economic and politi-cal trends and by meditating and re-flecting on the mysteries, ironies and myriad facets of the beauty of life on this earth.

Thomas H. “Mickey” Countee Jr., esq., August 7, 1939 – october 30, 2010.

18 Vol. 7, No. 6

NSCIA ChApter & Support Group NetworkARIZONASuPPoRt GRouPSEast Valley Support Group (CoMPASS)Phone: (602) 241-1006Contact: Pauline Staples E-mail: plstaples@msn.com

Flagstaff Support GroupPhone: (928) 527-8567Contact: Al White

Grupo de apoyo en EspañolGentiva Rehab Without Walls, 7227 N 16th St #107, Phoenix, Arizona Phone: (602) 943-1012Contact: Diane

Prescott Support GroupPhone: (623) 209-0311Contact: Gary Hershey

SCI Women Support GroupBanner Good Samaritan Hospital, 1111 E McDowell Rd, Phoenix, Arizona, 85006 Phone: (602) 239-3307Contact: Jill Greenlee, CtRS

CALIFoRNIACHAPtERWYNGS, NSCIA7900 Nelson Rd., Panorama City, California, 91402Phone: (818) 267-3031Fax: (818) 267-3095Contact: Michele Altamirano Website: www.wyngs.orgE-mail: wyngs4sci@msn.com

SuPPoRt GRouPSSouthern California SCI Support GroupCasa Colina Centers for Rehabilitation 255 E. Bonita Ave., Pomona, California, 91769 Phone: (818) 267-3031Fax: (818) 267-3095Contact: Michele Altamirano, WYNGS Email: wyngs4sci@msn.com

Leon S. Peter’s Rehabilitation CenterP.o. Box 1232, Fresno, California, 93715Phone: (559) 459-6000 Ext. 5783Contact: Ray Greenberg E-mail: rgreenberg@communitymedical.org

CONNECTICUTCHAPtERConnecticut Chapter, NSCIAP.o. Box 400, Wallingford, Connecticut, 06492Phone: (203) 284-1045Contact: Jeff Dion Website: www.sciact.orgE-mail: nscia@sciact.org

DISTRICT OF COLUMBIACHAPtERSCI Network of Metropolitan Washington, NSCIAAttn: SCIN, 14 Wolf Drive, Silver Spring, Maryland, 20904Phone: (240) 429-6141Contact: Kimball GrayE-mail: kimballg@ecnv.org

FLORIDASuPPoRt GRouPSPeer Support Contact313 Spider Lily Ln, Naples, Florida, 34119Phone: (239) 353-5894Contact: Mindy Idaspe E-mail: scidconsultant@hotmail.com

Sea Pines Rehabilitation Hospital101 East Florida Ave., Melbourne, Florida, 32901Phone: (321) 984-4600Contact: Ellen Lyons-olskiE-mail: ellen.lyons-olski@healthsouth.com

Capital Rehabilitation Hospital1675 Riggins Rd., tallahassee, Florida, 32308Phone: (850) 656-4800Contact: JoAnna Rodgers-Green

Florida Rehab. and Sports Medicine5165 Adanson St., orlando, Florida, 32804Phone: (407) 823-2967Contact: Robin Kohn Email: rkohn@mail.ucf.eduPhone : (407) 623-1070Contact: Carl Miller

HEALtHSoutH - Support Group90 Clearwater Largo Rd., Largo, Florida, 33770 Phone: (727) 588-1866Contact Vicki Yasova

tampa General Hospital SCI Support Group2 Columbia Dr., tampa, Florida, 33601Phone: (800) 995-8544

GEORGIASuPPoRt GRouPSColumbus SCI Support GroupPhone: (703) 322-9039Contact: Ramona Cost E-mail: rvcost@mchsi.com

Central Central GA Rehab Hospital3351 Northside Dr., Macon, Georgia, 31210Phone: (800) 491-3550 Ext. 643Fax: (478) 477-6223Contact: Kathy Combs

ILLINOISCHAPtERSpinal Cord Injury Association of Illinois1032 South LaGrange Road, LaGrange, Illinois, 60525Phone: (708) 352-6223Fax: (708) 352-9065Contact: Mercedes RauenWebsite: www.sci-illinois.orgE-mail: SCIInjury@aol.com

INDIANASuPPoRt GRouPSCalumet Region Support Group2109 Cleveland St., Gary, Indiana, 46406Phone: (219) 944-8037Contact: Rita Renae Jackson Email: rjackson@ci.gary.in.us

Northwest Indiana SCI Support Group1052 Joliet Rd, Valparaiso, Indiana, 46385Phone: (219) 531-0055Contact: Joe White E-mail: heyjoewhite@comcast.net

IOWACHAPtERSpinal Cord Injury Association of Iowa3936 NW urbandale Dr, urbandale, Iowa 50322Phone: (515) 554-9759Contact: Angie Plager Website: www.spinalcordiowa.orgEmail: SCIAofIowa@hotmail.com

KANSASCHAPtERGreater Kansas City SCIA5701 West 110th St,overland Park, KS. 66211Phone: (913) 491-5667Contact: Linda KlaiberWebsite: www.spinalcord.org/kansascityEmail: gkcscia@gmail.com

KENTUCKYCHAPtERDerby City Area Chapter, NSCIA305 W. Broadway, Louisville, Kentuky, 40202Phone: (502) 588-8574Contact: David Allgood, PresidentWebsite: www.derbycityspinalcord.orgE-mail: david.allgood@amerihealthmercy.org

SuPPoRt GRouPFriends with Spinal Cord Injuries3785 hwy 95, Benton, Kentucky, 42025Phone: (270) 205-5675Contact: Anndrea CoffmanE-mail: whelygurl@yahoo.com

LOUISIANALouisiana Disability Alliance, NSCIAP.o. Box 86632, Baton Rouge, Louisiana, 70817 Phone: (225) 436-4519Contact: Glenn Gaudet

MARYLANDSuPPoRt GRouPKernan Hospital SCI Support Group2200 Kernan Dr., Baltimore, Maryland, 21207Phone: (410) 448-6307Contact: Jenny Johnson Website: www.kernan.org/kernan/

MASSACHUSETTSCHAPtERGreater Boston Chapter, NSCIANew England Rehabilitation Hospital, two Rehabilitation Way, Woburn, Massachusetts, 01801Phone: (781) 933-8666Fax: (781) 933-0043Contact: Kevin GibsonWebsite: www.sciboston.comE-mail: sciboston@aol.com

SuPPoRt GRouPSBMC Support/Discussion Group7 West-Harrison Ave Campus,Boston, MassachusettsPhone: (781) 933-8666Website: www.sciboston.com/support.htm

Spaulding Support/Discussion Group125 Nashua Street, Boston, MassachusettsPhone: (617) 573-2081Website: sciboston.com/support.htm

Spaulding Support/Discussion Group 125 Nashua Street, Boston, MassachusettsPhone: (857) 222-5123Contact: Betsy Pillsbury Website: sciboston.com/support.htm

Whittier Westborough Support Group 150 Flanders Road, Westborough, MassachusettsPhone: (508) 871-2000 Ext. x2165Contact: Deb Website: sciboston.com/support.htm

MICHIGANCHAPtERMSCIA1938 Woodslee Drive, troy, Michigan 48083Phone: (248) 288-2270Contact: Stacey MurphyE-mail: smurphy@americaremedical.com

MISSISSIPPISuPPoRt GRouPMagnolia Coast SCI Support Group12226 oaklawn Rd., Biloxi, Mississippi, 39532Phone: (601) 969-4009Contact: Michelle Bahret Website: www.lifeofms.comEmail: mbahret@yahoo.com

MISSOURICHAPtERGreater Kansas City SCIA5701 West 110th St, overland Park, KS. 66211Phone: (913) 491-5667Contact: Linda KlaiberWebsite: www.spinalcord.org/kansascityEmail: gkcscia@gmail.com

SuPPoRt GRouPSouthwest Center for Independent Living2864 S. Nettleson Ave., Springfield, Missouri, 65807Phone: (417) 886-1188Contact: Marion trimble Website: www.swcil.orgE-mail: mtrimble@swcil.org

NEW HAMPSHIRECHAPtERNew Hampshire Chapter, NSCIA21 Chenell Drive, Concord, NH 03301 Phone: (603) 225-3304Fax: (603) 228-9680Contact: Debbie KriderE-mail: debbie@gsil.orgWebsite: www.nhspinal.org

NEW YORKCHAPtERSGreater Rochester Area Chapter, NSCIAP.o. Box 20516, Rochester, NY, 14602Phone: (585) 275-6097Contact: Karen GenettE-mail: rochesternscia@yahoo.comPhone: (585) 275-6347Contact: Amy ScaramuzzinoE-mail: ascaramu@frontiernet.net

New York City Chapter, NSCIAMt. Sinai Dept of Rehab MedicineAttn: James Cesario1 Gustave L. Levy Place, Box 1240New York, New York, 10029Phone: (212) 659-9369Fax: (212) 348-5901Contact: James Cesario or John Moynihan Website: www.nycspinal.orgE-mail: NYCspinal@NYCspinal.org

SuPPoRt GRouPSSCI Network of Central New YorkARISE, 635 James Street, Syracuse, New York, 13203Phone: (315) 464-2337Fax: (315) 464-2305Contact: tammy BartoszekE-mail: bartoszt@upstate.eduPhone: (315) 247-0927Contact: Maria FroioE-mail: scin4cny@yahoo.com

Long Island Spinal Cord InjuryPhone: (631) 221-9255Contact: Ron Quartararo Website: www.testaverdefund.orgE-mail: info@testaverdefund.org

NORTH CAROLINACHAPtERNCSCIA3701 Wake Forest Rd., Raleigh, North Carolina, 27609Phone: (919) 350-4172Contact: Deborah MyersE-mail: dmyers8@triad.rr.comContact: Karen Vasquez E-mail: kvasquez@wakemed.org

OHIOCHAPtERSNorthwest ohio Chapter, NSCIA13745 Archbold Whitehouse RdSwanton, ohio 43558Phone: (419) 875-4029Contact: Hank Burney, PresidentWebsite: www.nwonscia.orgE-mail: bjbiii77@windstream.netPhone: (419) 531-6401Contact: Becky GayE-mail: beckkevn1@aol.com

Northeast ohio Chapter, NSCIAPo Box 934, Chesterland, ohio, 44026Phone: (440) 442-5550Fax: (440) 442-5789Contact: Jeff Schiemann E-mail: jjscpajd@aol.com SuPPoRt GRouPHillside Rehabilitation Hospital8747 Squires Lane, Warren, ohio, 44484Phone: (330) 841-3856Contact: Rebecca LebronE-mail: rlebron@forumhealth.orgPhone: (330) 889-2158Contact: Rick AckermanE-mail: bird196@aol.com

PENNSYLVANIASuPPoRt GRouPSRehabilitation Hospital of Altoona2005 Valley View Blvd., Altoona, Pennsylvania, 16602Phone: (800) 873-4220

Greater Pittsburgh Rehabilitation Hospital2380 McGinley Rd., Monroeville, Pennsylvania, 15146Phone: (800) 695-4774Contact: Kristy NaumanE-mail: kristy.nauman@healthsouth.com

Delaware Valley SCIA2610 Belmont Ave., Philadelphia, Pennsylvania, 19131Phone: (215) 477-4946Contact: Bruce McElrath

Magee Rehabilitation SCI Resource& Support Group6 Franklin Plaza, Philadelphia, Pennsylvania, 19102Phone: (215) 587-3174Fax: (215) 568-3736Contact: Marie Protesto Website: www.mageepeers.org

Rehabilitation Hospital of York1850 Normandie Dr., York, Pennsylvania, 17404Phone: (800) 752-9675 Ext. 720Phone: (717) 767-6941Contact: tammy Derk E-mail: tammy.derk@healthsouth.com

SOUTH CAROLINACHAPtERSCSCIA2935 Colonial Drive, Columbia, SC 29203Phone: (866) 445-5509 (toll free)Phone: (803) 252-2198Contact: Diane Epperly, Executive DirectorE-mail: scscia@att.netContact: Rafe Ellisor, ChairmanE-mail: rafe.ellisor@healthsouth.comWebsite: www.scspinalcord.org

SuPPoRt GRouPSChester Area SCI Support GroupPurity Presbyterian Church on 135 Wylie Street, Chester, Chester, South Carolina,Phone: (803) 385-2270Contact: Bill McDonoughE-mail: billandlee@truevista.net

Conway Peer Support GroupNew Horizons Center, 1021 Third Avenue, Conway, SCPhone: (843) 488-1309 Contact: Ellen LeftwichE-mail: leftwich@sccoast.net

Florence, SC Area SCI Support GroupHealthSouth Rehabilitation Hospital of Flor-ence, 900 East Cheves Street, Florence, SCPhone: (843) 679-9932Contact: Ronnie McFaddenE-mail: ronnielmc@yahoo.com

Greenwood Peer Support GroupBurton Center, 2605 Highway 72/221 East, Greenwood, SCPhone: 864-942-7124Contact: Kristy LawsonEmail: klawson@burtoncenter.org

Midlands Peer Support Group2935 Colonial Drive, Columbia, SCContact: Diane EpperlyPhone: (803) 252-2198 or 866-445-5509E-mail: scscia@att.net

orangeburg, SC Area SCI Support Group3000 St. Matthews Road, orangeburg, SCPhone: (803) 829-2043Contact: Rebecca FelderE-mail: Rebecca.felder@yahoo.com

Spartanburg, SC Area SCI Support Group101 St. Matthews Lane, Spartanburg, SC, 29301Phone: (864) 595-1947Contact: Dot ColsonE-mail: DColson@Dennys.com

trident Peer Support Group1812 Sam Rittenberg Blvd., Charleston, SCPhone: (843) 792-2605 Contact: Richard AustE-mail: aust@musc.com

TENNESSEECHAPtERtennessee Spinal Cord Injury Association (tSCIA)105 Ballentrae Drive,Hendersonville, tN 37075Phone: (615) 947-6204 Contact: Cheryl Stowe, Executive Director E-mail: cherlystowe@yahoo.com Website: www.standuptn.com

TEXASCHAPtERRio Grande ChapterHighlands Regional Rehab. Hospital 1395 George Dieter, El Paso, texas, 79936Phone: (915) 298-7241Fax: (915) 298-7298Contact: Sukie ArmendarizContact: Ron Prieto E-mail: riograndenscia@aol.com

VIRGINIACHAPtERSpinal Cord Injury Association of VirginiaP.o. Box 8326Richmond, VA. 23226Phone: (804)726-4990Fax: (888) 752-7857Contact: Steve FetrowEmail: steve.fetrow@sciava.orgWebsite: www.sciava.org

WASHINGTONSuPPoRt GRouPSCI Forumuniversity of Washington Medical CenterCafeteria Conference Room B/C1959 NE Pacific St, Seattle, Washington 98195Phone: (206) 685-3999Contact: Cynthia SalzmanE-mail: Csalzman@u.washington.edu

WEST VIRGINIASuPPoRt GRouPWest Virginia Mountaineer Support GroupP.o. Box 1004, Institute, West Virginia, 25112Phone: (304) 766-4751(W) Fax: (304) 766-4849 Contact: Steve Hill E-mail: steveh@mail.drs.state.wv.us

WISCONSINCHAPtERNSCIA Southeastern Wisconsin1545 S. Layton Blvd., Rm. 320, Milwaukee, Wisconsin, 53215Phone: (414) 384-4022Fax: (414) 384-7820Contact: NSCIA-SWC officeE-mail: office@spinalcordwi.orgContact: John Dziewa E-mail: president@spinalcordwi.orgWebsite: www.spinalcordwi.org

For a current listing of Chapters and Support groups, visit www.spinalcord.org, or call 800.962.9629.

If you cannot find a chapter or support group in your area, why not start your own? Contact the National office for assistance on our Helpline: 800.962.9629.

19Vol. 7, No. 6

Register online for priority access!www.abilitiesexpo.comwww.abilitiesexpo.com

HoustonAugust 26-28, 2011

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AtlantaFebruary 17-19, 2012

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We discovered wheelchair accessories to makeour lives easier!

“We were quite pleased with the turnout of vendors for people of alldisabilities. We especially like the new inventions brought in by guyswho know firsthand what is needed for those in a chair. It takes aperson with a disability to understand the meaning of ‘disability’." Trish N., Houston Abilities Expo

I saw my son walk hands-free for the first timewith the help of a special walker!

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I made lasting connections with people from across the country.

"I think my favorite part is networking with people, as that's how I cancontinue being a resource for others. The more I know, the more I canhelp others! Interacting with other professionals with differentcapabilities was inspiring to me as well!" Angie P., Chicago Abilities Expo

I learned so much from the free workshops."I was able to attend a workshop for travel and will share with the MSSelf Help Group I attend and help facilitate. The workshop was great. Itwas hard for me to take enough notes!" Gail W., Chicago Abilities Expo

I feel 20 years younger thanks to Abilities Expo.“WOW! I never thought my arthritis would let me pick up a spoonagain and I found a whole set of cutlery designed for people like me.There were all sorts of practical gadgets to make lives for seniors, likeme, easier.” Robert S., Atlanta Abilities Expo

Los AngelesApril 15-17, 2011Los Angeles Convention Center

New York MetroMay 20-22, 2011New Jersey Convention & Expo Cente

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For People with Spinal Cord Injuries… Experience Abilities Expo…For People with Spinal Cord Injuries… Experience Abilities Expo…

SpinalCord:Layout 1 12/10/10 6:30 AM Page 1

You can be there for her.

Even if you can’t be there with her. CaringBridge helps connect people

during a significant health challenge. Patients and families can easily

create a free website to share the experience, save time and energy,

and receive support.

To create your own website that gives recognition to the

National Spinal Cord Association, visit www.CaringBridge.org/spinalcord

NSCIA FORUMSDiscussion groups for people with SCI/D

Peer Support

Pregnancy and SCI

Equipment

Public Policy – Pending Legislation

Preventing Secondary Conditions

Financial Planning

Research – Supporting Quality of Life

New Injuries

Personal Assistance Services

Working/Employment

Disability Culture

Women and Disabilities

Do you have questions?

We have answers.

Visit www.spinalcord.org

20 Vol. 7, No. 6