Go26T

ORIGINAL

KEYNOTE ADDRESS

BY
C. EVERETT Koop, MD
SURGEON GENERAL
AND
DEPUTY ASSISTANT SECRETARY FOR HEALTH
U.S. PUBLIC HEALTH SERVICE
U.S.DEPARTMENT OF HEALTH AND HUMAN SERVICES

PRESENTED TO THE FIRST REGIONAL SEMINAR ON
HOME CARE FOR VENTILATOR-DEPENDENT CHILDREN & ADULTS
ST. LOUIS, MISSOURI
DECEMBER 13, 1983
(GREETINGS TO HOSTS, GUESTS)

I'M DELIGHTED TO JOIN YOU THIS MORNING FOR THE FIRST IN A SERIES
OF REGIONAL MEETINGS THAT FOCUS ON IMPROVED CARE FOR PERSONS WHO ARE
DISABLED AND HANDICAPPED.

THIS MEETING IS A NATURAL FOLLOW-UP TO THE SURGEON GENERAL'S
WORKSHOP ON CHILDREN WITH HANDICAPS AND THEIR FAMILIES, WHICH WE
HELD A YEAR AGO IN PHILADELPHIA. AT THAT TIME, IN MY CHARGE TO THE
WORKSHOP PARTICIPANTS. I SAID. “THE WAY WE DEAL WITH PROBLEMS LIKE
THIS REVEALS JUST WHAT KIND OF SOCIETY WE ARE.”

I THINK THE RECORD OF THE PAST 12 MONTHS IS CLEAR ENOUGH. IT
SHOWS THAT WE ARE STILL A CARING AND COMPASSIONATE SOCIETY...CON-
CERNED ABOUT THE HEALTH OF CHILDREN...SYMPATHETIC TO THE FAMILIES
WHO FACE ENORMOUS CHALLENGES IN THE COURSE OF ACCEPTING AND RAISING
A HANDICAPPED CHILD...AND INNOVATIVE IN THE WAY WE BEND THE POLITICAL
AND ECONOMIC ENVIRONMENT TO MAKE IT SERVE THE HUMAN NEEDS OF OUR
FAMILIES, RATHER THAN THE REVERSE.
-2-

BUT THOSE ARE GENERALITIES. ACTUALLY, I HAVE TWO SPECIFIC
REASONS FOR BEING ESPECIALLY PLEASED TO OPEN THIS CONFERENCE THIS

MORNING.

FIRST, I CAN'T TELL YOU HOW PROUD I AM TO BE IN THE GOVERNMENT...
TO HAVE HELD A CONFERENCE...AND THEN, A YEAR LATER, TO BE ABLE TO
LOOK BACK AND ACTUALLY SEE RESULTS OF THAT CONFERENCE.

EVEN AFTER TWO-PLUS YEARS IN THIS POSITION, I STILL CONSIDER
MYSELF TO BE THE NEW KID ON THE BLOCK IN THE PUBLIC HEALTH SERVICE.
MANY OF MY COLLEAGUES AND FRIENDS IN THE P.H.S. HAVE BEEN FIGHTING
THE BATTLE OF INERTIA FOR MUCH LONGER THAN I. AS THE NEW KID, I
HAVEN'T HAD THE YEARS OF TRIUMPH AND OF UNCERTAINTY THAT USUALLY
COME WITH THE TERRITORY OF PUBLIC SERVICE.

BUT WE'VE BEEN VERY FORTUNATE. IN THIS HIGHLY COMPLEX AND
EMOTIONALLY CHARGED AREA OF SERVICE TO HANDICAPPED CHILDREN AND
ADULTS AND THEIR FAMILIES, WE'VE BEEN ABLE TO MAKE SIGNIFICANT,
MEASURABLE PROGRESS. I'M VERY PROUD OF THAT -- AS A PUBLIC SERVANT
AND AS YOUR SURGEON GENERAL -- AND I HOPE YOU FEEL THE SAME WAY.
-3-

SO THAT IS ONE REASON. IN A SINGLE YEAR, WE MAY HAVE MADE A
DIFFERENCE IN THE LIVES OF MANY HUNDREDS OF CHILDREN AND THEIR
FAMILIES,

MY SECOND REASON IS A LITTLE DIFFERENT. OVER THE PAST YEAR,
WE'VE BEEN DEVOTING OUR TIME TO AN ISSUE THAT BROOKS NO OBSTRUCTION
»+eTHAT ADMITS OF NO PETTINESS,..AN ISSUE THAT INSPIRES PEOPLE TO
OFFER THE BEST THAT IS IN THEM IN ORDER TO PLAN AND IMPLEMENT SUCH A
WORTHWHILE PROGRAM,

 

THE PROBLEMS FACED BY VENTILATOR-DEPENDENT PATIENTS AND THEIR
FAMILIES CAN BE STAGGERING. THEY ARE AMONG THE MOST COMPLEX PROBLEMS
TO APPEAR WITHIN THE ENVIRONMENT OF MEDICINE. THEY REQUIRE INNOVA-
TIVE, CAREFUL RELATIONSHIPS BETWEEN MEDICINE AND COMMUNITY SOCIAL
SERVICES,

THESE ARE ALSO COSTLY PROBLEMS, REQUIRING THE HELP OF
ACCOUNTANTS WITH THE SOULS OF SAINTS.
-\-

AND THE PROBLEMS ARE ALSO INEXTRICABLY LINKED TO A CLUSTER OF
PROFOUND MYSTERIES...THE MYSTERY THAT IS THE HUMAN INFANT, THE
MYSTERY OF PARENTHOOD, THE MYSTERY OF PERSONAL COURAGE, AND THE
MYSTERY OF FAMILY LOVE.

AS FORMIDABLE A TASK AS WE SET FOR OURSELVES, I HAVE TO NEVERTHE-
LESS SAY THAT IT WAS THE RIGHT TASK. FOR TOO MANY YEARS WE HAD
TALKED ABOUT THIS PROBLEM AND WE SYMPATHIZED AND COMMISERATED AND
HAD COME UP WITH A NUMBER OF STEPS TO SOMEHOW LIGHTEN THE BURDEN FOR
BOTH THE VENTILATOR-DEPENDENT PATIENT AND HIS OR HER FAMILY. BUT
CLEARLY WE WERE NOT DOING ENOUGH.

ALSO, THE WAY WE WERE GOING ABOUT IT SAID QUITE A BIT ABOUT OUR
INTENTIONS GENERALLY IN REGARD TO THE SOLVING OF MANY OTHER SERIOUS
SOCIO-MEDICAL ISSUES, THE FACT IS. IF WE COULD PULL TOGETHER OUR
RESOURCES IN SUCH A COHERENT AND EFFECTIVE WAY THAT WE COULD MAKE
GOOD THINGS HAPPEN FOR VENTILATOR-DEPENDENT CHILDREN. THEN WE COULD
DO GOOD THINGS FOR MANY, MANY OTHER DISABLED AND HANDICAPPED
CHILDREN AND ADULTS.
-5-

YOU REMEMBER THE WORDS OF CASSIUS TO BRUTUS IN SHAKESPEARE'S
JULTUS CAESAR. “THE FAULT, DEAR BRUTUS, IS NOT IN OUR STARS BUT IN
OURSELVES, THAT WE ARE UNDERLINGS.” WE SO OFTEN DEFER TO CIRCUM-
STANCE, AS THE ROMANS DEFERRED TO CAESAR, AND WE BECOME, IN EFFECT,
THE “UNDERLINGS” OF CIRCUMSTANCE,

THAT NEED NOT ALWAYS BE SO. IT IS NOT WRITTEN ANYWHERE IN THE
STARS THAT DISABLED CHILDREN. ATTACHED TO MACHINERY FOR THE VITAL
AIR OF LIFE, MUST GO WITHOUT ANY OTHER HELP FROM THEIR SOCIETY. NOR
IS IT WRITTEN ANYWHERE THAT OTHER DISABLED AND HANDICAPPED INDI-
VIDUALS -- VERY YOUNG ONES TO VERY OLD ONES -- SHOULD BE LEFT OUTSIDE
THE PALE OF ASSISTANCE. THAT'S JUST NOT THE WAY WE WANT OUR SOCIETY
TO BE.

SO, WITH THIS PROJECT -- THAT IS, ADDRESSING THE NEEDS OF
VENTILATOR-DEPENDENT CHILDREN AND THEIR FAMILIES -- WE DECLARED OUR
INTENTION TO BLAME THE STARS NO LONGER, BUT RATHER TO LOOK TO
OURSELVES FOR WHAT COULD BE DONE,

AND I CAN TELL YOU IT WORKED.
-6-

AT THE CLOSE OF LAST DECEMBER'S WORKSHOP, WE AFFIRMED OUR COMMIT-
MENT TO TURN INTO REALITY AS MANY OF THE WORKSHOP RECOMMENDATIONS AS
POSSIBLE. WITH US TODAY ARE A NUMBER OF THE SAME PEOPLE WHO HAD
TAKEN PART IN LAST YEAR'S PROGRAM. AND THEY HAVE STORIES TO TELL US
»e STORIES OF HOPE, OF PROFESSIONALISM, OF CHARACTER, AND -- I'M
PLEASED TO SAY -- STORIES OF SUCCESS.

AS AN INTRODUCTION TO THEIR CONTRIBUTIONS FOR THE REMAINDER OF
THE DAY, LET ME BRIEFLY REPORT ON THE STATUS OF THE SEVEN RECOMMENDA-
TIONS AND HOW WE'RE DOING ON THEM.

AT THE TOP OF THE LIST LAST YEAR WAS THE NEED TO GET AS CLEAR A
DEFINITION OF THE PROBLEM AS WE COULD. AND BY THAT. I DON'T MEAN TO
NARROW DOWN THE PROBLEM AND THUS, IN A SENSE, TRIVIALIZE MANY OF ITS
ASPECTS. QUITE THE REVERSE. IT WAS FELT THAT THE PUBLIC AS WELL AS
THE MEDICAL AND SOCIAL SERVICE PROFESSIONS NEEDED TO APPRECIATE THE
SCOPE OF THE PROBLEM OF CARE FOR HANDICAPPED CHILDREN AND THEIR
FAMILIES. WE DID NOT FEEL -- AND RIGHTLY SO -- THAT SUCH AN
APPRECIATION WAS CURRENT.
-]-

I BELIEVE THAT THE PUBLICATION AND DISTRIBUTION OF THE PROCEED-
INGS OF THE DECEMBER WORKSHOP HAS CONTRIBUTED TO THIS TASK OF CLARI-
FYING WHAT THE PROBLEM IS. THE WORKSHOP REPORT DOES PROVIDE A COMMON
BASE OF UNDERSTANDING FOR ALL PERSONS WITH AN INTEREST IN THIS
PROBLEM,

STIMULATED BY THIS FIRST RECOMMENDATION REGARDING THE DEFINITION
OF THE PROBLEM, THE CRIPPLED CHILDREN'S PROGRAM AT THE UNIVERSITY OF
ILLINOIS SURVEYED THE STATUS OF VENTILATOR THERAPY AND SUPPORT AMONG
CHILDREN IN ILLINOIS. THIS MAKES ILLINOIS THE SECOND STATE TO
OBTAIN THIS KIND OF INFORMATION: PENNSYLVANIA WAS THE FIRST AND HAS
BEEN UPDATING ITS INFORMATION BASE.

A SIMILAR STUDY WAS ALSO BEGUN AT THE UNIVERSITY OF CALIFORNIA
AT SAN FRANCISCO. THE HEALTH POLICY PROGRAM AT THE UNIVERSITY IS
INVESTIGATING, FOR EXAMPLE. THE INCREASE IN THE LAST 25 YEARS OF THE
NUMBER OF DAYS OF LIMITED ACTIVITY AMONG CHILDREN.

ADDITIONAL EFFORTS HAVE INCLUDED A “NATIONAL CONFERENCE ON
CHRONIC ILLNESSES IN CHILDREN,” CONDUCTED LAST APRIL BY VANDERBILT
UNIVERSITY. THIS CONFERENCE HAS HELPED US IN A NUMBER OF WAYS, BUT
I'LL MENTION IN PARTICULAR THE ATTENTION IT PAID TO THE ISSUE OF
RESEARCH PRIORITIES REGARDING CHRONIC ILLNESS AMONG CHILDREN,
-8-

THEN, JUST THIS PAST OCTOBER. IN KALAMAZOO, MICHIGAN, A THREE-DAY
“INVITATIONAL SYMPOSIUM ON VENTILATOR-DEPENDENT CHILDREN” WAS HELD.
I UNDERSTAND IT WAS QUITE A SUCCESS. A FULL REPORT OF THAT SYMPOSIUM
WILL SOON BE PUBLISHED IN PEDIATRICS MAGAZINE, AND I URGE YOU ALL TO
WATCH FOR IT.

THE KALAMAZOO SYMPOSIUM DEALT WITH A NUMBER OF ISSUES, SUCH AS
THE NEED FOR BETTER DATA, THE PROBLEMS ASSOCIATED WITH THE FINANCING
OF CARE FROM BOTH PUBLIC AND PRIVATE SOURCES, THE RESEARCH NEEDS OF
THIS FIELD. AND THE MAJOR TASK: OF EDUCATION THAT HAS TO BE DONE
AMONG PARENTS, PATIENTS, HEALTH AND SOCIAL SERVICE PROFESSIONALS,
AND OUR COMMUNITIES IN GENERAL.

THE SECOND RECOMMENDATION OF THE WORKSHOP LAST DECEMBER CONCERNED
THE NEED FOR MODEL STANDARDS. THE WORKSHOP PARTICIPANTS FELT WE
NEEDED TO SPEND MUCH MORE TIME AND EFFORT IN DEVELOPING STANDARDS
THAT REFLECTED THE NEEDS OF THE FAMILY AS WELL AS THE CONCERN FOR THE
QUALITY OF LIFE OF EACH DISABLED CHILD. TO GET THIS WORK STARTED,
OUR DIVISION OF MATERNAL AND CHILD HEALTH AWARDED TWO GRANTS FOR
SPECIAL PROJECTS OF REGIONAL AND NATIONAL SIGNIFICANCE...NOW KNOWN AS
“SPRANS” GRANTS:
-9-

ONE OF THESE IS THE PROJECT AT THE UNIVERSITY OF IOWA. IT WILL
EXPLORE THE RELATIONSHIPS THAT DEVELOP BETWEEN DISABLED CHILDREN
AND THE HEALTH PROFESSIONALS WHO TAKE CARE OF THEM...

THE OTHER, AT THE UNIVERSITY OF MIGHIGAN, IS LOOKING AT STANDARDS
OF CARE THAT MAY BE APPLIED TO REGIONALIZED COMMUNITY HEALTH
SERVICES FOR CHILDREN WITH DIABETES. SUCH A REGIONALIZED SUPPORT
NETWORK WOULD INVOLVE HEALTH AND SOCIAL SERVICE PROFESSIONALS,
PRIVATE PROFESSIONAL AND VOLUNTARY ORGANIZATIONS, AND LOCAL AND
STATE GOVERNMENTAL AGENCIES. IT'S AN AMBITIOUS AND VERY WORTH-
WHILE PROJECT.

AND THAT BRINGS UP THE THIRD RECOMMENDATION, WHICH WAS TO
DEVELOP REGIONALIZED SYSTEMS OF CARE FOR VENTILATOR-DEPENDENT
CHILDREN.

THREE "SPRANS” GRANTS HAVE BEEN AWARDED FOR THE DEVELOPMENT OF
REGIONALIZED SYSTEMS THAT DEAL SPECIFICALLY WITH VENTILATOR-DEPENDENT
CHILDREN. THE ACCENT IS ON WAYS TO HELP MOVE CHILDREN OUT OF
INSTITUTIONAL SETTINGS AND GET THEM BACK HOME OR, AT THE LEAST, TO A
HOME-LIKE SETTING. NATURALLY, THE ROLE PLAYED BY EFFECTIVE
COMMUNITY-BASED SUPPORT SYSTEMS IS CRUCIAL.
-10-

SIX OTHER “SPRANS” GRANTS HAVE BEEN AWARDED FOR THE DEVELOPMENT
OF MODEL SYSTEMS TO SERVE CHILDREN WITH ARTHRITIS. IN ALL. THE
PUBLIC HEALTH SERVICE HAS AWARDED CLOSE TO $750,000 FOR THE
DEVELOPMENT OF REGIONALIZED SYSTEMS OF CARE FOR DISABLED CHILDREN.

AMONG THE MOST EXCITING EFFORTS IN THIS AREA IS THE CONTRACT
AWARDED BY THE OFFICE OF HUMAN DEVELOPMENT SERVICES TO THE JOHN F.
KENNEDY INSTITUTE IN BALTIMORE. WHAT WE HOPE TO ACCOMPLISH HERE IS
A MODEL FOR A WORKING NATIONWIDE REFERRAL NETWORK FOR THE DEVELOP-
MENTALLY DISABLED.

USING TODAY'S SOPHISTICATED TECHNOLOGY, IT SHOULD BE POSSIBLE
FOR A DEVELOPMENTALLY DISABLED INDIVIDUAL -- OR THE PHYSICIAN,
PARENTS, OR CARE-TAKERS OF SUCH AN INDIVIDUAL -- TO QUERY A SINGLE
SOURCE FOR INFORMATION ABOUT THAT DISABILITY AND PINPOINT THE BEST
OR MOST APPROPRIATE PLACES TO GET HELP FOR THE PERSON SO DISABLED...
HELP ANYWHERE IN THE COUNTRY OR POSSIBLY EVEN THE WORLD.

THIS IS NO LONGER THE “BLUE-SKY” THINKING OF VISIONARIES. WE
KNOW IT CAN BE DONE BECAUSE IT IS BEING DONE HERE AND THERE --
ALBETT IN PIECE-MEAL FASHION, BUT WE LOOK TO THE KENNEDY INSTITUTE
TO PULL SOME OF THESE THINGS TOGETHER.
-ll1-

UNDER THE TERMS OF THIS AWARD, THE STRONG FEATURES OF TWO
IMPORTANT INFORMATION SYSTEMS ARE TO BE COMBINED AND REGIONALIZED.
ONE IS A DATA RETRIEVAL SYSTEM FOR THE PARTICULAR USE OF PRACTICING
PHYSICIANS. THE OTHER IS ACCESSIBLE BY THE GENERAL PUBLIC.

THE DATA BASE FOR THE PHYSICIAN-ORIENTED SYSTEM WAS DEVELOPED BY
THE KENNEDY INSTITUTE IN BALTIMORE. USING DATA SUPPLIED BY THE 38
UNIVERSITY-AFFILIATED FACILITIES AROUND THE COUNTRY. AS A MATTER OF
FACT, THE AMERICAN MEDICAL ASSOCIATION ITSELF HAS A CONTRACT WITH
KENNEDY TO BRING THE INSTITUTE'S DATA IN AS THE FIFTH OFFERING OF
THE A.M.A.'S NATIONWIDE MEDICAL INFORMATION NETWORK, OR “MINET.” IT
IS AVAILABLE TO EVERY “MINET” SUBSCRIBER WHO HAS A DESK-TOP COMPUTER
AND A TELEPHONE,

THIS ENTERPRISE NICELY PULLS TOGETHER GOVERNMENT, THE PRIVATE
NON-PROFIT SECTOR. AND ORGANIZED MEDICINE -- IN THIS CASE, THE A.M.A.
-- TQ MAKE INFORMATION AVAILABLE TO PHYSICIANS CONCERNING ACCESS TO
SPECIALIZED CARE FOR THEIR PATIENTS AND THE PRESENCE OF COMMUNITY
SUPPORT SERVICES.
-]?-

THE OTHER AND MORE CONSUMER-ORIENTED DATA SYSTEM IS NOW FUNCTION-
ING OUT OF THE UNIVERSITY OF SOUTH CAROLINA TO BENEFIT THE CITIZENS
OF THAT STATE. THE SYSTEM CARRIES INFORMATION ON ACCESS TO CARE AND
COMMUNITY SUPPORT SERVICES WITHIN THE STATE. HOWEVER, ANY INDIVIDUAL
OR FAMILY MEMBER CAN GET INTO THE SYSTEM MERELY BY DIALING A TOLL-
FREE “800” NUMBER. IT ISN'T OPEN ONLY TO PHYSICIANS, FOR EXAMPLE.

THE KENNEDY INSTITUTE HAS AN EXCELLENT CONCEPT OF JUST HOW SUCH
A NETWORK WILL FUNCTION. BY MEANS OF THE KENNEDY AWARD, WE HOPE TO
EXPAND THE SOUTH CAROLINA MODEL TO COVER ALL THE STATES IN FEDERAL
REGION IV,...AND THEY ARE, IM ADDITION TO SOUTH CAROLINA, ALABAMA,
FLORIDA, GEORGIA. KENTUCKY, MISSISSIPPI, NORTH CAROLINA, AND
TENNESSEE. IF THAT WORKS -- AND I AM VERY OPTIMISTIC THAT IT WILL
-- THEN THE NEXT STEP IS TO “GO NATIONAL.” AS IT WERE, AND THUS MAKE
AVAILABLE TO ALL OUR CITIZENS THE BEST INFORMATION AND THE MOST
APPROPRIATE RESOURCES RELATIVE TO HANDICAPPING CONDITIONS,

AND JUST ONE ADDITIONAL POINT. THE KENNEDY GRANT IS FOR $95,000.
IT IS PROBABLY THE GREATEST BARGAIN TODAY IN THE ENTIRE FIELD OF
HEALTH CARE AND SOCIAL SERVICE R&D. BUT IT ALSO ILLUSTRATES THAT
THE SIZE OF THE PROBLEM MAY NOT ALWAYS DETERMINE THE COSTLINESS OF
THE SOLUTION. AS PROFESSIONALS IN THIS FIELD, WE NEED TO KEEP OUR
MINDS OPEN TO WHAT CAN BE DONE...AND THEN PAY WHAT'S NECESSARY.
-13-

T AGREE THAT SUCH A SENTIMENT IS EASIER TO SAY THAN TO LIVE. AND
FOR THAT REASON, WE HAVE BEEN MOVING ON THE FOURTH RECOMMENDATION,
THE ONE THAT DEALS WITH THE FINANCING OF CARE FOR CHILDREN WITH
DISABILITIES. LAST MAY, WE HELD ANOTHER KIND OF WORKSHOP IN
WASHINGTON, D.C. ON THIS PROBLEM,

THE COST OF CARE IS AN IMPORTANT AND CONTINUING CONCERN OF THE
ADMINISTRATION, I CAN TELL YOU THAT THE MAY WORKSHOP AND A SUBSE-
QUENT MEETING IN JUNE WITH OFFICIALS OF THE HEALTH CARE FINANCING
ADMINISTRATION HAVE SERVED TO THROW SOME LIGHT ON MORE AND BETTER
WAYS -- WITHIN EXISTING LAW AND REGULATION -- TO HELP PAY FOR MORE
AND BETTER SERVICE TO HANDICAPPED CHILDREN.

BUT THE PROBLEM WILL NOT GO AWAY WITH THE CONDUCT OF ONE
WORKSHOP OR THE SCHEDULING OF ONE MEETING. FOR THAT REASON, I AM
SETTING AS A PCRSONAL OBJECTIVE THE NEED TO KEEP TRACK OF ALL
DEVELOPMENTS IN THE FINANCING OF CARE SO THAT THE POTENTIAL FOR
INCREASED SUPPORT IS FULLY REALIZED AND EVERY CHILD WHO NEEDS CARE
WILL GET IT.
-l4-

I KNOW THAT IS CLEARLY THE FEELING HERE IN OUR HOST STATE OF
MISSOURI. AND I WANT TO RECOGNIZE THE LEADERSHIP GIVEN TO THIS
COMPLEX ISSUE BY GOVERNOR BOND. SINCE HE WILL TELL US ABOUT THE
“MISSOURT WAIVER” IN MORE DETAIL IN A HOMENT, LET ME JUST TOUCH ON
THIS AND THEN MOVE ON, WITH A SPECIAL “THANK-YOU” TO THE PEOPLE OF
THIS STATE.

THREE OTHER RECOMMENDATIONS ARE WORTH MENTIONING, ALTHOUGH I
WOULD RATHER NOT TAKE THE TIME TO COMMENT ON THEM RIGHT NOW. THEY
ARE...

IDENTIFYING AREAS OF POTENTIAL ABUSE...THAT IS, CONTROLLING
COSTS, ELIMINATING DUPLICATIVE SERVICES, MONITORING CARE
ACCORDING TO MODEL STANDARDS, AND SO ON,

ANOTHER IS INCORPORATING PRINCIPLES OF CARE FOR CHILDREN WITH
DISABILITIES INTO TRAINING PROGRAMS FOR HEALTH PROFESSIONALS AND
PARENTS. ..WHICH IS A STRAIGHTFORWARD ENOUGH RECOMMENDATION, 1
CAN REPORT THAT AN AD HOC COMMITTEE DEDICATED TO FOLLOWING UP
THIS TRAINING RECOMMENDATION MET LAST JUNE, WITH REPRESENTATION
FROM ACROSS A BROAD SPECTRUM OF HEALTH, SOCIAL SERVICE, AND
EDUCATIONAL SPECIALTIES.
-15-

AND THE LAST ONE. THE SEVENTH RECOMMENDATION FROM OUR FIRST
WORKSHOP, HAS TO DO WITH SUPPORTING RESEARCH IN THE CARE OF
CHILDREN WITH DISABILITIES. THE VANDERBILT STUDY, THAT I
MENTIONED EARLIER, HAS BEEN HELPFUL IN GIVING US SOME DIRECTION
IN OUR RESEARCH STRATEGY.

I HOPE YOU FEEL AS GOOD AS I DO ABOUT THIS RECORD OF ACHIEVEMENT
OVER THE PAST 12 MONTHS. IT DOES DEMONSTRATE THAT CONCERNED CITIZENS
-- HEALTH AND SOCIAL SERVICE PROFESSIONALS. GOVERNMENT OFFICIALS, AND
LAY CITIZENS -- CAN FOCUS THEIR INTERESTS AND ENERGIES ON A PARTICU-
LAR ISSUE AND MAKE A DIFFERENCE IN THE OUTCOME OF THE PUBLIC DEBATE.
AND CHILDREN WILL BENEFIT.

IN THESE REMARKS I HAVE MEASURED PROGRESS ACCORDING TO WHAT'S
BEEN ACCOMPLISHED ON THE RECOMMENDATIONS OF LAST YEAR'S WORKSHOP.
BUT MANY OTHER THINGS HAVE HAPPENED OVER THE PAST YEAR, AND I WOULD
BE REMISS IF I DID NOT RECOGNIZE THAT. IN FACT, I WOULD LIKE TO PAY
SPECIAL ATTENTION TO AN EVENT THAT TOOK PLACE IN WASHINGTON, D.C.,
ON NOVEMBER 29TH.
-16-

ON THAT DAY REPRESENTATIVES OF 9 NATIONAL ORGANIZATIONS CAME
TOGETHER AT A PRESS CONFERENCE THEY CONVENED TO ANNOUNCE THEIR
AGREEMENT ON A JOINT STATEMENT ENTITLED, “PRINCIPLES OF TREATMENT OF
DISABLED INFANTS.” THE 9 INCLUDED...

THE

THE

THE

THE

THE

THE

THE

THE

AMERICAN ACADEMY OF PEDIATRICS

AMERICAN ASSOCIATION OF UNIVERSITY-AFFILIATED PROGRAMS

AMERICAN ASSOCIATION OF MENTAL DEFICIENCY

AMERICAN COALITION CF CITIZENS WITH DISABILITIES

ASSOCIATION FOR THE SEVERELY HANDICAPPED

NATIONAL ASSOCIATION OF CHILDREN'S HOSPITALS AND RELATED
INSTITUTIONS

ASSOCIATION FOR RETARDED CITIZENS -- U.S.

NATIONAL DOWN'S SYNDROME CONGRESS

THE SPINA BIFIDA ASSOCIATION OF AMERICA.
-l7-

THE FIRST SENTENCE OF THEIR STATEMENT REFLECTS A GREAT DEAL OF
SOCIAL, LEGAL, AND MEDICAL HISTORY OF THE PAST FEW DECADES. IT
SAYS...

“DISCRIMINATION OF ANY TYPE AGAINST ANY INDIVIDUAL WITH A
DISABILITY/DISABILITIES, REGARDLESS OF THE NATURE OR SEVERITY
OF THE DISABILITY. IS TiORALLY AND LEGALLY INDEFENSIBLE.”

THE STATEMENT GOES ON TO HIGHLIGHT THE “NEED FOR INFORMATION”
WHICH WILL “IMPROVE DECISION-iIAKING ABOUT DISABLED INDIVIDUALS,
ESPECIALLY NEWBORNS. “MEDICAL CARE” AND THE ROLE OF BOTH GOVERNMENT
AND THE COMMUNITY ARE ALSO DEALT WITH IN THIS STATEMENT. IF YOU
HAVE NOT READ IT. I URGE YOU TO GET A COPY BY WRITING DIRECTLY TO
ANY OF THE 9 SIGNATORIES.

AT THE BEGINNING OF THIS YEAR, I DOUBT THAT MORE THAN 2 OR 3 OF
THESE 9 GROUPS COULD HAVE AGREED ON SUCH A BROAD STATEMENT, ALTHOUGH
THEY ALL BELIEVE DEEPLY IN THE ISSUES AS WELL AS IN THE NEED TO KEEP
MOVING FORWARD. BUT, AS THE DEBATE OVER THE “BABY DOE” CASES
UNFOLDED, I THINK THE HEED FOR ACCOMMODATION AND CONSENSUS BECAME
INCREASINGLY CLEAR TO EVERYONE. YES, PRINCIPLES ARE AT STAKE...

BUT THEY ARE NOT AT RISK.
~18-

EVENTS HAVE MADE THIS PAST YEAR BOTH HECTIC AND CROWDED. BUT IT
HAS BEEN A GRATIFYING YEAR AS WELL. I'VE NOT BEEN GONE THAT LONG
FROM THE CHILDREN'S HOSPITAL OF PHILADELPHIA THAT I'VE FORGOTTEN THE
ENORMOUS PERSONAL AND FAMILY PROBLEMS FACED BY A NUMBER OF MY FORMER
PATIENTS, LITTLE CHILDREN WHO HAD TO BE HOOKED UP TO A VENTILATOR TO
GET THROUGH THE FIRST FEW MONTHS OF LIFE WITH A DISABILITY.

SQ THE HARD WORK OF THE PAST YEAR DOES HAVE ITS VERY PRECIOUS
REWARDS. MORE CHILDREN AND MORE ADULTS ARE GOING TO GET A BETTER

BREAK IN LIFE. AS A RESULT OF WHAT WE'VE ACCOMPLISHED...AND WHAT WE
INTEND TO ACCOMPLISH. |

AND ANYWAY, IT SEEMS TO ME THAT GETTING DEEPLY INVOLVED IN JUST
THIS KIND OF ISSUE IS PRECISELY WHAT AN OFFICE SUCH AS MINE OUGHT TO

DO,

OR ELSE...REALLY...WHAT ARE SURGEONS GENERAL FOR?

THANK YOU,..AND BEST WISHES AT THIS SEMINAR.

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