www.spinalcord.org Leading the way in maximizing quality of life for people with spinal cord injuries and diseases since 1948. Vol. 4, No. 3 May/June 2007 By Mike Ervin, SCILife Senior Editor T he regular meeting of the San Francisco Mayor’s Disability Council held on April 20, 2007 was a great celebration of a great event that transformed the lives of gen- erations of Americans with disabilities. It was a commemoration of what has be- come known as the 504 sit-ins. Thirty years earlier, on April 5, 1977, thousands of peo- ple with disabilities in cities all over America began a peaceful occupation of their re- gional offices of what was then called the U.S. Department of Health, Education and Welfare (HEW). In San Francisco, there were 120 protestors and 50 of them did not leave HEW until April 30. For 26 days they slept on the floor and washed up in the pub- lic bathroom. Ultimately, their demands were met. The Rehabilitation Act of 1973 had been signed into law four years earlier. It prohib- ited any recipients of federal funds (such as universities, hospitals and airports) from dis- criminating against people with disabilities. But HEW, the agency in charge of issuing regulations under Section 504 of the law which would give it its teeth, had taken no actions to do so. The protestors left only after HEW secretary Joseph Califano offi- cially signed regulations into law. It was the longest protest occupation of a federal office building in history (Ironi- cally, that record was broken in 2005 when members of the disability rights group ADAPT and other activists occupied the of- fice of Tennessee Governor Phil Bredesen for 75 days to protest cuts in TennCare, that state’s Medicaid program. Some who took part in the sit-ins were at the recent commemoration. One of them was Judy Heumann. Back in 1977, Judy was an em- ployee of the first Center for Independent Living in Berkeley, California. She went on to serve as the Assistant Secretary for the Office of Special Education and Rehabilita- tive Services in the U.S. Department of Ed- ucation from 1993 to 2000. She was an adviser on disability and development for the World Bank until recently and today she heads the new Washington D.C. Depart- ment of Disability Services. Another commemorant, Ken Stein marched outside the building all day, every day throughout the sit-in. Today he is the program administrator for the San Francisco Mayor’s Office on Disability. At the com- memoration, he said, “For many of us, whether our roles in it were large or small, the 504 demonstration was and continues to be a focal point in our lives -- a moment that continues to this day to inform how we see ourselves and how we view the world.” The sign Stein carried at the 504 demonstration has been on display at the disability rights history exhibit at the Na- tional Museum of American History, adja- cent to the Greensboro lunch counter, a powerful symbol of the African American civil rights movement. This juxtaposition illustrates the most significant impact of the 504 sit-ins says attorney Deborah Kaplan, who took part in the occupation of the HEW office in Washington, D.C. “Our sit- in forced people to look at disabled people in a different light. It was a way to signal that our issues belonged to the landscape of civil rights and social change, rather than charity balls and institutions.” Today, Kaplan lives in Berkeley and runs Continued on page 14 By W. Roy Grizzard, Jr., Assistant Secretary of Labor Office of Disability Employment Policy T his is a story of two young men. One lives in the east and one in the west. A few years ago, both were full of enthusi- asm and optimism. One was employed and the other was not yet in the workforce. Sud- denly, each experienced an accident that re- sulted in a spinal cord injury. This is also a story about Customized Employment and how it changed each of their lives. Michael Fitzpatrick was living in Ohio and working as a paralegal. After moving to Maryland, he was in- volved in a serious accident. In an instant, he went from being an optimistic, confi- dent young man to a de- spondent one. Instead of the inde- pendent life he had enjoyed, Fitzpatrick found himself living in a nursing home in need of personal care assistance. The acci- dent took away more than his ability to walk. It shattered his confidence. He didn’t think he could ever work again. Randon Hill was an easy-going high school student in Montana. His sense of humor endeared him to many. Near the end of his junior year, he was involved in a car accident. He went on to complete high school, but then spent the next two years “hanging around the house,” as he puts it. Both young men happened to go to their respective One-Stop Career Centers just at the time that the Office of Disability Employment Policy (ODEP) was funding research on Customized Employment in those areas. The staff at the Maryland Cus- tomized Employment Partnership met Fitzpatrick approximately one year after his injury. They helped him start a process of discovery to identify his strengths, skills, desires and even fears. This revealed that he had many skills to offer an em- ployer, but he was hampered by not knowing what his body could do and by the fear that no em- ployer would see beyond his wheel- chair. Taking into account his typing and research skills, as well as his glowing smile, the Maryland staff decided that a work experi- ence in customer service would Continued on page 6 Customized Employment A Back-to-Work Strategy for Job Seekers with Spinal Cord Injury Historic Protest Victory Still Resonates 30 Years Later Dr. Roy Grizzard. Protest sign from the historic 504 sit-ins of 1977.
Transcript
www.spinalcord.org
Leading the way in maximizing quality of life for people with spinal cord injuries and diseases since 1948.
Vol. 4, No. 3May/June 2007
By Mike Ervin,SCILife Senior Editor
The regular meeting of the San FranciscoMayor’s Disability Council held on April20, 2007 was a great celebration of a
great event that transformed the lives of gen-erations of Americans with disabilities.
It was a commemoration of what has be-come known as the 504 sit-ins. Thirty yearsearlier, on April 5, 1977, thousands of peo-ple with disabilities in cities all over Americabegan a peaceful occupation of their re-gional offices of what was then called theU.S. Department of Health, Education andWelfare (HEW). In San Francisco, therewere 120 protestors and 50 of them did notleave HEW until April 30. For 26 days theyslept on the floor and washed up in the pub-lic bathroom.
Ultimately, their demands were met.The Rehabilitation Act of 1973 had beensigned into law four years earlier. It prohib-ited any recipients of federal funds (such asuniversities, hospitals and airports) from dis-
criminating against people with disabilities.But HEW, the agency in charge of issuingregulations under Section 504 of the lawwhich would give it its teeth, had taken noactions to do so. The protestors left onlyafter HEW secretary Joseph Califano offi-cially signed regulations into law.
It was the longest protest occupation ofa federal office building in history (Ironi-cally, that record was broken in 2005 whenmembers of the disability rights groupADAPT and other activists occupied the of-fice of Tennessee Governor Phil Bredesenfor 75 days to protest cuts in TennCare,that state’s Medicaid program. Some whotook part in the sit-ins were at the recentcommemoration. One of them was JudyHeumann. Back in 1977, Judy was an em-ployee of the first Center for IndependentLiving in Berkeley, California. She went onto serve as the Assistant Secretary for theOffice of Special Education and Rehabilita-tive Services in the U.S. Department of Ed-ucation from 1993 to 2000. She was anadviser on disability and development forthe World Bank until recently and today sheheads the new Washington D.C. Depart-
ment of Disability Services.Another commemorant, Ken Stein
marched outside the building all day, everyday throughout the sit-in. Today he is theprogram administrator for the San FranciscoMayor’s Office on Disability. At the com-memoration, he said, “For many of us,whether our roles in it were large or small, the504 demonstration was and continues to bea focal point in our lives -- a moment thatcontinues to this day to inform how we seeourselves and how we view the world.”
The sign Stein carried at the 504demonstration has been on display at thedisability rights history exhibit at the Na-
tional Museum of American History, adja-cent to the Greensboro lunch counter, apowerful symbol of the African Americancivil rights movement. This juxtapositionillustrates the most significant impact of the504 sit-ins says attorney Deborah Kaplan,who took part in the occupation of theHEW office in Washington, D.C. “Our sit-in forced people to look at disabled peoplein a different light. It was a way to signalthat our issues belonged to the landscape ofcivil rights and social change, rather thancharity balls and institutions.”
Today, Kaplan lives in Berkeley and runsContinued on page 14
By W. Roy Grizzard, Jr., Assistant Secretary of Labor Office ofDisability Employment Policy
This is a story of two young men. Onelives in the east and one in the west. Afew years ago, both were full of enthusi-
asm and optimism. One was employed andthe other was not yet in the workforce. Sud-denly, each experienced an accident that re-sulted in a spinal cord injury. This is also astory about Customized Employment andhow it changed each of their lives. MichaelFitzpatrick was living in Ohio and working
as a paralegal. After movingto Maryland, he was in-volved in a serious accident.In an instant, he went frombeing an optimistic, confi-dent young man to a de-spondent one.
Instead of the inde-pendent life he had enjoyed, Fitzpatrickfound himself living in a nursing home inneed of personal care assistance. The acci-dent took away more than his ability towalk. It shattered his confidence. He didn’tthink he could ever work again.
Randon Hill was an easy-going highschool student in Montana. His sense ofhumor endeared him to many. Near the endof his junior year, he was involved in a caraccident. He went on to complete highschool, but then spent the next two years“hanging around the house,” as he puts it.
Both young men happened to go totheir respective One-Stop Career Centers
just at the time that the Office ofDisability Employment Policy(ODEP) was funding research onCustomized Employment in thoseareas.
The staff at the Maryland Cus-tomized Employment Partnershipmet Fitzpatrick approximately oneyear after his injury. They helpedhim start a process of discovery toidentify his strengths, skills, desiresand even fears. This revealed thathe had many skills to offer an em-ployer, but he was hampered bynot knowing what his body coulddo and by the fear that no em-ployer would see beyond his wheel-chair. Taking into account histyping and research skills, as well ashis glowing smile, the Marylandstaff decided that a work experi-ence in customer service would
Continued on page 6
Customized Employment A Back-to-Work Strategy for JobSeekers with Spinal Cord Injury
Historic Protest Victory Still Resonates 30 Years Later
Dr. Roy Grizzard.
Protest sign from the historic504 sit-ins of 1977.
2 May/June 2007
3May/June 2007
SCILife is dedicated to the presentation of news concerning peo-ple with spinal cord injuries caused by trauma or disease.We welcome manuscripts and articles on subjects related tospinal cord injuries or the concerns of persons with disabilitiesfor publication, and reserve the rights to accept, reject, or alter alleditorial and advertising materials submitted. Manuscripts and articles must be accompanied by a self ad-dressed stamped envelope if return is requested. Items reviewed in New Products Announcements and advertisingpublished in SCILife do not imply endorsement of organizations,products or services.
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According to the Centers for Medicareand Medicaid Services, there are over300,000 people in our country’s nursing
homes who want to return to communityliving. That’s almost the same number of
people who live inToledo, Ohio.
Having helpedpeople get out ofnursing facilities, Iknow that the realnumber is actuallymuch larger. As Ifigure it, the realnumber is proba-bly closer to the
population of Jacksonville, Florida or Indi-anapolis, Indiana.
That’s a lot of people!People should not have to go into nurs-
ing facilities in order to get the services theyneed to live in the community.
Under current Medicaid policy, federallaw requires that states cover nursing homecare in their Medicaid programs, but there isno similar requirement for community at-tendant services. Although some states havealready recognized the benefits of home andcommunity-based services, they are un-evenly distributed and only reach a smallpercentage of eligible individuals.
The Community Choice Act addressesthis issue.
Previously known as MiCASSA, theCommunity Choice Act is the latest versionof legislation that would increase access tocommunity-based services and other sup-ports for Americans with disabilities andolder Americans. The bill will allow peoplewho are eligible for nursing homes or otherMedicaid funded institutions to have thechoice of living in the community with var-ious services and supports.
Over the years, there have been a numberof changes to this legislation created byADAPT, a national grass roots disability rightsorganization fighting so people with disabili-ties can live in the community with real sup-ports. But there were only minor changes tothe current version. It now includes some lan-guage to protect the rights of attendants andexpands the Medicare demonstration pro-gram to people of all ages. Perhaps the mostsignificant change is the name.
The updated name reflects the purposeof the legislation. The Community ChoiceAct is designed to give people real choice inlong term care options. This Act wouldallow individuals eligible for services in aSkilled Nursing Facility, Intermediate CareFacility for the Mentally Retarded (ICF-MR), or Institution for Mental Disease(IMD) the opportunity to choose to receiveattendant services and supports instead.
Rather than be forced into institutionalplacements, people would get assistance in
their own homes with the basic activities ofdaily life that most people take for granted likemeal preparation, eating, toileting, bathing,grooming, shopping, managing finances andparticipating in the community. The Com-munity Choice Act also addresses the need forassistance with health-related functions.
When passed, the legislation will lead toimplementation of other necessary reforms.It would:
• Provide assistance in the home andcommunity, such as at school, work, orreligious activities;
• Include systems for securing back-up attendants;
• Offer options for consumer control ofservices;
• Provide an enhanced match for peoplewho require more expensive commu-nity services to help offset the cost ofthose services;
• Address the inequity in financial eligi-bility between nursing facilities andcommunity-based services;
• Support those minor but essential ex-penses incurred by people returning tothe community, such as purchasingbedding and kitchen supplies and pay-ing security deposits.
The Community Choice Act is not a
new, unfunded mandate. It simply takesmoney already spent keeping people innursing homes and shifts it into paying forprograms that are more flexible and respon-sive to consumers. It breaks the institutionallock on these funds and people who are al-ready eligible for services will finally have areal choice.
Senators Tom Harkin (D-Iowa) andArlen Specter (R-Pennsylvania) have co-sponsored the Senate version of the Com-munity Choice Act (S 799). RepresentativesDanny Davis (D-Illinois) and John Shimkus(R-Illinois), introduced the legislation in theHouse of Representatives (HR 1621). Toget this legislation passed, we need to get asmany members of Congress as possible tosign on to and support the CommunityChoice Act of 2007.
Other federal legislation has been pro-posed to address the issue of long term serv-ices and supports, but none provides thecomprehensive solution that the CommunityChoice Act offers. Every major national dis-ability organization supports this critical leg-islation and over 600 organizations havesigned on as supporters, including NSCIA.
It’s time to take action. If your organi-zation isn’t signed on as a supporter of theCommunity Choice Act, do it today! Con-tact your federal legislators and urge themto sign on as co-sponsors. Ask your familyand friends to make calls too.
Hundreds of thousands of people arecounting on you!
Bruce Darling is Executive Director of the Cen-ter for Disability Rights and Regional Centerfor Independent Living in Rochester, New York.He is an organizer with ADAPT and was oneof 99 people arrested during the most recent ac-tion in Washington, D.C. For more informationgo to the ADAPT website at www.adapt.org.
Community Choice Act = Independence and Self Determination
guest editorial
March 30 was the first day that mem-ber states of the United Nationscould sign on to the historic Con-
vention on the Rights of Persons withDisabilities (see SCILife January/Febru-ary ’07). The great news is that 99 na-tions have signed on and Jamaica hasalready ratified it. But the United Stateshas not and most likely will not sign theConvention. Once 20 of the signingcountries ratify the Convention, it willgo into force.
An April email response from the U.S.State Department to a request for an ex-planation from several disability organiza-tions said, “Early in the negotiations forthe Convention, the U.S. delegationstated that given the complexity of regula-tions and enforcement mechanismsneeded to ensure equal opportunity forthose with disabilities, it would be moreproductive for nations to pursue reformsat home rather than negotiate a newUnited Nations convention. For this rea-son, the U.S. stated that it did not intendto become party to the Convention.
“At the same time, the United Statesjoined constructively in the work of theCommittee during the negotiations of thetreaty, including the sharing of our expe-riences and offering technical assistanceupon request on key principles and ele-ments. We feel that our involvement has
improved the treaty.”The American Association of People
with Disabilities has launched an onlinepetition urging President Bush to sign thetreaty. The petition reads, “When Presi-dent George H.W. Bush signed the Amer-icans with Disabilities Act on July 26,1990, he established the U.S. as a worldleader in the global fight for the rights ofpeople with disabilities. When he signedthe ADA, your father declared, ‘Let theshameful wall of exclusion finally cometumbling down.’
“As a result of leadership with the ADA,that wall has been crumbling…bit by bit,and the landscape for people with disabili-ties has experienced radical transformationhere in America. Yet, for most of the morethan 650 million people with disabilitiesworldwide, that wall is as strong as ever.Eighty percent of the world’s disabled livein developing countries, many in destitutecircumstances, and they demand the liber-ation of a transformative law that can pointthe way toward true equality and full partic-ipation in society…
“At this most crucial moment, we callupon you to continue the legacy your fa-ther began. We call upon you to sign theUN Convention on the Rights of Personswith Disabilities…”
To access the petition, go to www.aapd-dc.org/UN/petition.html.
89 Countries Have Signed U.N. Disability Convention, but not U.S.
4 May/June 2007
By Marcie Roth,Executive Director and CEO, NSCIA
NSCIA has been working for some timeon the complicated issues associatedwith preparing for emergencies for peo-
ple with disabilities and helping communi-ties to plan for their additional needs.
We have worked to educate our mem-bers and our constituents about their re-
sponsibility to beprepared and tobecome active intheir communitypreparedness ac-tivities. As a re-sult, we oftenhear from peopleabout their expe-riences. The sto-ries we hear areoccasionally en-
couraging, often disturbing, and sometimesso worrisome that we wonder what it willtake for communities to adequately plan forthe additional needs of their communitymembers with disabilities to avert real dan-ger. The George family story is one of those.
As Hurricane Ernesto approached lastyear, Broward County, Florida residentsLaura and Greg George were concernedabout Laura’s needs as a pregnant womanand Greg’s needs related to a recent T-5spinal cord injury.
While planning for possible evacuation,as they had been encouraged to do, theGeorges found it difficult to find an appro-priate shelter for a family with a close-to-term pregnant woman. And they wereshocked to learn there was nowhere for Gregto go. In fact, they were told he was ineligi-ble for admission to the Broward CountyShelter designated for people they refer to as“special needs!”
Throughout the many meetings andworkgroup sessions I participated in overthe past year, addressing and integrating theadditional needs of people with disabilitiesin emergencies and disasters into the Na-tional Response Plan and other initiatives,Florida was consistently held up as the “beststate” for people with disabilities to be in anemergency or disaster, due to their largepopulation of seniors and people with dis-abilities, their considerable experience inevacuation and sheltering and their need torepeatedly address the additional needs of alarge population of people with disabilities.So, frankly, I was initially skeptical about theGeorges’ story.
NSCIA has not supported plans to cre-ate separate “special needs” shelters becausethat could separate people with disabilitiesfrom their family and community support.The best approach is for all shelters to meet
the functional needs of all except individ-uals with acute medical needs. Concentrat-ing a large group of people with additionalneeds might sound logical, but in fact lim-its the available assistance of family, friendsand fellow citizens, including skilled indi-viduals employed to assist people with dis-abilities on a regular basis. And thengeneral shelters are left entirely unpreparedif the “special needs” shelter turns out to beat “ground zero” and the general sheltersbecome the only option for people regis-tered for the “special needs” shelter.
In Florida “special needs residents aredefined as persons with health-relatedproblems who do not qualify for admissionto a public shelter operated by the Ameri-can Red Cross due to the nature of theirhealth care needs”. Yet, the BrowardCounty website says special needs shelters“CANNOT accommodate persons in awheelchair who cannot transfer to a bed ortoilet without assistance, persons who areincontinent and not accompanied by acaregiver” and other exclusions. The web-site goes on to say, “People with disabilitieshave the same choices as other residentsabout whether to evacuate their homes andwhere to go when an emergency threat-ens.” But, it gives no additional informa-tion for those who will be denied access tothe Red Cross and Broward County shel-ters, and, according to the Georges, peoplewith disabilities really don’t have the samechoices about where to go. In fact, theysimply have nowhere to go.
The Georges have taken their concernsto elected officials and have tried to workwith the Broward County Office of Emer-gency Management. Recently, they weretold that OEMS was working on a resolu-tion, but as SCILife goes to press, and afterworking on this for a year, there is still noplace for Mr. George to go in the event of anevacuation and hurricane season has begunonce again.
Mrs. George reports that one individualwho works for the “Hurricane Registration”office asked if the family would considermoving or asking a doctor to “fudge” a state-ment that would establish a reason for Mr.George to be admitted to a hospital in anevacuation.
I wonder, where else are people with dis-abilities excluded and what else can we doto ensure that all communities are preparedto meet the needs of all residents and visitorsin an emergency? If the Georges are any in-dication, a lot of hard work by thousands ofpeople and a lot of tax and donor dollarshave not yet been very effective in address-ing these issues.
But that doesn’t mean we stop working– it means we work harder and, we hope,smarter, in the months and years ahead be-cause the current situation is simply not
acceptable. Everyone must take responsibility for
personal preparedness, to the best of theirability. No matter where you live, preparefor sheltering-in-place and, since we allmay find ourselves needing to evacuate,
develop an evacuation plan and work withyour community emergency managers tobe sure that your local shelters are ade-quately prepared to meet the needs of theentire community. And please let us knowabout your experiences, good and bad.
Emergency Preparedness: A Reflection of Broader Issues?
from the executive director
NSCIA BUSINESS ADVISORY COMMITTEE ROSTER
Acorda Therapeutics, IncAOLAT&T
Bank of AmericaCendant Citigroup
Darden Restaurants, Inc.Federated Department Stores
HPMcDonald's Corporation
McGuire AssociatesMedtronic, Inc.
Microsoft Corporation
Mitsubishi Electric America Foundation
Motorola Inc.
Craig H. Neilsen Foundation
Pfizer
Princess Cruises
Royal Caribbean Cruise Line
The sanofi-aventis Group
Sunrise Medical
US Micron
Wal-Mart Stores, Inc.
Emergency Preparedness ResourcesEveryone must take responsibility for personal preparedness, to the best of their ability. Pre-pare for sheltering-in-place,develop an evacuation plan, and work with your communityemergency managers to be sure that your local shelters are adequately prepared to meetthe needs of the entire community.
For information about emergency preparedness, go to:
American Red Crosswww.prepare.org • www.redcross.org • call your local chapter
Easter Seals (s.a.f.e.t.y. First program)www.easter-seals.org • (800)221-6827 (voice) (312)726-4258 (TTY)
Federal Emergency Management Agencywww.fema.gov/preparedness/ • (800)480-2520 (voice)
National Fire Protection Associationwww.nfpa.org • (800)344-3555
National Organization on Disabilitywww.nod.org/emergency • (202)293-5960 (voice) • (202)293-5968 (TTY)
U.S. Department of Homeland Security www.ready.gov • (800)BE READY (voice) • (800)464-6161 (TTY)
5May/June 2007
REAL PEOPLEREAL CHALLENGESREAL SOLUTIONS
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Bring this coupon to Abilities Expo for FREE admission and save the $5 on-site registration fee.Coupon must be filled out to be valid and may be photocopied for additional registrants.
San Antonio, TX New York Metro, NJJanuary 26-28, 2007 April 27-29, 2007
Long Beach, CA Minneapolis, MNJune 15-17, 2007 September 7-9, 2007
By Harley Thomas,President, NSCIA
After more than two years of high-visi-bility and public debate, federal uni-versal health care proposals failed in
1993 and 1994. Since that time there hasbeen much debateand many propos-als regarding uni-versal health care,however most de-bates have revolvedaround incremen-tal health reformswhich would affectboth private and
public health insurance. On the state level,passage of major managed care comprehen-sive consumer rights laws, the Health In-surance Portability and Accountability Actand State Children's Health Insurance Pro-gram have moved much of the legislativedebate further away from universality.
Proposed versions of health care re-form have been individualized by state leg-
islatures and a majority of these are basedon the single-payer model. This approachconsolidates Medicare, Medicaid, stateprograms and private insurers into a singleadministrative structure within the state.
In 2005, there were no less than 42pieces of legislation in 18 states introducedto reform state health care. Health care re-form was hot in legislatures across the na-tion in 2006 and the forecast for 2007may be even hotter. Fueled by the increas-ing number of uninsured Americans, thedeclining number of employers offeringinsurance to their employees, the im-proved fiscal conditions in the states andthe lack of federal action, states are leadingthe way in health care reform.
Massachusetts and Vermont passedlaws in 2006 to achieve universal (ornearly universal) coverage, as well as ad-dressing cost and quality. The new pro-gram in Massachusetts requires people tohave health insurance by July 2007. Ver-mont’s law, which includes access to sub-sidized or lower cost insurance, relies onvoluntary participation. Covering alluninsured kids is the goal of Illinois’ All
Kids program that began July 1, 2006.Pennsylvania followed Illinois’ lead ex-panding the State Children’s Health Insur-ance Program.
Other states adopted more incrementalreforms to focus on the 8 of 10 uninsuredAmericans in working families, many ofwhom work for small businesses that can-not afford coverage. Arkansas, Kentucky,Montana, Oklahoma, Rhode Island andTennessee are among the states with newlaws and programs to reduce the cost of in-surance for small employers.
At least seven states in 2006 targetedcoverage for young adults, the fastestgrowing segment of the uninsured popu-lation. These laws allow young people,who otherwise would be dropped fromcoverage at age 19, to remain covered ontheir parents’ policy regardless of their en-rollment in school.
The Current Status
Health reform will remain a priority in2007. Several states, including Illinois,Colorado, Louisiana, Maine, Maryland,New Mexico and Washington, have com-missions charged with creating recommen-dations for expanding coverage andreforming health care. Political leadershipin other states including California, Col-orado, Florida, Indiana, Ohio, Oregon,Minnesota, New Jersey and Wisconsin arepoised to act in 2007.
Thirty proposals have been introducedin 16 states this year. Only one has beenenacted.
The 2008 Presidential Race ImpactOnce again presidential hopefuls are all
putting forth their own vision of universalhealth care. Some candidates have statedit will be their number one priority if theyare elected; others are a little more conser-vative and say it will take time to get itright. Over the next 18 months there willbe a deluge of proposals and discussions.
If a truly government regulated univer-sal health care system were to be enacted,it would probably utilize the single payerconcept. What would this mean to thoseutilizing Medicare and/or Medicaid, theuninsured and those that are working andhave company sponsored health care? Theanswers to these and many other questionscould have a significant impact on individ-uals with disabilities.
Although the concept of universalhealth care could produce a level playingfield for everyone, undoubtedly there willbe some holes in the system and tradition-ally, individuals with disabilities, the un-employed and folks on the low end of thepay scale end up falling through thoseholes.
The probability of a universal healthcare system being enacted in the next fiveyears is slim. It is not known exactly whatproposals will be suggested or introduced.
Everyone, especially those with disabil-ities, must remain guarded and keep awatchful eye on any attempts to adopt auniversal health care system to ensure thatthe health care needs of people with dis-abilities are adequately addressed.
from the president
Keep a Watchful Eye on UniversalHealth Care Proposals
6 May/June 2007
Continued from page 1
help Fitzpatrick learn what accommoda-tions he needed for maximum efficiencyand help build his self-confidence. By com-bining funding sources, the CustomizedEmployment Partnership created a three-month work experience in the One-StopCareer Center’s Sales and Service LearningCenter. In addition to the work experience,Fitzpatrick was able to test different devicesand software that would benefit him whenhe re-entered the competitive workforce.By the end of the three months, Fitzpatrickwas ready to return to school to get his cer-tificate in Paralegal Studies. Today, he isworking 30-plus hours a week as a certifiedparalegal. Hill’s job search journey alsostarted at his local One-Stop Career Center,the Hamilton Job Center, which was work-ing in tandem with Montana Choice, an-other Customized Employment Projectfunded by ODEP.
Hill was tired of doing nothing and hewanted to work. His first obstacle wastransportation. While he owned a car, heneeded hand controls. Montana Choicewas able to identify funding for this pur-pose. Even though he could now get to jobinterviews, Hill didn’t really know what hewanted to do. He lived in a small, primarilyrural community, so the options were some-what limited. Through the discoveryprocess, the Montana Choice staff foundhis interest in working with his hands and,
specifically, in welding. He previouslylearned welding from his father, and took awelding course in high school. The Cus-tomized Employment Project worked witha local employer, Hacienda Iron Crafts,Inc., to develop a month-long work experi-ence for Hill. Montana Choice paid hiswages while he tried out the job and wasobserved by his supervisor at Hacienda.
Although he didn’t have the technicaltraining, he did so well that he even starteddoing design work during this work experi-ence. Recognizing Hill’s intrinsic and in-stinctive understanding of the work,Hacienda offered him a permanent position.In assessing Hill’s accommodation needs, thecompany decided to follow universal designprinciples and make modifications thatwould benefit all of its employees. Tableheights, for example, were adjusted not onlyto fit Hill’s wheelchair, but also to be a com-fortable seating height for other workers. Aspecial, lowered vice helped everyone workon heavy equipment.
Hill’s supervisor, Colby Sweat, says thatthere was no altruistic motive in hiringhim. “I saw what a good worker he wasand I wanted him around. He is a quickstudy. All I need to do is say this is what Ineed and I know I’ll get exactly what Iwant. If he can reach it, he can do it! Insome instances, he has surpassed my skills.”Hill has now worked at Hacienda for twoyears and says he has loved every minute ofit. In addition to Hill and Fitzpatrick’s per-sonal Customized Employment success sto-
ries, ODEP’s preliminary research on theCustomized Employment DemonstrationProjects shows successful results for manyother individuals with disabilities and insome cases individuals with compound dis-abilities.
Customized Employment is particu-larly beneficial for individuals with andwithout disabilities who have significantbarriers to searching for employment usingtraditional methods. As demonstrated bythe examples above, Customized Employ-ment is based on four key elements:
• Meeting the job seeker’s individualneeds and interests.
• Using a personal representative to assistand potentially represent the individual(This representative can be a counselor,job developer, advocate, employmentspecialist or other qualified profes-sional).
• Negotiating successfully with employ-ers to meet their needs.
• Building a system of ongoing supportsfor the job seeker.
A research sample of 536 individualswith disabilities previously considered un-employable validates that CustomizedEmployment produces high-quality employ-ment with increased wages, benefits and in-tegration into the community. The researchsample encompassed a population of variedethnic diversity and types of disabilities. Thepreliminary findings show:
• 96 percent are earning above minimumwage, with an average hourly income of$8.60.
• 40 percent are earning more than $8.15per hour.
• 33 percent obtained full-time employ-ment (more than 35 hours a week).
• Almost 30 percent are receiving at leastone fringe benefit, such as health insur-ance, paid sick and vacation time, pen-sion or retirement plans.
These preliminary findings have cer-tainly been promising. ODEP is doing amore comprehensive analysis with a largersample and will be releasing final results onthese projects within the next few months.Most important, however, is the fact thatODEP’s research has produced changes inthe way employment systems are organizedand operated, resulting in more effectiveservices and outcomes. Individualizationand negotiation are becoming new ways ofthinking about job matching and relation-ship-building with employers, not just forindividuals with disabilities, but for every-one. As such projects and processes arereplicated throughout the United States,we expect to see many more success storiesabout individuals with SCI and other dis-abilities. For more information on Cus-tomized Employment, I invite you to visitODEP’s website at dol.gov/odep/cate-gories/workforce/cust_emp.htm.
Customized Employment...
Nominations for 2007 Spinal Cord Injury (SCI) Hall of Fame™
now being accepted!
For more information, visit www.spinalcord.org or email [email protected].
Formed by NSCIA in 2005, the SCI Hall of Fame was created to celebrate and honor individuals and organizations that have made significant
contributions to quality of life and advancements toward a better future for all individuals
with spinal cord injury.
If you have a spinal cord injury or have been diagnosed with multiple sclerosis, and suffer
from incontinence resulting from an overactive bladder, we invite you to fi nd out if you qualify
for the Dignity Study. The purpose of the study is to determine the effectiveness and safety
of an investigational medication for controlling symptoms of overactive bladder in patients
with these conditions. Physicians in your area are conducting the Dignity Study. Investigational
study medication, medical exams, and lab tests will be provided to you at no charge.
To learn more, and to fi nd a participating physician
in your local area, visit www.DignityStudy.com.
IS AN OVERACTIVE BLADDER CAUSING
YOU TO LIVE AN UNDERACTIVE LIFE?
Naomi Ortiz is one of the most dynamicand articulate young disability rightsactivists today. She was one of the
founders of Kids as Self Advocates (KASA),a project of Family Voices. KASA was cre-ated by youth with disabilities for youth toeducate society about issues concerningyouth with a wide spectrum of disabilitiesand health care needs. KASA believes insupporting self-determination, creating sup-port networks and proactive advocacy for allyouth with disabilities.
KASA relies heavily on technology as anorganizing tool. Members may see eachother once a year or so, but they meet andsocialize frequently on the Internet, via list-serves and by phone.
Ortiz is 28 years old, lives in Tuscon, AZand has a mobility disability. “Disability isan identity for me, just as being Latina is,”she says, “so I usually do not specify themedical label.” SCILife staff writer SantinaMuha recently interviewed her about organ-izing people with disabilities to create posi-tive social change in the past, present andfuture.
Santina Muha: Tell us a little bit aboutKASA and how you became involved?
Naomi Ortiz: KASA came into existenceout of the National Youth Leadership con-ference. Some other young people and Iwho were attending the conference met astaff person from Family Voices wanting tosupport a youth-run project. We were con-cerned that all the people presenting at theconference were adults, often speaking in in-accessible language and were rarely even dis-abled. KASA was born to give young peoplea voice in what affects them and we believethat youths' experience and skills are valu-able to help other youth and society.
Our theory of change is that KASA be-lieves young people will have control overtheir own lives and futures. We do thisthrough informing youth about their rights,providing peer support and training andchanging systems to include youth. I waspart of the founding of KASA. I have servedas the co-chair of the board, a consultantand now as a paid staff member. I am ex-cited to see KASA grow and to bring in new,younger youth on as staff and consultants.
SM: Why and how do you use technologyto communicate and organize?
NO: We are a national group with a smallbudget. The easiest way to meet was over thephone and through the Internet. We try andmeet in person at least once per year, butworking virtually lets us stay in contact andwork on things which are important to us,together.
Over the past 8 years, we have developedall kinds of resources written by youth foryouth which we share over our website andat conferences. Building community overthe Internet and phone has really worked forus. One positive outcome that surprised meis that advocacy has been able to be less con-frontational and more collaborative whenwe are working together virtually with or-
ganizations, groups or agencies.
SM: Do you think the Internet makes it eas-ier to connect with people in today’s age?
NO: I think the Internet has helped peoplestay in contact even after just a brief in-personmeeting. It is easier to contact legislators andcommunity members to share opinions andconcerns. I think it’s also really been helpfulto the disability community. Our communityis pretty isolated. We often do not have par-ents tied to the disability community solearning about community values and dis-ability culture can be really hard. Actually,just even meeting other disabled people whoare beyond self-pity and believe they haverights and dignity can be hard. So being ableto connect with technology has made con-necting to create vision and change easier.
SM: How do you feel reliance on this typeof communication has hurt activism?
NO: Many people in our community donot have access to the Internet, etc. We workhard to involve young people without Inter-net access in KASA by providing phonecards and using regular mail, but it is slowerand feels more disconnected at times.
SM: Do you feel technological competencegives young advocates an advantage overveteran advocates/activists?
NO: Perhaps. Young people are expected touse the Internet in school and friends as-sume they use online networking such asmyspace and facebook. So young peopletend to be more familiar with it and tryingto figure out how it works. But I think olderpeople use technology, or can learn to use it,to connect with others and to do activism. Itdepends on the person.
What I do think is a disadvantage for eld-ers in the movement is the lack of acceptanceor maybe connection to ideas a lot of youngerpeople with disabilities have like disabilitypride and culture. Older people in the move-ment often relate disability pride to societyperceiving them as “normal” or “least dis-abled as possible.” Disability pride for youngpeople in the movement is much more aboutbeing proud of being disabled and not seeingdisability as a negative or bad thing.
Ideas seem to separate the generationsmore than technology.
SM: How did you learn about great pastleaders like Justin Dart and Ed Roberts,since you don't learn about such historyin school?
NO: I actually learned about Ed Robertsfrom a friend of mine named Marlin whowas disabled and had done reading on dis-ability history. I then read about him myselfin books like “No Pity” by (NSCIA Hall ofFame inductee and NPR correspondent)Joseph Shapiro, but it is really hard to findinformation! I learned about Justin from thesame friend when he became super exitedthat we were going to have a chance to seeJustin speak. I could not understand whyMarlin was gasping with excitement over
this old white guy. But as I’ve talked toJustin’s wife, Yoshiko Dart, met elders in themovement and read some of his writing, Ihave grown to profoundly respect him. Ba-sically I learned by word of mouth and bythe few writings I could get my hands on. Ireally wish more was documented and com-piled in an accessible location or on the In-ternet.
SM: Do you think young people today andtomorrow will step up similarly to suchgreat advocates? How will they do thingsdifferently or the same?
NO: I think they already are. You havenewer leaders such as Sarah Triano creatingthe first Disability Pride Parade. There areyoung people with disabilities starting theirown advocacy groups or campus groups andnow demanding to be part of the disabilitycommunity not just as youth, but as leaders.
I think future leaders will bring the dis-ability movement from working primarily onservices and policies to a social justice/cul-tural movement that includes policy andservices but is not defined by it.
SM: What do you think about the 504sit-ins?
NO: I had a chance to see video clips fromthe sit-in in San Francisco. I loved seeing allthe hair and clothing styles from the 1970sand how passionate and beautiful the dis-
ability community was during that protest!The two coolest parts were how people ofall different kinds of disabilities came to-gether and how other social justice groupshelped support the protest. The Black Pan-thers, the Butterfly Brigade and othersstepped up to support something which cre-ated radical legal change in terms of access.I would LOVE to learn more about howthose connections were created, how theywere maintained and what we could dotoday to reconnect in a real, supportive waywith other social/cultural groups.
SM: What made you decide to become anactivist?
NO: This is like the hardest question ever. Ibecame an activist because I care about theworld around me and think that we all havethe right to exist. I attended my first protest,much to the horror of my family, when I was12. I got an abusive bus driver fired throughmy activism when I was 13 and have workedon U.S./Mexico border issues since I was inmy teens. I ran a conflict resolution projectin schools and in the local prisons when I was19. I was a founding member of KASA whenI was 20. The way my family was treated, theway the earth was treated, the way I wastreated, just didn’t make sense to me. So, Iwanted to change it.
For more information about KASA andNaomi, visit www.fvkasa.org.
7May/June 2007
Speaking Out in the 21st Century:Naomi Ortiz
Got a Story? Share it!"I know what it's like to face a life changing event like a spinal cord injury,
and how much the right support can mean to someone in those first few days and weeks after the injury. I've been truly blessed in my life and this is a chance for me to make a difference for others."
-- Soul music legend and SCI Hall of Fame member, Teddy Pendergrass
The Teddy Pendergrass Alliance and NSCIA are developing an interactive DVD to 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
Naomi Ortiz.
8 May/June 2007
By Bill Fertig,NSCIA Resource Center Manager
Most individuals with a new SCI or theirfamily and friends have been thrustinto a foreign world of unfamiliar
medical terminology, uncertain futures andunknown legal ramifications or direction.Often the long term legal implications oftheir injury take a back seat to the more im-mediate needs of acute care followed by theforeign world of SCI rehabilitation. TheNSCIA Resource Center receives thousandsof phone calls and email inquiries each yearfrom people from across the nation andaround the world. Requests for informa-tion and resources are broad, and often in-clude a request for legal resources. A newsection on the NSCIA website(www.spinalcord.org) offers helpful infor-mation. The new legal resources sectionon the web site affords members as well asnew visitors information about personalinjury litigation, the Americans with Dis-abilities Act (ADA), physical and programaccess, how to locate a qualified personalinjury attorney in your area and other cru-cial legal issues. A link to the legal re-sources section can be found on theNSCIA home page and can also be
reached directly at http://www.spinal-cord.org/ legal/.
Topics on the legal resources page are di-vided into broad categories to aid yoursearch.
Personal injuryMany who call the resource center have
been dealing with health, healing, housingor adjustment problems. These issues can beso overwhelming that the caller has yet toformulate a direction for addressing the legalissues they or their family members face.Whether the cause is a motor vehicle acci-dent, a fall at work or other occurrencewhere liability may be an issue, this sectionprovides focus and speeds the search forlegal assistance.
ADA and AccessThe ADA prohibits discrimination in
places of public accommodation and inspecified public transportation services.Most people are either somewhat familiarwith the ADA or have at least heard of it.The legal resources section offers a succinctoverview of ADA history and how it ispractically applied. Are you traveling by airor sea for the first time since your SCI?This section can also familiarize you withyour rights to accommodation in theseareas. The accessibility rights of individualswith disabilities are very specific and canassist people with SCI to live actively intheir community and as travelers.
How about your local polling place?Can you park, enter without assistance andvote as easily as a person without a disabil-
ity can? Voting is a precious right! If youare a person with a long standing disabilityyou have likely faced voting accessibility is-sues. Sure you can still vote by absenteeballot, but the legal resources section pro-vides information on asserting the rightto vote at the same time and place as othervoters.
Clinical trialsAre you interested in participating in a
SCI clinical trial? You will need to examinethe possible recovery benefits comparedwith the risks involved in participating in agiven trial. Other key points to keep inmind if you’re considering participation in atrial include purpose, location, paymentmethod and follow-up care. Have youthought how this might affect your partici-pation in future trials?
Hiring a Personal Assistance Services ProviderWhat liabilities are there for you in hir-
ing your personal care attendant (PCA) as aprivate contractor versus through anagency? You may be unfamiliar or uncom-fortable in this new role as an employer.Your PCA must be managed as any otheremployee and understandable guidelinesmust be set for a successful employer/em-ployee relationship.
How you use the spinalcord.org legal re-sources section is up to you. If additionalassistance is needed please contact theNSCIA Resource Center at 1-800-962-9629 or by email at [email protected] staff is prepared to assist youwith your search for information.
Legal Resources and SCI
SAVE THE DATE!Join us in recognizing excellence as we cel-
ebrate and honor those who have madesignificant contributions to
quality of life and advancements toward a better future for all
individuals with SCI at the third annual
Spinal Cord Injury (SCI) Hall of Fame Gala
November 6, 2007
The Kennedy Center for the Performing Arts
Washington, DC
For information, visit www.spinalcord.org
Attorney Ronald R. Gilbert
Attorney for the Spinal Cord Injuredif you, a friend or loved one, has been injured by: (1) Aproduct or use of a product (e.g. helmet, vehicle even if it is aone vehicle accident and you are the driver, ladder, trampolinemore), (2) On someone else’s property (e.g. falls, gunshot,recreation or athletic events more), (3) During a medicalprocedure or as a result of a prescription drug — YOU MAY BEENTITLED TO ECONOMIC RECOVERY.
Put the nation’s top personal injury specialist to work foryou. Ron Gilbert has helped over 300 spinal cord injuredpersons in 35 states collect the compensation they deserve. Ifyou have suffered a spinal cord injury, he will try to help you.
Compensation from successful and responsible litigationcan open doors to a better life.
Some of Ron Gilbert’s many efforts to help the spinal cordcommunity include:
• Served as Secretary and member of the Board of Directorsof the National Spinal Cord Injury Foundation.
• Received a Certificate of Appreciation for Prevention workfrom Michigan PVA.
Time may be working against you. A rule of law called theStatute of Limitations puts a time limit in which you may file aninjury claim. This time can be as short as one year. If you havebeen seriously injured, time may be running out. Don’t wait.There is no cost to talk to Ron.
For help, call Ron Gilbert today for a free review of yourlegal options. He’ll provide legal help as well as assistance inplanning, and coping with the physical, emotional and otherchallenges you face.
If 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
OPTIONSFOR VICTIMS OF
SPINAL CORD INJURIES• Financing The Future: Managing
Disability-Related Expenses
• Liability, Compensation And Your Rights
• Legal Options
• Improving Safety Through Legal Action
• Finding And Choosing An Attorney
• Getting Help: A Guide To Organizations
• For Details, Go To Ron’s Website —www.fscip.org For Legal Options AndProfessional Help.
Who’s Who in American Law1985 through present
Advocate for the Spinal Cord InjuredPut the nation's top personal injury specialist to work for you. Ron Gilbert has helpedover 200 spinal cord injured persons in 35 states collect the compensation they deserve.If you suffered a spinal cord injury, maybe he can help you.
Compensation from successful and responsible litigation can open doors to a bet-ter life. With the high cost of disability related expenses, you need to know all your op-tions. It takes an experienced, committed, caring specialist to make the system work foryou.
Among Ron Gilbert's many prevention and advocacy efforts, he has:
° Founded the Foundation for Aquatic Injury Prevention and the Foundation forSpinal Cord Injury Prevention, Care and Cure (www.fscip.org).
° Served as Secretary and a member of the Board of Directors of theNational Spinal Cord Injury Foundation.
° Received a certificate of appreciation for Prevention work from theMichigan PVA.
° Served as a member of the SCI/TBI Advisory Committee - Michi-gan and Vice Chairman 1988 - 1996.
Time may be working against you. The rule of law called the Statuteof Limitations puts a limit on the time in which you may file an injuryclaim. This time can be as short one-year. If you have been seriouslyinjured and haven't talked with a lawyer, time may be running out.Don't wait. It won't cost you a cent to talk with us. And it may be themost important telephone call you'll ever make.
To get started, call Ron Gilbert today for a free review of your legal options. He'll pro-vide legal help as well as assistance in planning, networking and coping with the phys-ical, emotional and legal challenges you face.
If you have suffered a spinal cord injury, call today to receive a free legal consultationand complementary membership in the National Spinal Cord Injury Association, includ-ing the publication Options, a complementary copy of Spinal Network and a hand-book on legal options for survivors of spinal cord injuries.
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
9May/June 2007
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11May/June 2007
MAKE A DIFFERENCE
As a volunteer on one of NSCIA’s committees, youcan make a difference by…
…building resources.
…raising voices.
…growing our membership.
Become part of our growing national force forchange. Meetings are held monthly via
teleconference at no cost to members, and yourtime commitment is flexible.
For more information or to apply to be on a committee, contact:
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.
Wilkins believes you can find disabilityin every subject and is pleased to finallystart to see the topic discussed in main-stream education. “If we don’t teach stu-dents in elementary school that one of ourgreatest presidents had a disability, then weperpetuate the myth that people with dis-abilities don’t contribute to our society.”This desire to educate can be found withinWilkins’ business, but with a twist ofcomedy.
With a shirt in the Smithsonian Institu-tion’s Museum of American History andvarious posters in schools, Wilkins has con-
tributed to disability culture as only hecould. The Nth Degree sells a black t-shirtwith a white image of a boy sitting in achair thumbing his nose and sticking histongue out. It reads, “There comes a timewhen even the best advocates need a dayoff.” For Wilkins, those days are few andfar between, as his advocacy begins fromthe moment he wakes up and gets dressedin one of his very own designs.
Visit www.thenthdegree.com to shop for nthdegree designs.
Simon Roulstone formed Apparelyzedin 2003, a company which offers hu-morous and inspirational quotes for
those with disabilities through t-shirts andtank tops.
Roulstone, who was a passenger in acar crash in the United Kingdom in 1992which resulted in C5 quadriplegia, begandesigning t-shirts to spread disabilityawareness. He says, “I put into my designssome of the everyday thoughts that wewish to say in reply to some of the frustra-tions experienced by those with spinalcord injuries.”
While the demand for such apparelmay be considered to be limited, it is al-ways positively received by those who pur-chase and wear it. Roulstone explains,“T-shirts have been used for years to show
how people feel about society’s attitudesand perceptions.” One of Roulstone’s fa-vorite designs is that of a wheelchair useron a surfboard riding a wave and it reads,“Think Different!” Roulstone says, “Ithink this is the design which encompassesthe required attitude in living life withparalysis.”
Like Dan Wilkins, Roulstone says theobjective of Apparelyzed is not to make aprofit. Instead, he aims to spread disabil-ity awareness and encourage self-help andpeer support among those with spinal cordinjuries.
Visit www.apparelyzed.com to shop for Ap-parelzyed designs.
By Santina Muha,SCILife Staff Writer
To take something to the nth degree isto take it as far it can possibly go, andthen take it further. That is what Dan
Wilkins and his business are all about –pushing the boundaries.
Wilkins, in a nutshell, is a creative,witty, funny guy who has enough talentand drive to promote inclusion throughart and clothing of his own design.
Wilkins, who was spinal cord injuredin 1980 at age 23 in a motor vehicle acci-dent, remembers what life was like whenhe was just a “white male in society.” Hesays, “Prior to my accident I didn’t knowoppression. I supported all rights, butnever felt it personally.” Now, a C5/6 in-complete quadriplegic, Wilkins has a clearpicture of what it’s like to feel isolated. Heuses his great sense of humor, artistic abil-ities and strong belief in independent liv-ing to bring the feeling of inclusion backto those who need it the most.
His sense of humor was never lacking,even in rehab, as Wilkins often crackedjokes during exercises. Wilkins recalls howhis doctor took his disability more seri-ously than he did. In the midst of laugh-ing with his nurses, Wilkins’ doctorentered the room and questioned whetherhe fully understood how serious this situ-ation really was. After all, Wilkins wouldnever walk again. He responded, “I guessI’ll save a lot of money on shoes.”
Continuing to find himself in undeni-ably humorous situations led Wilkins tocreate the Nth Degree. Wilkins calls it, “aplace where people can come to find infor-mation, understanding and solidarity andto share talents, skills and stories.” Hewould constantly blurt out a typical com-
ical statement and then say to himself,“That would make a great t-shirt!”
When going out to a bar or restaurant,Wilkins often chooses a black shirt he de-signed with a symbol of a wheelchairtipped on its back. The shirt reads, “Iffound walking, please remind me that I’mparalyzed.” Wearing a shirt such as thisone, Wilkins finds, allows no room forpity from bystanders. “What they’rethinking is, ‘I guess if he can be cool withhis disability then I can be too.’” Many ofhis designs, such as a shirt that reads, “BeJust, Just Be,” and other peace driven but-
tons and bumper stickers cross into othermovements.
The Nth Degree, for Wilkins, is not asmuch about making money as it is aboutmaking a difference in the world. He sethis prices in 1990 and hasn’t raised themsince. Wilkins is touched by the com-ments he receives after someone purchasesa shirt from the Nth Degree and allows theslogan to speak for itself. “Here’s the com-ment I get most: ‘I get in more conversa-tions about real issues when I’m wearingyour shirts…’ and to me, that’s gold. Be-cause if we don’t get a dialogue going,nothing changes.”
Four years after his accident, Wilkinsfound NSCIA as a resource. He soonstarted a chapter in Northwest Ohio withhis mother. He served on the nationalboard, but stepped down after his mother,who was also his business partner, passedaway, leaving him both grieving and han-dling all of her duties.
Currently he is on the Curriculum De-velopment Committee and DisabilitiesStudies Advisory Board at the Universityof Toledo. He believes, “Disabled studiesare so valuable and needed and intrinsic tolife.” He gives credit to the University ofToledo for being progressive enough to askhim to assist them with the curriculum.
Disability as a Fashion Statement: Dan Wilkins
Paralyzed? Get Apparelyzed!
Dan Wilkins with his son,Taylor, and wife, Beth.
scilife16:SCILIFE 6/28/2007 9:04 PM Page 13
14 May/June 2007
Continued from page 1her own disability consulting firm (debo-rahkaplan.com). In 1977, she was a younglawyer, having recently moved to Washing-ton, D.C. from Berkeley, where she estab-lished a new organization, the DisabilityRights Center (DRC), with support fromRalph Nader. Newly-elected President ofthe United States Jimmy Carter had prom-ised as a candidate to get the 504 regula-tions out promptly. But, Kaplan says, whenDRC and other groups met with HEW of-ficials after the inauguration, they were toldthat the agency would not take action on504 any time soon because it was very po-litically controversial.
“We were all flabbergasted because we as-sumed that a new Democratic administra-tion would be friendly to the cause of civilrights, but we were not prepared for the re-ality, that we were pretty much the only onesin town who were comfortable placing theword ‘disability’ in front of the phrase ‘civilrights.’ To have gotten so close, only to be re-buffed by the Democrats, was galling. Weknew that colleges and universities were lob-bying against the regulations, saying that im-plementation would be enormouslyexpensive, and for only a handful of people.”
So the American Coalition of Citizenswith Disabilities (ACCD), a Washington-based disability rights organization withchapters in many states, sent a letter toPresident Carter and Secretary of HEW,Joseph Califano warning that if the regula-tions were not signed by April 5, 1977 ac-tion would be taken.
The deadline passed.
Kaplan recalls, “We entered the HEWbuilding for another meeting with the offi-cials who were working on the regulations,and when they told us they had nothing, westarted our sit-in. We went to Califano’s of-fice demanding to speak to him, but hewasn’t in town. People at HEW were totallyunprepared. I don’t think it had ever enteredtheir minds that we might stage a sit-in.”
Kaplan and others spent the night sleep-ing on the floor, but they hadn’t prepared fora long siege. They didn’t bring much foodor medication and security police cut off allof their provisions. “They had the area thatwe occupied cordoned off from the rest ofthe floor. At one point an employee tried tocome over with some food. The securityguards wouldn’t let him through and a scuf-fle broke out as he started throwing applesand bananas our way.”
The isolation eventually forced them toretreat. Kaplan says a protestor who wasdeaf could not get the heart medication heneeded so everyone left after about 28hours with a vow to keep up the pressure.There were also short-lived demonstrationsin New York, Boston, Denver and Atlanta.“When we got back home and to our of-fices,” Kaplan says, “we heard about theSan Francisco sit-in and we were thrilled.”
Heumann says spirits were high and re-solve was strong in San Francisco. “We hada very strong coalition of disability organi-zations and other organizations and wewere very well organized. I think we feltvery powerful. We had a very strong andcommitted group of people who were stay-ing until it was finished.”
The siege was also bolstered by a tremen-dous display of community support. Food
was donated by local grocery stores and de-livered by members of the Black PantherParty. Labor unions and religious groups do-nated money and sent members to help.
Yet, after about a week there was still astalemate. HEW would not negotiate. SoHeumann and a few others left the SanFrancisco office and flew to Washington,D.C. to apply more pressure. They held acandlelight vigil outside Califano’s home.They gathered outside the church PresidentCarter attended.
Press coverage was extensive locally, na-tionally and internationally. EventuallyHEW returned to the negotiating table.Agreement was reached but before it wasmade official a draft of the proposed regu-lations was sent to the San Francisco ac-tivists for their approval. When they gavethe thumbs up, Califano signed and the ac-tivists went home and reveled. Kaplan says,“I remember having a huge victory celebra-tion at our house with a Thanksgivingturkey dinner. It was a great feeling to bepart of a national movement that was per-sistent and wouldn’t give up.”
A great deal of the accessibility that iscommonplace for younger generations ofpeople with disabilities is due to the strengthof Section 504 of the Rehab Act. And a greatdeal of the strength of Section 504 is due tothe actions of those who put themselves onthe line 30 years ago. At the commemora-tion, Stein said, “It’s regrettable that to thisday, high school history textbooks give justthat single sentence in talking about either504 -- if they talk about it at all -- or ADA.They say that these laws were somethingpassed by congress or signed by a presidentand essentially were something given as a gift
to people with disabilities. Period.”But Heumann says each new generation
of activists is bound to face a similar definingmoment. What can they learn from thischapter of history? “We were able over timeto get the attention of the national and in-ternational press and to get the averageAmerican to have a clear understanding ofwhy what we were saying was more than rea-sonable,” she says. “Younger people shouldrealize that we really tried to connect 504 notonly to the disabled community, but to thegeneral society. What would the benefits beto the general society overall? Not just peoplewith disabilities. We explained why what wewere doing was in the best interest of theirfamily and to themselves, and I think therewas a segment of society that learned thatand agreed with it. I think most peoplethought we were quite reasonable and com-mitted to a principle.”
Kaplan says, “As I look back on thoseevents, I conclude that we were a product ofour time. Protests and sit-ins were the markof a successful social movement. Today,there are more ways to influence people andchange their minds. With our past successes,we have gained a status quo to defend andamend. Today, people with disabilities arerunning for public office and getting ap-pointed to positions of authority within po-litical parties. We don’t have the amount ofvisibility or power that we would like, butit’s a very different game today than it was30 years ago.
Young people with disabilities know thestrategies and goals that fit their time inhistory. I hope they will be inspired by ourstory to make their own mark on theworld.”
Historic Protest Victory ...
By Len Zandrow,NSCIA General Counsel
The Rehabilitation Act of 1973 is land-mark legislation. It is widely consideredthe first civil rights statute in the world
for persons with disabilities. Its earliest dayswere checkered, however. For more than
three yearsafter its enact-ment, no im-p l e m e n t i n grules had beenissued and theeffect of theRehabilitationAct remainedmore cosmeticthan real. Ittook strong
grassroots pressure, which culminated inmassive demonstrations and sit-ins (seefront page article in this issue of SCILife),to persuade Congress to pass regulationsunder Section 504 in late April 1977. Thisarticle briefly summarizes the RehabilitationAct’s key provisions and how they have af-
fected disability rights these past 30 years.The Rehabilitation Act is a national law
and is published in the U.S. Code at 29U.S.C. Section 794. Its implementing reg-ulations are published in the Code of Fed-eral Regulations at 40 C.F.R. Part 7. Theselaws protect “qualified individuals with adisability” from discrimination. They applyto all employers and organizations in thecountry that receive financial assistancefrom any federal department or agency.
Under Section 504, individuals withdisabilities are defined as persons with aphysical or mental impairment that sub-stantially limits one or more major life ac-tivity. These activities include walking,seeing, hearing, speaking, breathing, work-ing, performing manual tasks and learning.Spinal cord injury and disease (SCI/D)qualify as a disability under Section 504.
The Rehabilitation Act prohibits dis-crimination in the availability, accessibilityand delivery of program benefits and serv-ices. As a result, an employer or organiza-tion that receives federal funds may not:
• Deny persons with SCI/D the equalopportunity to participate in, or bene-fit from, federal programs and services.
• Deny access to programs, services orbenefits because of physical barriers.
• Deny employment opportunities, in-cluding hiring, promotion, training orfringe benefits for which persons withSCI/D are otherwise entitled.
Section 504 became controversial soonafter the enactment of its implementingregulations. Many lawsuits were filedagainst certain target defendants – mostnotably airports, colleges and universitiesand public libraries. Throughout the Rea-gan administration, efforts were made toweaken the statute’s civil rights protections.These efforts failed. Instead of limiting
Section 504, Congress ultimately expandedits protections to include much of the pri-vate sector when it adopted the Americanswith Disabilities Act in 1990.
The Rehabilitation Act paved the way forthe ADA’s enactment. While both statutesprohibit discrimination against individualsbased upon their disability, the scope of thetwo laws is much different. The Rehabilita-tion Act is limited to federal agencies, con-tractors and other recipients of federal funds,while the ADA applies to all private employ-ers with more than 15 employees, as well asstate and local governments.
Although the Rehabilitation Act’s lan-guage does not specifically say so, thecourts have ruled that persons have a pri-vate right of action for monetary damages
under Section 504. The U.S. SupremeCourt clarified this right in 2002 in theleading case of Barnes v. Gorman. In thatcase, the Supreme Court also held that theremedies for violations of the RehabilitationAct are “co-extensive” with the remediesavailable under the ADA. Because much ofthe terminology in the ADA mirrors that inthe Rehabilitation Act, the federal courtshave consistently looked to cases construingSection 504 for guidance when decidingADA challenges and vice versa. See, for ex-ample, Cummings v. Norton, 393 F.3d1186, 1190 n. 2 (10th Cir. 2005).
Remedies under the Rehabilitation Actand the ADA include monetary damages,but not punitive awards. A detailed dis-cussion of liability under these laws wouldbe beyond the scope of this article. In gen-eral, however, decisions regarding eligi-bility, entitlement, discrimination and rea-sonable accommodation must be deter-mined on a case by case basis.
While the battle for equal rights is farfrom over, the 30-year history of the Re-habilitation Act and its implementing reg-ulations represents an important successstory. The dogged determination of thedisability community first caused the Sec-tion 504 regulations to be issued in 1977and then fostered a further expansion ofrights in 1990, with p assage of the ADA.In disability law, like life in general, perse-verance has paid off.
What the Sit-ins Wrought The Rehabilitation Act’s 30-Year Legacy
15May/June 2007
Fun and Freedom on the Water By Santina MuhaSCILife Staff Writer
Angela Madsen says, “After my spinalcord injury, the only thing I couldcount was my losses and not my bless-
ings.” Her spirit was rejuvenated when shetook to the water. She discovered adaptiverowing and now she teaches it to other peo-ple with disabilities. Maureen McKinnon-Tucker quit competitive sailing for six yearsafter her SCI. But after she found othersailors with disabilities who helped her findthe right equipment, she has returned tocompeting against the elite.
Adaptive sailing is great warm weatherfun. And it’s easier than you think!
Angela Madsen’s Story: Adaptive Rowing In September 1993, I underwent back
surgery for an injury I sustained while onduty in the military. Mistakes during theprocedure led to my spinal cord injury andnow I am an incomplete L1 paraplegic. Sur-prisingly, what I’ve found is that since myfailed back surgery, I have had the most fan-tastic life!
I have excelled at wheelchair and adaptivesports. Through wheelchair basketball andCasa Colina Centers for Rehabilitation inPomona, California, I was introduced to thesport of rowing. I became a rowing coach andstarted the California Adaptive Rowing Pro-gram. I teach people of all ages with disabili-ties about rowing. I discovered that they learnmuch more than just how to row. As I did,they learn how to live through sport, how toset and accomplish goals, how to be more out-going, social and confident, how to be win-ners and how to accept losses. I get to be apart of the good that transpires in lives of thepeople I work with. I love this life. If I couldgo back in time and change it, I would not.
I used my mechanical engineering back-ground and problem solving skills to prop-erly rig boats and position adaptive fixedseat rowers in boats. I determined how to rigthe boats not only for recreational adaptiverowers but also for elite fixed seat rowers. Ideveloped rigging methods to make theboats go faster.
On my first trip to the World Champi-onships of Rowing in Seville, Spain in 2002,there were so few women in the sport thatthe double rowing event was canceled and Icompeted against men in the singles. I wona silver medal. Today I am a four-time goldmedalist. My aspirations of becoming anelite athlete will be realized when I competein the Paralympics in Beijing in 2008.
I know what it is to suffer. I know whatit is to feel hopeless. I know what it feels liketo give up on dreams and goals. I also knowwhat a mistake it is to give up on dreamsand goals.
After my spinal cord injury, the onlything I could count was my losses and notmy blessings. At the time, the losses were somuch greater and I never could see how
what had happened to me could actually bea blessing until I began moving on with mynew and different life. It is not easy to moveon into such an uncertain future. I was notseeing hope for anything positive and mean-ingful, just anticipating a life of pain andsuffering. When I began participating insports again, it was familiar. It was different,yet the same. I have never looked back orever felt as completely hopeless as I did backthen. I cannot imagine ever feeling like thatagain. I have many more blessings now tocount than I will ever suffer losses.
For more information on the CaliforniaAdaptive Rowing Program, visit www.carplb.net.
Maureen McKinnon-Tucker’s Story – Adaptive SailingIn 1995, I tripped and fell and sustained
an L1 spinal cord injury. I tried to sail onthe type of boat I used to race on before myinjury. It didn't work. My body dangled inthe cockpit while I held my body onto theboat with my left arm around a stantion.
I tried again at an adaptive program on aboat made for a sailor with a disability. Itwould have been great for a recreationalsailor, but as a former racer, I was left flat. Iquit sailing and bought a kayak and didn'tactively sail again for six years. After a chancemeeting of another paraplegic sailor whoasked what boat I was on at a regatta, I ex-plained to him that I didn't sail anymore. Heinsisted that I try a boat called Sonar. I didthe next week and he was right! I could par-ticipate on an equal level with the rest of thesailors who didn’t have disabilities. With a lit-tle more equipment, I became even better.
Later, that very same sailor invited meto join up with his team to try out for the
Paralympics. I have been hooked and racingon the adapted sailing circuit ever since!Currently, I sail on a two-person boat builtfor a sailor with a disability, but the BIG dif-ference is that it is a sport boat built for pre-cision and speed called the SKUD 18.
Today I am the adaptive sailing coordi-nator for the Piers Park Sailing Center inEast Boston, Massachusetts. I believe sailinghas empowered me psychologically, due tothe feeling that I can sail right alongsidesailors who are not disabled on an equallevel, and physically, as I challenge musclesthat I simply do not use sitting in the chair.With the right equipment and the rightboat, even a quads with just the use of theirbiceps can steer. Sip and puff boats are alsoavailable in some areas. Equipment thatmakes sailing possible for people with SCI
can be as simple as a Velcro mitt for betterhand grip, or as complex as a seat whichtacks the sailor from side to side on a track.
A public adaptive program is great placeto start!
The Piers Park Sailing program is free toindividuals with disabilities. For more infor-mation, visit http://piersparksailing.org.
Also, visit www.duxbayms.com to learnabout Duxbury Bay Maritime School in Mas-sachusetts.
To find a sailing program near you, visitwww.ussailing.org (Click “getting started,”then “Discover Disabled Sailing”).
Sailing is the great equalizer so go on, takea risk and go for a sail!! Folks...remember yourbutt cushions!
in motionAngela Madsen teaches Nikkie Fletcher,18,of San Pedro, California to row.
16 May/June 2007
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At age 20, Harley Thomas hitchhikedfrom Maryland to California and backwith $1.50 in his pocket. In 1968, he
hitchhiked from Taiwan to Hawaii withstops in Japan and Midway Island via shipand air. Not many people are brave, daring,strong or innovative enough to pull thatoff…twice! Life experiences such as thesehave led Thomas to possess the qualities thatmake him an exceptional president ofNSCIA’s board.
Thomas was introduced to NSCIA in1998. He took on the position of presidentof the executive board in 2005 and has pro-vided the association with the dedicationthat a great president should since.
“Prior to my accident,” Thomas says, “Ireally had no knowledge of SCI/D otherthan the fact that I had a neighbor withmuscular dystrophy.” Thomas was 43 yearsold at the time of his accident (whatThomas calls “really old”), when he, an avidmotocross racer, was injured during a
leisurely ride in the desert. He went to theUniversity of California San Diego MedicalCenter, where he was treated for fractures atC3, C4, C6, T5 and T6, along with neuro-logical damage and compression at the T5level. With no rehabilitation after about afive week stay in the hospital, Thomas de-scribes the first six months “quite a challengeboth physically and mentally.” Still,Thomas drove himself to and from work ina full body cast just three months after sur-gery. “Since day one I have tried to look atthe glass as half full. When someone tellsme I can’t do something, I will bust my gutto prove them wrong.”
Since his accident 25 years ago, Thomasbelieves there has been quite a societalchange for individuals with SCI/D. “Thereare many more individuals living productivelives, working, living independently andgenerally out and about in society.”
Thomas says, “I believe NSCIA hasmade a significant impact with respect topublic visibility and attitude toward those ofus using wheelchairs. I would like to thinkthat I have made some small differencethrough my many testimonies in the Houseand Senate as well as public speaking andmy visibility in public. There are many highlevel public gatherings that I attend and par-ticipate in where I am the only one in awheelchair.”
Another contribution Thomas has madeto the disability community is ColoradoSports for the Physically Challenged, Inc.(CSPC), a group he co-founded in 1985.He was president and chairman of the boarduntil 1997, when he relocated to the Wash-
ington, D.C. area.Thomas remem-bers, “During theyears I was in Den-ver, we held two na-tional juniorwheelchair sportsgames. Not onlywere kids from allover the UnitedStates involved,there were teamsfrom Australia andCanada.
“When I co-founded CSPC, Ihad a strong desireto give back tothose that in many cases never had the op-portunity to participate in sports. That de-sire still lives today and my affiliation withNSCIA and the creation of the SCI Hall ofFame is a continuation of that desire. Istrongly believe in the importance of recog-nition of significant contributions to soci-ety that the many individuals with andassociated with SCI/D have made and con-tinue to make.”
Thomas gets his inspiration from hisparents, who, he says, “instilled in me thedesire to always look for the good in every-one and everything.” Other personal heroesinclude Everett Alvarez, Jr., a Navy pilotwho was shot down in Vietnam and spentthe next eight and a half years as a prisonerof war and Joseph L. Galloway, a reporterduring the first United States major militaryengagement in Vietnam.
In fact, Thomas himself served in Viet-nam 40 years ago. He is proud of his 20years of military service. He is also proud ofbeing a good father and grandfather. “Ofall the many things I have accomplishedduring my life, I truly believe that the mostrewarding accomplishments are those that Ihave had the privilege of doing since my ac-quisition of paraplegia.”
A newlywed, Thomas lives in Arlington,Virginia, with his wife, Nancy. Thomas en-joys photography, traveling, genealogy, pol-itics and computers. NSCIA is one of fiveboards on which he serves.
According to Thomas, the followingsentences sum up his feelings: “Success inlife is getting what you want. Happiness inlife is wanting what you get.” Luckily forThomas, he is both successful and happy.Luckily for NSCIA, he is our president.
Who’s Who at NSCIAHarley Thomas, Presidentof the Board of Directors
board profileHarley Thomas and his wife, Nancy Starnes, having fun in Belize.
17May/June 2007
By Tari Hartman Squire,BAC Liaison to NSCIA Board of Directors
What goes on inside disability-friendlycorporations that weave an accessiblewelcome mat for employees and cus-
tomers with disabilities, specifically those withSCI? NSCIA’sBAC membersare pioneers inemployment ofpeople with dis-abilities. HP,Citigroup andCingular Wire-less (now thenew AT&T)rank on Diversi-tyInc’s top 10
companies for people with disabilities.BAC co-chair Kevin Bradley (McDon-
ald’s) chaired the employers subcommitteeof the former President’s Committee onEmployment of People with Disabilities.Many BAC members are involved in the USBusiness Leadership Network (USBLN), in-cluding Mylene Padolina (Microsoft), KarenQuammen (formerly of Medtronic), andRayna Aylward (Mitsubishi Electric Amer-
ica Foundation), in addition to companieslike Motorola.
Title I of the ADA addresses four com-ponents of employment: recruiting, hiring,retaining and promoting. BAC memberstake the lead in all four areas.
Recruiting and Hiring Motorola, Microsoft, Medtronic and HPhave hosted or are hosting annual confer-ences of Career Opportunities for Studentswith Disabilities (COSD), which link uni-versity disability services and career place-ment offices. Wal-Mart’s Deidre Davis hasdelivered the keynote at a COSD. If you area college grad with SCI, check out theCOSD Career Gateway at cosdonline.org.
BAC members lead Disability Mentor-ing Day (DMD), such as AT&T, Citigroup,Federated, Darden and HP.
Under the stewardship of HP’s MichaelTakemura, DMD has gone global in Mexico,Canada, Costa Rica and Puerto Rico. In 2007,England, Italy, Czech Republic, Hungary,Spain and the Netherlands will participate.
Aylward, executive director of the Mit-subishi Electric America Foundation(MEAF), proudly explains why MEAF spon-sors the Congressional internship program ofthe American Association of People with Dis-abilities, which places college students withdisabilities as summer interns in the U.S.Congress. “The interns learn how the legisla-tive branch works and House/Senate staffmembers become better educated about dis-ability issues. As one concrete result of thissix-year program, Congress has had to makeoffices and transportation on Capitol Hillmore accessible -- for the first time applyingADA regulations to its own operations. All
of the interns describe the experience as ’life-transforming.’ Many change their majors tosuch fields as public policy, political scienceand pre-law. One former intern is now a per-manent Senate staffer and one helped intro-duce a stem cell research bill in Congress.”
MEAF joined with the U.S. Departmentof Education’s Office of Special Education andRehabilitative Services in 2003 in initiatingthe Youth to Work Coalition (YWC), a groupof foundations, federal agencies and nonprof-its that promotes internships and mentoringprograms for youth with disabilities. Havingreal work experience and the guidance of amentor can be critical factors in enabling stu-dents to transition from school to jobs andmeaningful careers. The YWC has beenadopted as a core program by the USBLN.
The USBLN is a business-to-businessnetwork of 5,000 employers including Mc-Donald’s, Microsoft, Motorola, the newAT&T and Bank of America.
MaintainingBAC members lead employee networks/affin-ity groups of employees with disabilities.Gary Talbot, an engineer with SCI who nowworks for Disney, started the GM Mobilityaffinity group when he worked there. Othersinclude AT&T, Microsoft, AOL, Motorola(BAC co-chair Mary Brooner co-chairs Mo-torola’s Disability Business Council) and HP.
HP’s Disability Network Resource Group(DNRG) has 31 global members. Accordingto Takemura, “HP’s DNRG works collabora-tively to promote awareness of disability re-lated topics and resources within HP. HPDNRG members work to promote innova-tion by fostering a welcoming environment,encouraging open communication and em-
bracing diverse perspectives. The DNRGcharter went global this year.”
Most accommodations cost less than$500. The Job Accommodations Networkis a free service for employers (jan.wvu.edu.or 1-800-526-7234). Sometimes, accom-modations are as simple as placing four cin-der blocks under a desk to accommodatesomeone using a wheelchair.
PromotingBAC members such as Mazrui, Brooner,Bradley, Wlodkowski, Takemura andPadolina have provided me with valuableinsights to help launch the UCLA Ander-son School of Management's LeadershipInstitute for Managers with Disabilities.Microsoft, IBM and DiversityInc arefounding organizations of this break-through institute focusing on career ad-vancement for executives with disabilities.
ImagesIn 1979 I sustained a cervical sprain, wore acervical brace and was discriminated againston an audition. This prompted me to formthe Screen Actors Guild’s Committee of Per-formers with Disabilities. The incident re-mains my “true north” in improving imagesand employment opportunities for peoplewith disabilities. Two BAC members havegone the extra mile in developing marketingmaterials that employed people with SCI.Ron Pettit at Royal Caribbean Cruise Lines(and when he was at Northwest Airlines)used NSCIA’s Pat Maher as a photo modeland Mike Caron of AvisBudget hired a modelwith SCI for their Avis Access™ brochure.
NSCIA thanks BAC members for lead-ership in employment of people with dis-abilities across a variety of sectors.
Members Are Employment Leaders
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18 May/June 2007
NSCIA CHAPTER & SUPPORT GROUP NETWORKARIZONACHAPTERArizona United SCIA901 E. Willetta, Ste. 2306, Phoenix, Arizona, 85006Phone: (602) 239-5929 Ext. 444Fax: (602) 239-6268Contact: Paul MortensonWebsite: www.azspinal.orgE-mail: [email protected]
SUPPORT 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 N16th 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 EMcDowell 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 GROUPSLeon 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, 6492Phone: (203) 284-1045Contact: Jeff Dion Website: www.sciact.orgE-mail: [email protected]
DISTRICT OF COLUMBIACHAPTERSCI Network of Metropolitan Washington, NSCIAPlaza West 9, 51 Monroe Street,Rockville, Maryland, 20850Phone: (301) 424-8335Fax: (301) 424-8858Contact: Jesse ParkerE-mail: [email protected]: David Burds Website: www.spinalcordinjury.netE-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 GROUPCalumet 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 Drive, Urbandale,Iowa, 50322Phone: (515) 270-1522Contact: Tim Ascherl Phone: (515) 643-0469Contact: Joyce Ellens E-mail: [email protected]
KENTUCKYCHAPTERDerby City Area Chapter, NSCIA305 W. Broadway, Louisville, Kentuky, 40202Phone: (502) 589-6620Contact: 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]
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) 933-8666
Fax: (781) 933-0043Contact: Kevin GibsonWebsite: www.sciboston.comE-mail: [email protected]
MISSOURISUPPORT GROUPSouthwest Center for Independent Living2864 S. Nettleson Ave., Springfield, Missouri, 65807Phone: (417) 886-1188Contact: Marion Trimble Website: www.swcil.orgE-mail: [email protected]
NEVADACHAPTERNevada Chapter, NSCIA4708 E. Rochelle Avenue, Las Vegas, Nevada, 89121Phone: (702) 988-1158Fax: (702) 951-9637Contact: Brian "Moose" Hasselman Website: www.nscia-nv.orgE-mail: [email protected]
NEW HAMPSHIRECHAPTERNew Hampshire Chapter, NSCIAP.O. Box #197, No. Salem, NH 03073Phone: (603) 216-3920Fax: (603) 432-1549Contact: Joan Nelson Website: www.nhspinal.orgE-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, NSCIA2654 Green Valley Dr, Toledo, Ohio, 43614Phone: (419) 389-6678Contact: Debbie BurkeE-mail: [email protected]: (419) 455-0748Contact: Jim BeckleyWebsite: www.nwonscia.orgE-mail: [email protected]
Northeast Ohio Chapter, NCSCIAc/o Jeff SchiemannPO Box 934, Chesterland, Ohio 44026Phone: (440) 813-2783Contact: Adam SweeneyPhone: (440) 442-5550Contact: Jeff SchiemannPhone: (800) 325-5605Contact: Metro Health
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 CAROLINACHAPTERNSCIA South Carolina Chapter500 Taylor Street Suite 403, Columbia,South Carolina, 29201Phone: (866) 445-5509Fax: (803) 376-4156Contact: Debra MatneyWebsite: www.scscia.orgEmail: [email protected]
SUPPORT GROUPSChester County Chapter Peer Support
The Chester Regional Medical Center,Rehabilitation Dept. 1 Medical ParkDrive, Chester, South Carolina, 29706Phone: (803) 482-4389Contact: Lee CarterE-mail: [email protected]
Columbia, SC Area Support Group500 Taylor St, Columbia, South Carolina, 29201Phone: (803) 252-2198Contact: Richard BridgesE-mail: [email protected]
Florence, SC Area Support GroupPhone: (843) 679-9932Contact: Ronnie McFaddenE-mail: [email protected]
Orangeburg, SC Area Support GroupPhone: (803) 829-2043Contact: Rebecca FelderE-mail: [email protected]
Rock Hill Area Support GroupPhone: (803) 366-5659Cotact: Bob AldersEmail: [email protected]
Spartanburg, SC Area Support GroupPhone: (864) 595-1947Contact: Dot Colson E-mail: [email protected]
TEXASCHAPTERRio Grande ChapterHighlands Regional Rehab. Hospital 1395 George Dieter, El Paso, Texas, 79936Phone: (915) 532-3004Contact: Sukie ArmendarizContact: Ron Prieto Email: [email protected]
WASHINGTONSUPPORT GROUPSCI ForumUniversity of Washington Medical CenterCafeteria Conference Room B/C1959 NE Pacific StSeattle, 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: Bill Wright Mary RostkowskiWebsite: www.nsciasew.orgE-mail: [email protected]
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 yourarea, why not start your own? Contact the National Of-fice for assistance on our Helpline: 800.962.9629.
