scilife, vol. 2, no. 2

www.spinalcord.org

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

Vol. 2, No. 2Spring 2005

The 2005 Academy Awards ceremonieshonored the film Million Dollar Baby,directed by Clint Eastwood, with the

Oscar for Best Picture of 2005, in effectcelebrating its central theme — that it isjustifiable to end the life of a woman who

has become quadriplegic. NSCIA, alongwith other disability organizations includ-ing Not Dead Yet, has been speaking outvehemently in protest.

On the whole, the mainstream media hasneglected to address Million Dollar Baby'streatment of assisted suicide, choosing toprotect the surprise plot twist in whichMaggie, the lead character played by HilarySwank, has her neck broken following anillegal "sucker punch" in her title fight.

Also left unmentioned is director andstar Clint Eastwood's contentious historywith the disability community. He spent over$600,000 fighting accessibility measures atMission Ranch, a resort he owns in Carmel,California, rather than invest the $7,000 themodifications would have cost. He testifiedto Congress in support of a bill that wouldweaken rights under the ADA. NSCIA won-ders why, after a history like that, would aman make a movie like this, opening himselfto accusations of a vendetta against the dis-ability community?

Marcie Roth, CEO of the NationalSpinal Cord Injury Association has been

Million Dollar Baby Gets It WrongNSCIA and The Disability Community Speak Out

Continued on page 22

winds across the street to demonstrate forthese reforms. Nearly all the demonstratorswere wheelchair users, most draped in anarray of flags, ponchos, banners, and mittensto keep out the cold.

When the NGA met with thePresident at the White House there waslittle in the way of agreement. "What theyare saying to states," said WisconsinGovernor Jim Doyle, "is, 'We're going tocut you and give you more flexibility' —and the flexibility is you can cut peopleoff." Said New Mexico Governor Bill


By Michael Bailey,SCILife Contributor

F rom February 27-March 1, facinginclement weather, over 500 members ofADAPT (American Disabled for

Attendant Programs Today) convened inWashington D.C. to demand that theNational Governor's Association (NGA) passan ADAPT-sponsored resolution calling forlegislation to end institutional bias againstpeople with disabilities in Medicaid law.

Two legislative proposals currently pend-ing in Congress seek to change federal long-term care policy, allowing flexible funding ofsupport plans that would be created by theindividual. Both would end the current insti-tutional bias in Medicaid law.

Senate bill S.301 — known asMiCASSA, the Medicaid CommunityAssistance Services and Supports Act — willmake choice and community living the cor-

nerstone of Medicaid funding. Itwas recently re-introduced in theSenate by Senators Tom Harkin(D-IA) and Arlen Specter (R-PA).A companion bill in the House ofRepresentatives, HR.910, is spon-sored by Representatives DannyDavis (D-IL) and John Shimkus(D-IL).

Another proposal called "Money Followsthe Person" would also end institutional bias,allowing Medicaid-funded support money togo with the individual rather than go tolicensed private or non-profit institutions.Sponsors in the Senate are Senator Harkinwith Senator Gordon Smith (R-OR).

Both proposals enjoy wide popular andbipartisan support. The nursing home lobbyand the Bush Administration oppose both.

As the National Governor's Association(NGA) met in the warm salons of theMarriott Hotel, the determined group ofADAPT activists braved snow, sleet, and icy

ADAPT Rolls In The RainMarch in D.C. Directed at Governors

A rich and diverse group of forward-thinking companies and organizationswho understand the benefits of partner-

ships with the SCI community are generoussupporters of the SCI Summit 2005 and theSCI Hall of Fame to take place inWashington, D.C. this coming May 9-11.

There is a growing realization across avariety of sectors that people with SCI andSCI stakeholders bring value to the table. TheNational Spinal Cord Injury Association isserious about wanting to do business withbusiness for the mutual benefit of all.

"These days corporations look less favor-ably upon groups coming to them for a hand-out. Now business is looking for a hand-shake," states Kevin Bradley, Director ofDiversity Initiatives at McDonald's

NSCIA: The Bridge to BusinessSummit Sponsors Seek the SCI Community


NSCIA THANKS THE FOLLOWING SUMMIT SPONSORS

Platinum SponsorThe Craig H. Neilsen FoundationThe Medtronic Foundation

Gold SponsorThe John F. Kennedy Center for the Performing Arts

Silver SponsorBank of America

Bronze SponsorsAcorda TherapeuticsChristopher Reeve Paralysis FoundationCingular WirelessMcDonald's CorporationMicrosoft Northwest AirlinesParalyzed Veterans of AmericaUnited Spinal Association

Supporting SponsorsAmerica OnlineAmerican AirlinesMitsubishi Electric America FoundationPfizer Inc.Quickie / Sunrise MedicalShepherd CenterThe sanofi-aventis GroupTherapeutic Alliances Inc.

Scholarship SponsorThe Miami Project to Cure Paralysis

2 Spring 2005

3Spring 2005

SCILife is dedicated to the presentation of news concerningpeople with spinal cord injuries caused by trauma or disease.We welcome manuscripts and articles on subjects related tospinal cord injuries or the concerns of persons with disabilitiesfor publication, and reserve the rights to accept, reject, or alterall editorial and advertising materials submitted. Manuscripts and articles must be accompanied by a selfaddressed stamped envelope if return is requested. Items reviewed in New Products Announcements and adver-tising published in SCILife do not imply endorsement oforganizations, products or services.

SCILife is a publication of the National Spinal Cord Injury Association

SCILife STAFFEEXXEECCUUTTIIVVEE EEDDIITTOORR:: Gary KarpAASSSSOOCCIIAATTEE EEDDIITTOORR:: Janine Bertram Kemp DDEESSIIGGNN AANNDD LLAAYYOOUUTT:: Nikolai AlexeevAADDVVEERRTTIISSIINNGG SSAALLEESS:: Joyce Parker DDAATTAA IINNPPUUTT:: Bonnie J. Haynes

NSCIA NATIONAL OFFICE STAFFCCHHIIEEFF EEXXEECCUUTTIIVVEE OOFFFFIICCEERR:: Marcie Roth CCHHIIEEFF OOPPEERRAATTIINNGG OOFFFFIICCEERR:: Eric LarsonCCOOMMMMUUNNIICCAATTIIOONNSS DDIIRREECCTTOORR:: Janine Bertram KempRREESSOOUURRCCEE CCEENNTTEERR MMAANNAAGGEERR:: Charleene FrazierDDEEVVEELLOOPPMMEENNTT CCOONNSSUULLTTAANNTT:: Deanna AckermanMMEEMMBBEERRSSHHIIPP SSEERRVVIICCEESS AASSSSOOCCIIAATTEE:: Daniela CastagninoMMEEMMBBEERRSSHHIIPP SSEERRVVIICCEESS AASSSSOOCCIIAATTEE:: Downey HinrichsMMEEMMBBEERRSSHHIIPP CCOOOORRDDIINNAATTOORR:: Julie DeFeaWWEEBB SSEERRVVIICCEESS//PPUUBBLLIISSHHIINNGG:: J. Charles Haynes, JDWWEEBBMMAASSTTEERR: Nikolai Alexeev

BOARD OF DIRECTORS EExxeeccuuttiivvee CCoommmmiitttteeeePPRREESSIIDDEENNTT:: Harley ThomasVVIICCEE--PPRREESSIIDDEENNTT FFOORR CCHHAAPPTTEERRSS:: Pat MaherVVIICCEE PPRREESSIIDDEENNTT FFOORR DDEEVVEELLOOPPMMEENNTT:: Tari Susan Hartman-SquireVVIICCEE PPRREESSIIDDEENNTT FFOORR MMEEMMBBEERRSSHHIIPP:: Janeen EarwoodTTRREEAASSUURREERR:: Jeffrey D. LeonardSSEECCRREETTAARRYY:: Janeen EarwoodCCEEOO//EEXXEECCUUTTIIVVEE DDIIRREECCTTOORR:: Marcie Roth

DDiirreeccttoorrss David Boninger, Ph.D.Jack DahlbergMilita B. Dolan, MASusan Douglas, MDJohn FioritiRichard HollickyGary KarpPaul MortensenJim RootChristine Sang, MDSuzanne Wierbinski

GGeenneerraall CCoouunnsseellLeonard Zandrow, Esquire

SCILife PUBLISHERSPPUUBBLLIISSHHEERR:: Charles W. HaynesPPUUBBLLIISSHHEERR:: J. Charles Haynes, JD

If you have any questions related to your membership with NSCIA, orwould like to join, contact us at901 East Willetta, Suite 2306, Phoenix, AZ 85006, e-mail: [email protected], fax: 602.239.6268, or phone us at 602.239.5929 or toll free at 877.778.6588.

For questions not related to membership, write to: NSCIA National Office, 6701 Democracy Blvd., Ste. 300-9, Bethesda, MD 20817. Our voice phone is 301.214.4006 fax: 301.881.9817.Email us at [email protected] or go to www.spinalcord.org.

For additional information on advertising inSCILife, contact: Advertising Sales Department,

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e-mail: [email protected]

SCILife © 2005

Because It’s PossibleBy Gary Karp,Executive Editor, SCI Life

Those of us who advocate for change inthe world do so for a simple reason; weknow in our hearts what is possible. We

see across the gap between possibility and thecurrent state of things. Our natural impulse

is to close that gap.We believe that ifwe can convinceothers and line upthe resources in theright way, the possi-ble will becomereal. We are idealistswho believe inchange and can’t sit

by knowing that people are being deniedtheir full potential for a quality life.

Spinal cord injury is a milieu infusedwith such un-manifested possibility. Ourcommunity is loaded with advocates whopassionately want to bring those possibili-ties within the grasp of everyone with anSCI who is willing to make the effort toreach for them.

We know that assistive technologies —from computers to the truly radical evolu-

tion of wheelchair design — extend theability to communicate, work, and movein the world in unprecedented ways. Wefight for funding to pay for these tech-nologies, and encourage young profession-als to explore the engineering and thera-peutic roles that pull it all togetherbecause we know it’s possible.

We strive to make rehabilitation effi-cient while making sure that people getaccess to services for as long as they needin order to reach their optimal ability. Butthe constraints of managed care have dan-gerously shortened length of stay. Thependulum has swung too far afield, mak-ing it much harder for people with recentinjuries to achieve what’s possible.

Our communities remain infused withphysical and attitudinal obstacles, and thevery right to live in those communities isimpeded for some by public policieswhich direct funds only to virtual impris-onment in institutional settings, wherevery little real living is possible.

Researchers continue the painstakingbut steady forward process of solving theintricate puzzle of the spinal cord. Thenotion of cure — and the many ways thatquality of life can be improved entirelyapart from walking — evokes our sense ofhow far beyond our limits we’ve alreadyleapt as a society. We can imagine reachingsuch grand visions to an extent that onlyten or so years ago we could never havethought possible.

And spinal cord injury need notequate with compromised health as welearn more about the impact of exercise

and activity, how to manage the agingeffects of life with SCI, and what is gainedfrom optimal diet and being able to gainaccess to the local gym. Good health withSCI is ever more possible.

Why else would we devote as much ofourselves as we do? We commit ourselvesto lifelong careers, we start and leadorganizations, we write books, we travel,we immerse ourselves in the minutiae ofgovernment and public policy, we take tothe streets. Frankly, the denial of the pos-sible has us pretty pissed off.

And we come together to seek unityand collaboration, such as our communityis about to do in Washington D.C. thisMay at SCI Summit 2005, where the pas-sionate purruist of the possible is the verything that unifies us.

Each of us, at our core, shares thisburning sense of lost possibility in thepresent, and truly attainable possibility forthe future. It’s not just a dream. There areenough examples of the possible cometrue in the thousands of people withspinal cord injuries fortunate enough tohave access to the resources and supportthey needed. They’ve proven many timesover what life with SCI can really be, andwhat people can do when they get past theobstacles that all of us know to be artificialand externally imposed.

We have the proof, we have the pas-sion, we have the deep drive to make it allhappen for anyone whose life has beenchanged by SCI.

Because we know it’s possible.

from the editor

By Marcie Roth,NSCIA Executive Director

A s you read this it is spring — the seasonof optimism. What an ideal time for abroad coalition of the SCI community

to come together for the work and celebra-tion of the SCISummit andHall of Fame.NSCIA cast awide net andbrought manypeople togetherto plan everyaspect and detailof this event, ateam that isdeeply commit-

ted to bring our community together. Weoften speak of unity; our efforts in stagingthe SCI Summit demonstrates our com-mitment to walk the walk and roll the roll,leaving room for everyone’s agenda.

Some have questioned whether we cantruly build the bridges necessary to affect thechange our constituents need. I say we haveno choice. We must come together in thecontext of our separate agendas or not one ofus will reach our real potential to make a dif-ference. Every stakeholder invested in theissues affecting the lives of people withSCI/D will need to push past their comfortzone and commit to creating and then

advancing a shared agenda for the future.I am writing this on Dr. Martin Luther

King Jr.’s birthday. He was a guiding lightto many — myself included — who won-der what our world would be like if he werestill among us. He set the bar high for civilrights and societal inclusion. It is in thisspirit that NSCIA has organized theSummit to build unity, and launched theSCI Hall of Fame to acknowledge our lead-ers and celebrate our successes.

I am acutely aware of the start of ourPresident’s second term and the opening ofthe 109th Congress. The turf battles and par-tisan alliances that consume many here inour capital are in fact irrelevant to our com-munity and our constituencies. Every newAdministration and Congress presents a newopportunity for us to improve the quality oflife for people with SCI/D — which isNSCIA’s impassioned mission.

We have a fresh opportunity to educatepolicy makers about our issues. Our econo-my is global and the Internet has trans-formed communication. International links,shared resources, and collaboration are thewave of the future. It now makes more eco-nomic and political sense than ever to changethe system and maximize quality of life forpeople with SCI/D.

But systems change requires not only anational effort but well-planned initiatives inall 50 states where trust funds, Medicaid,housing, transportation, and employmentprograms are all implemented. If we unifyand sing from the same page, this could bethe Congress that embraces our solutions forsmart public policy.

Being part of — and of service to — acommunity that is so marginalized suits mejust fine as the eternal optimist I am.NSCIA has no desire to be part of theproblem through inaction, but to fuel the

solution through our advocacy and supportof the SCI community.

Recently Dr. Margaret Giannini,Director of the Office on Disability, U.S.Department of Health and HumanServices, invited me to join her in a series ofmeetings concerning tsunami survivors.The NSCIA Board embraces the role wehave to play in the international disabilitycommunity, participating in the interna-tional leadership discussions around suchevents as an upcoming international sum-mit on Iraqi’s with disabilities to be held inWarsaw.

In these meetings, my role has been todraw attention to the additional needs ofthose with new and existing disabilities.Whether it was the days after the devasta-tion of New York City on 9/11, the contin-uing loss in Iraq, the devastation of thetsunami, or just the daily struggles of peo-ple with SCI/D and their second class citi-zenship across the U.S., the failure to givepriority to the needs and lives of personswith disabilities is all too familiar — nomatter who they are or where they live.

As I write to you, NSCIA BoardPresident Carmen Jones’ term is ending. I amso grateful for the leadership and guidanceshe has given us. Carmen’s axiom is “solu-tions” and she infused our organization withthe optimism and practicality needed to takeNSCIA to a new level. Under the leadershipof our new Board President, Harley Thomas,I am all the more excited about our future.

In honor of Dr. King’s birthday, I sharea favorite and most appropriate quote: “Ifwe will make the right choice, we will beable to transform the jangling discords ofour world into a beautiful symphony ofbrotherhood.”

I call on us all to come together andmake that music.

4 Spring 2005

Grasp the Opportunity

from the executive director

NSCIA will hold its AnnualGeneral MembershipMeeting on Thursday,

May 12, 2005, at The Mayflower Hotel.

The address is 1127 Connecticut Avenue, NW

Washington, D.C.

The Annual Meeting, held in conjunction with SCI SummitTM 2005and the May meeting of the Boardof Directors, is open to all NSCIA

members in good standing.

By Tari Susan Hartman,NSCIA VP of Development

M inneapolis-based Medtronic is theworld’s leading medical technologycompany providing lifelong solu-

tions for people with chronic conditions,including SCI/D. Medtronic developedthe revolutionary IBT™ IntrathecalBaclofen Therapy in a refillable pumpdelivery system for the control of spastici-ty which dispenses small, precisely meas-ured dosages of medication. This systemgives those with SCI/D increased abilityto be active in their chairs for extendedperiods of time at work, school, leisure,worship, and social activities.

Medtronic and The MedtronicFoundation have been there every step (androll) of the way for NSCIA, helping withorganizational solutions to enhance the life-

long quality of life for people with SCI/D,and the association itself. Medtronic andThe Medtronic Foundation have providedincredible ongoing support to NSCIA atcritical phases of our capacity building,helping us to survive and thrive.

Medtronic is PassionateTheir website states “Medtronic is pas-

sionate about improving the health of peo-ple and communities…” No words wereever so true! Marcie Roth, NSCIA’s CEO,says, “Medtronic products greatly improvethe physical health of millions with SCI/D,and support from The MedtronicFoundation greatly improves the organiza-tional health of NSCIA.”

Since 1998, The MedtronicFoundation has helped NSCIA incubateour P.E.A.C.E. project for those with vio-lently acquired spinal cord injuries, moveus from the dark ages of snail mail to anefficient electronic communications systemto vastly improve contact with our mem-bership, and to bring our e-newsletter andwebsite plan into fruition.

They have also had an immeasurableimpact through their LeadershipDevelopment Award, capacity-building poli-cy briefings, and workshops on an array oftopics including “Non-Profit Life Cycles,”“Serving Diverse Constituencies,” and“Developing Constituencies.” Their trainingon “How You Change Members Into

Activists” planted the seeds for Marcie Rothto crystallize her thoughts on what ultimate-ly led to the May 9–11, 2005 SCI Summit.Now, there’s a gift that keeps on giving!

Medtronic the company fundedNSCIA’s resource document on navigat-ing the insurance maze for people withSCI/D (www.spinalcord.org/html/insur-ance) and NSCIA provides judges for

their annual contest to find artists withspasticity to fill printed calendar pages onthe issue of “freedom from spasticity.”This year’s calendar listed our SCISummit, and sold out quickly. RecentMedtronic surveys of Physical andOccupational Therapists provided respon-dents an option to donate their honorari-um to NSCIA.

When NSCIA envisioned a first timeever SCI Summit/Hall of Fame it’s no sur-prise that The Medtronic Foundation wasagain first to help us bring yet another dreaminto reality. Without their support as aPlatinum Sponsor, there would be no SCI

Summit 2005™, or SCI Hall of Fame™. Medtronic and The Medtronic

Foundation are certainly among the great-est of NSCIA’s friends. With their unwa-vering support, NSCIA has accomplishedmore than our own resources would everallow, but we are grateful far beyond theirfinancial support. Their spirit of collabora-tion and commitment to our shared con-stituency, and their belief in our potentialhas vastly extended our ability to improvequality of life for millions with SCI/D.

David Etzwiler, Senior Director,Medtronic Foundation and GovernmentAffairs says, “The Patient Link program ofThe Medtronic Foundation partners withover 50 organizations worldwide that edu-cate, support, and advocate on behalf ofthose with chronic health conditions anddisabilities. NSCIA is a leader in this advo-cacy community. We are proud to be part-nering with such an effective organization.”

Passion Knows No BoundsOn the corporate side, Medtronic was

recently presented the Secretary Recognitionaward from Secretary Tommy G. Thompsonat the U.S. Department of Health andHuman Services. They were host to the U.S.Department of Labor’s Assistant Secretary W.Roy Grizzard, and also welcomed OllieCantos, Special Assistant in the Civil RightsDivision from the U.S. DOJ for “Disability

MedtronicLifelong Solutions forPeople with SCI/D


bac profile

5Spring 2005

Our Past, Our FutureBy Harley Thomas,NSCIA Acting Board President

During the past two years as President ofthe NSCIA Board of Directors,Carmen Jones has been an outstand-

ing leader, and a wonderful personal friend.Due to familyhealth problemsCarmen was com-pelled — despiteher strong desireto continue tocontribute — tostep down fromher duties effectiveFebruary 1, 2005.In keeping with

the NSCIA Bylaws, the Chair of theExecutive Committee steps up and fills theposition of Board President until the nextannual meeting of the board, which willtake place in Washington, D.C. in May.I’m honored to accept the role, and extendmy thoughts and prayers to Carmen andher family.

From my new vantage point asPresident of the NSCIA Board ofDirectors, I’m looking forward to theupcoming SCI Summit and Hall of Fameevents which will be held here in

Washington, D.C. from May 9th throughthe 11th. The SCI Hall of Fame will beheld at the historic Kennedy Center forthe Performing Arts on the evening ofMay 9th. Please check out our notice atwww.spinalcord.org relating to both theSummit and the Hall of Fame.

NSCIA has a rich history, having beenoriginally established by the ParalyzedVeterans of America on July 10, 1948 asthe National Paraplegia Foundation(NPF). In the 1960s, NPF played anactive role with congressional testimonyleading to the establishment of the modelsystem of rehabilitation, where staffswould be fully trained in all aspects ofspinal cord injury. Although there havebeen numerous changes in name, loca-tion, and focus during the past 57 years,one thing has remained constant:NSCIA’s highest possible commitment toadvocacy and promotion of quality-of-lifeissues relating to individuals with SCI.

Over the past several years, NSCIAhas once again reinvented itself with adynamic board of directors and a rapidlygrowing staff of highly-motivated profes-sionals. NSCIA continues to focus intent-ly on the future, providing answers andsolutions to the daunting questionsnewly-injured individuals and familymembers face following SCI.

Individuals with SCI often experienceperiods of deep depression and anger fol-lowing injury. “Why, why did it have tobe me? Is this a dream? When will therebe a cure?” These and many such ques-

tions and attitudes abound, and soNSCIA’s mission will be in front of us forsome time.

I have no doubt that there will be acure for SCI some day. When thatmight occur is another story, but untilthere is a cure that allows individualswith SCI to leave their wheelchairsbehind and once again walk upright,there is a much greater concern. Qualityof life. You might ask, “What can I doto maximize my potential and be allthat I can be?” Quite simply, join withthose of us who refuse to sit, wait, andbe angry and sullen, and instead helpeveryone with spinal cord injury to livefully with their SCI. I know this to bepossible through my own life experi-ence, and this belief rests at the core ofeverything NSCIA does.

I believe in a future that will allow allindividuals, regardless of disability, fullaccess and inclusion into the mainstreamof society. Passage of the Americans withDisabilities Act was a first step, but thereis still a very great deal left to do. Togetherwe have a strong voice and, believe me,we can make a difference in public policy.

So until medical science finds thatmagic bullet that will restore lost func-tion, please support us in our commit-ment to quality of life, and join us here inWashington on May 9-11th to help for-mulate policy for everyone with SCItowards that end. As the late disabilityadvocacy pioneer Justin Dart said, “Lead,follow, or get out of the way!”

from the president

Personal Assistance at WorkThe Issues, Your Rights

By Susan Clair

Y our journey back to work as a wheel-chair user can be fraught with road-blocks such as employer discrimina-

tion, complicated accommodations, andsimply keeping up the inertia needed tosucceed. Knowing how to be an effectiveself-advocate, based on a well thought outroadmap and a clear agenda is the route tosuccess. If you require Personal AssistanceServices (PAS), you face one of the greaterchallenges of the employment path — butcertainly not an insurmountable one.

At Project HIRED, a community ben-efit, not-for-profit organization in SantaClara, CA, we specialize in assisting peo-ple with disabilities to gain competitiveemployment. We have watched manypeople successfully navigate the road backto work — reaching their goals by know-ing their rights and responsibilities underthe law, negotiating for needed accommo-dations, and being confident in achievingtheir goals.

Since every situation is unique, thebest expert is always the person with thedisability, who nonetheless needs to bringcreative thinking to the task. Begin byidentifying your complete set of the mosteffective accommodation requirements,both expensive and inexpensive. The listmight include accessibility in the work-place, an ergonomic workstation, oraccessible technology — as well as PAS.

A valuable resource to help with thisprocess is your local State Department ofRehabilitation (DOR), which providesvocational rehabilitation services, ADAtechnical assistance, and training. YourState DOR will also be closely alignedwith the local Independent Living Center(ILC), which provides information andreferral services. (Find a list of ILCs bystate at www.virtualcil.net/cils.)

According to the Americans withDisabilities Act (ADA) the employer isrequired to provide "reasonable accom-modations," but the accommodationsolution is the choice of the employer. Itmust only be effective, not necessarilywhat would be your first preference.

Roadblocks can arise when communi-cation is not clear. Starting off from anadversarial stance, asserting that "it is myright to have a personal assistant in theworkplace" is more likely to lead to a col-lision of wills rather than the cooperative,mutual relationship you are seeking.Partner with the employer and try tounderstand their point of view. Both sideswant the same solution — a happy andproductive employee.

You will want to educate the employ-

employment


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6 Spring 2005

NSCIA is extremely proud to announce the first inductees of the SCI Hall of Fame. They will be honored in a gala event on May 9, 2005 at the Kennedy Center for the Performing Arts in Washington, D.C., as part of the SCI Summit 2005.

sci hall of fame inductees

Marilyn Hamilton has been athletic and energeticsince childhood, even after becoming paraplegic in a1978 hang gliding accident. Dismayed by theprospect of living her life from a cumbersome 50-pound wheelchair, Marilyn channeled her energiesinto designing a lightweight, adjustable chair with amodular frame, responsive performance, and a funpersonality. The Quickie was born, and immediatelyrevolutionized the wheelchair industry.

Marilyn co-founded Motion Designs in 1979 andbegan manufacturing the Quickie. In 1986, the compa-ny was purchased by Sunrise Medical, where Marilynserves as Vice President of Global Strategic Planning.

Marilyn has touched millions of lives, and herstory has appeared in books, magazines, and national

news programs includ-ing “60 Minutes.” Shewas named CaliforniaBusiness Woman ofthe Year and a mem-ber of the CaliforniaGovernor’s Hall ofFame for People withDisabilities. She alsofounded WOW(Winners on Wheels)— a scouting programfor disabled children.

An award-winning skier and tennis player, Marilynhas inspired a generation of wheelchair athletes. Infact, her story and tennis chair are now touring thecountry in the Smithsonian collection.

Marilyn Hamilton has given the world more thanjust a revolutionary wheelchair. She has given inspira-tion, encouragement, and hope.

From covering the plight of Kurdish refugees in Iraqto advocating for the full inclusion of all people withdisabilities, John Hockenberry has led by example inprint, radio, and television.

He is the recipient of three Peabody Awards andfour Emmy Awards, For over twenty years he hasbeen a sought-after journalist and commentator ona broad spectrum of subjects, including technology,design, architecture, the media, international con-flicts, and has to his credit a huge body of work ondisability issues.

He is, perhaps, best known for his criticallyacclaimed memoir, "Moving Violations — WarZones. "Moving Violations" was popular not only

among people withdisabilities, but withthe general public aswell. It was nominat-ed for the NationalBook Award andHockenberry per-formed a one-manshow in NYC basedon his book.

In all of his pro-fessional endeavors, John has an incredible flair formaking the extraordinary seem reasonable and theinane seem humorous. Having done this with a T-5spinal cord injury would make some people think thiswas some sort of "inspirational guy," but that is not arole or title he wants. He is fiercely independent anddriven and has shown that the most basic instinct isto adapt and thrive in your environment.

Teddy Pendergrass was born on March 26, 1950 inPhiladelphia, PA, and raised by his mother, IdaPendergrass, a God-fearing South Carolina sharecrop-per’s daughter. It was Teddy’s mother who recognizedhis singing ability at only two years of age when hebegan singing in church.

In the fall of 1976, Teddy embarked on his solocareer. He scored big right from the start with “IDon’t Love You Anymore,” “You Can’t Hide fromYourself,” “Close The Door,” “Love TKO,” and“Turn Off The Lights.”

On March 18, 1982 Teddy’s life was changeddramatically when he was paralyzed from the chestdown in an auto accident. He spent the next six

months in the hospitaland in rehab beforereturning home.

Teddy returnedto recording the yearafter his accidentand recorded “LoveLanguage.” The year1985 also markedTeddy’s return to thestage with a stirringappearance at Live

Aid. The following year Teddy’s autobiography enti-tled “Truly Blessed” was published.

Now an outspoken advocate for people withdisabilities, he recently founded the TeddyPendergrass Alliance (TPA), a national organizationthat helps people with spinal cord injury rebuildtheir lives.

ENTREPRENEURMarilyn Hamilton

MEDIAJohn Hockenberry

ENTERTAINMENTTeddy Pendergrass

Dr. Rory Cooper is Distinguished Professor and Chairof the Department of Rehabilitation Science andTechnology at the University of Pittsburgh, where healso serves as Director of the Human EngineeringResearch Laboratories and VA Rehabilitation Research& Development Center of Excellence in Pittsburgh,PA. Dr. Cooper has been selected for numerous awards,including the Paralyzed Veterans of America JohnFarkas Leadership Award (1997, 1999) and the Dion-Johnson Award for Spinal Cord Research (2000).

Dr. Cooper has published widely and is the authorof two books: "Rehabilitation Engineering Applied toMobility and Manipulation,” and “Wheelchair Selectionand Configuration.”

Injured at T7-8 in1980, Dr. Cooperbegan building wheel-chairs as he pursued hisadvanced education inengineering, rising tothe top ranks of theassistive technologyeffort, particularlyrelated to wheelchairmechanics and ergono-mics. Not satisfied

with just doing research, he has always worked hard toensure that advances in science get out to the peoplewho need it most. He initiated the creation of theCenter for Assistive Technology (CAT), a clinic inPittsburgh that provides services directly to individualswith disabilities who need assistive devices for mobility,hearing, speech, and other essential everyday needs.

ASSISTIVE TECHNOLOGYDr. Rory Cooper

Since becoming paralyzed in 1995, renowned actorChristopher Reeve put a human face on spinal cordinjury for the mass public.

In 1999, Reeve became the Chairman of theChristopher Reeve Paralysis Foundation (CRPF), anonprofit organization that supports research todevelop effective treatments and a cure for paralysis.CRPF also makes quality of life grants. In 2002 theChristopher & Dana Reeve Paralysis ResourceCenter was founded in Short Hills, NJ to provide acomprehensive source of information for people liv-ing with paralysis.

Reeve served as Vice Chairman of the NationalOrganization on Disability and on several boards ofdirectors: World T.E.A.M. Sports, which organizes

sporting events for ath-letes with disabilities;TechHealth, assistingin the relationshipbetween patients andtheir insurance com-panies; and LIFE(Leaders in FurtheringEducation) supportingeducation and oppor-tunities for the under-served population.

Since becomingparalyzed, Reeve starred in a remake of the classicHitchcock thriller “Rear Window” for which he wasnominated for a Golden Globe and won the ScreenActors Guild Award for Best Actor in a TelevisionMovie or Miniseries. He also directed several films.

Christopher Reeve died on October 10, 2004 atthe age of 52 years. His wife, Dana Reeve, carries on inhis stead as Chairman of CRPF.

Photo

: Tim

othy G

reen

field-

Sand

ersBENEFACTOR

Christopher Reeve

Duane Martin French was born to Robert and PegFrench on December 19, 1953 in Hastings, Nebraska,one of six brothers and sisters. At age 14, Duane’s C3/4SCI occurred from diving into the Platt River.

After earning bachelor’s and master’s degrees inrehabilitation administration, he started his career as aVocational Rehabilitation Counselor. He then transi-tioned to Independent Living, progressing fromCounselor to Executive Director of Access Alaska, thestate’s largest independent living center.

In 1995, Governor Tony Knowles appointedDuane Director of the Alaska Division of VocationalRehabilitation, where he served for almost eight years.

He now serves asDirector of the Divi-sion of Employ-ment and AssistancePrograms for theWashington StateDepartment of Socialand Health Services,Economic ServicesAdministration.

Duane was astrenuous advocate forpassage of the Air

Carrier Access Act of 1996, Civil Rights RestorationAct, Americans with Disabilities Act, Civil Rights Act of1990, and other critical pieces of federal, state, and locallegislation.

Duane strives to live a soulful life making love thecentral focus of everything he does. Duane believes gov-ernment and its leaders must commit every day toachieving a greater good for all humanity.

CORPORATE/GOVERNMENTEXECUTIVEDuane French

Barry Corbet, perhaps best known as the editor ofNew Mobility magazine from 1991 to 2000, was alsoan outdoorsman, a filmmaker, and a widely publishedauthor who chronicled the disability experience.

In 1963 Corbet, a member of the first Americanteam to ascend Mount Everest’s west ridge, yielded hisplace on the summit to his fellow mountaineers, fig-uring he’d return some day. But he never made it toEverest’s summit, after a helicopter crashed nearAspen, Colorado in 1968 from which he was filming.The crash caused a T12/L1 spinal cord injury.

Corbet shot three groundbreaking films about

spinal cord injury:Changes, about com-ing to terms withSCI, Outside, aboutliving an active life,and Survivors, aboutaging with a disabili-ty. In 1980 he wroteOptions: Spinal CordInjury and theFuture, now in its10th printing.

That path led to what he sometimes referred toas a “second life,” one very different from his first, butequally fulfilling. Corbet said. “Real life doesn’t give adamn about the particulars of how you live it. It justkeeps flowing and happening and creating anddestroying — and you get the whole ball of wax, withor without a disability.”

DISABILITY AWARENESS/ACTIVISMBarry Corbet

Tom Harkin is a product of small town Iowa who hasnot forgotten his origins. He was born November 19,1939 to a coal miner father and a Slovenian immi-grant mother who passed away when Tom was tenyears old. He earned his degree at Iowa StateUniversity in government and economics.

Tom Harkin has been a consistent supporter ofthe rights of people with disabilities. Tom's brother,Frank, was deaf since childhood, so Tom knows first-hand the challenges facing Americans with disabili-ties. He was a principle author of the 1990 Americanswith Disabilities Act, the landmark legislation thatprotects the civil rights of more than 54 millionAmericans with physical and mental disabilities. He's

also led efforts toimprove educationalopportunities for chil-dren with disabilities.

Senator Harkinplayed a major rolewith NSCIA in bring-ing Ma’rwa Ahteemito the United Statesfor medical care.Ma’rwa is a 13-year-

old Iraqi child who sustained a spinal cord injuryfrom an errant mortar attack.

He is also a longtime leader in the fight toimprove healthcare. As ranking Democrat on theSenate panel that funds most health programs, he hasfought to preserve and protect Social Security andMedicare and co-sponsors the Medicaid Reform bill,MiCASSA.

LEGISLATIVEThe Honorable Tom Harkin

7Spring 2005

Dr. Wise Young is founding director of the W .M. KeckCenter for Collaborative Neuroscience, Chair of theDepartment of Cell Biology and Neuroscience and aprofessor at Rutgers University in New Jersey. In 1984,he was appointed Director of Neurosurgery Research.In 1997, as part of Rutgers' commitment to the future,Dr. Young was recruited to establish and direct a world-class center for collaborative neuroscience.

He was a member of the team that discoveredand established high-dose methylprednisolone (MP)as the first effective therapy for acute spinal cordinjuries. This team also played a major role in AndyBlight's signal work on 4-aminopyridine (4-AP),which shows significant promise for increasing nerve

conductivity.Dr. Young devel-

oped the first standard-ized rat spinal cordinjury model usedworldwide for testingtherapies, formed thefirst consortium fund-ed by the NationalInstitutes of Health(NIH) to test promis-ing therapies, and

helped establish several widely accepted clinical out-come measures in spinal cord injury research.

Founder and once editor-in-chief of the Journalof Neurotrauma, Dr. Young serves or has served onadvisory committees for the NIH, the NationalAcademy of Sciences, and NICHD, and for variousspinal cord injury organizations.

RESEARCHWise Young, Ph.D., MD

By Stephanie Thomas,National ADAPT Organizer

G etting people with SCI and other dis-abilities into their communities —and keeping them living there —

involves two critical issues; attendant serv-ices (also know as personal assistance orPAS) and housing. Education, employ-ment, transportation, relationships, andother community living factors that con-tribute to quality of life cannot beaddressed until an individual has appropri-ate access to both of these critical — andachievable — resources.

For those who need help with daily liv-ing tasks such as bathing, getting in and outof bed, toileting, etc., attendant services arethe key to living independently. Yet whengovernment pays for those services, inwhole or in part, they are not made avail-able to people without housing. The twoare bureaucratically tied together

Funding for these vital services must beour first priority, especially in view ofrecent and proposed federal and statespending reductions. Across the states youwill hear of long waiting lists, especially forprograms with greater consumer controland an enriched package of services.Medicaid, the largest funder of attendantservices, is under heavy fire from a conser-vative Congress and administration seekingto reduce domestic spending. These servic-es are vital and must be retained. Too manyof us are in nursing homes or other institu-tions for lack of other options.

67% of funds go to nursing homes andother institutions while 33% go to commu-nity-based services. By focusing our advo-cacy efforts on a shift away from the insti-tutional bias in long term care funding, wecan promote better use of the moneyalready being spent. In general, communi-ty-based services have been found to costtwo-thirds the amount of the institutionalequivalent services.

The Money Follows the Person pro-gram currently proposed in the U.S. Senateis the purest means to address this problem.Under this approach, the money that paysfor an institutionalized person’s serviceswould be moved from the institutionalbudget to the community budget. Statesare able to do this right now, yet manyignore this option. In addition, a proposedfederal bill would provide that, in certainstates, the costs of a person moving into the

community would be paid fully with feder-al dollars.

States rights is currently the driving forcein government philosophy, making it neces-sary to fight for these issues at the state as wellas federal level. More control is being pushedonto the states while they are simultaneouslybeing denied federal resources. Advocatesneed to know what their state is doing, andwhat it could be doing.

In the area of housing there are threemain issues: affordability, accessibility, andintegration. While not all people with SCIare poor, with a 75% unemployment rate,much higher medical costs, and muchmore limited options on how to cover thesecosts, many in the disability communityfall into the lowest income levels.Unfortunately, the trend in housing istoward a higher level of income. The hous-ing that was developed a generation agowith commitments to provide units forthose with very low incomes is aging out ofthese commitments. Little is being done toreplace these units. Rental assistance fortenants is in extreme demand while afford-able, accessible housing stock has neverbegun to meet that demand.

Accessibility is vital. Housing that peo-ple can’t get in and out of on their own iswidespread, and cancels the benefits of anygains in public accessibility, transportation,or employment. Enforcement of existinglaws like Section 504 of the 1973Rehabilitation Act and the Fair HousingAct Amendments would help address thisconcern. Some government bureaucratsand even advocates look the other waywhile more barriers are constructed.

Visitability, or very basic access to singlefamily housing, is another idea that isspreading across the nation. With this basiclevel of access, a home can more easily bemodified for an individual’s use.

Often the few affordable housing devel-opments being built use funds for disabili-ty-only housing, failing the imperative ofintegration and inclusion. It does not takemuch imagination to see this as just anoth-er ghetto not much different from the insti-tutional model.

We are under fire and likely to lose hard-won gains. We must focus on the basics andbe savvy. However, with standards and pro-grams back on the federal and state tables, ifwe play our cards right we can grab theopportunity to slip through the barriers andmake real strides toward our goals of equali-ty and community living.

Community Living

sci hall of fame inductees

Randy Snow is an achiever, all the more since he hasused a wheelchair as a T12 SCI paraplegic. At the ageof sixteen he was working on a farm when a 1000-pound bale of hay crushed him. Initially discouragedwith his new life, Randy soon realized that changewas less painful than staying the same. Eventually, henot only accepted his life, he embraced it, discoveringnew options and opportunities for achievement.

And achieve he did. A serious athlete prior to hisinjury, Randy has since won ten U.S. Open tennis sin-gles titles, and earned a silver medal in an exhibitionrace at the Los Angeles Summer Olympics. He is theonly athlete in history to compete in three different

summer ParalympicGames and earnmedals in three differ-ent sports. Because ofhis pioneering achieve-ments, Randy receivedthe Paralympic torchfrom President Clintonto launch the AtlantaParalympic Games in1996. And in 2004,he was the firstParalympian inducted

into the U.S. Olympic Hall of Fame.Today, Randy is an award-winning author, a

Fortune 500 speaker, and the president of NOXQs(No Excuse), Inc., through which he inspires peopleto respond to life changes by discovering new optionsand opportunities.

sci summit 2005 breakout topics

SPORTSRandy Snow

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NSCIA Member Services901 East Willetta, Suite 2306

Phoenix, AZ 85006 Phone (602) 239-5929

Toll free (877) 778-6588Fax (602) 239-6268

e-mail: [email protected] 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, theirrelated service providers, policy makers, organizations, hos-pitals and others interested in the issues affecting the spinalcord injury community. Our Mission is to enable peoplewith spinal cord injuries, diseases and dysfunction toachieve their highest level of independence, health and per-sonal fulfillment by providing resources, services and peersupport.

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In Washington, D.C. from May 9–11, NSCIA will host the first Summit onSCI, gathering over 200 key players in the spinal cord injury community.With its theme, "Facing Issues, Creating Solutions," the Summit wil laddress five main topics in concurrent breakout sessions.

Here are brief articles on each — by no means all-inclusive — offered asan initial offering to "prime the pump" for the l ively and productive inter-change to take place in D.C. in May.

8 Spring 2005

By Thilo Kroll, Ph.D.

H aving a spinal cord injury (SCI) entailsa unique set of healthcare issues, yetpeople with SCI are as at risk as the

general population for the full array of pos-sible diseases and conditions, includingcancer, cardiovascular disease, diabetes, orosteoporosis. There is even mounting evi-dence that people with SCI may be at ahigher risk for developing bladder cancer orcardiovascular disease — preventable ortreatable secondary conditions. There arewidespread prevention and health educa-tion campaigns for the general population,and screening guidelines have been drawnup for the practitioner community, yet lit-tle attention has been given to health pro-motion for people with disabilities.

The risk factors are well known, amongthem; being overweight, lack of exercise,smoking, and alcohol consumption. Datafrom the National Health Interview Survey(NHIS) show that people with activity lim-itations, including people with SCI, aremore likely to report these factors than peo-

ple without. If we look at only these threeareas more closely, we find substantial gapsin the area of health education and promo-tion. Few well-documented and accessibleprograms exist that provide people withSCI the opportunity to tackle weight prob-lems or exercise. Most gyms in the U.S.lack accessible equipment or knowledge-able staff to assist people with SCI withworkouts. Moreover, researchers have beenslow to understand the need for exerciseguidelines that address the unique needs ofpeople with para- or quadriplegia.

Alcohol abuse is a widely under-researched area. Over time, excessive drink-ing has the same detrimental health effectson a person with SCI as we observe in thegeneral population. Yet many people withspinal cord injury regularly drink alcohol.This may be easily dismissed as a misguid-ed attempt to deal with chronic pain orloneliness, but it more accurately reflects alack of awareness in the practitioner andresearch communities.

Accessibility of routine preventive serv-ices such as mammograms, prostate exams,and bone mineral density scans is oftenlimited. Even if the medical office is acces-sible, exam tables, scales, and mammogra-phy machines usually are not, nor wouldone find adequate support for safe and

appropriate transfers from wheelchairs. Aslong as these barriers are not addressed,people with SCI cannot benefit fromhealth-preserving practices widely availableto those without mobility impairments.

People are more inclined to makechanges in their lives if activities like weightloss and exercise programs are fun and grati-fying. The role of humor in achieving theseheath promotion objectives is largely under-appreciated. Health education and promo-tion activities focused only on change inknowledge, beliefs, intentions, and behaviorsare missing out on a key point.

While the advice columns on sexualityfill nearly every magazine and sexuality is dis-played ever more frankly on TV and theInternet, it remains a taboo topic where peo-ple with disabilities are concerned. Sexualityis often the first topic removed from patienteducation programs under the pressure ofever-shorter inpatient rehabilitation stays.Women are offered insufficient informationabout birth control or pregnancy specific totheir SCI. After discharge from rehabilita-tion, many individuals are largely left aloneto find answers to their questions.

The life expectancy of people with SCItoday is higher than ever before, approachingthat of the general population. Living a longand healthy life does not only mean staving

off medical complications and secondaryconditions, it means actively taking steps tolive well with an SCI. This encompassesphysical, emotional, and social health.

People with SCI need access to activitiesaccording to their individual interests just asanyone else does. For them, health promo-tion demands an enabling environmentspecifically designed for their needs.Programs should be developed in close col-laboration with people with SCI so thatinterventions are as feasible and acceptable aspossible. Without the dismantling of bothphysical and attitudinal barriers, full socialparticipation is not possible. Researchersneed to provide the basis for screening andhealth behavior recommendations, so thatscientifically demonstrated health promotionmeasures — many of which are easily imple-mented and affordable — can achieve theirgreat potential to reduce preventable medicalchallenges and extend independence for peo-ple with SCI.

Thilo Kroll Ph.D. is a senior research associateat the National Rehabilitation Hospital Centerfor Health & Disability Research inWashington, D.C. His research focuses on accessto health care, health promotion, and commu-nity integration issues for people with SCI andphysical disabilities.

Health Promotion


By Gary Ulicny

A s goes healthcare in general, so goesmedical rehabilitation. So it followsthat the field of medical rehabilitation

is facing an increasing number of peoplewith no insurance or limited benefits,which has put huge demands on medicalrehabilitation facilities.

Due to the severity of their disabilitiesand the paucity of return-to-work resources,many people with spinal cord injuries even-tually become Medicaid-eligible. In manystates Medicaid does not provide specificbenefits for rehabilitation, leaving a grow-ing number of people without the servicesthat would allow them to return to an inde-pendent lifestyle. Add to this the growingnumber of undocumented immigrantsinjured in this country, and it’s clear thatthe future of our ability to provide qualityspinal cord rehabilitation to all who need itlooks bleak.

Managed care has imposed shorterlengths of stay. Providers have been forcedto find new and unique ways to serve indi-viduals, including the expansion of dayprograms and outpatient services. Still,many people are returning to their com-munities without fully realizing theirrehab potential. These communities oftenhave very little to offer in terms of supportservices or expertise in SCI issues. Theresult: a huge increase in secondary com-plications. A recent study by Jones &Evans, 1998, published in Topics in Spinal

Cord Injury Rehabilitation found a clearcorrelation between lengths of stay andthe increase in pressure ulcers amongstmodel systems consumers.

As long as our healthcare system isbased on a managed reimbursementmodel, there is little incentive for insurersto provide ongoing support that preventscostly secondary complications. Somestates have enacted legislation to create“trust funds” (institutionally rather thanindividually controlled), funded by a sur-charge to speeding and DWI/DUI (driv-ing while intoxicated or under the influ-ence) tickets. These funds are intended toprovide services not covered by privateinsurance, Medicare, or Medicaid. Yet insome states the money is administered bya state or contracted agency, many of thedollars are going to administration. Also,some states limit the services or goods thatcan be paid for, while in effect lettingother agencies off the hook for servicesthey should be providing. In other states,though, the legislation actually limits howmuch can be spent on administration andprovides for a great deal of spending flexi-bility. The role of public health servicesand independent living centers can play inthis will need continuing assessment.

There are also clearly gaps in quality ofcare. Many insurers refuse to pay forpatients to travel to regional centers ofexcellence. In addition, there is a huge dis-crepancy in outcomes amongst model sys-tems programs. Many newly injured indi-viduals are being forced to receive rehabili-tation from organizations that lack expert-ise in the treatment of spinal cord injury.

All is not gloom and doom. Research

in the areas of technology, cell implanta-tion, and activity-based therapies isexploring potential advances that couldimprove the functional ability of personswith spinal cord injury. But while theseare still in the research phase theseadvances should not be hailed as revolu-tionary when in fact they have yet to beadequately shown to be scientificallysound. It will be extremely important inthe next decade to develop a best practicemethodology that looks at evidence-basedtherapies for improving quality of life forpeople with SCI.

On the horizon are new medical insur-ance programs being touted as consumer-directed. These products typically havehigh deductibles and high-level cata-strophic coverage. While this may seemlike an excellent way to deal with cata-strophic injury, the jury is still out onwhether those products will provide foradequate rehabilitation care.

It is an exciting time in the field ofmedical rehabilitation as we begin toexplore new technologies to improve thefunctional rehabilitation of people withspinal cord injury. It is critically importantthat resources be made available to allowthis to happen. Society in general musttake the long-term view that urges devel-opment of programs to provide servicesthat will not only pay off for people withdisabilities, but are also cost effective.

Gary Ulicny is the President and CEO of theShepherd Center in Atlanta, GA, and anadvocate for the full inclusion into the com-munity of people with disabilities.

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9Spring 2005

By Maria Amador

Research on multiple fronts is currentlyunderway to address both “care” and“cure” of persons with SCI. Increasing

numbers of laboratories located worldwidenow pursue what 20 years ago was consid-ered unthinkable — the repair of neuraltracts and full restoration of body functionsin those with paralysis.

SCI regeneration research is on a system-atic advance toward clinical trials for testingrepair of spinal cord functions. New treat-ment approaches are needed to rescue neu-rons and prevent axonal damage, replace dys-functional neurons and promote axon regen-eration, and guide the regrowth and remyeli-nation of axons. Rehabilitation strategies willalso be needed to promote recovery of func-tion. Only a comprehensive approach —drawing on expertise in the fields of cell biol-ogy, electrophysiology, pharmacology, molec-ular biology, transplantation, surgical inter-ventions, regeneration, and rehabilitation —will comprise an effective recovery strategy.Several reparative approaches with potentialfor translation to clinical trials are emerging.

These include: neuroprotective strate-

gies to curtail the cascading damage to thespinal cord that occurs following injury;auto-transplantation methods using adulthuman cells (Schwann cells, olfactoryensheathing glia, and oligodendrocytes);embryonic, fetal, and adult (stem) cells andtissues for transplantation; and molecularand pharmacological approaches to coun-teract the inhibitory spinal cord environ-ment and to guide axon growth andsynapse formation. The challenge will be totranslate these emerging treatment strate-gies into practical use through well-designed and systematic clinical trials.

New rehabilitation-based techniques arebeing designed and tested to follow up onpreserved or repaired spinal circuitry, and toimprove muscle strength and function.While these are not curative, therapies suchas body weight support gait training, electri-cal stimulation assisted-walking, and exer-cise programs have been shown to improvemuscle strength, cardiovascular health, andin some cases their ability to move. Recentresearch suggests that intense activity-basedtherapies may help re-establish partialmovement in some people with SCI.Meanwhile, other important researchaddresses quality of life issues such as pain,spasticity, aging, sexual function, fertility,and bowel and bladder function.

From the broad scope of ongoingresearch, promising new treatments may

emerge but their implementation can oftenbe a challenge. Treatments are costly, and cli-nicians with specialty training are in limitedsupply. Examples of therapies that have beendeveloped and researched but that have notexperienced widespread use are FES (func-tional electrical stimulation), lower extremitycycle ergometry, FES assisted walking, handneuroprotheses, and bladder stimulationdevices. Whether insurance agencies willapprove reimbursement for such care to anarrow segment of persons with SCI andwhether biotechnology companies can sur-vive economically with such small con-stituencies of users remains to be seen.

In the attempt to bring therapies to clin-ical trial, researchers consider what treat-ment strategies should be taken to clinicaltrial, how the protocols should be designed,when clinical trials should commence, andwho would be included in the first trials forchronic injury. Researchers also must con-sider the potential risks in deciding who is tobe included in a specific protocol. Who hasthe most to gain from a treatment or theleast to lose? To their credit, scientists havenow opened pathways of communication toformally address these issues. In February of2004 The International Campaign for Curesof spinal cord injury Paralysis (ICCP) sup-ported and funded the first internationalclinical trials workshop on SCI inVancouver, British Columbia where a work-

ing panel was established to develop guide-lines for SCI clinical trials.

Since the early 1980s there has beengrowing interest by seasoned and younginvestigators alike to uncover the mysteriesof healing in the spinal cord. The NationalInstitute of Neurological Disorders andStroke (NINDS), The Miami Project toCure Paralysis, the Christopher ReeveParalysis Foundation (CRPF), and othershave invested in the training of young sci-entists and now thousands of researchersworldwide have dedicated their careers toSCI research.

While spinal cord repair remains anextraordinary challenge, a worldwide com-munity believes that successful treatmentstrategies can be found. While the ultimategoal of finding a cure has yet to be met, thesehigh caliber efforts deserve accolades andcontinued attention and support from scien-tists, governmental entities, consumer-basedorganizations, and individuals directlyimpacted by SCI.

Maria Amador, BSN, CRRN is the Director ofEducation for The Miami Project to CureParalysis at the University of Miami MillerSchool of Medicine. Her office provides infor-mation about the Miami Project’s mission andresearch programs to individuals with SCI,their families, healthcare professionals, and sci-entific visitors.

Research


By Jane Berliss-Vincent

While medical technology focuses ondirect modification of the body, adap-tive technology (also known as assistive

technology or AT) is any product — high,low, or no tech — that helps with modifica-tion or negotiation of the environment for aperson with a disability. Prosthetic hands, forexample, are a medical technology, whilespoons with easy-to-grip handles are AT.

Although this distinction is not alwaysprecise, the implications can be significant.Funding from sources such as Medicare maybe available for "medically necessary" tech-nology, but not for AT. A consumer may bemore interested in products that improveenvironmental shortcomings over modifica-tions that extend their physical capabilities.

AT that was initially developed to meetthe needs of people with SCI or other dis-abilities sometimes find an audience withthe broader public. Reachers with grippingends are increasingly being marketed to non-disabled individuals, for example. There isnow a large body of AT that can be acquiredat mainstream retail stores — some Wal-Marts even have an AT section.

Mainstream products can also serve ATpurposes, either out of the box or with mod-ifications. One example is Roomba, a smallrobot whose sole function is vacuumingfloors. Roomba is available for under $200,or about the price of a traditional vacuumcleaner, and is being marketed to a variety ofconsumers — including, without fanfare,wheelchair users.

This trend should help counter the stig-ma of AT as a body of specialized productsdesigned only for people with disabilities,ideally resulting in greater product availabili-ty and reduced prices for consumers.

It is less clear that product quality willautomatically improve. In 1993, when voicerecognition technology for computer inputwas still primitive, one researcher wrote thatusers with disabilities "have been shown totolerate poor recognizer performance as itmay provide their only means of completinga task independently."

User satisfaction standards for AT shouldbe no different than for other products.Commitment to performance quality willnaturally result in better AT — and increasethe likelihood that, where appropriate, prod-ucts will be adopted by mainstream users.Consumers with SCI must insist that ATproducts meet their standards of satisfaction.

The stereotype of AT is that it tends to becomplex, expensive, and highly specialized.For example, media reports on AT for peoplewith SCI often highlight eyegaze systems,which allow a user to move a cursor on acomputer screen via their eye movement. Intruth, this technology is relevant to only asmall minority of people with SCI who havesubstantial upper extremity impairment.

Without question, specialized or high-end AT products should be readily availablefor individuals whose capabilities are bestserved by them. However, there is also anongoing need to find and disseminate infor-mation about creative functions for existinglower-end technologies.

Of course, AT quality is irrelevant if theproducts are unable to reach consumers. Avariety of potential bottlenecks are in the way:• Product developers who estimate a small

market share are naturally reluctant to cre-ate products or follow through on proto-types. End users can help by demonstrat-ing the benefits of AT features to main-stream users to help generate moredemand.

• Federal funding for the AssistiveTechnology Act that was reauthorized in2004 has been eliminated in the 2006budget. This Act funds centers that pro-vide objective information about AT. Atthe same time, information distributedby the government's "Buy Accessible"database contains highly subjective state-ments written by product and servicevendors. This "information gap" needsto be filled in.

• While there are a variety of initiativesaimed at making AT available to children,this is far less true for adults and seniors.Advocates need to direct their energies topromoting and expanding the reach of thefederal Alternative Funding Program,Departments of Rehabilitation, and insur-ance providers.

The successful development and distribu-tion of AT is a win-win-win situation. Arange of vendors who are committed todeveloping quality AT are seeing sufficientsales volume to thrive. Funding sources areable to demonstrate that they are providingthe right resources to the right individuals.Most importantly, AT users are significantlyaided in their ability to work, study, play, andlive independently.

Jane Berliss-Vincent is the Director ofAdult/Senior Services at the Center forAccessible Technology in Berkeley, CA.www.cforat.org.

Technology

THE NSCIA RESOURCE CENTERTHE NSCIA RESOURCE CENTER

We provide customized, personalized telephone supportfor any question you have regarding spinal cord injury.

Our staff — which includes an SCI registered nurse —draws from a wide range of information resources, and isable to serve Spanish-speaking callers.

We will gladly provide written materials to those withoutInternet access.

We can help you with:Seeking local resources

NSCIA chapter and support group locationsNon-NSCIA sources of support

Locating rehabilitation facilitiesFunding information and insurance guidelines

Relevant web sites

Families with new injuries are given top priority.

Toll free 800.962.9629Weekdays 8:30 a.m. to 5:00 p.m.

Eastern [email protected] español

10 Spring 2005

11Spring 2005

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The ERGYS 2 for home and clinical use is a prescribed device for C- and T-level SCI and other neurological conditions.® ©2004 Therapeutic Alliances Inc. ERGYS and “The Power of Your Muscles” are trademarks of Therapeutic Alliances Inc.

By Janine Bertram Kemp,Associate Editor, SCI Life

L isa Thorson embodies a creative blendof jazz singer, activist, and professor.She was in her senior year of profes-

sional training at Boston Conservatory in1979 when, while doing acrobatics, sheflipped the wrong way and injured herspinal cord at the C5-6 level.

She spent the next seven months at arehabilitation hospital. “Because of progressthe independent living movement has made,health care systems have improved a great dealsince 1979,” Thorson says. “Now someonewith SCI would never have to spend sevenmonths in a hospital.”

No moss grew under Thorson. Whilein rehab and after release, she continuedher studies. She graduated from BostonConservatory with a Bachelor of Fine Artsin May of 1980. Wanting a deeper theoret-ical understanding of music, she took amasters degree in Jazz Vocal Performancefrom the New England Conservatory of

Music. Her career began in theater andevolved into jazz performance.

“Initially in my career, people were sur-prised that I was a wheelchair user. Thepress wanted to 'talk' about the injury, dis-ability, and access, ad nauseum,” statesThorson. “I stopped answering the ques-tions. They’re irrelevant. I think my situa-tion is unusual but I don't worry about it.My job is to produce great music, enter-tain, and share with my audience,” sheconcludes, “not to make them feel com-fortable with the fact that I'm a chair user.”

Thorson’s voice is pure, rich, and sassy.She has that true timbre that results fromclassical training yet infuses her art with allthe emotions evoked by her skilled inter-pretation of a piece. Lisa has since pro-duced five recordings as a leader.

In 2004, she composed and produced“Jazz Art Signs,” an ambitious perform-ance where arts and disability meet. It is atotal access experience that featuresThorson’s vocalizations backed by herquartet, and integrated with sign languageinterpretation and “screened visualdescriptors.” It also features Boston painterNancy Ostrovsky, who creates a work oncanvas concurrent with the music.

“Jazz Art Signs is cutting edge in itsmulti-sensory approach,” states JaneForde, Artistic Director of The Music Hallin Portsmouth, N.H. “It is an amazingexperience for the audience.”

Lisa has that relatively rare understand-

ing that people with SCI and those withother disabilities share common interests.While some advocate only for programsand services for those with their given dis-ability, Thorson pursues her advocacyalong an inclusive, cross-disability model.In addition to her careers as a musician andprofessor, she has consistently advocatedfor access for artists with all disabilities.

Thorson knows that success in artisticfields involves more than training and tal-ent. In lectures she stresses the need forartists to be highly disciplined with anorganized marketing plan. “Turning obsta-cles into assets is a way of life for peoplewith disabilities, and that’s what you needto succeed as an artist,” Thorson asserts.

“People with disabilities are used toforging a new path every day; when theramp is blocked, there is no interpreter, noraised signage, no benefits, no housing, notransportation,” Lisa says, “or just an igno-rant attitude that says ‘stay away’. If you area young artist with a disability, look at yourassets,” she advises. “You already have thestrength to fight back, to advocate, and tofind a different path, because as people withdisabilities we improvise every day. That iscreativity and tenacity rolled into one.”

Lisa has achieved success in the arts pri-marily for arts sake. “Our mission is to sharemusicmaking that has heart, soul, spirit,humor, and originality,” she says. “We wantour listeners to be active participants in thelive music experience; to breath, sigh, laugh,

and tap their feet as we make conversationthrough adventurous music." Those luckyenough to catch a performance by Thorsonand her group can say with enthusiasm,“Mission accomplished.”

Lisa Thorson performs May 9th at the John F.Kennedy Center of the Performing Arts priorto the SCI Hall of Fame. To book Lisa Thorsonor order her music, visit www.lisathorson.com

15Spring 2005

Lisa Thorson LivesHer Art

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the arts

Lisa Thorson

16 Spring 2005

That’s why Kessler is here.

At Kessler Institute for Rehabilitation, we have helped

individuals with spinal cord injuries meet complex physical,

emotional and social challenges for more than 55 years.

By combining focused medical care with advanced

technologies and a powerful team approach, Kessler has

earned an international reputation for treatment and

research. We’re a designated model system for spinal

cord injury — one of only 16 in the nation — and are

consistently ranked one of U.S.News & World Report’s top

rehabilitation hospitals.

Experience, innovation, compassion. That’s the Kessler

difference, and it can make all the difference in your life.

For a free CD on Spinal Cord Injury Rehabilitation or to learn more about our specialized programs, contact Sandra DeLeon at (973) 243-6927 or [email protected].

1 1 9 9 P L E A S A N T VA L L E Y W AY, W E S T O R A N G E N J w w w. k e s s l e r- r e h a b . c o m 1 - 8 8 8 - K E S S L E R

You never know what hand

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Defining medical rehabilitation

The Center for Spinal Cord Injury

Rehabilitation at

17Spring 2005

By Len Zandrow,NSCIA General Counsel

Abattle for justice is being waged in thiscountry which could potentially havemonumental impact on the SCI com-

munity. Not since the enactment of theAmericans with Disabilities Act in July, 1990have the stakes been higher.

President George W. Bush has made so-called “tort reform” a priority. He is joined byinsurers, corporations, and healthcare profes-sionals who want to reduce consumer rightsand cap jury awards for non-economic dam-ages — or “pain and suffering.” This spring,the U. S. Congress and over one dozen statesare weighing various proposals to limit juryverdicts, curtail class action lawsuits, and par-tially immunize the asbestos and pharmaceu-tical industries.

Such tort reforms would disproportion-ately harm the approximately 11,000Americans who acquire a spinal cord injuryeach year, preventing them from receivingfull compensation for their injuries. Thosewho cause life-altering injuries would be lessaccountable in court for their mistakes, suchas those responsible for auto accidents, theleading cause of SCI.

The evidence casts doubt on the necessi-ty for such dramatic changes. There is no realtort litigation “explosion.” Data from theNational Center for State Courts has shownthat tort filings in the U. S. actually declinedby nearly ten percent from 1993 to 2002.Disputes between businesses actually com-prise the single largest category of lawsuitsfiled in the Federal courts — businesses suefour times more often than individuals. Thisis where the true problem lies.

Neither is there evidence of inflated orexcessive jury awards. According to theBureau of Justice Statistics, verdicts droppedmore than 56% between 1992 and 2001.The median amount of compensation in all

tort cases, adjusted for inflation, is only$28,000.

Increases in medical malpractice premi-ums are not caused by tort verdicts.Malpractice suits have increased largelybecause the number of U. S. doctors hasdoubled (from 366,425 to 750,000) between1975 and 2001. Premiums have alsoincreased because of unsound investmentpractices by insurers. Approximately 80% ofall medical malpractice premiums have beeninvested in the bond market. A GeneralAccounting Office report in October, 2003concluded that these investments suffered ahuge hit from 1998 to 2001 when interestrates on bonds fell, leading to proportionalincreases in premiums.

Laws capping damages do not reducedoctors’ insurance premiums. The Center forJustice and Democracy found no correlationbetween tort reform and insurance rateswhen they compared states that have enactedtort restrictions and those that have not.After limits on insurance company payoutswere enacted in Ohio, Florida, Texas,Oklahoma, and Nevada in the past twoyears, rates went up, not down. On average,malpractice premiums were no higher in the27 states that have no limitations on mal-practice damages, than in the 23 states thatdo have such limits.

The healthcare and insurance industriesare generally vibrant and profitable. WeisRatings indicates that HMOs earned $10.2billion in 2003, an 86 percent increasefrom 2002, nearly doubling their net prof-its. The property/casualty insurance indus-try was expected to earn profits of $36 bil-lion in 2004, an all-time record.Malpractice costs account for less than twopercent of healthcare spending — privateor governmental.

Negligent healthcare professionals aremore responsible for high jury awards thanlawyers. In Massachusetts, one-fourth ofone percent of all the doctors (98 of the37,369 doctors) accounted for more than13 percent of all the malpractice payments,$134 million of the $1 billion in total pay-ments. While medical malpractice is perva-sive and the third leading cause of death inthe U. S., a Harvard Medical Practice Studyindicates that only 2% of patients injured

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Abilities Expo is sponsoredby the National Spinal CordInjury Association. Stop byand visit the booth at anyof the Abilities Expos.

ADMIT ONE

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Southern CaliforniaJune 3-5, 2005Anaheim, CA

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Produced andManaged by:

SCI

Tort Reform and SCI

callahan

legal

By Barbara Jackins

M any persons affected by SCI are thebeneficiaries of special needs trusts.These trusts are managed by trustees

who carry a number of important responsi-bilities. Here are some key dos and don’tsfor trustees.

Do keep accurate and detailed financialrecords of the trust activities. A trustee canbe exposed to risk because of inadequaterecords. Bank statements, cancelled checks,check registers, brokerage statements,invoices, and receipts should all be organ-ized chronologically and kept with the trustrecords. Some trustees keep notes on whythey felt a large disbursement (such as avacation for the beneficiary and staff orfriends) was a good idea. In short, thereshould be a paper trail for every dollar thatcomes in and goes out of the trust account.

Don’t disclose private information aboutthe trust unless there is a legitimate reason todo so. Case managers, social workers, and themerely curious may want to know how muchmoney there is in the trust. In most cases, it’snone of their business, and you owe it to thebeneficiary to protect his or her privacy. Ofcourse, you must disclose information aboutthe trust to any interested governmentagency such as the Social Security

Administration, the state Medicaid agency,or the local housing authority.

Do invest the trust assets so that theyearn a reasonable rate of return. Don’t letthem sit in a non-interest bearing account.Many states have adopted the UniformPrudent Investor Act that governs invest-ments by trustees. This law requires thetrustee to diversify the assets in a mix ofcash, stocks, bonds, and mutual funds,unless there is a valid reason not to do so.For example, some trusts direct the trusteeto make only “safe” investments like CDs,bonds, and money market funds. A knowl-edgeable investment advisor can explainthe trustee’s duties in this critical area.

Do become familiar with any and allpublic benefit programs that assist the ben-eficiary, such as SSI, SSDI, Medicaid, andSection 8 housing. Understand how anydistributions from the trust can affect pro-gram benefits. For example, in most states,any distributions for food or shelter cancause SSI to be reduced up to $213 permonth (in 2005).

Don’t borrow money from the trust. Infact, the trustee should avoid having anypersonal financial dealings with the trust.These transactions, which are called self-dealing, are widely considered to be abreach of the trustee’s fiduciary duty. Some

Special Needs TrustsManaging Money for Disability



18 Spring 2005

CALIFORNIALeon S. Peter’s Rehabilitation CenterCommunity Medical Center FresnoP.O. Box 1232, Fresno, CA 93715Telephone: 559.459.6000 ext. 5783E-mail: [email protected] Contact:Ray Greenberg

CALIFORNIASt. Joseph’s General HospitalSamuel Burre Conference Room2200 Harrison Ave. Eureka, CA 95501Telephone: 707.445.8404E-mail: [email protected]: Richard Sherry

FLORIDAFlorida Rehabilitation and Sports Medicine5165 Adanson St., Orlando, FL 32804Telephone: 407.823.2967Contact: Robin KohnTelephone: 407.623.1070Contact: Carl Miller

FLORIDAHEALTHSOUTHSea Pines Rehabilitation Hospital101 East Florida Ave., Melbourne, FL 32901Telephone: 321.984.4600Email: [email protected] Contact: Ellen Lyons-Olski

FLORIDAHEALTHSOUTHCapital Rehabilitation Hospital1675 Riggins Rd., Tallahassee, FL 32308-5315Telephone: 850.656.4800Contact: JoAnna Rodgers-Green

FLORIDATampa Bay Area Support GroupHealthsouth90 Clearwater Largo Rd., Largo, FL 33770Telephone: 800.995.8544 Telephone: 813.844.4286Fax: 813.844.4322Website: www.flspinalcord.usE-mail: [email protected] Telephone: 727.821.9131Contact: Barry Marshall

GEORGIAColumbus SCI Support GroupTelephone: 706.322.9039E-mail: [email protected] Contact: Ramona Cost

GEORGIAHEALTHSOUTH Central GA Rehab Hospital3351 Northside Dr., Macon, GA 31210Telephone: 800.491.3550, ext. 643 Telephone: 478.471.3500, ext. 643 Fax: 478.477.6223Contact: Kathy Combs

MARYLANDKernan Hospital SCI Support Group2200 Kernan Dr., Baltimore, MD 21207Telephone: 410.448.6307 Website: clubs.yahoo.com/clubs/kernanscisupportgroupE-mail: [email protected] Contact: Lisa Wilson

MISSISSIPPIMagnolia Coast SCI Support Group12226 Oaklawn Rd., Biloxi, MS 39532Telephone: 800.721.7255 Website: www.lifeofms.com Email: [email protected]: Michelle Bahret

MISSOURISouthwest Center for Independent LivingTelephone: 417.886.1188 Telephone: 417.269.6829Website: www.paraquad.orgE-mail: [email protected]: Marion Trimble

OHIOHillside Rehabilitation Hospital8747 Squires Ln. Warren, OH 44484Telephone: 330.856.5861 (H)Telephone: 330.856.4303 (W)Contact: Mike Logan Telephone: 330.841.3700Contact: Sue Joy

PENNSYLVANIAHEALTHSOUTHRehabilitation Hospital of Altoona2005 Valley View Blvd., Altoona, PA 16602Telephone: 800.873.4220

PENNSYLVANIAHEALTHSOUTHGreater Pittsburgh Rehabilitation Hospital2380 McGinley Rd.Monroeville, PA 15146Telephone: 800.695.4774 Telephone: 412.856.2584 E-mail: [email protected]: Kristy Nauman, P.T.

PENNSYLVANIADelaware Valley Spinal Cord Injury Association2610 Belmont Ave.Philadelphia, PA 19131Telephone: 215.477.4946Contact: Bruce McElrath

PENNSYLVANIAMagee Rehabilitation SCI Resource & Support Group6 Franklin Plaza, Philadelphia, PA 19102Telephone: 215.587.3174 Fax: 215.568.3736Website: www.mageepeers.orgContact: Marie Protesto

PENNSYLVANIAHEALTHSOUTH Rehabilitation Hospital of York1850 Normandie Dr., York, PA 17404Telephone: 800.752.9675 ext. 820Telephone: 717.767.6941Contact: Lisa Schneider

TEXASDallas/Ft. Worth SCI Support Group3908 Ovilla Road, Ovilla, TX 75154Telephone: 972.617.7911

WEST VIRGINIAWest Virginia Mountaineer Support GroupP.O. Box 1004 Institute, WV 25112-1004Telephone: 304.766.4751 (W)Telephone: 304.727.4004Fax: 304.766.4849 E-mail: [email protected]: Steve Hill

If you cannot find a chapter or support group in yourarea, why not start your own? Contact the National Officefor assistance on our business line 301.214.4006 or ourHelpline: 800.962.9629.

NSCIA CHAPTER NETWORK

NSCIA SUPPORT GROUP NETWORK

ARIZONAArizona United Spinal Cord InjuryAssociation901 E. Willetta, Ste. 2306, Phoenix, AZ 85006Telephone: 602. 239.5929Telephone:877.778.6588Fax: 602.239.6268Website: www.azspinal.orgEmail: [email protected] Contact: Paul Mortenson

CALIFORNIALos Angeles Chapter, NSCIA311 N. Robertson Blvd., Suite 823Beverly Hills, CA 90211Telephone: 310.553.4833Fax: 310.230.0999Email: [email protected]: Paul Berns, M.D.

CALIFORNIAWYNGS, NSCIA7900 Nelson Rd.,Panorama City, CA 91402Telephone: 818.267.3031 Fax: 818.267.3095Website: www.wyngs.orgEmail: [email protected] Contact: Michele Altamirano

CONNECTICUTConnecticut Chapter, NSCIAP.O. Box 400, Wallingford, CT 06492Telephone: 203.284.1045Website: www.sciact.org Email: [email protected] Contact: Bill Mancini

DISTRICT OF COLUMBIASCI Network of MetropolitanWashington, NSCIAPlaza West 9, 51 Monroe St.Rockville, MD 20850Telephone: 301.424.8335Fax: 301.424.8858Website: www.spinalcordinjury.netEmail: [email protected]: Steven Towle or Don Woodruff

FLORIDAFSCIA, Spinal Cord Support Group ofCollier County, Inc.313 Spider Lily LaneNaples, FL 34119Telephone: 239.825.9999Email: [email protected]: Mindy Adaspe

ILLINOISSpinal Cord Injury Association ofIllinois 1032 South LaGrange Rd., LaGrange, IL 60525Telephone: 708.352.6223Fax: 708.352.9065Website: www.sci-illinois.orgEmail: [email protected]: Mercedes Rauen

INDIANACalumet Region Chapter, NSCIA2109 Cleveland St., Gary, IN 46404Telephone: 219.944.8037Email: [email protected]: Lucille Hightower

KENTUCKYDerby City Area Chapter, NSCIA1518 Herr Ln., Louisville, KY 40222Telephone: 502.589.6620E-mail: [email protected]: David Allgood

MASSACHUSETTSGreater Boston Chapter, NSCIAHEALTHSOUTH, New England Rehabilitation HospitalTwo Rehabilitation Way, Woburn, MA 01801Telephone: 781.933.8666 Fax: 781.933.0043Website: www.sciboston.com E-mail: [email protected]: Kevin Gibson

NEW HAMPSHIRENew Hampshire Chapter, NSCIAP.O. Box #197, No. Salem, NH 03073Telephone: 603.479.0560 Fax: 928.438.9607Website: www.nhspinal.orgE-mail: [email protected]: Lisa Thompson

NEW YORKNew York City Chapter, NSCIA Mt. Sinai Dept of Rehab MedicineAttn: James Cesario1 Gustave L. Levy Place, Box 1240New York, NY 10029-6574Telephone: 212.659.9369

Fax: 212.348.5902Email: [email protected]: NYCspinal.orgContact: James Cesario Telephone: 914.969-7257 (H)Telephone: 914.325-3059 (C)Contact: John Moynihan

NEW YORKGreater Rochester Area Chapter, NSCIAP.O. Box 20516, Rochester, NY 14602Telephone: 585.275.6097Contact: Karen GenettEmail: [email protected] Telephone: 585.275.6347Contact: Kathy FlannaganEmail: [email protected]: Amy Scaramuzzino

NORTH CAROLINANCSCIA3701 Wake Forest Rd., Raleigh, NC 27609Telephone: 919.350.4172E-mail: [email protected]: Deborah Myers E-mail: [email protected]: Karen Vasquez

OHIONorthwest Ohio Chapter, NSCIA10271 Roachton Rd., Perrysburg, OH 43551Telephone: 419.872.5347Website: www.spinalrap.org E-mail: [email protected] Contact: Debra Ostrander

SOUTH CAROLINANSCIA South Carolina Chapter2009 Hampton St., Suite AColumbia, SC 29204Telephone: 866.445.5509 Toll free: 803.252.2198Fax: 803.376.4156Website: www.scscia.org

TEXASRio Grand Chapter, NSCIAc/o Rio Vista Rehabilitation Hospital1740 Curie St., El Paso, TX 79902Telephone: 915.532.3004E-mail: [email protected] Contact: Sukie Armendariz, Ron Prieto

VIRGINIAOld Dominion Chapter, NSCIAP.O. Box 8326 (1st Class mail only)Richmond, VA 23226Telephone: 804.726.4990E-mail: [email protected] Contact: Shawn Floyd

WISCONSINNSCIA Greater Milwaukee Area Chapter 1545 S. Layton Blvd., Rm. 320 Milwaukee, WI 53215Telephone: 414.384.4022 Fax: 414.384.7820Website: www.nsciagmac.orgE-mail: [email protected] Contact: John Dziewa

19Spring 2005

by physician negligence nationwide sue.The tort reforms proposed by President

Bush are not only unjustified, but detri-mental to the SCI community. Disabledclaimants should not have to sacrifice theirrights to recover adequate compensation fortheir pain and suffering. Proposals torequire periodic payments would penalizeinjured individuals, while permitting largeinsurers to earn greater investment returnsfrom the monies they retain.

Some lament that tort liability has driv-en certain products off the market. A com-monly cited example is the disappearance ofdiving boards from hotels and public pools.With 1,000 people suffering SCI in divingaccidents each year, fewer diving boardsmay not be such a bad thing. A federal taskforce study in 1977 concluded that mostproducts driven from the market had been,in fact, unreasonably unsafe.

The real “crisis” in our law today is oneof perception and politics. The SCI com-munity needs to protect its interests. Pleasecontact your representatives now andexpress your concerns.

Tort Reform and SCIContinued from page 17

examples of self-dealing are lending moneyto the trust, lending trust assets to one’sfamily or friends, buying property from thetrust, or selling property to the trust.

Do obtain an employer identificationnumber from the Internal Revenue Serviceand use it on all trust bank and investmentaccounts. You can obtain an EIN by calling800.829.4933. Do not use the beneficiary’ssocial security number.

Do promptly report all taxable earningsand pay any income taxes due. In mostcases, if the trust was “self-funded” (that is,it contains the beneficiary’s own money,such as from a personal injury settlement),the earnings can be “passed through” to thebeneficiary and taxed at his or her own indi-vidual rate.

Do provide accounts to the beneficiary

on a regular basis. An account (or account-ing) is a summary of the financial activity ofthe trust for a specific period of time, usual-ly a year. It shows the income and expensesfor the trust and how the assets are invested.Many trusts require accounts to be provid-ed annually, if not more frequently. Andeven if an annual account is not an expressrequirement, it can be an implied require-ment. As far as the beneficiary is concerned,the trust records should be an open book.The goal is simple: no surprises.

A trustee with questions or concernsshould not hesitate to contact a qualifiedattorney. The National Academy of ElderLaw Attorneys (www.NAELA.com), whichhas chapters in all 50 states, is a good refer-ral source.

Barbara D. Jackins practices law in Belmont,Massachusetts. Her book The Special NeedsTrust Administration Manual: A Guide forTrustees is available from disabilitiesbooks.com.

Special Needs TrustsContinued from page 17

By Melinda Neri and Joshua George

The physical, psychological, and health-related benefits of exercise and physicalactivity can be especially important for

individuals with spinal cord injury (SCI),regardless of weight, age, or ability — notonly to maintain a healthy body, but also ahealthy frame of mind.

Researchers with the RehabilitationResearch and Training Center (RRTC) onSCI: Promoting Health and PreventingComplications through Exercise, are work-ing on studies that seek to determine therole of exercise and physical activity in thepromotion of a healthy lifestyle for individ-uals with SCI — and the prevention of sec-

ondary conditions such as pressure soresand heart disease. One RRTC study uti-lized focus groups to learn about the placeof exercise and physical activity in theirlives. Working with individuals with SCI,researchers will then develop exercise pro-grams for both home and community-based settings.

The focus group discussions revealedmany practical concerns that preventedadults with SCI from exercising. Therewere concerns about safety and the accessi-bility of exercise facilities and equipment,but they also expressed a lack of motivationto exercise. The individuals who were quiteactive tended to be the ones who exercisedand were physically active before theyacquired their SCI. Exercise was already apart of their lives before they were injured,and they just continued exercising post-injury. But how can those who were notphysically active before their injury incor-porate exercise into their lifestyle?

Exercising and becoming physicallyactive after acquiring a SCI can be difficultbecause individuals may not have theappropriate resources (be they financial,personal assistance, or transportation) or

know where or how to exercise independ-ently, safely, and effectively. Accessiblegyms may not exist in their area, and staffmay not be knowledgeable enough aboutSCI to train them on equipment.

Motivation plays an important role inincorporating exercise and physical activityinto a post-injury lifestyle, and might belacking, regardless of the nature or degreeof their injury. Proper motivation and anawareness of the benefits of exercise can bea powerful combination that can propelany individual, with or without an SCI,towards a healthy lifestyle.

The Division of Rehabilitation at theUniversity of Illinois has long recognized theimportance of exercise for people with dis-abilities. For over fifty years, the university

has hosted specialized sportsprograms. They currentlysponsor men’s and women’swheelchair basketballteams, a coed wheelchairracing team, and operate anaccessible gym available toanybody on campus with aphysical disability. All stu-dents with disabilities regis-tered with the Division ofRehabilitation are encour-aged to formulate a weeklyworkout schedule.

Shortly after beginninga workout routine for thefirst time, the studentsbegin coming in becausethey want to, not becausethey have to. They quicklyrealize that exercise makesthem feel good, whichmotivates them to keepcoming back. Rarely dostudents miss their sched-uled workouts.

For some individualswith SCI, the psychological benefits ofexercise can be even more valuable than thephysical benefits. Not only does the body’snatural chemical reaction leave it feelingbetter when it is active and in good shape,but for individuals with SCI, the act ofexercising itself integrates them with otherswho are physically active, gives them asense of accomplishment, and boosts theirself-esteem and confidence. This psycho-logical aspect of exercise can be the greatestmotivational tool for those who are newlyinjured — as well as individuals who havehad their SCI for many years.

Regardless of the availability of accessibleresources and facilities, personal motivationand goal-setting habits are what ultimatelyallow a person with SCI to overcome theaccessibility and personal barriers in the wayof an active and healthy life.

Mel Neri, [email protected], is theProject Coordinator of the RRTC on SCI(www.sci-health.org) at the NationalRehabilitation Hospital in Washington D.C.Joshua George, [email protected], is a studentat the University of Illinois, an elite athlete,and a 2004 Paralympian.

The Importance of Exercise…and Its Pertinence to SCI

By Pat Maher,NSCIA V.P. for Chapters

On September 14, 2004, NSCIA, in con-cert with our SCI Network Chapter ofGreater Metropolitan Washington,

D.C., conducted a training for more thantwenty customer service and ground opera-tions staff with Northwest Airlines (NWA) atReagan National Airport to deepen theirunderstanding of how best to serve air travel-ers with disabilities.

The program was a collaborationbetween NSCIA and Ron Pettit, Directorof Disability Services for NWA and chairof their Consumer Advisory Board (CAB).NSCIA intends this to be a model for sim-ilar training at NWA’s operating hubs andstations nationwide. “This is a great exam-ple of one type of partnership we can havewith a business,” said Eric Larson,Director of Operations for NSCIA. “Welook forward to expanding the programinto other markets during the next year.”

The training was presented by Pettit, PatMaher, NSCIA V.P. for Chapters, SCINetwork’s President Steve Towle and boardmember Ann Cody, and customer servicemanagers for NWA at Reagan National.

The NWA customer service training

was designed to assist NWA customer serv-ice and ground personnel when workingwith travelers who use a wheelchair or othertype of wheeled mobility. It was also achance for the three NSCIA representativesto gain deeper insight into internal issuesthat NWA staff faces, including operationalprocess and security concerns. Says Maher,“I expect this training will better enabletheir staff to communicate more effectivelywith people with disabilities.”

Each of the three NSCIA presenters,after introducing themselves and givingsome background of their disability, gavepersonal examples of positive and negativetravel experiences — without noting anyspecific carrier. This was then followed bya question and answer session. The per-sonal perspective of the training promptedNWA staff to consider how they mighthave handled any of these situations.Among the topics discussed:

• Safe handling and stowing of powerwheelchair equipment, including thecomplexities of battery storage, tiedowns, and power connections.Attendees discussed development of aworking form that could be used totrack the movement of a power chairfrom and to the traveler

• Disability etiquette for ticket counter,gate, and flight attendant staff

• Communicating emergency manage-ment procedures to travelers who havea disability

• The wheelchair user’s responsibility tounderstand her equipment’s operationand to be able to communicate relevantdetails to airline personnel (or haveinstructions noted on their equipment)

• The importance of passengers with spe-cial needs arriving at the airport earlyenough to provide adequate time for staffto manage their equipment and needs

• The need for airline personnel to under-stand that each person with a disability isunique with unique air travel needs

Based on the comments following the session,this initial collaborative training session wasclearly highly successful. NSCIA, our SCINetwork affiliate, and our corporate partnerNorthwest Airlines all reported that the train-ing was worthwhile, and worth continuing toexplore in more depth. Ray Santana,Manager, Customer Service GroundOperations for NWA at Reagan National,expressed a strong interest in conductingfuture training sessions for the benefit of theentire customer service staff.

To participate in a training session for NWAcustomer service staff in your area, please con-tact Pat Maher, NSCIA V.P. for Chapters, [email protected] or 630.220.8895.

20 Spring 2005

NSCIA Trains Airline Ground CrewTravel Traders

1/8b/w

21Spring 2005

er on your accommodation, advocatingfor what you need. Sell them on it. Tellthem how your accommodation willimprove your performance, lower costs,or get the job done better. In the case ofpersonal assistance, it might be the firsttime they have encountered this accom-modation request. Don't assume that anyresistance you perceive is discrimination;it could simply be their unfamiliaritythat is stopping the wheels from turning.

Note the example of Richard, whogot hired at a call center as a customerservice representative. He usesParatransit to get to work, a telephoneheadset, an alternative computer inputdevice for typing, and co-workers to pro-vide PAS such as feeding and toileting.Richard had been working for over ayear, when one of his co-workers whohad been providing personal assistanceunexpectedly informed the employerthat he no longer was comfortable in therole. Richard was open and flexible toanother solution. After some researchand discussions with his supervisor,Richard was allowed to bring in his ownpersonal assistant to be paid for by theemployer.

What do you do if the employer isunwilling to accept an accommodationof a personal assistant or is not willing topay for the assistant? According to theADA, employers are required to providePAS in the form of work-related assis-tance, but not PAS for personal care. Thelaw does, however, require the employerto consider allowing employees with dis-abilities to bring their own personalattendants into the workplace. Title I ofthe Americans with Disabilities Act(ADA) provides the legal authorityregarding the use of personal assistanceservices in the workplace. Check it out atwww.usdoj.gov/crt/ada/adahom1.htm.

The Job Accommodation Network(www.jan.wvu.edu) has a vast database ofaccommodation solutions matched toalmost every disability need as well asgood definitions of a Personal CareAttendant and a Job Assistant.

Information, creativity, patience,willingness to negotiate, belief in whatyou have to contribute — all the ele-ments it takes to find the job you'll love.Establish a mutually beneficial relation-ship with your employer, and they willsoon learn that your disability is notwhat determines what you have to offertheir organization, but your skills anddesire to live an independent, productivelife.

Susan Clair is an Employment Specialist atProject HIRED (www.projecthired.org) inSanta Clara, California. She was assistedby CEO George Archambeau, and ProgramDirector, Sheila Sanchez.

Personal Assistance at WorkThe Issues, Your Rights

Continued from page 5

Richardson, "We are still far apart."Cutting domestic spending in order to

reduce the federal budget is the cornerstoneof the President's budget. Medicaid is thelargest and most obvious target for cuts,bringing the issue to the forefront of thenational agenda as services are steadily cut.

Returning from their meeting at theWhite House, the governors were greeted byADAPT members surrounding their hotelchanting the message: "end institutional bias,support choice, free our people!"

The governors passed the resolution, butwith some disappointing amendments. Theyspecifically declined to endorse MiCASSA,Money Follows the Person, or acknowledgethe Supreme Court mandate for choice incommunity settings in the Olmstead deci-sion, but they did vote to support a redirect-ing of federal policy to support communityalternatives over institutional ones.

The protesters then moved off downPennsylvania Avenue and lined up in front ofthe White House fence, many people

promptly handcuffing themselves to the icymetal posts to symbolize the imprisonment ofup to two million people in nursing homesand institutions against their will. No onecame out to acknowledge them.

Today, two of every three long-term caredollars go to nursing homes and institutions.Federal law requires states to provide institu-tional services while community servicesremain optional. With overwhelming evi-dence that people prefer to live in their ownhomes, many are nonetheless forced intoinstitutionalization.

Medicaid is a cost sharing agreement inwhich every dollar of state money appropri-ated for long-term care is matched by a cer-tain amount of federal dollars. States havebecome dependent on federal Medicaid dol-lars and policy to fund their services — andconstrained by the built-in bias towardinstitutionalization.

"To demonstrate in this chilling snowwith the extremely wide range of health andmobility issues of the ADAPT members dur-ing these post-Patriot Act times, took a highdegree of courage indeed," said CarolynLieberg of Oregon ADAPT. "This is my firstADAPT action but I will keep coming back,as we all will, until everyone is free."

22 Spring 2005

quoted in the media in such mainstreamsources as the L.A. Times and the New YorkDaily News, and in the conservativeWashington Times. "I'm saddened but notsurprised that he uses the power of fame andfilm to perpetuate his view that the lives ofpeople with disabilities are not worth liv-ing," said Roth.

The movie is rife with flaws, and utter-ly misrepresents the issue of assisted sui-cide. Following her SCI, Maggie wasshown mostly lying in a hospital bed. Inreality, she would have been activelyinvolved in a range of therapies. In a singlescene she is shown sitting in a wheelchairthat she cannot propel by herself, ratherthan a puff and sip-controlled chair thatwould surely have been provided by therehab center.

Maggie develops serious skin lesions onher arms and loses a leg to a severe circulato-ry problem. These are extremely atypicalexperiences — even for someone with highquadriplegia — and would more likely havebeen a result of negligence.

Maggie had just won a bundle of

money as a boxer, which should haveensured her access to the best availablerehab, adaptive technologies, and thera-pies to foster any possibility of recovery.In time, Maggie may well have gottenweaned from the vent or regained adegree of arm movement.

She never got the chance, so ill-equipped was she to have made so serious alife choice as asking to die. At that point,she could not have had a clear sense of herreal options in life, still in the thick of herinitial grief. Indeed, Maggie had a constitu-tional right to a sedative and to ask for theremoval of the ventilator, just as ClintEastwood has the right to whatever form ofcreative expression he chooses. He simplypresented the context of Maggie's choiceinaccurately.

Nor could the general public in the realworld consider the issue of euthanasia froman informed perspective based on the viewoffered by this movie, but instead are manip-ulated by a worst-case scenario into believingthat Maggie is better off dead.

Of the media's general enthusiasm forthe film, journalist John Hockenberry ofNBC, paraplegic with SCI, wrote that the"critics failed millions of Americans withdisabilities by accepting as utterly plausi-ble the plot-twist that a quadriplegicwould sputter into medical agony in amatter of months and embrace suicide asher only option in a nation where millionsof people with spinal cord injuries leadfull, long lives."

Says actor Robert David Hall of televi-sion's CSI — a double leg amputee andNational Chairman of the Performers withDisabilities Caucus for SAG, AFTRA, andEquity — "I think somebody has to say:Even if you are severely disabled, life is stillworth living."

A small number of mainstream journal-ists got it right. Diane Carman of theDenver Post dedicated a column to the dis-ability perspective as did the ChicagoTimes. The New York Times also felt itmore important to address the euthanasiaissue than to protect the ending of themovie from early revelation.

Chicago Times film critic Roger Ebertwrote that it was inevitable that thesecharacters in these circumstances wouldhave made these choices. But Maggiecould just as well have realized that thecapacity for perseverance and excellenceshe discovered as a boxer could have beenbrought to bear in response to her disabil-ity. Eastwood had an opportunity for atranscendent demonstration, but choseinstead to go the other way solely for thesake of greater dramatic impact.

We know that, regardless of the degree ofimpairment, people have a very great capaci-ty to carry on with their lives following SCI.However horrifying the notion of high quad-riplegia rightfully is to some people, manysay that once you're there things look differ-ent. Some people with SCI do indeed havean impulse to give up their life in the begin-ning, but as they learn what's possible, theychoose to live. NSCIA considers MillionDollar Baby's depiction of assisted suicide asthe preferred choice — particularly duringthe initial period of grief — to be unfortu-nate and grossly irresponsible.

Medtronic


Million Dollar Baby Gets It Wrong

ADAPT Rolls In The RainContinued from page 1

Corporation. In addition to fosteringMcDonald's sponsorship of SCI Summit2005, Bradley also serves on NSCIA'sBusiness Advisory Committee, having servedas its founding Chairperson.

It is no surprise that a diverse group ofbusinesses, organizations and agencies is part-nering with SCI Summit 2005 and SCI Hallof Fame. Our sponsors range from founda-tions — like Medtronic Foundation — whohave a history of understanding and support-ing SCI, to more mainstream businesses likeBank of America who was among the first toinclude wheelchair riders in their advertisingand understand the SCI community as aviable financial services market with certainneeds.

Their goals match perfectly with the sum-mit's goals. SCI Summit 2005 is designed tobring together all the various players in theSCI community to assess spinal cord injurypolicy progress and issues in five areas: rehabil-itation, research, community living, healthpromotion, and technology (see articles,beginning on pg. 7). Priorities and possiblesolutions will be presented on the final day ofthe Summit to panels of key federalappointees for discussion and action planning.

Many of the organizations participatingin SCI Summit 2005 deal with a specificaspect of SCI. They do a great job on onepiece of the puzzle. Some focus on research,for example. Some work on adaptive tech-nology and some on accessible housing.Others address personal assistance and com-munity integration. The SCI Summit is aforum for building bridges across this broadarray of groups to bring all of the pieces ofthe puzzle together.

"NSCIA understands that the SCICommunity is not a single organization or

group," says Eric Larson, NSCIA ChiefOperating Officer. "It is very diverse, andincludes individuals with various levels offunction and relationship: quadriplegics,paraplegics, family members and friends,healthcare service and product providers, aswell as general businesses. People with SCIpurchase durable medical equipment andpharmaceutical products," Larson continues,"and they also go to movies, banks andrestaurants, and use cell phones and comput-ers. You also find people with varying levels ofincome, education, and interests. It's anentire community constellation."

The SCI community has much to bringto the corporate world. "We help them withunderstanding how to interact with and mar-ket to people with disabilities, with problemsolving and best practices," notes Tari SusanHartman, Co-Chair of SCI Summit 2005."We can also offer insights into productdevelopment, accessibility, and we are apipeline to prospective employees. These arestrengths that NSCIA and other SCI groupscan bring to business."

McDonald's Bradley notes that compa-nies who engage in diversity marketing regu-larly receive feedback from members of otherminority groups but rarely hear from peoplewith disabilities. Members of NSCIA andothers in the disability arena can fill this gap,and play a key role by encouraging business tobroaden their outreach to our communities.If you find an accessible product that meetsyour needs, dine in a restaurant that hasaccessible seating, or attend a concert in anaccessible venue, take a moment to e-mail,write, or call that organization and expressyour appreciation. If you see a commercialfeaturing a wheelchair rider, let the advertiserknow you notice their marketing efforts.

"The companies and organizations spon-soring the SCI Summit and SCI Hall of Fameare investing in improving the quality of lifefor people with spinal cord injuries," saysNSCIA's Larson. "We can encourage theirinterest and show our appreciation by givingthem our business."

NSCIA: The Bridge to BusinessContinued from page 1

Mentoring Day.” They play a leadership rolein the U.S. Business Leadership Network,and the Career Opportunities for Studentswith Disabilities and Youth to WorkCoalition. And it doesn’t stop there; TheMinnesota State Council on Disabilitynamed Medtronic its Employer of the Year,and ARC of Minnesota granted them theDistinguished Community Service Award.Internally, employees spearheaded tworesource groups: ABLED (AwarenessBenefiting Leadership and Employees with

Disabilities), and Parents of Children withSpecial Needs.

NSCIA salutes Medtronic and TheMedtronic Foundation for dedicating theirefforts to improving the individual and col-lective lives of people with SCI/D. WhileNSCIA is the immediate recipient of theirgenerosity, millions of men, women and chil-dren with SCI/D and their families are thetrue beneficiaries.

To learn more about Medtronic andThe Medtronic Foundation, visitwww.medtronic.com.


23Spring 2005

Freedom to choose where, when and how to explore life is the aspiration

of virtually every American. For many persons with physical disabilities

and special transportation needs, having choices to fit their individual

needs provides a rewarding experience. Ford Mobility Motoring offers

valuable financial and practical assistance, including reimbursement for the

exact amount of vehicle adaptations, up to $1,000 on adaptive equipment

and up to $200 on alerting devices, lumbar support and running boards.*

Ford Credit Mobility Financing — Offering flexible finance terms for

persons with physical disabilities and their families. In addition, they will

finance both the vehicle and the adaptive equipment for qualified customers

enrolled in the Ford Mobility Motoring Program.

Roadside Assistance — Tire changes, towing, fuel delivery, lockout

assistance and jump-starts are now just a phone call away. In times of

need, a 24-hour toll-free number can bring assistance any day of the year.

www.mobilitymotoringprogram.com

In memory of Christopher Reeve.The Christopher Reeve Paralysis Foundation (CRPF) is committed to funding research that develops treatments and cures for paralysiscaused by spinal cord injury and other central nervous system disorders. The Foundation also vigorously works to improve thequality of life for people living with disabilities through its grants program, Paralysis Resource Center and advocacy efforts.

1952 - 2004

*Total reimbursement is not to exceed $1,000. Options available for factory installation are not considered eligible under the terms of the program.

MA8629/12-04/1

1-800-952-22481-800-833-0312 TTY

24 Spring 2005

www.mentorcorp.com

Self-CathCLEANLY.

Self-CathREGULARLY.

Self-CathMENTOR.

(800) 328-3863

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scilife, vol. 2, no. 2

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