TOTAL CARE FOR THE DISABLED CHILD

BY

        C, EVERETT KOOP, MD

  DEPUTY ASSISTANT SECRETARY FOR HEALTH

        AND SURGEON GENERAL

U,S, DEPARTMENT OF HEALTH AND HUMAN SERVICES

KEYNOTE ADDRESS TO THE FIRST INTERNATIONAL CONFERENCE ON

           PEDIATRIC SOCIAL WORK

            CHICAGO, ILLINOIS

             AUGUST 12, 1982


-l-

(GREETINGS TO HOSTS, SPECIAL GUESTS, ETC.1

  YOU HAVE ACCORDED ME A HIGH HONOR BY INVITING ME TO SHARE MY

THOUGHTS WITH YOU AT THIS FIRST INTERNATIONAL CONFERENCE ON PEDIATRIC

SOCIAL WORK.  I HAVE SPENT MY ENTIRE ADULT LIFE IN PEDIATRIC SURGERY,

AND IF I HAD IT TO DO ALL OVER AGAIN -- I GLADLY WOULD, THE ONLY

THING I WOULD CHANGE IS MY OVERALL GOAL: I WOULD WANT TO DO EVERYTHING

I HAD ALREADY DONE, BUT I WOULD WANT TO DO IT BETTER.

  MY PATIENTS HAVE BEEN AMONG THE MOST VULNERABLE OF HUMAN BEINGS,,,

CHILDREN WHO WERE EXPERIENCING A SEVERE PHYSICAL DISABILITY, A LIFE-

THREATENING DISABILITY, BUT WHO NEVERTHELESS COULD NOT TELL US ABOUT

IT,  IN SUCH SITUATIONS, HUMAN LANGUAGE -- OUR MOST EFFECTIVE MEDIUM

FOR GIVING REASSURANCE -- IS OF LITTLE OR NO USE, THESE PATIENTS ARE,

FOR ALL INTENTS AND PURPOSES, INCOMMUNICADO,

  YET, IT HAS BEEN MY EXPERIENCE, DURING THESE PERIODS OF TREATMENT

AND CARE, TO BE JOINED BY TRAINED, COMPASSIONATE SOCIAL SERVICE PROFES-

SIONALS,  I HAVE OBSERVED THEM GIVE OUR TINY PATIENTS A PRICELESS

MOMENT OR TWO OF COMFORT, AS WELL AS PROVIDE THE PARENTS AND SIBLINGS

WITH A MEASURE OF CHARITY AND UNDERSTANDING, WHAT THEY DO IS TO GIVE

BOTH THE FAMILY AND THE HOSPITAL STAFF THE STRENGTH TO KEEP GOING,


-2-

  SO IT IS WITH A DEEP SENSE OF BEING AMONG GOOD FRIENDS THAT I JOIN
YOU THIS EVENING TO TALK ABOUT SOME ISSUES THAT NEED TO BE ADDRESSED BY

BOTH THE MEDICAL AND THE SOCIAL SERVICES COMMUNITIES,  I WANT TO CON-

GRATULATE DR. JOHNSON AND HIS STAFF FOR THE OVERALL CONCEPTION OF THIS
CONFERENCE AND FOR BRINGING TOGETHER SUCH AN OUTSTANDING CONFERENCE

FACULTY,

  FIRST, LET ME SAY THAT I AM SINCERELY IMPRESSED BY THE EXTRAORDI-
NARY RANGE OF ISSUES THAT CONCERN YOU DURING THESE FOUR DAYS, MANY OF

THESE ISSUES HAVE LONG HISTORIES,  THEY HAVE BEEN MANKIND'S CONSTANT

COMPANIONS THROUGHOUT OUR JOURNEY ON THIS PLANET:

*   THE FREQUENT AMBIGUITY OF THE PARENT-CHILD RELATIONSHIP,

*   OUR EFFORTS TO SOMEHOW GIVE HUMAN LIFE A SPECIFIC VALUE,

+   THE RELIABILITY OF LOVE AS A PRIMARY MOTIVATION,

*   CHARITY'S VULNERABILITY TO DISGUISE,

9   AND OUR STUBBORN INNOCENCE IN DEALING WITH OUR OWN MORTALITY,


-3-

THESE AND OTHERS ARE NOT SIMPLE ISSUES. THEY DON'T INVITE SIMPLE

ANSWERS,  RATHER, THEY CHALLENGE US ON THE MOST PROFOUND LEVELS OF OUR

EXISTENCE,  AND IT MAY WELL BE THAT THE SINGLE BEST WAY TO MEASURE

JUST HOW "CIVILIZED" MANKIND HAS BECOME IS TO SEE THE EXTENT TO WHICH

WE CAN ADMIT THAT THESE ISSUES EXIST AND, ONCE HAVING DONE THAT, TO GO

FORWARD AND DEMONSTRATE THE WILL AND THE WIT TO DO SOMETHING ABOUT

THEM,

THIS WEEK, HERE IN CHICAGO, YOU ARE ALL MEASURING UP VERY WELL,

  AND THAT MAKES MY JOB ALL THE MORE DIFFICULT, BUT, WITH YOUR

INDULGENCE, LET ME SPEND THE NEXT FEW MINUTES SHARING WITH YOU SOME

INFORMATION THAT HAS COLORED MY OWN PERCEPTIONS IN THIS AREA, SOME

PERSONAL EXPERIENCES, AND SOME OBSERVATIONS ON ROLES -- SPECIFICALLY

THE ROLE OF MEDICINE AND THE ROLE OF SOCIAL SERVICE,

  FIRST, I THINK WE ALL NEED TO REMEMBER THAT, AS DIFFICULT AS OUR

OWN PARTICULAR TASKS MAY SOMETIMES BE AND AS SERIOUS AS SOME OF THE

SPECIFIC PROBLEMS MAY BE FOR OUR PATIENTS AND THEIR FAMILIES, THE

OVERWHELMING DIRECTION OF INFANT AND CHILD HEALTH IN THIS COUNTRY IS

TOWARD IMPROVED CARE AND BETTER OUTCOMES, THE INFANT MORTALITY RATE


-4-

IS STILL DECLINING: THE APRIL PROVISIONAL RATE, THE LATEST FIGURE WE

HAVE, STANDS AT 11,5 DEATHS PER 1,000 LIVE BIRTHS, THERE HAD BEEN

SOME FEELING IN THE PAST YEAR OR SO THAT WE WERE HITTING A PLATEAU,

THAT THE CURVE WOULD BEGIN TO FLATTEN OUT AND WE WOULD HAVE TO BEGIN

DEALING WITH THE HARD-CORE ISSUES AFFECTING PERINATAL CARE IN THIS

COUNTRY,  BUT THE CURVE IS NOT FLATTENING OUT, IT IS STILL GOING DOWN

AT ABOUT THE SAME ANGLE,

  WE ARE APPARENTLY DOING SOME THINGS RIGHT, ALTHOUGH IT IS NEARLY

IMPOSSIBLE TO IDENTIFY WHICH SPECIFIC "THINGS" ACCOUNT FOR WHAT POR-

TION OF OUR SUCCESS,  HENCE, SETTING PRIORITIES IS VERY DIFFICULT, IN

ADDITION, IT SEEMS CLEAR THAT MOST OF THE INFANT LIVES WE ARE SAVING

ARE HEALTHY LIVES,  THERE IS NO REAL EVIDENCE SO FAR THAT THE INFANT

MORBIDITY RATE IS RISING AS THE INFANT MORTALITY RATE GOES DOWN, BUT,

IN ALL CANDOR, WE HAVE NOT DONE THE KIND OF RESEARCH THAT'S REQUIRED

IN ORDER TO ELEVATE THIS CONCLUSION ABOVE THE LEVEL OF WHAT IT REALLY

IS: AN INSTINCTIVE, VISCERAL RESPONSE BY PEOPLE IN THE FIELD OF PERI-

NATOLOGY,


-5-

  BUT IT'S NOT NECESSARY TO HAVE STATISTICAL CURVES GO SHARPLY UP OR

DOWN TO UNDERSTAND THE IMPACT A DISABLED INFANT HAS UPON ITS PARENTS

AND THE ATTENDING MEDICAL AND SOCIAL SERVICES STAFFS, NOR DO WE NEED

A GREAT DEAL OF DOCUMENTATION TO KNOW THAT A DISABLED NEONATE EXACTS A

HIGH COST IN BOTH EMOTIONAL AND MONETARY TERMS, GIVING BIRTH IS A

HIGHLY COMPLEX EMOTIONAL, PSYCHOLOGICAL, AND PHYSICAL EVENT EVEN WHEN

A HEALTHY BABY IS DELIVERED,  HOW MUCH MORE COMPLEX IT CAN BE WHEN THE

INFANT IS DISABLED, ALL THE PERSONS INVOLVED -- PARENTS AND HOSPITAL

STAFF -- SHARE THE FEELINGS OF GUILT AND INADEQUACY,

  BUT ULTIMATELY IT IS THE INFANT ITSELF WHO NEEDS THE UNDERSTANDING

AND THE AFFECTION AND THE CARE IN ORDER FOR IT TO HAVE A CHANCE AT

LIFE.  AND HE OR SHE WILL GET IT, PROVIDING THE GROUNDWORK HAS BEEN

LAID THROUGH THE DEVELOPMENT OF A HUMAN CLOSENESS BETWEEN PARENTS AND

PHYSICIAN,  SOMETIMES THIS CAN BE CARRIED OUT BY THE PHYSICIAN: MUCH

DEPENDS ON TRAINING, PERSONAL COMMITMENT, WORKLOAD, AND OTHER FACTORS,

WHERE THIS KIND OF RELATIONSHIP IS NOT DEVELOPING, THE ASSISTANCE OF

SOCIAL SERVICE STAFF WOULD BE ESSENTIAL.


-6-

  THE OVERWHELMING NUMBER OF PARENTS OF HANDICAPPED NEWBORNS -- OVER

95 PERCENT -- TAKE RESPONSIBILITY FOR THEIR CHILDREN, TAKE THEM HOME,
AND TRY TO ABSORB THEM INTO THEIR FAMILY LIFE, OUR CHALLENGE IS TO
HELP THOSE PARENTS UNDERSTAND, LOVE, AND HELP THEIR CHILD, MEDICINE
AND SOCIAL SERVICE CANNOT TAKE THE PLACE OF THE FAMILY. RATHER, THEY
SHOULD USE THEIR TALENTS AND EXPERTISE TO HELP THE FAMILY SURVIVE AND
FUNCTION, TO RENEW ITS STRENGTH AND FOSTER ITS COHESION, FOR IT WILL
BE THE FAMILY THAT WILL PROVIDE THE LONG-TERM HELP REQUIRED BY THE
DISABLED INFANT, THE FAMILY'S DAILY DECISIONS, ROUTINES, AND RELATION-
SHIPS WILL TRANSLATE INTO THE SUPPORT, THE THERAPY, THE SPECIAL EDUCA-
TION AND RECREATIONAL EFFORTS, AND ALL THE OTHER ASPECTS OF THE BEST
POSSIBLE QUALITY OF LIFE FOR THE DISABLED CHILD,

  BUT THE CHANCE TO HELP PARENTS BECOME A FAMILY IS POSSIBLE ONLY IF
THE PARENTS ARE CAPABLE AND WANT IT TO HAPPEN, SOME AREN'T.. #AND
DON'T. A VERY SMALL PERCENTAGE OF OUR ADULT POPULATION IS NOT EMOTION-
ALLY OR MENTALLY COMPETENT AND, THEY THEMSELVES, REQUIRE SOCIETY'S
ATTENTION, SOME OF THEM BEAR CHILDREN AND IMMEDIATELY SURRENDER THEIR
INFANTS, EITHER VOLUNTARILY OR INVOLUNTARILY, SOME PARENTS ABANDON


-7-

THEIR CHILDREN AS SOON AS POSSIBLE, AND SOME KEEP THEM -- BUT NOT FOR

VERY LONG, THIS LAST GROUP NEEDS MUCH MORE OF OUR ATTENTION,

  AT THIS TIME WE DO NOT HAVE A CLEAR IDEA OF THE NUMBERS OF MOTHERS

WHO TAKE HOME INFANTS BORN WITH ONE OR MULTIPLE DISABILITIES, WHO TRY

TO ABSORB THE INFORMATION ABOUT THE CARE THEY NEED, WHO MAKE AN ATTEMPT

AT COPING WITH ALL THE ATTENDANT PROBLEMS -- BUT WHO ULTIMATELY DECIDE

TO SURRENDER THEIR CHILDREN FOR ADOPTION OR INSTITUTIONALIZATION. IT
HAS BEEN MY EXPERIENCE THAT MANY OF THESE DECISION WERE MADE BY PARENTS

WHO WOULD HAVE BEEN REWARDED A HUNDRED-FOLD BY THEIR CHILD, IF THEY

HAD ONLY HELD ON FOR JUST A LITTLE LONGER AND HAD BEEN GIVEN JUST A

LITTLE ADDITIONAL SUPPORT, AND THE CHILD, IN THE OVERWHELMING NUMBER

OF SUCH CASES, WOULD ALSO HAVE HAD A CHANCE AT A MORE FULFILLED AND

FULFILLING LIFE,  WHAT WENT WRONG? CAN WE DO ANYTHING ABOUT IT?

  I THINK THERE ARE SOME THINGS WE CAN DO THAT -- AGAIN FROM

PERSONAL EXPERIENCE -- I KNOW WILL WORK. THESE ARE TASKS THAT CUT

ACROSS DISCIPLINES AND I OFFER THEM TO THIS AUDIENCE BECAUSE OF THE

SCOPE OF INTERESTS AND SKILLS YOU REPRESENT,


-8-

                          PJJ -,?A r
THE FIRST TASK, IT SEEMS TO ME, WOULD BE TO PREPARE THE m
MEDICAL STAFF FOR POSSIBLE LONG-TERM RELATIONSHIPS WITH SOME PARENTS,
MOST DELIVERIES IN THIS COUNTRY ARE TROUBLE-FREE AND MOST INFANTS ARE
HEALTHY, HENCE, IT IS UNDERSTANDABLE WHEN MEDICAL STAFFS ARE COURTEOUS
AND CHEERFUL -- ALMOST BREEZY AT TIMES -- AND QUITE SKILLED AT KEEPING
THEIR PATIENT RELATIONS BRIEF AND SUPERFICIAL, AND, TO BE FAIR, I
THINK MOST PATIENTS WOULD JUST AS SOON HAVE IT THIS WAY, TOO, PARENTS
USUALLY TAKE THEIR BABIES HOME WITH THE STRONG WISH THAT THE CHILD MAY
NEVER HAVE TO SET FOOT IN THAT OR ANY OTHER HOSPITAL EVER AGAIN, AND
I WOULD BE THE FIRST ONE TO SAY "AMEN" TO THAT.

  BUT THEN THERE IS THE INFANT BORN WITH DOWN'S SYNDROME, THE SPINA
BIFIDA BABY, THE CHILD WITH SOME CONGENITAL DEFECT -- A DAMAGED ORGAN
SYSTEM, A MISSING OR DEFORMED LIMB -- OR ONE OF ANY NUMBER OF OTHER
DISABLING CONDITIONS. THE PEOPLE TO WHOM THE PARENTS TURN TO FIRST ARE
THE MEDICAL STAFF,  THE QUESTIONS COME POURING OUT:

WHAT DOES IT MEAN?,,,WHAT'S THE PROGNOSIS FOR LIFE?.,,WHAT KIND OF
LIFE WILL THE CHILD HAVE?,,, IS IT THE RESULT OF SOMETHING WE DID?



I . I IS IT BECAUSE WE SHOULD HAVE DONE SOMETHING AND DIDN'T?


-9-

  AT THAT POINT, THE PHYSICIAN-PATIENT RELATIONSHIP IS NO LONGER

CASUAL,  NOR WILL IT BE SHORT-TERM, THE PHYSICIAN HAS TO TRANSLATE
WHAT MIGHT BE COMPLICATED MEDICAL TERMINOLOGY INTO WORDS THE PARENTS

CAN UNDERSTAND -- AND NOT FEAR,  THE FIRST MEETING WITH PARENTS SHOULD

BE FOCUSED ENTIRELY ON DESCRIBING THE INFANT'S PARTICULAR PROBLEM,
THEY NEED TO UNDERSTAND THIS AS COMPLETELY AS POSSIBLE, IN ORDER TO
RATIONALLY TACKLE FAMILY, FINANCIAL, EMOTIONAL, AND OTHER ISSUES LATER

ON,  THEN THEY NEED SOME TIME TO THEMSELVES, BEFORE THE PHYSICIAN COMES
BACK TO ANSWER OTHER QUESTIONS AND THEN BEGIN TO HELP THEM FACE THE

FUTURE,

  ONE BASIC RULE NEEDS TO BE OBSERVED AT THIS TIME: NO MATTER HOW
SERIOUS THE INFANT'S CONDITION IS AND NO MATTER HOW IT MAY AFFECT THE
PHYSICIAN, IT IS ESSENTIAL THAT THE PHYSICIAN NOT TRANSMIT IN ANY WAY
A SENSE OF HOPELESSNESS OR FUTILITY OR, IN EFFECT, GO INTO MOURNING
FOR A CHILD WHO IS STILL IS VERY MUCH ALIVE, HOWEVER SEVERE ITS PHYSI-

CAL OR MENTAL BURDEN,

  WE ARE OUTRAGED AT PARENTS WHO PHYSICALLY ABANDON THEIR CHILDREN...

AND I AM OUTRAGED AT PHYSICIANS WHO INTELLECTUALLY ABANDON THEIR

PATIENTS,  NO MATTER HOW SOPHISTICATED OUR DIAGNOSTIC TECHNOLOGY, IT


-lO-

CAN STILL BE WRONG.  BY THE SAME TOKEN, THE SURVIVAL POWER OF THE HUMAN

BEING -- EVEN IN ITS TINY NEWBORN STATE -- CAN BE TRULY AWESOME.

  LET ME EMPHASIZE THAT RESTRAINING ONE'S SELF FROM SPEAKING IN
TERMS OF HOPELESSNESS IS NOT THE SAME THING AS OFFERING FALSE HOPES TO

CONFUSED AND FRIGHTENED PARENTS.  WE NEED TO BE CAUTIOUS, HONEST, AND
OBJECTIVE WITH PARENTS, BUT WE NEED TO BUILD ON THEIR STRENGTHS,

AND, AS I MENTIONED A MOMENT AGO, EXCEPT FOR A VERY SMALL PERCENTAGE
OF AMERICANS WHO EXHIBIT CERTAIN PERSONAL AND SOCIAL INADEQUACIES, WE

DO HAVE THE STRENGTHS TO CARRY US THROUGH SOME PRETTY DIFFICULT HUMAN

TRAUMA,

  THERE ARE WAYS TO TRAIN MEDICAL STAFF -- PHYSICIANS OF ALL AGES, I

MIGHT ADD -- TO HELP THEM PUT ASIDE THEIR SUPERFICIAL MANNER, WHEN THE

NEED IS CLEAR, AND SETTLE DOWN TO A CLOSE, COMPASSIONATE, HIGHLY PER-

SONAL, AND POSSIBLY PROLONGED RELATIONSHIP WITH PARENTS WHO MAY BE

SETTING OUT ON A LONG AND INTRICATE JOURNEY IN HUMAN GROWTH,


-ll-

  YOUNG PHYSICIANS ESPECIALLY NEED THIS KIND OF TRAINING. THEY WILL

HAVE JUST COME FROM AN EDUCATIONAL SYSTEM THAT MEASURES SUCCESS ALMOST

EXCLUSIVELY IN TERMS OF CURING AND REPAIRING PATIENTS AND RETURNING

THEM TO A NORMAL STATE, BUT MANY DISABLED NEONATES CANNOT BE "CURED"

OR READILY "REPAIRED,"  THEY MAY NEVER APPROACH WHAT MIGHT BE CON-

SIDERED A "NORMAL" STATE OF FUNCTIONING AT ANY TIME IN THEIR LIVES --

AND THEIR VERY LIVES MAY BE BRIEF.

  A SECOND AND COMPLEMENTARY TASK IS TO EXPAND AND STRENGTHEN THE

FACILITATING SKILLS OF THE SOCIAL SERVICES STAFF, I SPOKE RATHER

CASUALLY ABOUT THE MEETINGS BETWEEN ATTENDING PHYSICIAN AND PARENTS.

BUT THESE ARE NOT CASUAL EVENTS,  THEY NEED TO MEET IN PRIVACY AND IN

A SETTING THAT IS NOT MEDICALLY OR SOCIALLY INTIMIDATING, THE TIMING

MUST BE SUCH THAT BOTH PARENTS ARE AVAILABLE AND NOT PRESSED BY ANY

OTHER APPOINTMENTS,  THE PHYSICIAN MUST ALSO BE AVAILABLE AND HAVE

ENOUGH TIME TO WORK THROUGH ANY ESPECIALLY SENSITIVE INFORMATION,

  MOST PEOPLE MAY BE AWARE OF CERTAIN SOCIAL SERVICE OR HEALTH

AGENCIES OR MAY EVEN HAVE BEEN REGULAR CONTRIBUTORS TO CERTAIN


-12-

VOLUNTARY ORGANIZATIONS CONCERNED WITH ONE OR ANOTHER DISEASE OR
DISABILITY. BUT WHEN FACED BY THE IMMEDIATE NEED TO GET INFORMATION,
APPLY FOR HELP, REQUEST CERTAIN RESOURCES, MAKE CONNECTIONS, MAKE

DECISIONS -- MUCH OF THEIR PAST EXPERIENCE AND KNOWLEDGE BECOMES SOME-
HOW DISJUNCTIVE, EVEN IF THEY HAVE MADE A COMMITMENT TO CARE FOR THEIR
CHILD AND GIVE IT ALL THE LOVE IT NEEDS, THEY MAY BE OVERWHELMED BY THE
BYZANTINE COMPLEXITY OF OUR SOCIAL SERVICE DELIVERY SYSTEM, SOCIETY
MAY CONSPIRE AGAINST THEIR HUMANITY,

  IN MY PREVIOUS ROLE AS A PEDIATRIC SURGEON, I FREQUENTLY WAS THE
PERSON WHO WORKED SIDE-BY-SIDE WITH PARENTS, NEGOTIATING HELP FROM A
WIDE NETWORK OF PRIVATE, PUBLIC, FREE, AND FEE-FOR-SERVICE PROVIDERS,
IT IS NOT A SURGEON'S ROLE.  WE'RE JUST NOT VERY GOOD AT IT, WE DON'T
KNOW ALL THAT MUCH ABOUT WHAT'S AVAILABLE, BUT IT WAS BETTER THAN NO

HELP AT ALL,  IT'S ONLY FAIR TO ADD, HOWEVER, THAT THESE OCCASIONS
WERE USUALLY OF MY OWN CHOOSING, BASED UPON A CLOSENESS THAT MAY HAVE
DEVELOPED AMONG ME, MY PATIENT, AND ITS PARENTS, THE SOCIAL SERVICES
STAFF AT THE CHILDREN'S HOSPITAL OF PHILADELPHIA WAS -- AND STILL IS --

JUST FIRST-RATE,


-13-

  I USED THE TERM "FACILITATING" BECAUSE I THINK THE ROLE OF SOCIAL

SERVICES IS NOT OPEN-ENDED.  YOU CAN HELP MAKE GOOD THINGS COME TO

PASS, BUT YOU CANNOT INSURE THAT GOOD THINGS WILL COME TO PASS,

FAMILIES HAVE RICH AND VARIED BIOGRAPHIES, JUST AS INDIVIDUAL PEOPLE

DO.  FORTUNES RISE AND FALL. CHILDREN DO OR DO NOT ALL GET ALONG WITH

EACH OTHER,  MOTHERS MAY OR MAY NOT SUCCEED IN DEVELOPING A STRONG

BOND WITH THEIR DISABLED INFANT, HUSBANDS AND WIVES MAY OR MAY NOT

CLEAVE TO EACH OTHER TILL DEATH DOES THEM PART, AND THE DISABLED

INFANT.,.GROWING CHILD, a a YOUNG ADULT,.,AND ADULT ARE PART OF THAT

EVOLUTION, THAT MIRACLE OF HUMAN GROWTH,

  THIS IS AN IMPORTANT POINT, SINCE SOCIAL SERVICE WORKERS, SPECIAL

EDUCATION PERSONNEL, AND OTHERS WHO DELIVER THESE VITAL HUMAN SERVICES,

ARE VULNERABLE TO THE "BURN-OUT" SYNDROME, THAT IS A TERRIBLE LOSS --

BOTH PERSONAL AND PROFESSIONAL.

  I DON'T PRETEND TO KNOW WHERE THE DIVIDING LINE IS, MAYBE THERE

JUST ISN'T ONE TO SHOW: MAYBE EACH PERSON HAS TO FIND HIS OR HER OWN,


-14-

BUT CLEARLY, IN THIS AREA OF SERVICE TO DISABLED CHILDREN AND THEIR
PARENTS, EACH SERVICE PROFESSIONAL NEEDS TO SET SOME LIMIT ON HOW MUCH
OF ONE'S SELF CAN BE SAFELY INVESTED IN OTHERS, WITHOUT RUNNING THE
RISK OF LOSING ONE'S OWN PERSONA ALTOGETHER. PERSONALLY, I AM MORE
LIKELY TO TRUST PEOPLE WHO KNOW THEIR OWN VALUE, BECAUSE THEY ARE MORE
LIKELY TO RECOGNIZE AND APPRECIATE MINE.

  A THIRD TASK FOR US ALL, AND THE LAST ONE I WANT TO DWELL ON TODAY,
IS THE NEED TO CONTROL -- RATHER BE CONTROLLED BY -- THE NEW TECHNOLOGY
OF MEDICINE AND HEALTH CARE. ONE OF THE MOST CURRENT AND, I WOULD ADD,
THE MOST DRAMATIC EXAMPLES IN THE FIELD OF NEONATOLOGY, CONCERNS THE
PROBLEM OF THE RESPIRATOR-DEPENDENT CHILD,

  EARLIER ON, I MENTIONED THE FACT THAT THE INFANT MORTALITY RATE WAS
DECLINING AND THAT, AS NEAR AS WE COULD TELL, MOST OF THE BABIES WERE
ARE SAVING ARE HEALTHY BABIES,  THE MORBIDITY RATE IS NOT TURNING
SHARPLY UP, LIKE A LOT OF PEOPLE WHO GIVE KEYNOTE SPEECHES, I TOO MAY
HAVE OVERSIMPLIFIED TO MAKE MY EARLIER POINT, SO LET ME CORRECT THAT
IMPRESSION WITH THIS EXAMPLE.


-15-

  A NUMBER OF THE INFANTS WE ARE SAVING ARE PREMATURE OR LOW BIRTH

WEIGHT OR IMMATURE IN SOME ASPECT OF THEIR DEVELOPMENT, THEY MAY BE

IMMEDIATELY TAKEN TO AN INFANT INTENSIVE CARE UNIT, IF THERE IS ONE

AVAILABLE WITH A WAITING BASSINETTE, AND PUT ON RESPIRATOR THERAPY

UNTIL THEY ACHIEVE NORMAL WEIGHT AND LEVEL OF DEVELOPMENT, THESE

BABIES ARE USUALLY THE ONES THAT MIGHT NOT HAVE SURVIVED THEIR BIRTH

NOT TOO LONG AGO, BUT TODAY THEY ARE ALIVE, BUT THEY REPRESENT A NEW

CATEGORY OF DISABLED CHILD -- A CATEGORY CREATED BY THE I,I.CJJ~

TECHNOLOGY,

  AT PHILADELPHIA CHILDREN'S, WHEN WE WERE DEVELOPING THIS LIFE-

SAVING TECHNOLOGY, THE COST OF THIS IN-PATIENT THERAPY WAS ABOUT

$1,000 PER DAY PER RESPIRATOR-DEPENDENT CHILD, IN A 12-MONTH PERIOD,

FROM 1980 TO 1981, THERE WERE 235 SUCH CHILDREN IN THE COMMONWEALTH OF

PENNSYLVANIA,  A CHILD WAS "DEPENDENT" IF IT HAD TO BE ON THE RESPIR-

ATOR FOR NOT LESS THAN 4 HOURS A DAY FOR 30 DAYS OR MORE IN THAT

CALENDAR YEAR,  A LITTLE SIMPLE ARITHMETIC TELLS YOU THAT THE MINIMUM

COST FOR THE CARE OF THESE CHILDREN THAT YEAR HAD TO BE NOT LESS THAN

$7,0001000 MILLION FOR THE CARE OF RESPIRATOR-DEPENDENT CHILDREN WHO

FIT THE SURVEY'S MINIMUM DEFINITION,


-16-

  THE COST IS VERY HIGH, NOT ONLY IN DOLLARS BUT IN FAMILY STRESS AS

WELL.  THE CHILD IS DENIED THE INITIAL, VITAL ATTENTION OF THE MOTHER,
OPPORTUNITIES FOR EARLY BONDING ARE GONE, THE ENTRY OF THAT CHILD INTO

ITS FAMILY IS DELAYED,,, DEPENDING UPON THE CIRCUMSTANCES, POSSIBLY

DELAYED FOREVER.

  WE LOOKED INTO THE SITUATION AND WE DISCOVERED THAT THE TECHNOLOGY

ALREADY EXISTED -- AND IT COULD BE FURTHER REFINED -- TO PROVIDE THE
RESPIRATOR SUPPORT FOR SUCH CHILDREN IN THEIR OWN HOMES, THE COST IS
ESTIMATED TO BE ABOUT $200 A WEEK,  THEORETICALLY, THEN, IF THOSE SAME
235 CHILDREN, THE ONES WHO MET THE SURVEY'S MINIMUM DEFINITION, WERE
ALL ALLOWED TO GO HOME, THE COST FOR RESPIRATOR SUPPORT WOULD BE ONLY

$188,000,

  NATURALLY, THEY ALL COULD NOT GO HOME, AND FOR THOSE WHO DID,
OTHER KINDS OF SERVICES WOULD HAVE TO BE PROVIDED IN THEIR HOMES,
SERVICES SUCH AS PHYSIOTHERAPY, OCCUPATIONAL THERAPY, SOME SPECIFIC
NURSING CARE, AND SPECIAL EDUCATIONAL SERVICES, BUT EVEN ADDING THESE
TO OUR THEORETICAL TOTAL, WE STILL ARRIVE AT A HOME-CARE COST THAT IS
SIGNIFICANTLY LESS THAN $7,000,000.


-17-

  THE SAVINGS ARE NOT JUST IN DOLLARS, THERE ARE ALSO THE HUMAN
SAVINGS, A POSSIBLE REDUCTION IN THE ENORMOUS EMOTIONAL AND PSYCHOLOGI-
CAL BURDENS CARRIED BY THE CHILD AND ITS FAMILY, AND I WOULD ADD THE
DIVIDENDS OF FAMILY COHESION AND GROWTH, THE STRENGTHENING OF PARENT-
CHILD AND SIBLING RELATIONSHIPS, AND THE VERY SPECIAL DIVIDEND OF

FAMILY CARE AND LOVE,

  I BELIEVE WE HAVE TO SET SOME OF OUR OWN DEMANDS FOR THE IMPROVE-
MENT OF THIS NEW RESPIRATOR TECHNOLOGY. FOR EXAMPLE, IT HAS TO BE
REDUCED IN SIZE WITHOUT DIMINISHING ITS EFFECTIVENESS, IT HAS TO BE
SIMPLE ENOUGH TO OPERATE SO THAT UNTRAINED LAYPERSONS -- THE AVERAGE

PARENT OR SIBLING -- CAN OPERATE IT WITHOUT ENDANGERING THE CHILD, IT
HAS TO BE PORTABLE AND FLEXIBLE ENOUGH TO ADJUST TO DIFFERENT KINDS OF

LIVING ARRANGEMENTS,  NONE OF THESE CONDITIONS ARE IMPOSSIBLE TO MEET,

  BUT WE ALSO HAVE TO LOOK AT OUR MEDICAL AND SOCIAL SERVICES
PERSONNEL. WE NEED TO MAKE SURE THEY UNDERSTAND THAT THE MOVEMENT OF
THE CHILD OUT OF THE HOSPITAL AND INTO THE HOME SHOULD BE ACCOMPLISHED

AS SOON AS POSSIBLE,  THEY NEED TO PREPARE THE FAMILY FOR THAT EVENT,


-18-

THEY MAY NEED TO WORK WITH INSURERS, THIRD-PARTY PAYORS, OR VOLUNTARY
AGENCIES TO HELP THE TRANSFER TAKE PLACE, THEY NEED TO OPEN LINES OF
EMERGENCY COMMUNICATION FOR PARENTS TO USE -- OR AT LEAST TO KNOW ARE

THERE,  IN OTHER WORDS, THEY HAVE TO TAKE SERIOUSLY THIS NEW OUTPATIENT
OPTION AND CONVEY THEIR BELIEF IN IT TO THE PARENTS OF THEIR
RESPIRATOR-DEPENDENT PATIENTS.

  WE ARE LOOKING AT THIS IMPORTANT DEVELOPMENT FROM THE POINT OF
VIEW OF THE GOVERNMENT'S REIMBURSEMENT PROGRAMS, AS YOU MAY RECALL,
THE GOVERNMENT HAD IN PLACE REGULATIONS THAT PREVENTED LITTLE KATIE
BECKETT FROM RETURNING TO HER PARENTS' HOME IN IOWA BECAUSE, IN DOING
SO, SHE WOULD HAVE LOST HER MEDICAID ELIGIBILITY,  IN OTHER WORDS,

BEING SENT HOME WAS A FORM OF PUNISHMENT,

IT MADE NO SENSE,

  SECRETARY RICHARD SCHWEIKER, WHEN INFORMED OF THIS CASE, STEPPED
IN AND PERMITTED KATIE TO GO HOME AND HER FAMILY TO CONTINUE RECEIVING

SUPPORT,  IT WAS AN EXTRAORDINARY ACTION AND NOT THE WAY TO RUN THE
GOVERNMENT ON A DAY-TO-DAY BASIS,  THE DEPARTMENT OF HEALTH AND HUMAN


-19-

SERVICES, AT SECRETARY SCHWEIKER'S DIRECTION, NOW HAS A BOARD OF REVIEW
AND A NEW SET OF REGULATIONS THAT ALLOWS THE KATIE BECKETTS OF THIS
COUNTRY TO GET THE HOME CARE THEY SHOULD HAVE AND STILL RECEIVE THE
GOVERNMENT ASSISTANCE FOR WHICH THEY ARE ELIGIBLE,

  WE AREN'T GOING TO MOVE ALL OUR RESPIRATOR-DEPENDENT CHILDREN OUT
OF INTENSIVE CARE WITH THE HELP OF THIS BOARD, SOME CHILDREN WITH
PROGRESSIVE NEUROMUSCULAR DISABILITIES MUST BE KEPT ON THE EQUIPMENT
FOR THE REST OF WHAT MAY BE A BRIEF LIFE. OTHER CHILDREN WITH CERTAIN
CONGENITAL ANOMALIES THAT JUST TAKE A LITTLE TIME TO SELF-CORRECT OR
BE SURGICALLY CORRECTED CAN COME OFF THE HOSPITAL EQUIPMENT AND MAY
HAVE THE CHANCE TO GO HOME MUCH SOONER THAN WE HAD ONCE THOUGHT

POSSIBLE a  AND STILL OTHERS, QUADRIPLEGIC CHILDREN, NOT NEONATES BUT
OLDER CHILDREN WHO HAVE BEEN IN AUTO ACCIDENTS OR HAVE SUFFERED OTHER
TRAUMA, SEEM TO BE THE MOST STABLE AND MAY BE SENT BACK TO THE CARE OF
THEIR FAMILIES MUCH SOONER,


-2O-

  THESE ARE DECISIONS THAT ARE JUST NOW BEING MADE BY MEDICAL AND

SOCIAL SERVICES STAFFS IN THOSE HOSPITALS WHERE THIS KIND OF THERAPY

IS EVOLVING,  LATER THIS YEAR, WE PLAN TO HOLD A SURGEON GENERAL'S
CONFERENCE ON THE DISABLED CHILD AND CERTAINLY ONE OF THE MAIN TOPICS
ON THE AGENDA WILL BE THE FUTURE OF RESPIRATOR THERAPY IN THE FAMILY

SETTING.  SO I AM HOPEFUL OF MUCH PROGRESS IN THIS AREA, I ALSO HOPE
THAT THESE KINDS OF EXPERIENCES WILL GRADUALLY GIVE US THE ABILITY TO
CONTROL AND DIRECT THE FUTURE OF MUCH OF OUR MEDICAL TECHNOLOGY SO

THAT IT REMAINS OUR SERVANT AND NOT OUR MASTER,

  I'VE HAD MORE THAN MY SHARE OF TIME AT THE PODIUM, FOR WHICH I AM
GRATEFUL. BUT TO BE HONEST WITH YOU, I COULD STAY HERE AND CONTINUE
TO SPEAK OF THE GREAT NEED FOR THE KIND OF WORK YOU DO NOT ONLY WITH

INFANTS BUT WITH CHILDREN OF ALL AGES AND WITH ALL DISEASE AND

DISABLING CONDITIONS,  IT IS PROFOUNDLY IMPORTANT FOR OUR SOCIETY THAT

WE TEND TO THESE ISSUES, THAT THESE CHILDREN NOT BE FORGOTTEN OR

PUSHED ASIDE, AND THAT WE RETAIN OUR BELIEF IN THE STRENGTH OF THE

AMERICAN FAMILY TO ABSORB WHATEVER LIFE HAS TO OFFER,

  IN THIS CONNECTION, I WANT TO CLOSE WITH A LITTLE STORY OF A

PERSONAL EXPERIENCE I HAD NOT LONG AGO,  I HAD BEEN INVITED TO GIVE A


-21-

LECTURE AT THE UNIVERSITY OF TORONTO ON THE SURGEON'S ROLE IN THE CARE
OF THE DISABLED NEWBORN.  WHILE PREPARING MY NOTES, I CONSULTED WITH
THE MOTHER OF A PATIENT OF MINE, A CHILD BORN WITH MULTIPLE CONGENITAL

DEFECTS,  I ASKED HER TWO QUESTIONS,  I WANT TO REPEAT THEM -- AND HER

ANSWERS -- FOR YOU TODAY, FIRST, I ASKED HER, "WHAT WAS THE WORST
THING THAT HAS EVER HAPPENED TO YOU IN YOUR LIFE?"

  SHE ANSWERED, "HAVING OUR SON, WHO WAS BORN WITH ALL THOSE DEFECTS
THAT REQUIRED 37 OPERATIONS TO CORRECT,"

  I WASN'T SURPRISED BY HER ANSWER, SINCE I HAD PERFORMED 22 OF

THOSE OPERATIONS,  BUT I ALSO KNOW THAT SHE HAS A STRONG FAMILY, A
DEVOTED HUSBAND, AND TWO OTHER CHILDREN WHO WERE BORN HEALTHY AND HAVE
BEEN LOVING SIBLINGS TO HER SON, - THEN I ASKED HER, "ALL RIGHT, NOW
WHAT WAS THE BEST THING THAT EVER HAPPENED IN YOUR LIFE?"

  AND SHE ANSWERED, "HAVING OUR SON, WHO WAS BORN WITH ALL THOSE
DEFECTS THAT REQUIRED 37 OPERATIONS TO CORRECT."

  IN CASE I HAD FORGOTTEN, THIS WONDERFUL WOMAN REMINDED ME THAT OUR
HOMES ARE FILLED WITH LOVE, AND COURAGE, AND UNDERSTANDING, AND THEY

ARE GOOD HOMES FOR ALL OUR CHILDREN.

THANK YOU,

#####