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care on the work of Munro and Deaver and advocated rhizotomy and gait
retraining. Like Munro, the goal was to restore walking if possible in the
programdescribedasfollows:
Theretrainingprogramisdividedintofiveparts,thoughinpracticethere
isagooddealof overlapping inthevariousstages:(1) bed;(2) wheel-
chair; (3) gymnastic training and preparation for brace walking; (4)
parallelbarwalkingandexercising;(5)crutch-walkingwithbraces(28).
AtHarvard,MunrofollowedinthetraditionofGoldthwaitatMGHandGranger
at BCH in pioneering restorative care of the traumatic injured individual. He
brokenewgroundinSCIwithhisapproachtourinarysepsisandpreventionof
pressure injuries (at that time referred to as “decubitus ulcers”), all of which
impressedGuttmann.Munro’slegacyishonoredwithanannualnamedlecture
bytheAmericanParaplegicSociety.“Munroachievednoteworthyoutcomesby
incorporatingphysicalrehabilitationincludingbowelandbladdermanagement
and physical and occupational therapy, and by addressing patients’ complex
socioeconomic needs. His small unit became the model for SCI care in the
UnitedStates.”(29)
Harry Botterell, a neurosurgeon by training, partnered with Al Jousse in
establishing the first SCI Center at Lyndhurst in Toronto, Canada, in 1945.
Botterell(1946)citesDeaverandMunro’sworkasthefoundationforhispaper
ontheSCIunitinCanada.Hehadexpressedaninterestinrestoringfunctionto
severalindividualswithincompleteSCIasearlyasthe1930sand,likeMunro,
shared a positive attitude at a time when most physicians were negative
(5,20,30). However, in 1945 when he returned to Toronto’s Christie Hospital
fromthebase hospital in France, he was confronted withmanyveterans,who
had been paralyzed from wounds received in WWII (31). In a period of 18
months, Botterell established a spinal cord center and recruited Jousse, who
wouldspecializeinPhysicalMedicineandRehabilitation(PM&R),todirectthe
Lyndhurst Center for the next 30years (1945–1975), and togetherthey would
publishtheirresults:
TheworktobepresentedhasdevelopedfromthatofMunroandDeaver
and [M.E.] Brown…During the summer of 1945 some 200 paraplegic
patients were gathered into four centres strategically placed across
Canada.DuringtheperiodfromFebruary3,1945toJune1,1946,103
post-traumatic paraplegic patients from the Armed Forces have been
treatedinChristieSt.HospitalandLyndhurstLodge,Toronto(28).
Botterelland Jousse employed the medicalmanagementofMunro in terms of
frequent turning to prevent pressure injuries,tidaldrainage to prevent bladder
infection,andtraininginrehabilitationofcrutchwalkingandactivitiesofdaily
living, as reported by Deaver (28,32–34) (Figures 1.3 and 1.4). Botterell
advocated rhizotomy to decrease spasticity in training patients to walk with
crutchesorunaided.Joussespentseveralmonths(April–June1945)withDeaver
atthe hospitalfor theCrippled andDisabledin NYCbefore Deavermovedto
New York University with Rusk (30). Guttmann, the pioneer of SCI in the
United Kingdom worked at the internationally famous center at Stoke
Mandevillein England, publishedhisfirst results in1944,and his textbookin
1973,inwhichhealsocitedtheimportantcontributionsofMunroand Deaver
duringthisperiod(20).
Oneoftheuniquefeaturesof theLyndhurstCenteranditscontributions to
thegrowingnationalincentiveforcareofpersonswithSCIwastheformationof
the Canadian Paraplegic Association (CPA). Led by John Counsel, an SCI
consumerandveteranfromawoundin1942,andjoinedbyJousseandBotterell,
the CPA was established in 1946. This trio of visionaries chose a strategy of
“intelligentself-interest” to ensure continuity of care for thefuture(31). They
advocatedgovernmentsupportforallvictimsofSCIincludingnotonlyveterans
butalsowomenandchildren,becausetheyrecognizedthatfollowingthewarthe
numberofveteransandhospitalstaffwoulddiminish,butnewcivilianpersons
withinjurieswouldexisttosustaintheircriticalservices(7).
Spinalunitsflourishedinveteran’shospitalsledbyaurologist,ErnestBors,
and his neurosurgical colleague, Estin Comarr (Figure 1.5). Their important
contributiontotheclassificationoftheneurogenicbladderbearstheirname,and
Guttmann (1973) indicated that he was in complete agreement with Bors’s
treatment of the neurogenic bladder (35). Likely influenced by Munro’s
contributionspriortothewar,BorsandComarrestablishedspinalunitsduring
WWII in the Army and later in the Veterans Administration (VA) Hospitals
(4,5). However, Bors maintained that his orientation to PM&R occurred in
SwitzerlandandGermanyduringhisformativetraininginthe1920s(36).Bors,
likeGuttmann,wasaJewishrefugee,whoemigratedtotheUnitedStatesfrom
Praguein1938,whileGuttmanncamefromGermanytotheUnitedKingdomin
1939(27).AsBorsstated:
My past formal training in anatomy, surgery and urology has been
valuable;itexpeditedthelearningofbasicneurology,theperformingof
operative procedures other than urological, the understanding of what
modalities in physical medicine, corrective or occupational therapy
mightbenefittherespectivepatient’srehabilitation(36).
FIGURE1.3HarryBotterell(left)andAlJousse(right),foundersof
thefirstspinalcordcenterinCanada,1945.
Source: Courtesy of Dr. William Geisler and the G. Kenneth Langford, Sr. Family,
respectively.
FIGURE 1.4 George G. Deaver: Pioneer of SCI Rehabilitation
(WWI–WWII).
Source:ImagecourtesyofTheLillianandClarencedelaChapelleMedicalArchivesatNYU.
Borsstressed(1967)theimportanceofautonomyforaspinalcordunitbecause
it required a team approach and should not be dominated by one department.
ThiscategoricalapproachtomanagementofSCI,whichintegratedmedicineand
rehabilitation, was facilitated by its presence in veteran’s hospitals. The VA’s
orientationtorehabilitation,particularlyinuniversitysettings,waspioneeredby
Paul Magnuson, who was influenced by physiatrists John Stanley Coulter,
GeorgeDeaver,FrankKrusen,andHowardRusk(37–39).
ThemostcitedSCImedicinehistorian,JohnRussellSilver,praisedtheVA
system developed under Bors and stated that Bors “achieved for American
paraplegics what Guttmann accomplished for paraplegics in the United
Kingdom.”(27)Althoughhighinhispraise,henotedthatforveterans,accessto
SCI was limited to those with acute injury at that time. Among the several
distinguishedphysiciansand“SCIconsumers”whoservedintheVAwereDrs.
Arthur Abramson and AlainRossier. Abramson,wounded at the Battleof the
Bulge in 1944, became director of rehabilitationat theBronx VAin the early
1950s,publishedarticlesontheneurogenicbladder,andbecameamajorleader
ofthe journal, Archivesof Physical Medicine and Rehabilitation(40). Having
experienced the onset of traumatic SCI as a student, Rossier spent time with
Guttmann in 1959 (41) and later in the United States with Bors, Rusk, and
Abramson in 1961 to 1964 before accepting the directorship of the VA SCI
centerinWestRoxbury,oneoffourmilitaryhospitalsconvertedtoaVAcenter
after WWII (42,43). Aggressive in his approach to the VA bureaucracy like
Magnuson (44) and Fonseca (43) before him, he persuaded the VA to admit
civilians(inexceptionalcircumstances)andadvocatedcertificationinSCItothe
AmericanBoardofPhysicalMedicineandRehabilitation(ABPM&R)in1980.
Althoughinitiallyrejectedduetothesizeofthespecialtyandotherfactorsatthe
time,theresponsewaspositive15yearslater.AsaresultofaneffortledbyJoel
Delisa, Chair of the ABPM&R (1993–1998), and supported by Margaret
Hammond, Chief Consultant, Spinal Cord Injury/Disorders Services,
DepartmentofVeteransAffairs(1996–2012),subspecialtycertificationbecame
availabletothemajorspecialtiesthatcaredforSCIsubjectsin1995(45).Asof
2017,672 physicianshave receivedsubspecialty certificationin SCImedicine,
and currently 93% (455/492) have primary certification in PM&R, with the
remainder receiving certification from otherboards of the AmericanBoard of
Medical Specialties (ABMS) (46). True to the multidisciplinary approach of
founders Munro, Guttmann, Bottrell/Jousse, Bors/Comarr, and more recently
JohnYoung,theProgramRequirementsforGraduateMedicalEducationinSCI
Medicineincludethefollowingdescription:
FIGURE1.5Bors(left)andComarr(right),bothestablishedveteran’s
hospitalsin1946(Bors1967).
Source:CourtesyoftheJournalofSpinalCordMedicine.
Themanagementofpersonswithspinalcorddysfunctionrequiresateam
andinterspecialtyapproachwithcontributionsfromseveralmedicaland
surgicalspecialties,aswellasotherhealthcareprofessionals.Whenthe
spinaldysfunctionisduetoanactiveprocessorachronicdegenerative
disorder, the management of the patient’s primary disease is the
responsibilityofaphysicianintheappropriatediscipline(47).
Pediatric/internal medicine/pulmonary specialists, such as WilliamA. Spencer
andR.EdwardCarterattheTexasInstituteforRehabilitationResearch(TIRR),
with experience in pulmonary complications from polio, integrated the
management of tetraplegic and respirator-dependent patients into spinal cord
units. The Rancho Los Amigos Program in Downey, California, had also
specializedinpolio rehabilitation and both TIRR and Rancho were funded by
the National Foundation for Infantile Paralysis (NFIP). These respiratory and
rehabilitation centers (RRC) established in 1950 by the NFIP served as the
“model for categorical care of catastrophic disability” and demonstrated the
benefitsofintegratingacuteandchroniccarewithinarehabilitationsetting(48).
Acomparablemodelforseverelyparalyzedpoliopatientsinthe1950swaslater
appliedtoSCIpatientsinthe1970s.
WithinadecadeofthepioneeringeffortsofGuttmann,Botterell,Bors,and
Munro,JohnYoungbeganhisfellowshipinPM&RinColoradoin1956under
Dinken.In 1951,Dinken,who wastrainedby Deaver(19), had presentedat a
symposium on SCI with Bors and Comarr, which must have resonated with
Young’strainingandinterestatthetime.Theemphasisonthe“supervisedand
directedbythephysician,”wouldcertainlyresonatewithGuttmann’sapproach,
whenYoungencounteredhimseveralyearslater.
Extensiveexperienceinthecareoftheparaplegicpatient,gainedduring
and since the recent World War, has indicated the importance of early,
individualized and comprehensive physical treatment. Optimal results
requirethatsuchtreatmentbeadequatelysupervisedanddirectedbythe
physician and that it be carefully integrated into the total therapeutic
regimen, which must include good medical, urologic, neuropsychiatric
andorthopediccare(49).
Following his fellowship (1954–1957), Young moved to Craig Hospital in
Denver,whereheremainedasmedicaldirectorfor11years(1957–1968)(Figure
1.6). At that time, Craig Hospital was located on theoutskirts ofDenver ina
dated tuberculosis sanatorium. Despite this humble beginning, Craig Hospital
hasemerged asoneof outstanding rehabilitationfacilitiesin the UnitedStates
(50).
FIGURE1.6JohnYoung.
Source:CourtesyofCraigHospitalArchives.
DanLammertse,who servedas medicaldirectoratCraigHospital forover
20years(1984–2008),statedthatYoung“clearlywasthe‘FoundingFather’of
CraigHospital,andhisphilosophiesarestillimbeddedinourculture.Whenhe
cametoCraigin1957,itwasageneralrehabprogram;whenheleftin1968,it
hadclearlyevolvedthroughhisvision,intoasub-specialtycenterwithprimary
focusonSCI(51).”
In 1962, while at Craig Hospital, Young visited Guttmann at Stoke
Mandeville and was so incredibly impressed with Guttmann as a physician,
teacher,scientist,andprophetthathejoinedIMSOP,foundedbyGuttmann,the
following year. While Munro, Bors, and Comarr had made important
contributions, SCI care remained fragmented in the western hemisphere (5).
Guttmannhadadvocatedamodelbasedoncontinuityfrominjurytograve,and
YoungnowbeganhismissiontobringthisapproachtophysiciansinNorthand
SouthAmerica.
FollowinghismovetoGoodSamaritanHospitalinPhoenixin1968,Young
initiated perhaps the most important phase of his career as the founder of the
ModelSCI Systems. The legislativeoriginof the Model SCI centersbeganin
1968throughtheeffortsofRusk,Krusen,andFreed(52),whentheymetwith
membersof the U.S. Congresstoadvocate for SCI careforthe private sector,
equivalenttothequalitythathadbeenestablished intheVASystem.Congress
mandatedthat theRehabilitationServices Administration(RSA) addresses this
issue,andwithin2years,theresponseofMarySwitzer,JamesGarrett,andPaul
ThomasoftheRSAandCongressmanJohnRhodes(AZ)resultedinthecreation
ofthefirstmodelSCICenteratGoodSamaritanHospital(53).
Initially, Young was awarded a 5-year demonstration grant, which
authenticated the benefits of categorical care resulting in fewer complications
andlessfragmentationofservices.AdescriptionofthisgrantbyJ.PaulThomas,
ProgramDirectoratRSAfollows:
In 1970, the Rehabilitation Services Administration, Department of
Health, Education and Welfare, began supporting the research and
demonstrationofmodelsystemsfortreatmentofspinalcordinjury. The
first was in Phoenix, Arizona, where the resourcesof Good Samaritan
MedicalCenter,BarrowNeurologicalInstituteandSt.Joseph’sHospital
werecombinedinconjunctionwiththeArizonaHighwayPatrol,Arizona
StateRehabilitationAgencyandArizonaStateUniversityintoaregional
system of care. Aspinal cordinjury caresystem concept links together
the services required by the spinal cord injured from the moment of
injury, through the initial medical/surgical management blending into
life-time follow-up services providingappropriatemedical and surgical
healthmaintenanceandcrisisintervention(54).
Thiseffortwasfollowedbythefundingofsixadditionalcentersthroughoutthe
UnitedStatesin1973formingthefirstModelSCISystems.Withtheassistance
ofThomasatRSA,Youngwas awarded funding for the National Database in
1975, which provided the research dimension to document prospectively the
courseofrecovery,complications,servicedelivery,costs,andopportunitiesfor
individualcenterinvestigations.Thecollectiveeffortsofthese SCIcentersand
its directors led to the formation of the American Spinal Injury Association
(ASIA),whichhasmademanycontributionstoeducationandresearch.Among
them are the development of ISNCSCI and an annualscientific meeting.This
classificationsystemserves asthe currentgoldstandardforresearch studiesin
SCI regeneration. As a founding member of ASIA and his leadership of the
ModelSystemsandNationalDatabase,Younghasearnedtheadmirationofhis
colleaguesworldwide(50).
PARTIII.ORGANIZATIONSANDFUNDING
OrganizationofSCICare,Education,andResearch
Wehavetracedtheevolutionofcarefor SCIpatients,which beganinEurope,
particularlyEnglandandGermanybeforeandduringWWI,butitwasGermany
that achieved superior results attributable to its organization of services and
leadershipby physicians. While the complicationsofpressureinjuries, urinary
sepsis,andtheneedforrehabilitationtorestorefunctionandreturnthewounded
tohomewasrecognizedasimportantbyall,onlyGermanywasabletodevelop
aremarkablyeffectiveapproach.
Itwas notuntilafter WWI thatMunro (United States),Botterell (Canada),
and Bors/Comarr (US-VA) would be able to implement comprehensive
rehabilitation programs for SCI based on adequately trained staff and
organization of services. Similarities can be drawn between the evolution of
rehabilitationfor persons with SCIandthosewith polio. While theysharethe
commondenominator ofparalysis, personswithpolio weresparedthe sensory
loss,spasticity,dysreflexia,andothercomplicationsseenin SCI.Nevertheless,
polio served as a model for the multidisciplinary team approach which, in
addition to nurse and doctor, included physical, occupational, speech and
respiratory therapists, and psychosocial/vocational counselors. Polio
rehabilitationcenterslikeRanchoLosAmigos(Downey,CA)andthethenTIRR
(Houston, TX), and others stood out. When the incidence of polio dropped
dramatically after the discovery of vaccines by Salk and Sabin, hospitals like
Rancho,TIRR,andothersintheUnitedStatesaswellasLyndhurstHospitalin
CanadawerereadytotranslatetheirexpertisetothetreatmentofSCIandother
causesofparalysis(55,56).
Similarly,organizationsliketheNFIPanditsMarchofDimes,whichraised
funds to advance comprehensive care/rehabilitation for the RRC as well as
interdisciplinary education and research that resulted in vaccines, served as a
model for analogous efforts in SCI. In his history of the rehabilitation
movement, Verville indicates that no longer, as in the 1960s to 1970s, can
pioneerssuchasRuskandKrusenaloneaffectchange;rather,organizationsof
professionals and consumers are now required (37). Although many have
evolved over the years, they can be grouped into: (a) those that focus on
supporting the discovery of knowledge leading to a cure, such as The
International Campaign for Cures of SCI Paralysis (ICCP), The International
Collaboration on Repair Discoveries (ICORD), and The National Institute for
Neurologic Diseases and Stroke (NINDS); (b) those that focus on the
dissemination of knowledge through seminars and publications, such as The
InternationalSpinalCord Society(ISCoS),ASIA,andTheAcademyof Spinal
Cord Injury Professionals (ASCIP); and (c) those that focus on consumer
advocacyandeducation, such as The National Spinal Cord InjuryAssociation
(NSIA), The Paralyzed Veterans of America (PVA), and The United Spinal
Association(USA).
Whilethesethreegroupshavevaryingobjectives,theyallshareacommon
missiontoprevent,educate,treat,andcureSCI,therebyensuringthatSCIisno
longer“anailmentnottobetreated.”(5)
FinancingofSCIintheUnitedStates
Adequate financing of universal comprehensive care for major catastrophic
conditionslikeSCIisafailureinmosthealthcaresystemsaroundtheworldand
the United States is no exception, despite the availability of Model SCI
comprehensivecaresystems. Paymentfor comprehensivecareforSCIpatients
posesaspecialchallengeintheUnitedStates,withitsmanysourcesofinsurance
andhealthcareprovision,eachofwhichcarriessignificantlimitations.Coverage
iseitherlimitedtoparticularindividualssuchasthoseinjuredinwar,atwork,on
theroad; with permanent disabilities; and over 65, or itis limitedin termsof
services covered. While the Affordable Care Act sought to provide universal
coverageandstandardsforpoliciesenablingaccesstoprivateinsuranceformost
Americans, comprehensive rehabilitation coverage for those with a severe
disabilityisnotavailable.
EvenwhenadequatecoveragethroughmodelSCIcaremightbeprovided,as
inWorkersCompensationinsurance,asecondproblemarisesfromthefailureof
payerstoensurethatpatientsactuallyobtainthefullrangeofcareprovidedby
specialized SCI centers in a timely fashion. Often, payers have adopted a
fragmentedapproach, allowing caretobe provided for differentaspects of the
condition at different sites (5). The best comprehensive coverage for SCI
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