scilife vol. 8, no. 2
DESCRIPTION
SCILIFE Vol. 8, No. 2TRANSCRIPT
1Vol. 8, No. 2
Be Your Own First Responder By Madonna Long and Balchander Jayaraman
For people with disabilities, emergency pre-paredness is part of the daily routine. We just call them “workarounds.” Whether
it’s an entrance that is blocked or a bathroom that has no grab bars, we figure out ways to get on with our lives by working around such
barriers. We don’t let such challenges stop us from living our lives independently and to the fullest. In fact, our minds have become accustomed to thinking and planning for the “what ifs” in our daily life. We can use this skill to create plans for ourselves and our families so that we can survive the impact of a disaster, sustain ourselves in the immediate aftermath, and reestablish our routine follow-ing a disaster.
Communities experience emergencies quite regularly. These can include a water main break, power outage, a fire, or a flood. A disaster, on the other hand, is a catastroph-ic event that overwhelms the established first responder structure within our communities. When a disaster strikes, whole communities are thrown into disarray with calls to 911
leading only to a busy signal, and the reality of the situation hits-- we are on our own and must fend for ourselves.
From lessons learned through the well documented disasters of Hurricanes Katrina and Rita and the terrorist attacks on 9-11, Federal and State governments have encour-aged all citizens to create emergency plans to sustain themselves for at least 72 hours. For people with disabilities, this is even more critical because our daily challenges get mag-nified — a motorized wheelchair without power to recharge it is not of much use, the support network that enabled us to maintain our independence may not be available.
In any disaster, the choices available to us fall into two tracks: 1) Stay where I am and
Continued on page 5
www.spinalcord.org Vol. 8, No. 2
Leading the way in maximizing quality of life for people with spinal cord injuries and diseases since 1948.
United Spinal Association has an-nounced the inclusion of Users First as a new program that advocates for
improved access to seating and mobility equipment by empowering wheelchair us-ers, clinicians, and providers.
Users First, formerly Users First™ Al-liance - a national non-profit formed in 2007, focuses on uniting and strengthen-ing the voice of mobility device consum-ers, such as wheelchair users. These people with disabilities have had limited freedom when choosing equipment critical to their quality of life and independence due to government and health insurance company restrictions.
As a program of United Spinal––which recently announced its merging with NSCIA to become the single, largest mem-bership organization dedicated to improv-ing the lives of people with spinal cord in-juries and disorders nationwide. Users First initiatives will be supported by the organi-zation’s Chapter and peer support network, wide-range of national programs, and more than 60 years of experience in the advocacy arena.
“By combining our resources, we are now in position to spark change in the long-established “one-size-fits-all” mental-
ity when it comes to mobility equipment,” said Paul J. Tobin, president and CEO of United Spinal.
“With United Spinal Association’s leg-acy and strong programs that infuse our community’s efforts, from grassroots initia-tives and community building to legislative issues, we can offer people with disabilities comprehensive support and community resources on a national level never seen before,” said Users First executive director, Ann Eubank, LMSW, OTR/L, ATP.
“People should not have to sacrifice functional outcomes and performance when choosing their equipment. We are committed to ensuring people with disabil-ities nationwide have access to wheelchairs and other equipment so they can live the lives they choose,” she added.
In addition to leading the Users First initiative, Eubank will also assume the role of vice president of Community Out-reach for United Spinal, working to inte-grate all parts of the organization with the communities served, including working with NSCIA Chapters and membership.
The service delivery process for the du-rable medical equipment market is com-plicated and inefficient. Due to discrimi-natory policies, governmental bureaucracy
and health care bud-get cutting, funding has eroded. This has resulted in limited consumer choice and third-party payer con-trol over what doctors are able to prescribe.
Users First also of-fers wheelchair users, clinicians, and equip-ment providers tools and resources that in-spire action and moti-vate change.
Users First offers a way for providers, cli-nicians or wheelchair users to learn more about issues related to access to seating and mobility equipment, and empowers those individuals to work toward improving that access.
Users First will be ex-hibiting at all Abili-ties Expo shows in 2011 (www.abilitie-sexpo.com), and Eu-bank will be speaking at numerous audiences around the nation. For more informa-tion or to sign up to be part of the Users First initiative, visit www.usersfirst.org or call 800-962-9629.
United Spinal Association Broadens Reach with Users First Giving Voice to All Wheelchair Users
2 Vol. 8, No. 2
If you use an intermittent catheter,
you’ll take to LoFric
like...
Take comfort in LoFric. It uses advanced technology that literally binds a slippery layer of water to its surface, making it easier to insert and, just as importantly, remove. No wonder it’s the intermittent catheter of choice for comfort.1,2
For more information, call 1-877-4-LOFRIC, or visit www.lofric.us
1. Diokno AC, Mitchell BA, Nash AJ, Kimbrough JA. Patient satisfaction and the LoFric catheter for clean intermittent catheterization. J Urol. 1995;153(2):349-351. 2. Sutherland RS, Kogan BA, Baskin LS, Mevorach RA. Clean intermittent catheterization in boys using the LoFric catheter. J Urol. 1996;156:2041-2043.
© 2008. 21535 Hawthorne Blvd., Ste. 525, Torrance, CA 90503. LoFric is a registered trademark of Astra Tech, a company in the AstraZeneca Group. US-0408
LOF-011Cons_SCILife_1.indd 1 4/25/08 1:21:37 PM
3Vol. 8, No. 2
SCILIfe STAffMANAGING EDITOR: K. Eric LarsonDEsIGN AND LAyOuT: Nikolai AlexeevADvERTIsING sALEs: Megan BellDATA INpuT: Bonnie J. Haynes
NSCIA NATIONAL OffICe STAff ChIEf ExECuTIvE OffICER: K. Eric Larson REsOuRCE CENTER MANAGER: Bill FertigINfORMATION spECIALIsT: Daniela CastagninoINfORMATION spECIALIsT: Charleene FrazierWEb sERvICEs/pubLIshING: J. Charles Haynes, JDWEbMAsTER: Nikolai Alexeev
BOArd Of dIreCTOrS Executive CommitteepREsIDENT: Patrick MaherIMMEDIATE pAsT pREsIDENT: Harley Thomas (1939 – 2007)ChAIR, ExECuTIvE COMMITTEE: Andy HicksvICE-pREsIDENT fOR ChApTERs: David EstradasECRETARy: Janeen EarwoodTREAsuRER: David EstradaCEO/ExECuTIvE DIRECTOR: K. Eric LarsonvICE-pREsIDENT fOR COMMuNICATIONs: Paul AronsohnvICE-pREsIDENT fOR DEvELOpMENT: Carmen DiGiovine, PhDvICE-pREsIDENT fOR MEMbERshIp: Debbie Myers
Directors Mary BroonerJohn FioritiGretchen FoxChristine N. Sang, M.D., M.P.H
General CounselLeonard Zandrow, Esquire
SCILife PUBLISHerpubLIshER: J. Charles Haynes, JD
SCILife is a publication of theNational Spinal Cord Injury AssociationOne Church Street, Ste. 600Rockville, MD 20850
SCILife is dedicated to the presentation of news concerning people with spinal cord injuries caused by trauma or disease.
We welcome manuscripts and articles on subjects re-lated to spinal cord injuries or the concerns of persons with disabilities for publication, and reserve the rights to accept, reject, or alter all editorial and advertising materials submitted.
Manuscripts and articles must be accompanied by a self addressed stamped envelope if return is requested. Items reviewed in New Products Announcements and advertising published in SCILife do not imply endorse-ment of organizations, products or services.
If you have any questions related to your membership with NSCIA, or would like to join, contact us atHDI Publishers, PO Box 131401, Houston, TX 77219-1401,e-mail: [email protected], fax: 713.526.7787, or phone us toll free at 800-962-9629.
For questions not related to membership, write to: SCILife, HDI Publishers, PO Box 131401, Houston, TX 77219-1401voice: 713.526.6900fax: 713.526.7787email: [email protected] or website: www.spinalcord.org.
For additional information on advertising in SCILife, contact: Advertising Sales Department, SCILife, HDI Publishers, PO Box 131401, Houston
TX 77219-1401 tel: 713.526.6900 fax: 713.526.7787
email: [email protected]
SCILife © 2011
GOLdCOLOpLASt www.us.coloplast.com
INVACARewww.invacare.com
MOBILItY WORkS www.mobilityworks.com
pRIde MOBILItYwww.pridemobility.com
SUNRISe MedICALwww.sunrisemedical.com
UNIted SeAtINg ANd MOBILItYwww.unitedseating.com
SILverAMeRICAN MedICAL dIReCtwww.americanmedicaldirect.com
CARe.COM www.care.com
CheSApeAke RehAB eqUIpMeNtwww.chesrehab.com
the ROhO gROUpwww.therohogroup.com SYNApSe BIOMedICALwww.chesrehab.com
WILMINgtON MedICAL SUppLYwww.wilmingtonmedicalsupply.com
BrONze AdVISACARe www.advisacare.com
AMeRIgLIde www.ameriglide.com
deLtA www.delta.com
FALVeLLOLAW www.falvellolaw.com
FRee WheeL www.gofreewheel.com
MY gRIp SOLUtIONS www.mygripsolutions.com
MYpLeASURe www.mypleasure.com
SCOOtAROUNd www.scootaround.com
tILIte www.tilite.com
WYNg pROdUCtS www.wyngproducts.com
NSCIA BuSINeSS MeMBerSIf the businesses you patronize are on this list, please thank them for supporting you and your fellow NSCIA members. If they aren’t on this list – ask them to join today!
Acknowledgements on our web site, SCILife, SCI e-news or any other NSCIA publication should not be considered as endorsements of any product or service. It is the individual’s responsibility to make his or her own evaluation of such.
www.spinalcord.org/business
from the executive director NSCIA – a program of United Spinal Association. What does that Mean? By K. Eric Larson, Executive Director and CEO, NSCIA
With the merging of NSCIA and Unit-ed Spinal Association, the addition of New Mobility magazine and the even
more recent addi-tion of Users First as a program of United Spinal As-sociation (see page 1), we are today in the strongest posi-tion in our history to fulfill our mis-sion of empower-ing all Americans living with spinal
cord injuries or disorders (SCI/D) to achieve the highest possible quality of life.
As was the case with NSCIA, United Spi-nal was founded more than 60 years ago by a determined group of paralyzed WWII vet-erans who advocated for greater civil rights and independence for themselves and their fellow veterans. Rejecting the poor treat-ment they received at their local VA hospi-tal, they decided to form a support group. From these modest beginnings, United Spi-nal was born.
NSCIA and United Spinal were both built upon the strong foundation forged by our respective organization’s founders––nev-er losing sight of those grassroots efforts to provide a voice to the disability community and to transform the public’s perception of
wheelchair users.Today, NSCIA is the membership pro-
gram of United Spinal, now the largest non-profit organization dedicated to helping people living with SCI/D across the country. As a member, you are part of a growing vi-brant community, and have access to a wide array of resources.
growing CommunityOver the next few months, we will welcome United Spinal association members to the NSCIA family. Our combined 35,000 plus members include individuals of all ages and backgrounds who are driven, independent, and active participants in our society. They are paralympians, wounded warriors, tal-ented artists, kids with big dreams, proud parents, empowered women, self-advocates, heroes, survivors, and accomplished profes-sionals. Beginning in August, SCILife will be replaced by a bold new member publica-tion, Life in Action. Like SCILife, Life in Action will be available both in print and online.
Members of United Spinal can now invite their family members, caregivers and profes-sional contacts to join NSCIA. And we’ll be reaching out to them to help them connect with NSCIA’s more than 60 local chapters and support groups nationwide, connecting them to peers and local resources and pro-gramming.
expanding ResourcesNSCIA members will now have direct access to a range of new programs and services. Visit www.spinalcord.org for details and contact information on the following programs and services, but here’s a quick introduction.
Able to travelLooking for help with the common headaches travelers with disabilities encounter when us-ing travel agencies unfamiliar with booking accessible accommodations? Able to Travel meets the accessibility needs of business and leisure travelers with disabilities, including air travel, transportation, cruises, tours and ex-cursions, hotel accommodations, and access to vital medical equipment.
Users FirstPeople with disabilities have had limited free-
dom when choosing equipment critical to their quality of life and independence due to government and health insurance company restrictions. One of United Spinal’s newest programs, UsersFirst, advocates for improved access to seating and mobility equipment and denounces the long-established “one-size-fits-all” mentality when it comes to the selection of wheelchairs and other mobility devices.
VetsFirstMembers of NSCIA who are veterans can now access United Spinal’s VetsFirst pro-gram advocates for all generations of vet-erans, including individuals living with post-traumatic stress disorder and traumatic brain injuries. VetsFirst’s network of Nation-al Service Officers provides free assistance, resources, and representation for veterans struggling to navigate the intricate and often confusing VA claims process. The program connects with more than 2,000 veterans an-nually through its call center and online help desk. Staff tackles each case individually, taking the time to discuss self-help tips and assist with questions on military separation, claims appeals, and state benefits.
USA techguideUSA Techguide, United Spinal’s web hub exclusively dedicated to sharing information on the latest wheelchairs, mobility scoot-ers, and assistive technology choices receives over 50,000 visitors per month. It’s the first place many people with disabilities stop be-fore purchasing new gear. Visitors can read and submit reviews on wheelchairs, mobility scooters, cushions, standing devices, as well as search for all types of assistive equipment.
Spinal Cord CentralMembers will receive priority access to in-formation, resources and personal support at www.spinalcordcentral.org, including ongoing updates on member programs and benefits.
Please don’t hesitate to contact us at 800-962-9629 or [email protected] with questions about our growing membership com-munity, resources or member benefits. We look forward to serving you.
4 Vol. 8, No. 2
guest editorial Why Strain Yourself?!Why I Use a Manual Wheel-chair Instead of a Powered One
By Gary Karp
I’m asked the question so often; “Why do all that work of pushing a wheelchair in-stead of using a motorized one?”
Here’s the answer...My TiLite manual wheelchair is ex-
tremely lightweight, custom-built for my specific needs and physical ability and pref-erences. Its very design reduces the effort of propulsion; for one thing, it coasts so well that it takes fewer pushes to go a given dis-tance, putting less long term strain on my arms and shoulders. In other words, push-ing my chair is not at all as difficult or ex-hausting as people often imagine. Really, it’s not as hard as it looks.
In 1973, following my spinal cord in-jury, I went through an intensive rehabilita-tion process. Not only did they train me in wheelchair skills, they put me through ex-treme weight training. I’m still pretty strong at the age of 56, so wheeling manually is natural and easy for me.
Wheeling is good for my health. It keeps
me somewhat in shape, burns off some calo-ries (still wrestling with that chocolate ad-diction!), keeps my upper body stretched, and is good for my circulation.
My manual chair allows me to drive a Honda Accord Coupe, because it’s so feath-er-light that lifting it into the back seat is a breeze. Once, that is, I pop off the wheels with their quick release axles. If I used a power chair, I’d have to drive a (much more expensive) adapted van with a ramp or lift.
I sometimes face situations where I need a lift up steps. With a couple of people of av-erage strength and healthy backs, I can easily be wheeled up stairs (using a method that uses the wheels, and where I can contribute to the process). Not an option with a much heavier power chair.
My manual chair costs a lot less than a power chair - not to mention the cost of the above-mentioned modified van. It has fewer operating parts so less likelihood of mainte-nance issues. I am more agile in my manual chair, able to easily make small adjustments to where I want to be in space.
And I feel less disabled-looking in my manual wheels.
Not that power chairs don’t have their place. Au contraire. They have made huge leaps in design. But power chairs, for gen-eral daily use, are for people who don’t have the physical capacity to push a manual chair over the course of a full day’s activity. When it’s the right solution for you, then, just as my manual chair does for me, a power chair extends mobility and independence on a scale never before seen.
Frankly, I’d love to have one of the heavy-duty outdoor power chairs to take the dogs out on the great trail system here in Northern California. The $50,000 or so it would take (for the chair AND the van) is just not in the budget right now.
One of these days power mobility will have a place in my wheeling life. Hopefully someone will be willing to pay for it.
Gary Karp is a unique thinker and leader with a powerful message – disability has changed radically, and everyone needs to get up to speed!
As a seasoned professional author, speaker and trainer, Gary is in a special position to con-vey this message. As a man with a disability, he knows personally how it works. As a well-known member of the broader disability com-munity, he is connected to the latest develop-ments and supported by national leaders. As a businessman, Gary understands the priorities of the workplace — and how people with dis-abilities best fit in. And as a skilled speaker, he engages as he informs — with a little juggling thrown in for extra effect! For more informa-tion, visit www.moderndisability.com.
CALIfOrNIACASA COLINA CeNteRS FOR RehABILItAtIONpomona, CA(909)596-7733
NORthRIdge hOSpItAL MedICAL CeNteRNorthridge, CA(818) 885-8500 ext. 3669
COLOrAdOthe ROCkY MOUNtAIN RegIONALSpINAL INjURY SYSteM-CRAIg hOSpItALenglewood, CO(303) 789-8306
WASHINGTON, dCNAtIONAL CApItAL SpINAL CORd INjURY MOdeL SYSteMNational Rehabilitation hospital Washington, dC(202) 877-1425(202) 877-1196
fLOrIdA BROOkS RehABILItAtION hOSpItAL-UNIVeRSItY OF NORth FLORIdAjacksonville, FL(904) 858-7600
pINeCReSt RehABILItAtION hOSpItAL (CARF)delray Beach, FL(561) 495-0400
GeOrGIAgeORgIA RegIONAL SpINAL CORd INjURY CARe SYSteM-ShepheRd CeNteR, INC.Atlanta, gA(404) 350-7591
ILLINOISMeMORIAL MedICAL CeNteR. NeUROMUSCULAR SCIeNCeS & ORthOpedIC SeRVICeS Springfield, IL 217-788-3000
INdIANA RehABILItAtION hOSpItAL OF INdIANA Indianapolis, IN317-329-2000
KeNTUCKy CARdINAL hILL RehABILItAtION hOSpItALLexington, kY(859) 254-5701
MAryLANd AdVeNtISt RehABILItAtION hOSpItAL OF MARYLANdRockville, Md (240) 864-6000
jOhNS hOpkINS hOSpItALBaltimore, Md(443) 444-4700
keNNedY kRIegeR INStItUte Baltimore, Md(443) 923-9200
keRNAN ORthOpedICS ANd RehABILItAtIONBaltimore, Md(888) 453-7626
MASSACHUSeTTSNeW eNgLANd RegIONAL SCI CtR At BOStON MedICAL CeNteR Boston, MA(617) 638-8000
MICHIGANMARY FReeBed RehABILItAtION hOSpItAL grand Rapids, MI(616) 242-0343
UNIVeRSItY OF MIChIgAN MOdeL SpINAL CORd INjURY CARe SYSteMAnn Arbor, MI(734) 763-0971
MISSOUrI the RehABILItAtION INStItUte OF kANSAS CItYkansas City, MO(816) 751-7900
NeBrASKAMAdONNA RehABILItAtION hOSpItALLincoln, Ne (402) 486-8296
ALegeNt IMMANUeL RehABILItAtION CeNteROmaha, Ne(402) 572-2121
NeW JerSey NORtheRN NeW jeRSeY SpINAL CORd INjURY SYSteMkeSSLeR INStItUte FOR RehABWest Orange, Nj (973) 243-6849
NeW yOrKMOUNt SINAI SpINAL CORd INjURY MOdeL SYSteMNew York, NY(212) 659-8587
NOrTH CArOLINAj. pAUL StICht CeNteR ON AgINg ANd RehABILItAtIONWinston-Salem, NC(888) 605-9568
MOSeS CONe heALth SYSteMgreensboro, NC(336) 832-7000
CAROLINAS RehABILItAtIONCharlotte, NC (704) 355-4300
OHIONORtheASt OhIO RegIONAL SpINAL CORd INjURY SYSteMCleveland, Oh(216) 778-8781
PeNNSyLvANIAUpMC INStItUte FOR RehABILItAtION & ReSeARCh pittsburgh, pA(877) 287-3422
the WILLIAMSpORt hOSpItAL ANd MedICAL CeNteRgIBSON RehABILItAtION CeNteRWilliamsport, pA. (570) 321-1000
SOUTH CArOLINA heALthSOUth RehABILItAtION hOSpItALColumbia, SC(803) 254-7777
TeNNeSSee pAtRICIA NeAL RehABILItAtION CeNteRknoxville, tN(865) 541-3600
TeXASBAYLOR INStItUte FOR RehABILItAtION dallas, tX. (800) 422-9567
tIRR MeMORIAL heRMANN (the INStItUte FOR RehABILItAtION ANd ReSeARCh) houston, tX (713) 799-5000
texas health harris MethodistForth Worth, tX(817) 820-4800
vIrGINIAINOVA MOUNt VeRNON hOSpItAL Alexandria, VA703-664-7592
WISCONSIN FROedeRt MeMORIAL LUtheRAN hOSpItALMilwaukee, WI(414) 805-3000
OrgANIzAtIONAl MeMBerS Of NSCIAFLORIdA SCI ReSOURCe CeNteRSt. petersburg, FL (866) 313-2940
pROjeCt WALkCarlsbad, CA(760) 431-9789
pUSh tO WALkRiverdale, Nj(862) 200-5848
quest to WalkOverland park, kS (913) 451-1500
HOSpItAl MeMBerSNSCIA thanks its growing list of hospital and organizational members, each of which has expressed their commitment to partner with us in our mission of improving the quality of life for people
with spinal cord injury and disorders. Visit www.spinalcord.org for a full list of hospital Members with links to their web sites, and information on how your hospital can join NSCIA.
5Vol. 8, No. 2
Be Your Own First...Continued from page 1 shelter-in-place; or, 2) Evacuate to a safe location. For either track, there are steps that we can take now to ensure that we are able to remain safe and take actions to take care of ourselves. We must use our “work-around” skills to plan now and put in place strategies that will enable us to self-sustain ourselves for at least 72 hours and test plans for how we would evacuate from the area if such a need arises.
Sheltering-in-placeThere are numerous websites that provide information on what to put into a shelter-in-place kit so I’m going to focus on some practical strategies that often get left out.
1. Designate a shelf or cabinet that you can reach easily to store your emer-gency supplies or store them in a plastic container with wheels so that it will be easier to pull out;
2. Keep an old manual phone because these do not need power to work and talk to your neighbors to see if anyone has a generator;
3. If you receive a warning of a major storm or flood, fill up your bath tub with water ahead of time and know that you have potable water in the toi-let tank and water heater (if this is ac-cessible). Caution: Don’t use any type of toilet bowl cleaner or other chemical tab-lets in the toilet tank otherwise it is not safe to drink.
4. Get a cordless battery charger for your electric wheelchair or buy an adapter for your automobile cigarette lighter that has a wall outlet end, or have a manual wheelchair in a location that you can reach; These automobile
adapters have a three-pronged outlet that you can use to plug in your chair and recharge the battery. Make sure that you start your automobile with adequate ventilation.
5. Check with your doctor, insurer or drug manufacturer to secure a one week supply of medication to keep with your emergency supplies kit.
evacuatingFor people with disabilities, evacuating is an option that poses more difficulty particu-larly if we don’t drive or use public trans-portation. In a disaster, the transportation systems will be jammed or gridlocked in traffic. So, here are some practical tips that you should consider when planning your evacuation strategy.
1. Identify a local and a distant evacuation site. The local one is if you have to get out of your immediate area for a short while. The distant evacuation site is for a disaster that affects a broader area and may require a longer stay.
2. Think about where you would go. It could be to a friend or family member’s house. If there is no family within 25 miles, talk to your church, provider or-ganization or social club to see if they have a sister organization where you could travel to.
3. Figure out your transportation options. If you don’t have an automobile, talk to your friends, neighbors or someone at church who lives close by to car pool out of the area.
4. Put together a smaller version of the shelter-in-place kit and include cop-ies of important cards and documents (Insurance, prescriptions, ID and credit cards, list of valuables) in a Ziploc or water proof bag;
5. You won’t be able to take everything so pick out personal treasures that are
valuable to you and keep them together so that if you have to leave it will be easy to grab and go;
Disasters can happen at anytime — with or without warning. If we try to figure out a “workaround” once the disaster hits, it might be too late. So, start taking action now and think about how you will over-come the challenges that you may be faced with if a disaster impacts your area. We have the skills and the ability to think of barriers that may come up. We know how to work around situations we may face because we do it every day. In a disaster as in everyday life, we are our own first responder.
Madonna Long holds a Bachelor’s Science in Homeland Security and advocates for people with disabilities on a wide range of issues. Balchander Jayaraman is the Project Director at Inclusive Preparedness Center.
The Inclusive Preparedness Center, formerly the Center for Disability and Special Needs Preparedness, is a project of Inclusion Re-search Institute (IRI), a non-profit, 501(c) 3 organization, educating consumers and pro-fessionals on innovative approaches in health and welfare enabling persons of all ages, including individuals with disabilities and other special needs to lead independent and productive lives.
from the president
By Patrick Maher, President, NSCIA Board of Directors
While President Obama chose a rather predictable day to announce his bid for a second term - on the heels of
the announcement that 123,000 new jobs were created in March as published by the Bureau of Labor Statistics, whether by de-sign or good fortune, not all Americans are sharing in this long-awaited indicator of a turnaround. Gains were made in key sectors like manufacturing and tempo-rary positions, and the construction sector climbed back to a net zero job loss figure for the first time since June 2007. Further, hours worked by part-time employees are on the rise, a strong predictor of more full-
time hiring to come. These are all great signs you say. Why can’t you see the glass half full you say?
It depends on Whether You’re Buying or SellingUnfortunately,
just as our jobless recovery was bound to create new jobs at some point – and we seem to have arrived at that point – equally assured was that the unemployed among us with a disability would not share in that recovery. As Molly of Molly’s Middle America blog notes, “…the participation and employment-population ratios of the
disabled have gone down over the past year, and the unemployment rate for this group has continued to go up. One can surmise that, as it continues to be harder for those who are disabled to find work, they are more likely to leave the labor force.”
So excuse me, Mr. President, if I don’t celebrate with the irrational exuberance that others might over seeing this faint light at the end of our recessionary tunnel. Qualified and willing candidates with dis-abilities aren’t experiencing this early sign of a recovering job market. Our employ-ment numbers seem to know only one di-rection – south. If job growth in general was a strong predictor of opportunity for candidates with disabilities I’d be doing a wheelie even as I sit here formulating this post. Just as the disability population remains widely unassimilated with the general population, so too are common statistical relationships divorced from this segment of our labor force.
What do the Super-Rich have in Common With me?The April issue of the Atlantic includes an illuminating expose on a Boston College study that looks at super wealth (net worth greater than $25M) and fulfillment. Once you quit laughing at the premise, the ar-
ticle does speak to some logical, and pow-erful, fears and anxieties shared by these inheritors of fortunes, entrepreneurs, and trust fund kids.
What struck me were some of the unan-ticipated connections that I perceived between the super rich and people with disabilities. For example, many were fearful of disclosing their wealth to colleagues or bosses because they thought it would change the relation-ship. This seems analogous to people with non-evident disabilities’ concern over disclos-ing a condition or disability that would ex-pose them to ridicule, undue concern or being ostracized – think HIV, cancer, bi-polar, de-pression. It just struck me that such seemingly divorced segments of the population would share such a human - and pragmatic – con-cern. This common concern calls to mind the oft-noted human observation about diversity – we have more in common than that which sets us apart.
As more or our friends, neighbors, past colleagues and strangers have the affirming experience of getting hired back into the labor force, let’s think about those mar-ginalized populations who, on the whole, don’t share in this singular, value-affirming event in our great country and remember - we have more in common than that which sets us apart.
Recent job growth a good Sign…for Some Capturing a piece of the jobs’ pie
Madonna Long (front, in wheelchair) advocates for people with disabilities on a wide range of issues.
6 Vol. 8, No. 2
caregivingdeclare a Need for Care: how to decide What Assistance You Need
By Stephanie St. Martin
“Function is very different for every-body. What one person can do, an-other may not be able to do — even
if they have the same injury. For people living with spinal cord injury, the question becomes this: How do you overcome your impairment levels?”
As Dan Parkinson, Director of Clinical Services at Braintree Rehabilitation Hos-pital in Massachusetts states in the above quote, function levels are different for all spinal cord injury patients.
In today’s day and age, we are lucky to live in a world where any person with any dis-ability can usually find the help they need — technology has become more advanced and caregivers have become more specialized in specific kinds of care. Spinal cord injury is a very, very specialized area in medicine. There are devoted doctors, known as Physiatrists (a doctor of Physical Medicine and Rehabilita-tion), who are specialized doctors and may be a better option than a General Practitioner. Having care from a specialized doctor could help you better understand not only your injury, but also what your needs are. And
finding quality care can be challenging if you don’t consider what your needs are.
Start by having a conversation with your doctors and nurses. “Discuss your impair-ment level,” Parkinson suggests. “Besides paralysis, there could be changes in sensation changes, limited range of motion and flexibil-ity, muscle weakness, loss of motor skills — all of these impairments should be known before you figure out what care is best for you.”
Think about your daily routine. Where you go, what you do. More often than not, most people need extra care at the beginning and end of the day. This is when the biggest challenges take place, such as dressing, bath-ing, and the morning hygiene routine. If you need bathing and dressing assistance, or trans-ferring from your bed to your wheelchair, having help for specified periods to help with daily function is an option. Just two hours in the morning and evening may be enough to begin your transition to extra care.
Your family. Your friends. Your neigh-bors. Assess the help you already have. Are they physically able to help transfer you? Can they assist with dressing? Most importantly, be mindful of your families’ and friends’ needs, too. Although your life may be a little easier with their assistance, they may not have enough time to devote to you. Sometimes, as much as we want our family to help, they might not be able to so having another per-son help may be the best option.
Make sure you assess your home environ-ment. The width of the hallways, the height of the appliances, the sharp edges of furni-ture — take a look around your home to see if there are any improvements that can be made. More often than not, a few changes may help you get around your home better than before.
Hoya lifts, bringing down sinks and appli-ances to wheelchair level, adding a bar to the bathroom for transferring — all are expensive changes. The question you need to ask is if the expense is a necessary expense. We always want control over our lives and over things we once could do on our own. Giving up that control may be difficult, but acknowledge the help you need first prior to making changes in your home. The best place for the money could be hiring a caregiver to assist you.
If you are hiring a private provider, you must be clear about your needs are with them and keep the communication open and honest. Both you and your caregiver must be willing to learn and willing to teach. We all have unique ways of doing things and doing our routines. Both of you must be open to change (a certain transfer-ring technique may be odd at first, but it could be the best way to transfer you safely), adaptation, new ideas and routine. Home Health aides and Home Aides can help you keep your independence if you are willing to work together. They can help transfer-ring, assist with dressing and bathing. SCI is chronic and lifelong, so having a home aide there when changes fluctuate can help you get medical attention faster too.
“See if you can find someone who is trained to help you with self-inspection,” Parkinson suggests. “It’s important for you to be constantly checking for skin infec-tions; checking your heels, feet, buttocks. A leading cause of death for SCI patients is in-fection due to pressure ulcers.” Using a spe-cial swivel mirror, SCI patients may be able to do self-inspection, but physical therapy can be a great resource.
“Physical therapy has strategies to help decrease the impairment level. People living
with spinal cord injury may not have the strength, sensation or mobility to naturally shift their weight to decrease the pressure on their skin. We have specialized cushions, chairs that can be tilted in different direc-tions — all of which can truly help.”
The first week of care can be difficult to adjust to but it’s good to have a plan in place to help you adjust. Don’t expect your ways to be followed to the letter, but pick one or two important items that you do want done “your way,” and follow through until you get the results you want. Be clear, be consistent.
Any care situation is an on-going jour-ney that may evolve and shift. While it is challenging and requires adaptation, with strong will and perseverance you can over-come any obstacle.
Stephanie St. Martin is a Marketing Associate at Care.com, the premier source of trustwor-thy family care options. Care.com helps people find care giving job opportunities and connect with local babysitters, nannies, senior home care, pet care, tutoring and more through a national network of trusted caregivers.
7Vol. 8, No. 2
public policyUnited Spinal denounces New York City taxi pickTaxpayers, Wheelchair Users, and Aging Population Ignored
United Spinal Association responded re-cently to the choice of the Bloomberg administration and New York City
Taxi & Limousine Commission (TLC) as it failed to pick the next generation taxi that could save taxpayers hundreds of millions of dollars, as well as serve wheelchair users and the fast growing aging population.
“If this decision holds, it will be a black eye on the legacy of Mayor Bloomberg’s ad-ministration as it is financially inexcusable and perpetuates discrimination against peo-ple with disabilities for the next ten years,” stated James Weisman, United Spinal As-sociation senior vice president and general counsel.
Weisman pointed out that the MTA could use wheelchair accessible taxis and greatly reduce the Access-A-Ride program that cost taxpayers $470 million dollars yearly, equivalent to the entire Metro North Budget.
The City overlooked a wheelchair- and scooter-friendly taxi made by a Turk-ish company, Karsan that could be made in Brooklyn employing 800 workers and chose, instead, a Nissan cab.
The New York Daily News and The New York Times reported Brooklyn Borough President Marty Markowitz, Assemblyman Micah Kellner and Public Advocate Bill Di-Blasio have already called on city Comptrol-ler John Liu to investigate the selection pro-cess, alleging a possible conflict of interest.
“The question is why overlook the needs and rights of tens of thousands of New Yorkers and countless visitors from all over the world when it would cost the City nothing, save MTA money and keep people with disabilities and seniors mobile?” added Weisman.
Weisman drafted significant portions of the Americans with Disabilities Act and pointed out that every taxi in London can accommodate wheelchair users.
United Spinal (www.unitedspinal.org) recently announced it will be merging with NSCIA to become the single, largest mem-bership organization dedicated to improving the lives of people with spinal cord injuries and disorders nationwide. United Spinal is a national 501(c) (3) nonprofit membership organization formed in 1946 by paralyzed veterans and is dedicated to improving the quality of life for all Americans with spinal cord injuries and disorders (SCI/D), includ-ing multiple sclerosis, spina bifida, ALS and post-polio. It played a significant role in writ-ing the Americans with Disabilities Act, and made important contributions to the Fair Housing Amendments Act and the Air Car-rier Access Act. Membership is free and is open to all individuals with SCI/D. United Spinal was instrumental in getting New York City to create sidewalk curb ramps and acces-sible public transportation that has been used as a model for many United States cities.
legalthe Role of Life Care planning in Complex Injury Cases
By Len Zandrow, NSCIA General Counsel
When legal claims involve serious or disabling injuries, like a spinal cord injury (SCI), life care planners often
play a key role in assessing the injury’s im-pact and the continuing damages that the affected person will experience in the future. This article briefly summarizes who these experts are, the kinds of information they typically rely upon, and the considerations that are most important in preparing an ac-curate life care plan.
Who Life Care planners AreIn the past few decades, life care planning has emerged as its own specialty. Experts in this field analyze an injured person’s likely future needs and determine the costs associ-ated with meeting those needs.
Life care planners are not necessarily trained in a distinct discipline nor do they come from a single background. They may, for example, have experience in nursing, the
managed care industry, the supply of medi-cal services or equipment, or a combination of these areas.
Life care planners should be distin-guished from vocational rehabilitation ex-
perts, whose fo-cus and analysis is directed more to issues of em-ployability and the career oppor-tunities and ob-stacles presented in particular cir-cumstances. In addition, while life planners are
often familiar with basic economic princi-ples, they ordinarily are not economists nor do they have special expertise on subjects like the investment value of money or the proper methodology for reducing a future sum of money to its present value.
What Life Care planners doLife care planners attempt to measure and quantify, to the extent reasonably possible, the impact that a serious injury has had and will continue to have on a person’s life. In order to do so, life care planners must care-fully review the injured person’s medical history and records, assess the extent of the underlying injuries, and weigh his or her prognosis for the future. Typically, the life planner also interviews the injured person and family members in order to gauge his or her progress to date and ongoing, foresee-able needs.
Life care plans have a variety of uses. Most often, they help injured persons learn, plan and budget for the additional, future costs associated with their injuries. Where the injury was caused by another’s fault, life care plans help any attorneys involved with prospective litigation determine the amount of damages necessary to fairly and reason-ably compensate the injured party for his or her injuries. Such plans can also help the defendant’s insurance company decide what amount of money to set aside as a reserve for the underlying claim.
key Factors in Life Care plans.A good life care plan will consider and re-view many factors. Typically, medical is-sues and related needs will predominate in the plan. The life care planner will calcu-late the likely needs for, and costs of, over-the-counter and prescription medications, medical supplies and durable medical equipment that may be reasonably neces-sary. If, for example, the injured person requires a wheelchair, the planner will take into account the useful life expectancy of such devices (generally 3 to 7 years depend-ing upon the user’s level of activity and the climate where he or she lives).
Based on the injured person’s medi-cal records, past history and prognosis, the planner may also project whether future medical procedures may be required and the expenses associated with such foresee-able treatment, possible rehabilitation and any likely physical or occupational therapy thereafter. If the injured person requires emotional and psychological support, the
costs of counseling will also be estimated by the life care planner.
Depending on the extent and duration of the injury, the person involved may also need attendant care and household assis-tance. The costs of these services are more readily estimated when they are provided by home health agencies or third parties outside the household, rather than family members and friends. Damages for the stress or strain placed on the caregivers’ familial relation-ship may be asserted in separate, so-called loss of consortium claims, which are inde-pendent of the injured party’s direct dam-ages and are typically considered outside the context of the life care plan.
Additional factors in a life care plan may include the expenses associated with: home modifications, adaptive equipment for rec-reational pursuits, periodic case evaluations, and educational information/materials for investigating and pursuing lifestyle options, as altered by the injury.
None of these factors are, of course, dis-cussed in any depth here. Life care planners or other professionals, who work closely with them, should be consulted for a more par-ticularized analysis based on an individual’s unique circumstances.
The above discussion provides only a broad overview of the most common cat-egories of strict liability. There may be other categories that apply in your state and to your circumstances. The law in these particular categories, moreover, differs from state to state, so you may wish to consult an attorney for specific advice on the additional factors and exceptions that may govern.
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8 Vol. 8, No. 2
human interest A Story of hope
By Scott Spann, MD
As an orthopedic spine surgeon I have worked with men and women suffering from spinal cord injuries for the better
part of twenty years. For much of that time I did my best to em-pathize with their pain and the challenges they faced, but as an out-sider to their e x p e r i e n c e there was no way for me to
truly understand. But then, in the blink of an eye all that
changed. It was September 25, 2005 in Austin,
Texas. Temperatures were record-breaking. On such a day most people would stay in-doors in the cool respite of air conditioning, but I’m a stubborn sort and refused to can-cel my Sunday bike ride. So in 107-degree heat I climbed on my Cannondale and took off. I chose a familiar route, along Highway 360, one popular among cyclists in Austin.
It didn’t take long for dehydration to set in, for my body to fatigue and my mind to fog. I remember looking up, seeing an SUV on the roadside in the distance then promptly looking back down at the road whirring by beneath me.
The next thing I knew I was flying
through the air, the side of my head smash-ing into the abandoned SUV, landing with a thud against searing blacktop. I felt nothing but the burning in my face, unable to move anything except my eyes. I knew instantly I was a quadriplegic.
I may be a surgeon, one who knows what such injury looks like from the inside. But I am also a man, and when lying alone on the side of the road, praying to live and for someone to find me, my experience and knowledge were meaningless. I was terrified. My head full of statistics and prognoses, what was most frightening were the images of an unknown future. How would I care for my family? What would I do if I couldn’t perform surgery? Who would I be? What kind of man?
In those first solitary moments I went through what I can only imagine anyone does under such circumstances. Hanging on a precipice where death is as likely as life, it is easy to wonder which would be better. My eyes searched the sky as I pleaded, even bar-gained, with God. Then, from somewhere inside the voice of the warrior athlete I had been in my youth came to the surface. With it came all I knew of overcoming adversity, of winning, of never giving up. And all I knew of the power of hope.
Today, nearly six years later, I look down at my hands and wonder at just how I got from that roadside back to the operating room. How exactly is it that I, once diag-nosed with incomplete quadriplegia, am able to stand for hours with my mind focused and my hands still, performing surgery?
Looking back I give thanks for the two doctors who found me that sweltering day, for the professionals in the ER, the surgeon who fused five consecutive vertebrae, the physical therapists who put up with me and my family who never gave up on me.
I also give credit to a few choices I made early in my recovery. First was my demand to be given cortisone immediately upon ar-rival to the ER. Considered controversial,
it’s a choice I didn’t hesitate to make. Next came one of the most important decisions I have ever made in my life. One week after surgery I begged an occupational therapist named Debbie Tindle to take me on as a patient. Debbie’s primary modalities, cra-niosacral and myofascial release therapy are considered “alternative” or “complemen-tary” in most medical circles, and before my accident I wouldn’t have given either much credence. Now I know better.
There is one last factor in my recovery that I must share, the most important of all. Hope. I have seen the flame of hope ex-tinguished in the eyes of spinal cord injury patients. Being told there is no hope, they resign themselves to the low expectations
of convention. And so, never achieve any more. I say this: hope is the greatest, most vital medicine of all. It is the spark that ig-nites possibility and motivates effort. It is my wish for medicine to begin embracing the gifts of instilling hope and for patients to ignore the warnings of having too much. For without hope, nothing is possible. With it, who knows? If a recovery such as mine can happen to me, it can happen for others. Hope, I believe, is the first step.
Dr. Scott Spann is an orthopedic surgeon in Austin, Texas and an innovator and leader in the clinical use of autologous stem cells. His blog and further information can be found at www.scottspannmd.com.
sports NASCAR-Style Race Car For disabled
the New Jersey Vintage Grand Prix & Ac-cessible Racing celebrate Memorial Day weekend with Wounded Warriors and
disabled Vets at NJ Motorsports Park.“Function is very different for every-
body. What one person can do, another may not be able to do—even if they have the same injury. For Spinal Cord Injury pa-tients, the question becomes this: How do you overcome your impairment levels?”
Accessible Racing, in conjunction with NJ Vintage Grand Prix, Sunoco, Texas Road House and Borgata Casino will hold a virtual world qualifying round and stock car driving experience at New Jersey Mo-torsports Park in Millville, NJ this week-end. VXP driving simulator powered by iRacing.com software develops muscle memory, in addition to the motor skills necessary to qualify for the world’s only “Arrive & Drive” stock car driving experi-
ence for persons with physical disabilities.Accessible Racing (AR), a non-profit or-
ganization, was created by Brian Hanaford and Peter Ruprecht, to help the newly dis-abled begin developing driving skills using the VXP virtual driving simulator. Once they master the virtual world, drivers can transition seamlessly to real world appli-cations. AR provides the only NASCAR-style racecar modified for wheelchair users, and features an accessible driver’s door that opens to 90 degrees. The car also includes specialty features such as dual seats, low resistant steering, hand control brakes and gas pedals, and an instructor’s side brake and steering for safety.
Accessible Racing board member and driving instructor Ian James Brown is a Wounded Warrior and experienced piloting jets at speeds of over 600 MPH and now has a license to drive Accessible Racecar’s com-petitively. Ian will be on-hand to share his experiences with other Wounded Warriors that helped him adjust to life after being paralyzed in the line of duty.
In addition, the Department of Military and Veterans Affairs has expressed interest in incorporating the VXP in all three of their New Jersey homes.
On Friday May 27, from 5-8 pm, at Texas Roadhouse in Millville, New Jersey, folks can
get a first look at this amazing car and learn more about Accessible Racing and how they bring adaptive racing to people with disabili-ties. Meet Accessible Racing co-founders Pe-ter Ruprecht and Brian Hanaford, along with Wounded Warrior driver, Ian James Brown, a United States Air Force Lieutenant who was paralyzed in the line of duty. In addition, Texas Roadhouse will donate 15% of all food sales that evening, and continuing through the end of June, to Accessible Racing.
Mobility freedom may be driving the
racecar for some, for others it may be re-gaining the freedom to drive to the corner store for a loaf of bread or pick the kids up from soccer practice after work, but for all mobility is something purposeful that we would like to give back. Please contact us to be part of this Memorial Day cele-bration and feel proud to support a great cause, www.accessibleracing.com.
For more information contact Brian Hanaford, (603) 726-6477, [email protected]
9Vol. 8, No. 2
10 Vol. 8, No. 2
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NSCIA FORUMSDiscussion groups for people with SCI/D
Peer Support
Pregnancy and SCI
Equipment
Public Policy – Pending Legislation
Preventing Secondary Conditions
Financial Planning
Research – Supporting Quality of Life
New Injuries
Personal Assistance Services
Working/Employment
Disability Culture
Women and Disabilities
Do you have questions?
We have answers.
Visit www.spinalcord.org/forum/
11Vol. 8, No. 2
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spinal cord injury • post-polio • multiple sclerosis
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civil rights • insurance & employment • cure research
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12 Vol. 8, No. 2
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13Vol. 8, No. 2
insurance/financial
By Charleene R. Frazier, R.N., M.S.
knowledge is power; it enables you to become more effective in daily liv-ing! Become an educated consumer
of health insurance and your own best ad-vocate. This information is compiled for persons with spinal cord injuries/diseases (SCI/D) and other disabilities and their families. It gives a basic overview of infor-mation that an individual needs to know to become a more enlightened consumer of health insurance. For people with SCI/D, achieving and maintaining optimal health and preventing secondary conditions is vi-tal. Access to quality healthcare often re-quires an understanding of the following topics, all included on this website:
• Understanding your rights as a health consumer
• Guidelines for selecting an insurance policy and understanding its provisions
• Steps to negotiate the insurance maze• Frequently asked questions• General guidelines for the appeals pro-
cess (if your claim is denied)• Suggestions if you have been unable to
obtain health insurance• Appendices of Helpful Resources
a. Where to find your State Insurance Commissioner
b. Where to find information about changing Federal and State laws that affect health insurance coverage
c. Booklets, offices pertaining to health insurance
As with any information dealing with this subject, it is impossible to include and address all concerns one may have about health insurance. This article is not intend-ed to cover every situation or every nuance of insurance law. Highly technical ques-tions that you may have should be directed to your insurance agent, personnel special-ist, or your own lawyer. Hopefully, you will gain the basic knowledge that you need to exercise your rights regarding health insur-ance and your own plan.
RIghtS AS A heALth CONSUMeRAs a person living with SCI, it is important that you exercise your rights to:
• Maintain and improve your own health and that of your own family and com-munity
• Access information that enables you to make knowledgeable choices for your health practices including:
a. Choose your doctorb. Choose suitable and appropriate
health insurance• Understand types of health insur-
ances• Know what services and conditions
are included, excluded, limited• Know steps to assure your ability to
have rights and needs metc. Make selections to foster a healthy
lifestyle that include:• Quality care choices that promote
disease prevention and reduce risk of secondary conditions, provide interactive checkups, support your caregiver needs
• How to recognize quack providers and scam practices [see appendices]
• Mechanisms and processes for re-porting product and provider com-plaints
• Achieve a relationship, as a person with SCI/D, of mutual understand-ing with your insurance company supported by:
a. Copy of your insurance company’s booklet of a full and detailed explana-tion of benefits
b. Designated claims advisor, benefits
provider, or case manager as your rep-resentative within the insurance com-pany; this person should understand your particular needs, become an ad-vocate for you and be the person with whom you will interact whenever you have an insurance issue.
c. Opportunity to educate your designat-ed insurance representative about the health care needs of the person with a SCI/D. (Teach this person the risk fac-tors for the secondary complications of spinal cord injury, necessary measures to preserve the health and integrity of your paralyzed body and importance of im-
mediate access to insurance and health care professionals).
Educate your insurance representative to be an advocate for your health care needs
FORMS OF heALth INSURANCeSince 1992, there has been a strong move to contain the spiraling costs of health care. Today, health insurance is offered in three major formats:
• Third Party Payors - Insurance com-panies or organizations that sell com-mercial insurance to employers, process claims, and pay providers. There are two categories:a. “Fee for service” (traditional kind of
health care policy) pays providers a fee for the services provided to the insured; offers consumers the most choices of doctors and hospitals. In most cases, the insurance covers 80% of the charge and the patient pays the remaining 20% coinsurance.
b. Managed Care Organization (MCO) – A payor organizes a group of provid-ers, called a network, who have agreed to provide specified health services to persons who enroll in the MCO
plan. The network providers are paid according to a predetermined, con-tracted rate. (Because of lower costs to employers, MCOs have almost en-tirely replaced the indemnity “fee for service” plans in the U.S.)
• Health Maintenance Organization(HMO) These are prepaid health plans for which there are several existing models; the major differences in the models exist in the relationship between the HMO and the participating physi-cians. You or the insured, the HMO member, pay(s) a monthly premium. In exchange, the HMO provides com-
prehensive care for you and your family, including doctors’ visits, hospital stays, emergency care, surgery, lab tests, x-rays, and therapy. The HMO arranges for this care; usually, your choices of doctors and hospitals are limited. How-ever, exceptions are made in emergen-cies or when medically necessary.
• PreferredProviderandPointofServiceOrganizations (PPO/POS) These are mixed model plans that blend a combi-nation of MCO and HMO features. A PPO, similar to an HMO, has a limited number of doctors and hospitals from which to choose and requires that you choose a primary care doctor to monitor your health care. A POS offers a broader selection of providers; the insured se-lects the provider of choice when the medical services are needed. When you use PPO/POS providers (sometimes called “preferred” providers, other times called “network” providers), most of your medical bills are covered. Usually there is a small co-payment for each visit; for some services, you may have to pay a deductible and a co-payment. If you choose (a) provider(s) outside of the network, coverage payment may be
What You Should know About health InsuranceGuidelines For Persons with a Spinal Cord Injury
14 Vol. 8, No. 2
less and you may pay a larger deductible or co-payment. Covered services most often included preventive care such as visits to the doctor, well-baby care, im-munizations, and mammograms.
There are three government-funded health insurance plans that it is important for the person with a SCI/D to know and under-stand:
• Medicare [www.cms.hhs.gov] a federalhealth insurance program for persons who are disabled and have received So-cial Security Disability Insurance (SSDI) for at least 24 months, and for persons 65 years of age or older. Medicare has two parts; these do not cover the same things:a. Part A covers inpatient hospitaliza-
tion, skilled nursing facility care, and hospice care. It will pay for some home health care services, however, you must need skilled care and be homebound. Most people don’t have to pay premiums for Part A coverage, but you will have deductibles to pay.
b. Part B covers inpatient and outpa-tient physician services, as well as outpatient therapies, limited medical supplies and medical tests, and some durable medical equipment (DME). (DMEs require a Certificate of Medi-cal Necessity (CMN) submitted by your physician) Part B is optional, re-quires a monthly premium, an annual deductible, a copayment for each visit or service.
• Medicaid is a federal program that isadministered by the states. It provides medical assistance for persons with low-income and limited assets. Medicaid covers inpatient and outpatient hospital care, physician services, home health care services, medications, and some supplies.
Inquire about your eligibility for Medi-care/Medicaid as soon as possible follow-ing your injury. If you are still in acute rehabilitation, seek the assistance of your social worker or discharge planner. Begin the application process immediately. The approval process is lengthy; periodic inqui-ries to determine status of the application is appropriate and encouraged.
• Social Security Disability Insurance(SSDI) [www.ssa.gov/applyforbenefits] is for one who is permanently disabled; eligibility is based on one’s prior work history under Social Security and deter-mined by the Social Security Adminis-tration.a. If you are permanently disabled and
have been receiving SSDI benefits for 24 months, you will then be automati-cally enrolled in Medicare
b. Please note: SSI is not an insurance program. [www.ssa.gov] SSI disabil-ity payments are made on the basis of financial need. SSI recipients are automatically enrolled in Medicaid, i.e. State Medical Assistance. There are several differences in the eligibility rules for SSI and SSDI. (source: Dis-ability Benefits, p. 1. Social Security Administration, Publication No. 05-10029, September 1999)
gUIdeLINeS FOR SeLeCtINg A heALth INSURANCe pOLICYInsurance companies are businesses; their goal is to make money. Your responsibility is to be an educated, informed consumer who is able to make appropriate selections for your health insurance coverage. The National Committee of Quality Assurance, a nonprofit organization has developed a “Health Plan Report Card” that can assist you in your decision. (Source: 3 Health Plan Report Card. National Committee for Quality Assurance. www.healthchoices.org or 1-888-275-7585). You may obtain a consumer guide for your state [online re-source only].
Insurance companies are regulated by each of the states in which they do busi-ness. Generally, a State Insurance Commis-sion oversees these regulations [see Insur-ance issues on Resources page]. However, self-insured plans are not regulated by the state; the federal law known as ERISA or Employees Retirement and Income Secu-rity Act regulates them. The employer of the insured runs self-insured health plans. It is important to know if your employ-ment-derived health insurance coverage is a ‘selfinsured’ plan. This will be useful and important information when negotiating with your insurance company for disabil-ity-related coverage.
The following are important contribu-tors to your selection process: (Considering your own circumstances, use these sections to identify and prioritize your needs and health goals).
I. List your personal considerations:• Whatareyourhealthpracticesthatpro-
mote your health and well-being as a person with a SCI/D
• Doyouhaveanyexistingchroniccondi-tions in addition to your SCI/D
• What specialists provide your care, i.e.physiatrist, urologist, cardiologist (list your doctors, the hospital(s) at which they have admitting privileges and the plans in which they participate)
• Howoften is itnecessary foryou tobeseen by each specialist
• What rehabilitation therapies do youneed and how frequently, such as physi-cal or occupational therapy
• Doyouneedpersonalassistantservices;if so, how many hours daily or weekly
• Whatdurablemedicalequipment,reha-bilitative, assistive and adaptive devices do you require for accessibility and inde-pendent functioning
• Doyoulivenearyourneededhealthser-vices (What is your hospital preference)
• How do you get to the doctor, urgentcare center or hospital, when needed
• Isyourhealthinsuranceonlyforyourselfor do you have beneficiaries
• Areyouemployedorisseekingemploy-ment within your goals
II. Questions to ask about a health insur-ance plan:• Whatkindofpolicyisthis,i.e.readthe
description of the policy• Can I chooseor retain a specialist (e.g.
physiatrist) as my primary care physician (PCP)
• Istherecoverageforspecialistsincludingthose with SCI expertise
• Does the plan provide out-of- network referrals or standing referrals to special-ists or specialty care centers
• Arephysicians’officesandrelatedhealthfacilities accessible
• What services are and are not covered(i.e. its inclusions, limitations and exclu-sions): inpatient and outpatient rehabili-tation, home health assistance, mental health care, medical transportation (This information is often in obscure places within a policy such as within defini-tions)
• Whatarethepoliciesregardingdeduct-ibles, co-payments, prescription and du-rable medical equipment coverage, long-term, community-based services
• Are there casemanagement services forpeople with SCI/D
• Doestheplanofferahelplineoradviceline for assistance; if so, who staffs this line
• Whataretherequirementsforpre-certi-fication or authorization for preventive, routine, elective, urgent and emergency care
• Does the plan have lifetime caps, i.e. amaximum amount of dollars that will be paid for a condition or for particular services such as rehabilitation, personal assistance or equipment needs
• Is there a clearly explained process foryou to file a complaint; are you eligible to receive reimbursement when seeking a second opinion, if and when you believe you are not receiving necessary and/or appropriate services
III. Understanding Insurance Definitions before Selecting a Health Insurance Plan:• Premium–aperiodicpayment(usually
monthly) made to a payor (insurance company) to keep an insurance policy active; must be paid before, and whether or not, any services are actually received.
• Deductible - an annual, out-of-pocketamount, fixed by the individual insur-ance policy, that the insured must pay each year before the company will begin payment for covered benefits. (If there is a deductible, you should know how much it is, if it is for the entire family or does each member of the family have to satisfy the specified deductible before the plan pays individual benefits)
• Co-payment – a fixed amount that isrequired every time you use your health plan for service(s) and pharmacy pre-scriptions.
• Co-insurance–apercentageofahealthcare service fee that must be paid by the patient; a person’s second insurance pro-gram (secondary) may pay all or a por-tion of this amount.
• Basicmedicalservices-wellcarevisits• Majormedicalplan–mayincludesuch
services as dental, pharmacy, mental health, vision care
• Pre-existing condition – an illness, dis-ability, or disease that the insured has in-curred before coverage has commenced. The passage of the Health Insurance Por-tability and Accountability Act of 1996 (HIPAA) has prohibited the exclusion of individuals from coverage in health in-surance plans due to pre-existing condi-tions.
• Network-physicians,auxiliaryservices,and hospitals with which an HMO con-
tracts to provide care to its clients.• Out-of-network: physicians, auxiliary
services, and hospitals that are not asso-ciated with a particular plan or organiza-tion. Depending on the plan, consumers who select out-of-network services may have to pay a higher cost or the entire cost of going out-of-network. Excep-tions are usually made when members of the plan are traveling out of range of the service provider network.
• Lifetime cap (Important knowledge fora person with a SCI/D) – Maximum amount that a plan will pay for a given condition (usually $1,000,000) a. Inquire if a higher cap is available and
the cost of this addition to the policyb. In self-insured plans, the employer can
set different lifetime caps for different medical conditions
• Medicallynecessaryservices-mustcom-ply with the terms of the insurance con-tract (policy); cannot be experimental, non-FDA approved, educational, or in-vestigative in nature Knowledge of life-time caps on health insurance benefits is important information for persons living with SCI.
StepS tO NegOtIAte the INSURANCe MAZeI. Recommended Steps:• Obtainacopyofthefull(notabbreviat-
ed or summarized) explanation of insur-ance benefits. Read your policy carefully and thoroughly, including fine print, definitions, exclusions, etc., to learn the extent of covered services [such as those specific topics and services noted in Sec-tion I & II, pp. 8-9]
• Findoutifyouhavebeenassignedacasemanager and contact that individual; if not, request that you be assigned to a case manager or benefits advisor. To be your own best advocate, you should edu-cate this individual about your SCI/D and your particular needs to preserve the integrity of your body and health.
• Determine the rehabilitation benefits:inquire about the number of allowed days of coverage for inpatient acute and sub-acute rehabilitation, outpatient and home health rehabilitation; is there an annual maximum number of days; is there a lifetime maximum number of days (these need to be differentiated ac-cording to the above categories of ser-vice)
• InquireaboutrehabilitationinaSCI/D-accredited rehabilitation facility; does this include both an in-state or out-of-state facility
• Know the benefits re: durable medicalequipment (DME); is there a lifetime maximum amount of dollars for DME
• Selectadoctor:Yourchoicewilldependupon the type of insurance plan that you have. You will need a doctor with exper-tise in SCI/D; can this person be your primary care physician (PCP) or will your PCP consult with your SCI/D doc-tor in the management of your health care? The following will apply:a. HMO: must use a physician who is
part of the HMOb. PPO or POS: Choose a doctor within
the system; if your doctor is not on the given list, you may choose to go out of network; you will probably have to pay all or a larger portion of the fees
15Vol. 8, No. 2
• Contact your insurance representativefor issues and/or concerns that relate to your health insurance and whenever you have been denied a service that you be-lieve to be covered
• Remember to always document/re-cord all conversations with your insur-ance company: include date of the call, the reason for the call, the person with whom you spoke and the outcome of the call
• Keep all correspondence that has any-thing to do with your health insurance coverage! All written communications should include your Name, Insurance Identification (ID) and/or Group Num-ber, Social Security Number and your date of birth; require that all actions regarding health benefits coverage be in writing
II. Frequently Asked Questions• CanIgotoadoctorwithSCI/Dexpertise?
Consult the provisions of your insurance policy; if your PCP does not have this knowledge, ask him/her to consult with a SCI/D physician in the management of your health care.
• CanIcontinuemyhealthinsurancethatI had through my employment, even though I cannot return to that place of employment?
COBRA, the Consolidated Omnibus Bud-get Reconciliation Act of 1986,. is a federal law that gives certain employees and de-pendents the right to “continuation cover-age.” This means that they can temporarily continue to keep the same coverage they had through a group health plan , even after they are no longer entitled to stay in the group health plan. The benefits will be the same, but the premiums will probably be higher. COBRA continuation coverage is only available when coverage is lost due to certain qualifying events, such as losing a job, death, divorce, or other life events. Under certain circumstances for the per-son with SCI/D, this continuation may be extended an additional 11 months beyond the initial continuation.
• What is durable medical equipment(DME)?
Equipment such as wheelchairs, walkers, commode and shower chairs that must be ordered by your doctor, accompanied by a ‘certificate of medical necessity’ (CMN), for long term use, and for use in the home.
• Who is responsible for a ‘certificate ofmedical necessity’?
Your physician must complete and sign, in his/her own handwriting, a CMN. This form should accompany any DME request to your insurance company or Medicare; it should specify that your diagnosis is perma-nent, that the requested item will be used over time and that it contributes to your health by preserving the integrity of your paralyzed muscles, wellbeing and/or func-tional independence.
• Will my insurance pay for experi-mental or research procedures? For possible consideration for access to and coverage for experimental medications or procedures: Ask the plan administrator for a “Compassionate Use Waiver” from the FDA. If the waiver is granted, the health insurance plan may permit access and cov-erage.
• WhatcanIexpectifIbecomeacutelyill? Prior to an acute illness, you should request a consultation appointment with your PCP during which you discuss your immediate needs regarding urinary tract infections (UTI’s), spasticity, autonomic dysreflexia (AD), pressure sores and other possible ur-gent health care needs. Ask about “standing referrals” to a specialist such as an urologist, procedures and policies when you become ill after office hours and/or have an urgent care or emergency need.
• WhatshouldIdoifIamtooillandweakto wait for care in an emergency waiting room?
Call your health insurance provider advice or hotline. Ask that they make arrange-ments for you to be seen, or at least placed, in an emergency patient room as soon as you arrive at the ER or arrange for your doctor’s office nurse/staff to assist with such arrangements or contact your hospital trau-ma or SCI nurse specialist and ask for this assistance.
• WhatshouldIdoifIrequireurgentoremergency care?
Call your PCP or insurance advice/hot-line if your situation is non-life threaten-ing. If your situation is life threatening, go immediately to the nearest ER; take your insurance card with you; take information about AD and any allergies, if these are risk(s) for you. Following your emergency, immediately contact your health insurance case manager.
III. Guidelines When a Health Service or an Insurance Claim is Rejected or Denied
All health insurance plans have some form of appeals procedure. It is not un-usual for medical procedures, medications, therapies, ‘length of stay’ days and durable medical equipment to be denied to indi-viduals covered by healthcare plans. Over 70% of those persons, who have been de-nied coverage, do not attempt to appeal the decision. It is strongly recommended that you should appeal all denied or rejected in-surance decisions or claims. Decisions are reversed in 43% to 80% of cases that are appealed, according to recent reports.
Recommended steps:• Contact your insurance representative
immediately; ask for an explanation of the actiona. If needed information was not provid-
ed with the original request, resubmit your request with the pertinent or nec-essary information.
b. If the action is a denial, request the reason(s) for each denial in writing
• Readyourpolicycarefully:a. To discover which type of dispute res-
olution mechanism (appeals process) is available to you
b. To determine if your insurance carrier has mistakenly denied coverage
c. To determine if the service, that has been denied, is deemed “medically necessary”
• Document/Recordallconversations:a. Include name, date, time and actions,
of anyone related to the problem/is-sue, with whom you have spoken
b. Keep copies of all correspondence that has anything to do with the initial denial of coverage, and anything that
pertains to your appealc. Keep copies of all claim forms and
bills• Submittinganappeal:Beyourownbest
advocate!a. Be familiar with appeals proceduresb. Know deadlines to file claims and ap-
pealsc. Inquire as to when a hearing will be
scheduled. (Most plans have a maxi-mum number of days in which to set a hearing date.) Make repeat phone calls until you get concrete answers to your questions. Be insistent, consistent and persistent!
d. Base the contents of your appeal in re-lation to the reason for the denial:• Learn and be informed about your
own health impairment, level of in-jury, care required to preserve the integrity of your paralyzed body, risk of secondary complications.
• Enlist the cooperation and collabo-ration of your doctor in providing supporting documentation as to the need for a reversal of action
• Submit supporting statements from experts in the field with your appeal
• Submit published articles that sub-stantiate the necessity of the service or durable medical equipment that was denied with your appeal
Be your own best advocate - when uncer-tain or dissatisfied – Appeal!• Shouldyoufeelthatyouhavenotbeen
treated fairly by your plan provider or that the appeals process has become too lengthy, contact your state Insurance Commissioner. Each state has an agency whose sole responsibility is to regulate the insurance industry within that state. No two states have exactly the same in-surance regulations; you must contact your state insurance agency to learn your rights about the appeals process.
• Health InsuranceOmbudsman:Twentystates now have these government-paid intermediaries to help the consumer navigate the health care system and re-solve health insurance problems. Con-tact your state insurance agency to find out if this is a service offered within your state.
Resources for the Uninsured SCI/D PersonThe lack of health insurance has become a serious concern within the U.S. An analy-sis of the 2000 census reports revealed that 81% or 13 million Americans have incomes too high to qualify for State Med-icaid. Studies reveal that the uninsured per-son accesses health care less frequently, has more untreated medical problems, are less likely to receive preventive care and more likely to be hospitalized for preventable medical conditions. (source: Fact Sheet re: Uninsured. Families. USA, May 2001; Millions of Low Income Left Uninsured. Health Care Safety Net, July 19, 2001
Avoid secondary complications – Seek medical careAccess to appropriate health care is very im-portant for the person with SCI. The above identified problems can be direct contribu-tors to intensifying the risk for secondary complications that are consistent with SCI.
It will be particularly important that you become an advocate for yourself in a persis-tent effort to obtain the medical care that is vital to preserving the integrity of your paralyzed body and achieving a good qual-ity of health.
There are charitable and patient assis-tance programs for which you may be eli-gible. Several of the prescription assistance programs include pharmaceutical compa-nies that produce some of the medications commonly used for SCI persons. Each pharmaceutical company has its own ap-plication form that must be obtained, filled out and submitted by your physician. To be considered for all assistance programs, you should be prepared to:
• Showproofofnoinsurancecoverage• Showproofofnoprescriptioncoverage• Providedetailedfinancialinformation• Demonstrate being under the care of a
licensed physician.
For a wide range of resources related to insur-ance, please visit www.spinacordcentral.org, or contact an information specialist at 800-962-0629 or [email protected].
Charleene R. Frazier, RN, MS has been a member of the NSCIA Resource Center staff since December 1999; she is currently in-formation specialist and SCI nurse consul-tant. She was Program Coordinator for the REGYS/ERGYS Program (Computerized Functional Electrical Stimulation) for SCI persons in Chevy Chase, Maryland from 1989 - 1999. An important aspect of this program was her ability to achieve insurance reimbursement for both the outpatient thera-py services and purchase of the ergometer for individual patients. Ms. Frazier, a graduate of UCLA School of Nursing, is a member of the American Association of SCI Nurses and the SCI-Nurse Team for www.SCIwire.com.
got a Story? Share it!
NSCIA is looking for first hand member stories
that carry a message of hope and tangible support for people
with new spinal cord injuries or disease.
If you’d like to share your story, or know someone else who might, visit www.spinalcord.org/mystory
16 Vol. 8, No. 2
hospital member Craig hospital Nurse Advice Line Awarded Case-In-point platinum Award in Nurse Call Center Category
dorland Health’s Case In Point Plati-num Awards recognize the most suc-cessful and innovative case manage-
ment programs working to improve health care across the care continuum. From the publisher of Case In Point, Case In Point Weekly, the Case Management Resource Guide, this second annual awards compe-tition set the standard for programs that deliver sustained success across a variety of disciplines and settings in the overarching continuum of care coordination. Case in Point is the official magazine of the Case Management Society of America (CMSA). A range of 26 categories, from best emer-gency department program to best inde-pendent case management program to dozens in between, provides recognition to the exceptional work and esteemed value delivered across the folds of case manage-ment. Case in Point seeks to honor those programs that best educate and empower patients, improve adherence and wellness, manage quality care, and contain health care costs.
The Nurse Call Center category honors the best call center that provides patients an effective and efficient resource to gain information and guidance regarding health and heath care issues.
Craig Hospital is very proud that our NAL is the only one of its kind exclusively dedicated to the unique needs of persons with SCI. We are also pleased with how quickly the program has been embraced, with our nurses so far impacting the lives of 2,500 persons living with chronic spinal cord injury in all 50 U.S. states. As one of the premier SCI rehabilitation and research hospitals, this innovative program supports Craig’s mission of a lifetime commitment of helping persons “achieve optimal health, independence, and life quality”. As a foundational underpinning of this special-ized NAL, our nurses researched the SCI evidenced-based literature, have created a comprehensive internal on-line resource li-brary, and used these resources to develop detailed clinical triage guidelines for use with callers. With a toll-free number, and no charge to consumers, the program is en-tirely funded through Foundation grants and fund-raising,
In October, 2008 Craig Hospital in Denver launched the first Nurse Advice Line (NAL) of its kind ever in the world for SCI, and since that time has impacted the lives of 2,500 persons living with chronic spinal cord injury in all 50 U.S. states. As one of the premier SCI rehabilitation and research hospitals, this innovative program
supports Craig’s mission of a lifetime com-mitment of helping persons “achieve opti-mal health, independence, and life quali-ty”. As an underpinning of this specialized NAL, nurses researched SCI evidenced-based literature, created a comprehensive internal on-line resource library, and used these to develop detailed clinical triage guidelines for use with callers. With a toll-free number, and no charge to consumers, the program is entirely funded through Foundation grants and fund-raising, and is available to persons with SCI anywhere, their families, caregivers, and case manag-ers, regardless of any previous relationship with Craig Hospital or not. The certified NAL registered SCI nurses are licensed in all 50 U.S. states.
The literature is clear that persons with SCI require a life-time of follow-up care and a proactive disease management ap-proach. Research of other nurse advice lines revealed they did not have the spe-cialization in SCI necessary to address the unique and complex complications of SCI, such as issues around bladder, bowel, kid-neys, and autonomic dysreflexia, and 150 other health concerns. Further, we found that many persons with SCI are no longer connected with any SCI follow-up services and are trying to manage with their SCI without resources. Craig Hospital believed there was a need for evidence-based and triage guidelines to empower people to take early preventative action before con-ditions became serious or life-threatening. In addition to receiving calls from persons who were not Craig patients, we wanted to supplement our Follow-up services program with a NAL so that every Craig SCI patient is pro-actively followed by the Nurse Advice Line to ensure safety and ad-herence to the medical regimen established in their inpatient rehabilitation program. The NAL complements Craig’s SCI Fol-low-up Program that sees approximately 500 SCI comprehensive re-evaluations per year in the clinic.
the NAL process The NAL is staffed by nurses who are avail-able M-F from 9:00- 4:00. The nurse spends approximately 30 minutes with each caller and based on the nature of their call and triage guidelines, provides educa-tion so that callers can develop a care plan for themselves in their communities, and self-advocate. Follow-up is provided as needed after each interaction to ensure safety and to make adjustments to the care plan as needed. During the calls, the nurse records anonymous data that is en-tered into the master documentation sys-tem. Data collected includes geographic location, relationship to the person with the SCI, and the type of health informa-tion needed. Telephone consultations are followed with written material sent to the caller. Consumer feedback is collected af-ter each call for program evaluation.
program evaluation The NAL is evaluated in several ways. Utilization is monitored with a database tracking system integrated into the phone software and documentation system. In the first two years of operation the Nurse Advice Line provided in-depth health and wellness information to over 2,500 people
living with or affected by SCI. There was a 30% increase in call volume between the first and second years.
To date, approximately 60% of calls re-ceived have been from outside Colorado. Monthly, an average of 205 calls come into the line resulting in an average of 110 documented assessments. Approximately 75% of calls come from people who are living with SCI; 16% come from family members, friends or other caregivers; and 6% come from general healthcare provid-ers who are inexperienced in caring for a person with an SCI. Approximately half of these callers live in a rural location where access to specialized medical care is un-available. The top three medical topics ad-dressed are related to bowel, bladder and skin management.
The outcomes the SCI NAL has achieved thus far have been impressive. Our nurses spend an average of 30 min-utes on each call, wanting to meet callers’ needs. Satisfaction has been very positive with over 96% reporting the NAL is a valu-able service, 94% reporting they are satis-fied, and 95% reporting their needs were met. When compared to other NAL ser-
vices, respondents report the Craig Hospi-tal NAL is “a lot better” or “a little better” in regards to knowledge of spinal cord in-jury issues (92.5%), promptness of advice offered (89.2%), compassion (92.3%), and professionalism (87.9%).
Conclusion Craig Hospital is proud of what the service has been able to accomplish in two years, and are pleased with the very positive feed-back we have received from consumers. The administration of Craig Hospital and the Craig Hospital Foundation have made a commitment to the long-term success of this program, and aggressive funding ef-forts are on-going. Support for the Nurse Advice Line is provided through generous grants from the Anschutz Foundation, PVA Educational Fund, Caring for Colorado, Schramm Foundation, El Pomar Founda-tion, Christopher Reeve Foundation and individual donations.
For additional information contact Kenny Hosack at Craig Hospital: 303-789-8490 or email [email protected]
VOluNteer OppOrtuNItIeS At NSCIA
Are you looking for a way to make a difference? Volunteering with the National Spinal Cord Injury Association (NSCIA) offers the opportunity to do just that – and in a way that fits your levels of experience and availability. Since we have a national Chapter network, and so much of our work is done via phone and email, we can work with any motivated
volunteer no matter where they live.
Volunteer support is vital to our organization’s ability to accomplish as much as we do with limited staff and budget. You can make a difference by…
If you would like more information or to apply to serve as an NSCIA volunteer, please contact Eric Larson at 847-997-2109 or [email protected].
…building resources. The Development Committee helps NSCIA identify and connect with sources of funding and foster the development of the Association’s financial well being.
…raising voices. The Com-munications Committee works with the Vp of Communications and NSCIA staff to facilitate communications both within and outside the Associa-tion.
…growing our member-ship. The Membership Committee works with the Vp of Membership to promote the growth and develop-ment of the Association’s membership and helps to build and communicate the value of membership in NSCIA.
…supporting special projects. Our Resource Center also uses volunteers on a proj-ect basis, depending on current activity, ranging from research to phone/email contact to planning or staffing events.
…working with local Chapters. Most of our national network of Chapters also use vol-unteers and we would be happy to connect you with a Chapter in your area.
Committees typically meet monthly via teleconference, and time com-mitment varies but can average as little as 2 - 5 hours per month depending on your committee, or as high as you want, limited only by your passion for progress.
17Vol. 8, No. 26 September/October 2007
NSCIA will celebrate 14 new inducteesand an emerging leader at the 3rd an-nual Spinal Cord Injury (SCI) Hall of
Fame gala and induction ceremony on theevening of Tuesday, Nov. 6, at the John F.Kennedy Center for the Performing Arts inWashington, D.C. in recognition of the ac-complishments of people with SCI andthose committed to their quality of life.
Once again, NSCIA will be host to aperformance on the Millennium Stage, fol-lowed by the 2007 induction ceremony anda dessert reception in the Roof TerraceRestaurant. Nashville based singer/song-writer JP Williams will perform on the Mil-lennium Stage, and award-winningjournalist, Leon Harris will emcee the event.
Hosted last year by inaugural SCI Hallof Fame member and former DatelineNBC correspondent John Hockenberry,this black tie optional celebration is at-tended by business professionals, govern-ment officials from a variety of departmentsincluding the U.S. Departments of Healthand Human Services, Labor, Justice, Edu-cation, Housing and Urban Developmentand the Social Security and Veterans Ad-ministrations, healthcare providers, mediarepresentatives, researchers, individuals, andfamilies – all of whom share a commitmentto maximizing the quality of life for peoplewith spinal cord injury and disease.
This year’s categories include AssistiveTechnology, Benefactor, Corporate Execu-tive, Disability Activist, Disability Educator,Entertainment, Entrepreneur, GovernmentExecutive, Grassroots Organizer, Legislative,Media, Research in Basic Science, Researchin Quality of Life, and Sports. In addition,NSCIA will award an “Emerging Leader,” aspecial award which was introduced last yearin conjunction with the 2006 SCI Hall ofFame.
The process began in August whenNSCIA called for nominations. Far exceed-ing last year’s nominations by almost 50stellar nominees, NSCIA has received morethan 165 qualified nominees! These nomi-nees were voted on by NSCIA membersand reviewed by a selection committee toratify the voting. One nominee from eachcategory will be inducted and celebrated atthe gala.
Formed by NSCIA in 2005, the SCIHall of Fame was created to celebrate andhonor individuals and organizations thathave made significant contributions to qual-ity of life and advancements toward a betterfuture for all individuals with spinal cord in-jury and disease.
To find out more about the SCI Hall ofFame or to see a list of previous inductees orthis year’s nominees, visit www.spinalcord.org.
Join Us at NSCIA’s 3rd Annual Spinal Cord Injury (SCI) Hall of Fame Gala
Attorney Ronald R. Gilbert
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Some of Ron Gilbert’s many efforts to help the spinal cordcommunity include:
• Helped sponsor legislation benefitting spinal cord injuredpersons.
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• Received a Certificate of Appreciation for Prevention workfrom Michigan PVA.
Time may be working against you. A rule of law called theStatute of Limitations puts a time limit in which you may file aninjury claim. This time can be as short as one year. If you havebeen seriously injured, time may be running out. Don’t wait.There is no cost to talk to Ron.
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1-800-342-0330Ronald R. Gilbert, P.C.
www.fscip.org / [email protected]
[email protected] you have suffered a spinal cord injury, call today to receive afree legal consultation and complimentary copy of SpinalNetwork and a handbook on legal options for victims of spinalcord injuries.
Cases HandledPersonally Nationwide
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Among Ron Gilbert's many prevention and advocacy efforts, he has:
° Helped sponsor legislation benefiting spinal cord injured persons.
° Founded the Foundation for Aquatic Injury Prevention and the Foundation forSpinal Cord Injury Prevention, Care and Cure (www.fscip.org).
° Served as Secretary and a member of the Board of Directors of theNational Spinal Cord Injury Foundation.
° Received a certificate of appreciation for Prevention work from theMichigan PVA.
° Served as a member of the SCI/TBI Advisory Committee - Michi-gan and Vice Chairman 1988 - 1996.
Time may be working against you. The rule of law called the Statuteof Limitations puts a limit on the time in which you may file an injuryclaim. This time can be as short one-year. If you have been seriouslyinjured and haven't talked with a lawyer, time may be running out.Don't wait. It won't cost you a cent to talk with us. And it may be themost important telephone call you'll ever make.
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If you have suffered a spinal cord injury, call today to receive a free legal consultationand complementary membership in the National Spinal Cord Injury Association, includ-ing the publication Options, a complementary copy of Spinal Network and a hand-book on legal options for survivors of spinal cord injuries.
Cases Handled Personally Nationwide
1-800-342-0330Ronald R. Gilbert, PC
www.fscip.org / [email protected]
OPTIONS FOR SURVIVORS OPTIONS FOR SURVIVORS OF SPINAL CORD INJURIESOF SPINAL CORD INJURIES
° Financing The Future: Managing Disability Re-lated Expenses
° Prevention: Helping Others Avoid Accidents ° Liability, Compensation And Your Rights ° Legal Options ° Improving Safety Through Legal Action ° Finding and Choosing An Attorney ° Getting Help: A Guide To Organizations
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NSCIA Member ServicesSCILife, HDI Publishers, PO Box 131401,
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Toll free (800) 962-9629Fax (713) 526-7787
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, their re-lated service providers, policy makers, organizations, hospitalsand others interested in the issues affecting the spinal cord in-jury community. Our mission is to enable people with spinalcord injuries, diseases and dysfunction to achieve their highestlevel of independence, health and personal fulfillment by pro-viding resources, services and peer support.
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scilife19:SCILIFE 12/30/2007 21:50 Page 6
resources
By Tom Scott
Nobody likes to be talked down to or treated like they are invisible. But it happens every day to people who live
with disabilities or use wheelchairs to get around.
Many who interact with people with disabilities for the first time, whether it’s in a social or business setting, are unaware that their language and actions may be of-fensive and inappropriate. And it’s usually not due to a lack of sensitivity, but more of a lack of understanding.
Published since 1998, United Spinal Association’s Disability Etiquette booklet, which offers tips on interacting with peo-ple with various disabilities, has been dis-tributed across the country to thousands of businesses, schools, and organizations to help increase awareness of the importance of disability etiquette.
One organization that has benefited from Disability Etiquette is the Kansas Youth Empowerment Academy (KYEA), a nonprofit located in Topeka that educates, mentors, and supports youth with disabili-
ties to be contributing members of their community.
KYEA has handed out the booklets to delegates, volunteers, and mentors at its Kansas Youth Leadership Forum –– a five-day event for high school juniors and seniors with various disabilities now in its 11th year that teaches leadership, advocacy, and goal setting.
KYEA also distributes the booklet to all of its new employees, all participants at its monthly disability awareness presentations, and at resource fairs the organization at-tends throughout the year. The organization has conducted over 300 presentations in the last five years to a variety of ages, groups, and cities.
“We think that it’s very important to break down the barriers between the disabled community and people without disabilities. This can begin with a very simple one-hour presentation about disability awareness/eti-quette. We are very open and fun with our presentations, and we have seen what a large impact it can have just to calm people’s fears about those who may seem different than them. So, educating people about basic dis-ability etiquette is a passion of ours and is
definitely a part of our mission,” says Carrie Greenwood, program coordinator at KYEA.
KYEA was instrumental in getting a bill passed in Kansas that requires schools within the state to teach disability awareness and history. Thanks to its efforts, the Kan-sas Board of Education designated the third week of October as Disability History and Awareness Week in its schools.
“This was a large task, and we continue to work on promoting the law and helping schools to find lots of resources in order to teach disability education,” adds Green-wood.
Fidos for Freedom, Inc. –– a Maryland-
based grassroots nonprofit that increases the quality of life of local residents and provides companionship through specially-trained service dogs, hearing dogs and ther-apy dogs –– has also found the Disability Etiquette booklet to be a valuable resource.
Part of its mission is to educate the public about reasonable accommodation, public access laws, and the Americans with Disabilities Act. And that’s where the booklet is most useful.
The organization not only gives copies to its volunteers and supporters, but also to attendees at its service dog demonstrations.
“Many of our volunteers work only in the therapy dog side of the house and actu-ally need to be educated about the needs of our service dog clients, so they themselves can become more articulate representatives of the organization and our clients,” says Suzanne Miller, executive director of Fidos for Freedom, Inc.
To download Disability Etiquette or any of United Spinal Association’s other in-formative publications free of charge, visit www.unitedspinal.org/disability-publica-tions-resources/ or call 1-800-444-0120 to order printed copies.
Tom Scott is Web Site Content Editor for United Spinal Association and NSCIA, and writes and edits a wide range of materials for our members. United Spinal Association can customize a “Disability Etiquette” training ses-sion at a reasonable cost for your company, or-ganization, or institution. Its experienced staff can plan a lunch-and-learn program based on your needs. For more information, please con-tact [email protected].
disability etiquette Booklet helps Local Nonprofits Raise Awareness
18 Vol. 8, No. 2
NSCIA ChApter & Support Group NetworkARIZONASUPPORT GROUPSEast Valley Support Group (COMPASS)Phone: (602) 241-1006Contact: Pauline Staples E-mail: [email protected]
Flagstaff Support GroupPhone: (928) 527-8567Contact: Al White
Grupo de apoyo en EspañolGentiva Rehab Without Walls, 7227 N 16th St #107, Phoenix, Arizona Phone: (602) 943-1012Contact: Diane
Prescott Support GroupPhone: (623) 209-0311Contact: Gary Hershey
SCI Women Support GroupBanner Good Samaritan Hospital, 1111 E McDowell Rd, Phoenix, Arizona, 85006 Phone: (602) 239-3307Contact: Jill Greenlee, CTRS
CALIFORNIACHAPTERWYNGS, NSCIA7900 Nelson Rd., Panorama City, California, 91402Phone: (818) 267-3031Fax: (818) 267-3095Contact: Michele Altamirano Website: www.wyngs.orgE-mail: [email protected]
SUPPORT GROUPSSouthern California SCI Support GroupCasa Colina Centers for Rehabilitation 255 E. Bonita Ave., Pomona, California, 91769 Phone: (818) 267-3031Fax: (818) 267-3095Contact: Michele Altamirano, WYNGS Email: [email protected]
Leon S. Peter’s Rehabilitation CenterP.O. Box 1232, Fresno, California, 93715Phone: (559) 459-6000 Ext. 5783Contact: Ray Greenberg E-mail: [email protected]
CONNECTICUTCHAPTERConnecticut Chapter, NSCIAP.O. Box 400, Wallingford, Connecticut, 06492Phone: (203) 284-1045Contact: Jeff Dion Website: www.sciact.orgE-mail: [email protected]
DISTRICT OF COLUMBIACHAPTERSCI Network of Metropolitan Washington, NSCIAAttn: SCIN, 14 Wolf Drive, Silver Spring, Maryland, 20904Phone: (240) 429-6141Contact: Kimball GrayE-mail: [email protected]
FLORIDASUPPORT GROUPSPeer Support Contact313 Spider Lily Ln, Naples, Florida, 34119Phone: (239) 353-5894Contact: Mindy Idaspe E-mail: [email protected]
Sea Pines Rehabilitation Hospital101 East Florida Ave., Melbourne, Florida, 32901Phone: (321) 984-4600Contact: Ellen Lyons-OlskiE-mail: [email protected]
Capital Rehabilitation Hospital1675 Riggins Rd., Tallahassee, Florida, 32308Phone: (850) 656-4800Contact: JoAnna Rodgers-Green
Florida Rehab. and Sports Medicine5165 Adanson St., Orlando, Florida, 32804Phone: (407) 823-2967Contact: Robin Kohn Email: [email protected] : (407) 623-1070Contact: Carl Miller
HEALTHSOUTH - Support Group90 Clearwater Largo Rd., Largo, Florida, 33770 Phone: (727) 588-1866Contact Vicki Yasova
Tampa General Hospital SCI Support Group2 Columbia Dr., Tampa, Florida, 33601Phone: (800) 995-8544
GEORGIASUPPORT GROUPSColumbus SCI Support GroupPhone: (703) 322-9039Contact: Ramona Cost E-mail: [email protected]
Central Central GA Rehab Hospital3351 Northside Dr., Macon, Georgia, 31210Phone: (800) 491-3550 Ext. 643Fax: (478) 477-6223Contact: Kathy Combs
ILLINOISCHAPTERSpinal Cord Injury Association of Illinois1032 South LaGrange Road, LaGrange, Illinois, 60525Phone: (708) 352-6223Fax: (708) 352-9065Contact: Mercedes RauenWebsite: www.sci-illinois.orgE-mail: [email protected]
INDIANASUPPORT GROUPSCalumet Region Support Group2109 Cleveland St., Gary, Indiana, 46406Phone: (219) 944-8037Contact: Rita Renae Jackson Email: [email protected]
Northwest Indiana SCI Support Group1052 Joliet Rd, Valparaiso, Indiana, 46385Phone: (219) 531-0055Contact: Joe White E-mail: [email protected]
IOWACHAPTERSpinal Cord Injury Association of Iowa3936 NW Urbandale Dr, Urbandale, Iowa 50322Phone: (515) 554-9759Contact: Angie Plager Website: www.spinalcordiowa.orgEmail: [email protected]
KANSASCHAPTERGreater Kansas City SCIAP.O. Box 8826 Kansas City, MO 64114Phone: (913) 491-5667Contact: Linda KlaiberWebsite: www.spinalcord.org/kansascityEmail: [email protected]
KENTUCKYCHAPTERDerby City Area Chapter, NSCIA305 W. Broadway, Louisville, Kentuky, 40202Phone: (502) 588-8574Contact: David Allgood, PresidentWebsite: www.derbycityspinalcord.orgE-mail: [email protected]
SUPPORT GROUPFriends with Spinal Cord Injuries3785 hwy 95, Benton, Kentucky, 42025Phone: (270) 205-5675Contact: Anndrea CoffmanE-mail: [email protected]
LOUISIANALouisiana Disability Alliance, NSCIAP.O. Box 86632, Baton Rouge, Louisiana, 70817 Phone: (225) 436-4519Contact: Glenn Gaudet
MARYLANDSUPPORT GROUPKernan Hospital SCI Support Group2200 Kernan Dr., Baltimore, Maryland, 21207Phone: (410) 448-6307Contact: Jenny Johnson Website: www.kernan.org/kernan/
MASSACHUSETTSCHAPTERGreater Boston Chapter, NSCIANew England Rehabilitation Hospital, Two Rehabilitation Way, Woburn, Massachusetts, 01801Phone: (781) 933-8666Fax: (781) 933-0043Contact: Kevin GibsonWebsite: www.sciboston.comE-mail: [email protected]
SUPPORT GROUPSBMC Support/Discussion Group7 West-Harrison Ave Campus,Boston, MassachusettsPhone: (781) 933-8666Website: www.sciboston.com/support.htm
Spaulding Support/Discussion Group125 Nashua Street, Boston, MassachusettsPhone: (617) 573-2081Website: sciboston.com/support.htm
Spaulding Support/Discussion Group 125 Nashua Street, Boston, MassachusettsPhone: (857) 222-5123Contact: Betsy Pillsbury Website: sciboston.com/support.htm
Whittier Westborough Support Group 150 Flanders Road, Westborough, MassachusettsPhone: (508) 871-2000 Ext. x2165Contact: Deb Website: sciboston.com/support.htm
MICHIGANCHAPTERMSCIA1938 Woodslee Drive, Troy, Michigan 48083Phone: (248) 288-2270Contact: Stacey MurphyE-mail: [email protected]
MISSISSIPPISUPPORT GROUPMagnolia Coast SCI Support Group12226 Oaklawn Rd., Biloxi, Mississippi, 39532Phone: (601) 969-4009Contact: Michelle Bahret Website: www.lifeofms.comEmail: [email protected]
MISSOURICHAPTERGreater Kansas City SCIAP.O.. Box 8826 Kansas City, MO 64114Phone: (913) 491-5667Contact: Linda KlaiberWebsite: www.spinalcord.org/kansascityEmail: [email protected]
SUPPORT GROUPSouthwest Center for Independent Living2864 S. Nettleson Ave., Springfield, Missouri, 65807Phone: (417) 886-1188Contact: Marion Trimble Website: www.swcil.orgE-mail: [email protected]
NEW HAMPSHIRECHAPTERNew Hampshire Chapter, NSCIA21 Chenell Drive, Concord, NH 03301 Phone: (603) 225-3304Fax: (603) 228-9680Contact: Debbie KriderE-mail: [email protected]: www.nhspinal.org
NEW YORKCHAPTERSGreater Rochester Area Chapter, NSCIAP.O. Box 20516, Rochester, NY, 14602Phone: (585) 275-6097Contact: Karen GenettE-mail: [email protected]: (585) 275-6347Contact: Amy ScaramuzzinoE-mail: [email protected]
New York City Chapter, NSCIAMt. Sinai Dept of Rehab MedicineAttn: James Cesario1 Gustave L. Levy Place, Box 1240New York, New York, 10029Phone: (212) 659-9369Fax: (212) 348-5901Contact: James Cesario or John Moynihan Website: www.nycspinal.orgE-mail: [email protected]
SUPPORT GROUPSSCI Network of Central New YorkARISE, 635 James Street, Syracuse, New York, 13203Phone: (315) 464-2337Fax: (315) 464-2305Contact: Tammy BartoszekE-mail: [email protected]: (315) 247-0927Contact: Maria FroioE-mail: [email protected]
Long Island Spinal Cord InjuryPhone: (631) 221-9255Contact: Ron Quartararo Website: www.testaverdefund.orgE-mail: [email protected]
NORTH CAROLINACHAPTERNCSCIA3701 Wake Forest Rd., Raleigh, North Carolina, 27609Phone: (919) 350-4172Contact: Deborah MyersE-mail: [email protected]: Karen Vasquez E-mail: [email protected]
OHIOCHAPTERSNorthwest Ohio Chapter, NSCIA13745 Archbold Whitehouse RdSwanton, Ohio 43558Phone: (419) 875-4029Contact: Hank Burney, PresidentWebsite: www.nwonscia.orgE-mail: [email protected]: (419) 531-6401Contact: Becky GayE-mail: [email protected]
Northeast Ohio Chapter, NSCIAPO Box 934, Chesterland, Ohio, 44026Phone: (440) 442-5550Fax: (440) 442-5789Contact: Jeff Schiemann E-mail: [email protected] SUPPORT GROUPHillside Rehabilitation Hospital8747 Squires Lane, Warren, Ohio, 44484Phone: (330) 841-3856Contact: Rebecca LebronE-mail: [email protected]: (330) 889-2158Contact: Rick AckermanE-mail: [email protected]
PENNSYLVANIASUPPORT GROUPSRehabilitation Hospital of Altoona2005 Valley View Blvd., Altoona, Pennsylvania, 16602Phone: (800) 873-4220
Greater Pittsburgh Rehabilitation Hospital2380 McGinley Rd., Monroeville, Pennsylvania, 15146Phone: (800) 695-4774Contact: Kristy NaumanE-mail: [email protected]
Delaware Valley SCIA2610 Belmont Ave., Philadelphia, Pennsylvania, 19131Phone: (215) 477-4946Contact: Bruce McElrath
Magee Rehabilitation SCI Resource& Support Group6 Franklin Plaza, Philadelphia, Pennsylvania, 19102Phone: (215) 587-3174Fax: (215) 568-3736Contact: Marie Protesto Website: www.mageepeers.org
Rehabilitation Hospital of York1850 Normandie Dr., York, Pennsylvania, 17404Phone: (800) 752-9675 Ext. 720Phone: (717) 767-6941Contact: Tammy Derk E-mail: [email protected]
SOUTH CAROLINACHAPTERSCSCIA2935 Colonial Drive, Columbia, SC 29203Phone: (866) 445-5509 (toll free)Phone: (803) 252-2198Contact: Diane Epperly, Executive DirectorE-mail: [email protected]: Rafe Ellisor, ChairmanE-mail: [email protected]: www.scspinalcord.org
SUPPORT GROUPSChester Area SCI Support GroupPurity Presbyterian Church on 135 Wylie Street, Chester, Chester, South Carolina,Phone: (803) 385-2270Contact: Bill McDonoughE-mail: [email protected]
Conway Peer Support GroupNew Horizons Center, 1021 Third Avenue, Conway, SCPhone: (843) 488-1309 Contact: Ellen LeftwichE-mail: [email protected]
Florence, SC Area SCI Support GroupHealthSouth Rehabilitation Hospital of Flor-ence, 900 East Cheves Street, Florence, SCPhone: (843) 679-9932Contact: Ronnie McFaddenE-mail: [email protected]
Greenwood Peer Support GroupBurton Center, 2605 Highway 72/221 East, Greenwood, SCPhone: 864-942-7124Contact: Kristy LawsonEmail: [email protected]
Midlands Peer Support Group2935 Colonial Drive, Columbia, SCContact: Diane EpperlyPhone: (803) 252-2198 or 866-445-5509E-mail: [email protected]
Orangeburg, SC Area SCI Support Group3000 St. Matthews Road, Orangeburg, SCPhone: (803) 829-2043Contact: Rebecca FelderE-mail: [email protected]
Spartanburg, SC Area SCI Support Group101 St. Matthews Lane, Spartanburg, SC, 29301Phone: (864) 595-1947Contact: Dot ColsonE-mail: [email protected]
Trident Peer Support Group1812 Sam Rittenberg Blvd., Charleston, SCPhone: (843) 792-2605 Contact: Richard AustE-mail: [email protected]
TENNESSEECHAPTERTennessee Spinal Cord Injury Association (TSCIA)105 Ballentrae Drive,Hendersonville, TN 37075Phone: (615) 947-6204 Contact: Cheryl Stowe, Executive Director E-mail: [email protected] Website: www.standuptn.com
TEXASCHAPTERRio Grande ChapterHighlands Regional Rehab. Hospital 1395 George Dieter, El Paso, Texas, 79936Phone: (915) 298-7241Fax: (915) 298-7298Contact: Sukie ArmendarizContact: Ron Prieto E-mail: [email protected]
VIRGINIACHAPTERSpinal Cord Injury Association of VirginiaP.O. Box 8326Richmond, VA. 23226Phone: (804)726-4990Fax: (888) 752-7857Contact: Steve FetrowEmail: [email protected]: www.sciava.org
WASHINGTONSUPPORT GROUPSCI ForumUniversity of Washington Medical CenterCafeteria Conference Room B/C1959 NE Pacific St, Seattle, Washington 98195Phone: (206) 685-3999Contact: Cynthia SalzmanE-mail: [email protected]
WEST VIRGINIASUPPORT GROUPWest Virginia Mountaineer Support GroupP.O. Box 1004, Institute, West Virginia, 25112Phone: (304) 766-4751(W) Fax: (304) 766-4849 Contact: Steve Hill E-mail: [email protected]
WISCONSINCHAPTERNSCIA Southeastern Wisconsin1545 S. Layton Blvd., Rm. 320, Milwaukee, Wisconsin, 53215Phone: (414) 384-4022Fax: (414) 384-7820Contact: NSCIA-SWC OfficeE-mail: [email protected]: John Dziewa E-mail: [email protected]: www.spinalcordwi.org
For a current listing of Chapters and Support groups, visit www.spinalcord.org, or call 800.962.9629.
If you cannot find a chapter or support group in your area, why not start your own? Contact the National Office for assistance on our helpline: 800.962.9629.
19Vol. 8, No. 2
Register online for priority access!www.abilitiesexpo.comwww.abilitiesexpo.com
HoustonAugust 26-28, 2011
Reliant Center
San JoseNovember 18-20, 2011
San Jose Convention Center
AtlantaFebruary 17-19, 2012
Georgia World Congress Center
FREEAdmissionFREEAdmission
We discovered wheelchair accessories to makeour lives easier!
“We were quite pleased with the turnout of vendors for people of alldisabilities. We especially like the new inventions brought in by guyswho know firsthand what is needed for those in a chair. It takes aperson with a disability to understand the meaning of ‘disability’." Trish N., Houston Abilities Expo
I saw my son walk hands-free for the first timewith the help of a special walker!
“He had the biggest smile from ear to ear. He lifted up his knee and assoon as I saw that first step, I just started crying because I’d neverseen that before. He kept saying, ‘I’m doing it, Mommy, I’m doing it. I’mwalking! I’m strong!’” Desiree T., Los Angeles Abilities Expo
Everything I need is all in one place!“Finally, a place where ALL the options can be presented, includingoptions that I haven't even dreamed of! Even though the Internet hasmade the supply and demand path shorter, it's still hard to find justwhat you are looking for online.” Reba D., New York Metro Abilities Expo
The highlights for my kids were the sportingevents and other activities!
“They couldn’t get enough of it and we even had to visit the freewheelchair maintenance booth to get things tightened up! We alsomade contact with an adaptive sports program. The expo made myjob as a parent of children with disabilities a lot easier.” Heather B., Houston Abilities Expo
I made lasting connections with people from across the country.
"I think my favorite part is networking with people, as that's how I cancontinue being a resource for others. The more I know, the more I canhelp others! Interacting with other professionals with differentcapabilities was inspiring to me as well!" Angie P., Chicago Abilities Expo
I learned so much from the free workshops."I was able to attend a workshop for travel and will share with the MSSelf Help Group I attend and help facilitate. The workshop was great. Itwas hard for me to take enough notes!" Gail W., Chicago Abilities Expo
I feel 20 years younger thanks to Abilities Expo.“WOW! I never thought my arthritis would let me pick up a spoonagain and I found a whole set of cutlery designed for people like me.There were all sorts of practical gadgets to make lives for seniors, likeme, easier.” Robert S., Atlanta Abilities Expo
Los AngelesApril 15-17, 2011Los Angeles Convention Center
New York MetroMay 20-22, 2011New Jersey Convention & Expo Cente
ChicagoJuly 8-10, 2011Schaumburg Convention Center
For People with Spinal Cord Injuries… Experience Abilities Expo…For People with Spinal Cord Injuries… Experience Abilities Expo…
SpinalCord:Layout 1 12/10/10 6:30 AM Page 1
You can be there for her.
Even if you can’t be there with her. CaringBridge helps connect people
during a significant health challenge. Patients and families can easily
create a free website to share the experience, save time and energy,
and receive support.
To create your own website that gives recognition to the
National Spinal Cord Association, visit www.CaringBridge.org/spinalcord
tell uS WHAt YOu tHINk
As part of our merger with United Spinal Association, SCILife will be evolving to Life in Action beginning in with the july/August issue. You will see some of the same writers and columns, and explorations of the same themes — everyday accessibility, travel, health and healthcare, employment, assistive technology, etc. — that you have come to expect.
But here’s your chance to tell us what you’d like to see. We want to give you the member-ship publication you want, which means we need to hear from you. to make it easy for you to share your thoughts on this, we’ve created an online survey that should take just a few minutes to complete. just go here: www.surveymonkey.com/s/lifeinaction. You’ll find a few quick pages of questions that you can answer in complete confidentiality to let us know exactly what you want to see in Life in Action.
If you don’t have access to a computer, I hope you will join the conversation in some other way, preferably by writing us at:
SCILife EditorOne Church St., Ste. 600
Rockville, MD 20850
tell us which stories you enjoy, and which ones you don’t. Which features have you read lately that made an impression on you? What topics have we not covered enough that you want us to cover more?
Now is your chance to give us a piece of your mind and shape your new membership publication. We look forward to hearing from you.
20 Vol. 8, No. 2