* CFS : bee, : = e DEPARTMENT OF HEALTH & HUMAN SERVICES Public Health Service “hm Office of the Assistant Secretary \ for Heaith Washington DC 20201 a sf itf[ile STATEMENT BY , C. EVERETT KOUP, M.D. SURGEON GENERAL AND DEPUTY ASSISTANT SECRETARY FOR HEALTH BEFORE THE COMMITTEE ON LABOR AND HUMAN RESOURCES UNITED STATES SENATE August 9, 1985 MR. CHAIRMAN AND MEMBERS OF THE COMMITTEE. THANK YOU FOR THE OPPORTUNITY TO APPEAR BEFORE YOU TODAY AND TESTIFY ON AN ISSUE WHICH HAS ALWAYS BEEN OF SPECIAL CONCERN TO ME -~- THE CARE OF CHRONICALLY ILL CHILDREN. MY INITIAL THOUGHTS ON THIS SUBJECT ALWAYS TURN TO THE ROLE OF THE FAMILY, FOR MEDICINE AND SOCIAL SERVICE CANNOT TAKE THE PLACE QF 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 CHILD. THE FAMILY’S DAILY DECISIONS, ROUTINES, AND RELATIONSHIPS WILL TRANSLATE INTO THE SUPPORT, THE THERAPY, THE SPECIAL EDUCATION, THE RECREATTONAL EFFORTS, AND ALL THE OTHER ASPECTS OF THE BEST POSSIBLE QUALITY OF LIFE FOR THE DISABLED CHILD. THE OVERWHELMING NUMBER OF PARENTS OF HANDICAPPED NEWBORNS -- OVER 95 PERCENT -- TAKE RESPONSIBILITY FOR THEIR CHILDREN, TAKE THEM HOME, AND TRY 10 ABSORB THEM INTO THEIR FAMILY LIFE. OUR CHALLENGE IS TO HELP THOSE PARENTS © UNDERSTAND, LOVE, AND CARE FOR THEIR CHILD. HOW DO WE DO THAT? I WOULD LIKE TO SUGGEST THAT THE BEST ANSWER -~ WHATEVER IT IS -~ MUST DRAW UPON THESE PREREQUISITES: CER IonvE( THE MEDICAL AND SOCIAL SERVICES S#4EFS THEMSELVES MUST BE FULLY KNOWLEDGEABLE ABOUT THE PARTICULAR DISEASE PROCESS OR DISABLING CONDITION AFFECTING THE NEWBORN...THEY MUST KNOW THE CONDITION OF THE INFANT ITSELF VERY WELL, THE HEALTH OF ITS ORGAN SYSTEMS. FOR EXAMPLE, AND ITS SENSORY AND SPEECH POTENTIAL...AND THE STAFFS MUST BE ABLE TO PUT THAT INFORMATION TOGETHER INTO A DISCREET. PERSONAL PORTRAIT OF THEIR INFANT PATIENT. THESE PREREQUISITES CAN USUALLY BE MET. HOSPITALS ARE REALLY VERY HETEROGENEOUS INSTITUTIONS AND THEIR STAFFS EXHIBIT A FULL RANGE OF KNOWLEDGE AND EXPERIENCE.. BUT THERE HAS TO BE A CERTAIN ADMINISTRATIVE TOUGHNESS OF JUDGMENT THAT WILL MAKE THE MOST CAPABLE HANDS If THE INSTITUTION AVAILABLE TO DISABLED INFANTS AND THEIR FAMILIES. I THINK THAT IS THE KEY. pmPLIED AS I [SBECAFED FARLIER. EVEN IF THEY DO GET THE BEST POSSIBLE GUIDANCE, DISABLED INFANTS AND THEIR FAMILIES MAY STILL FACE A FUTURE OF ENORMOUS HUMAN CHALLENGES IN THEIR COMMUNITIES AND If THEIR OWN HOMES. HOW MUCH MORE DIFFICULT a LIVES WILL BE, THEN, IF THE INITIAL HELP THEY RECEIVE FROM ss HOSPITAL STAFFZ IS NOT THE VERY BEST THAT'S AVAILABLE. STAFF EXCELLENCE, THEREFORE, MUST FORM THE BASIS OF ALL OUR PROCEDURES, ROUTINES. AND WORK-PLANS. -3- WELL, WHAT MIGHT BE SOME OF THE QUALITIES OR ACTIONS THAT DISTINGUISH A CONCERNED AND CARING STAFF? WHAT MAKES THEM EXCELLENT? IS EXCELLENCE ACHIEVED THROUGH REVELATION OR THROUGH SENSITIVITY AND HARD WORK? I CAN TELL YOU THAT IT IS NOT THROUGH REVELATION. A GOOD STAFF IS OPEN TO THE NEEDS OF ITS PATIENTS AND DRAWS LIBERALLY FROM THE STRENGTHS OF ITS OWN MEMBERS. FOR A LONG TIME -- SOME 35 YEARS -- IT WAS MY PRIVILEGE TO SERVE WITH THE STAFF AT CHILDREN’S HOSPITAL OF PHILADELPHIA. DURING THAT TIME A CONSENSUS OF PRINCIPLES SEEMED TO EVOLVE, THAT UNDERLAY THE WAY WE CARED FOR OUR DISABLED NEWBORN PATIENTS AND THEIR FAMILIES. THE FIRST PRINCIPLE IS TO OBTAIN OPEN, DIRECT. AND PERSONAL COMMUNI- CATIONS WITH THE PARENTS OF A DISABLED NEWBORN 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. 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. AT THAT POINT, THE PHYSICIAN-PATIENT: RELATIONSHIP IS NO LONGER CASUAL. IT CANNOT BE FLIP. AND 17 WON’T BE SHORT-TERM. THE PHYSICIAN HAS TO TRANSLATE THAT COMPLICATED MEDICAL TERMINOLOGY INTO WORDS THE PARENTS CAN UNDERSTAND -~ AND NOT FEAR. ya CHARCE I THINK IT IS ESSENTIAL FOR THE ATTENDING PHYSICIAN, IN PARTICULAR TO SIT DOWN WITH THE FAMILY AND CAREFULLY GO THROUGH THE NATURE OF THE INFANT'S CONDITION, WHAT THE MEDICAL EXPERIENCE WITH SUCH A CONDITION HAS BEEN SO FAR, WHAT KINDS OF OPTIONS ARE OPEN FOR IMMEDIATE ACTION, AND WHATS KIND OF OPTIONS MAY BE OPEN TO THE FAMILY AND THE PHYSICIAN LATER ON. ) . THE FIRST MEETING WITH PARENTS SHOULD FOCUS ENTIRELY ON DESCRIBING THE INFANT'S PARTICULAR PROBLEM. THE PARENTS NEED TO UNDERSTAND THIS AS COMPLETELY AS POSSIBLE, IN ORDER TO RATIONALLY TACKLE FAMILY, FINAN- CIAL, EMOTIONAL, AND OTHER ISSUES LATER ON. AT THIS TIME, PHYSICIANS AND OTHER STAFE NEED TO BE EXTREMELY CAUTIOUS ABOUT COMMENTING ON THE "QUALITY OF LIFE” THE TINY PATIENT WILL ULTIMATELY ENJOY. NO ONE, AFTER ALL. CAN PREDICT JUST HOW HAPPY OR SMART OR ACTIVE ANOTHER PERSON MAY BE AT SOME FUTURE TIME IN HIS OR HER LIFE. THE STAFF OUGHT NOT TO TRY. I HAVE PUT THIS PRINCIPLE FIRST -- THE NEED TO ESTABLISH DIRECT, CLOSE, CANDID, AND PERSONAL COMMUNICATIONS -- BECAUSE IT IS SURELY THE ONE UPON WHICH ALL OTHERS MUST STAND. A SECOND PRINCIPLE THAT IS PRACTICED BY AN EXCELLENT STAFF IS THIS: THE STAFF MUST RECOGNIZE AND UNDERSTAND THE NATURAL RESPONSES OF PARENTS TO THEIR DISABLED BABY...THEIR FEELINGS OF SADNESS, GUILT. ANGER, EVEN OF SHAME. THE PARENTS WILL BE CONCERNED ABOUT THE JUDG- MENTS OF THEIR NEIGHBORS AND THEIR FRIENDS. AND THEIR QUESTIONS BEGIN POURING OUT: “WHAT DOES IT MEAN?”...”WILL OUR BABY LIVE?”..."WHAT KIND OF LIFE WILL OUR CHILD HAVE?”...“1S IT THE RESULT OF SOMETHING WE DID?"... "IS IT BECAUSE WE SHOULD HAVE DONE SOMETHING AND DIDN'T?” THE QUESTIONS MAY COME IN_A RUSH, BUT THE ANSWERS SHOULD BE GIVEN ONLY AFTER A GREAT DEAL OF CAREFUL THOUGHT. THE STAFF NOW REPRESENTS NOT ONLY MEDICAL CARE -- BUT THE OUTSIDE WORLD AS WELL. IT MAY NOT BE FAIR FOR THE STAFF TO HAVE TO CARRY THIS ROLE RESPONSIBILITY ALSO. BUT IN SUCH INTENSE HUMAN SITUATIONS, A STAFF HAS MANY ASSIGNMENTS AND FEW CHOICES. NO MATTER HOW SERIOUS THE INFANT'S CONDITION IS AND NO MATTER HOW THE MEDICAL TEAM RESPONDS, IT IS ESSENTIAL THAT STAFF MEMBERS 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 11S PHYSICAL OR MENTAL BURDEN. WE ARE OUTRAGED AT PARENTS WHO PHYSICALLY ABANDON THEIR CHILDREN... AND I. AM OUTRAGED AT PHYSICIANS WHO INTELLECTUALLY ABANDON THEIR =~ Ul aad PATIENTS. NO MATTER HOW SCPHISTICATED OUR DIAGNOSTIC TECHNOLOGY. IT 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. WE NEED TO TRANSMIT THIS UNDERSTANDING 10 PARENTS, EVEN AS THEY VERBALIZE JHEIR MOST TROUBLING THOUGHTS. BUT I HAVE A PARTICULAR CAVEAT TO RAISE HERE. I WANT TO 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. AND WE NEED TO BUILD ON THEIR STRENGTHS, 1 DON'T WANT TO GIVE A FALSE PICTURE HERE. WE CAN HELP PARENTS BECOME A CLOSE AND LOVING FAMILY RIGHT AT THE POINT WHERE THEY ARE CON- FRONTING A DIFFICULT FUTURE. BUT THAT HELP WILL ONLY WORK IF THE PARENTS ARE CAPABLE AND DO WANT IT TO WORK. SOME AREN'T...AND DON'T. A VERY SMALL PERCENTAGE OF OUR ADULT POPULATION IS NOT EMOTIONALLY OR MENTALLY COMPETENT. AND THEY THEMSELVES REQUIRE SOCIETY'S ATTENTION. SOME OF THEM BEAR CHILDREN AND IMM IMEDIATELY SURRENDER THEIR INFANTS TO THE STATE, EITHER VOLUNTARILY OR INVOLUNTARILY. SOME PARENTS ABANDON 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 NUMBER OF MOTHERS WHO TAKE HOME INFANTS BORN WITH SINGLE OR MULTIPLE DISABILITIES...WHO TRY TO ABSORB THE INFORMATION ABOUT THE CARE THEY NEED...OR WHO TRY TO COPE WITH ALL THE ATTENDANT PROBLEMS -- BUT WHO ULTIMATELY DECIDE 10 SURRENDER THEIR CHILDREN FOR ADOPTION OR INSTITUTIONALIZATION. IT HAS BEEN MY EXPERIENCE THAT MANY OF THESE DECISIONS TO GIVE UP A CHILD WERE MADE BY PARENTS WHO WOULD HAVE BEEN REWARDED A HUNDRED- FOLD IF THEY HAD NOT GIVEN IT UP BUT INSTEAD HAD 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. THE THIRD PRINCIPLE EMPHASIZES THE FULL PARTICIPATION OF THE PARENTS AND SIBLINGS IN ALL THE PROCESSES OF MEDICAL CARE. IN AS MANY WAYS AS POSSIBLE, A STAFF NEEDS TO DEMONSTRATE TO THE PARENTS THAT THEY ARE NEEDED AS PARTNERS. IT IS NOT ARTIFICIAL, NOT SOME RUSE TO TRICK THEM INTO DOING SOMETHING THEY OUGHT NOT TO DO. QUITE THE REVERSE. THERE 1S NO SUBSTITUTE FOR A LOVING, CARING FAMILY. AS SOON AS POSSIBLE, THE PHYSICIAN AND OTHER STAFF MEMBERS SHOULD | TRY TO GET THE CHILD LITERALLY INTO THE HANDS OF THE FAMILY. A PARENT STARING THROUGH A PANE OF GLASS AT A LITTLE BABY IN A COVERED ISOLETTE OVER IN THE CORNER IS JUST NOT MY IDEA OF “FAMILY TOGETHERNESS.” I WAS IN THE HABIT OF URGING PARENTS TO VISIT THEIR CHILD AS SOON AND AS QFTEN AS POSSIBLE. OTHER FAMILY MEMBERS -- GRANDPARENTS, SIBLINGS, AUNTS. OR UNCLES -- WERE ALSO ENCOURAGED TO STOP BY. I WAS PROUD OF THE BABY AND I WANTED THEM TO BE, TOO. EVEN THOUGH THE BABY MAY BE BANDAGED, INTUBATED, MONITORED, AND FED WITH A HYPERALIMENTATION LINE. THE PARENTS CAN AND SHOULD TOUCH THE CHILD...IF POSSIBLE, THEY SHOULD ALSO HOLD IT AND CUDDLE IT. AS A LAST PRINCIPLE --- FOR MY PURPOSES THIS MORNING, AT ANY RATE -- IT WOULD SAY THAT THE MEDICAL AND SOCIAL SERVICE STAFFS NEED TO PLAY A POSITIVE, ACTIVE ROLE IN LINKING UP THE CHILD AND ITS FAMILY WITH THE AVAILABLE SOCIAL AND MEDICAL SUPPORT GROUPS IN THE COMMUNITY. IN OTHER CONTEXTS AND FOR MORE ROUTINE SITUATIONS WE ALL ADVOCATE CONTINUITY OF CARE AND TOTAL CARE FOR OUR PATIENTS AND CLIENTS. HOW MUCH MORE IMPORTANT IS THIS KIND OF APPROACH FOR INFANTS WITH DISABILI- TEs! THE MEDICAL AND SOCIAL SERVICE STAFFS WHO TAKE THIS PRINCIPLE SERIOUSLY HAVE THE SET OF MIND AND THE FIRM PROFESSIONAL COMMITMENT TO BECOME ADVOCATES FOR THEIR PATIENTS AND THE PARENTS. IN THAT ROLE. ‘HEY HELP MAKE THE VITAL CONNECTIONS BETWEEN HOME AND COMMUNITY RESOURCES. PEOPLE WHO WORK IN HOSPITALS, CLINICS, SCHOOLS OR OTHER SERVICE INSTITUTIONS ARE USUALLY FAMILIAR WITH MOST OF THE COMMUNITY SERVICES NETWORK -- AND VERY OFTEN THEY ASSUME THAT EVERYONE ELSE HAS THE SAME INFORMATION. BUT, IN POINT OF FACT, MOST PEOPLE DO NOT. MOST PEOPLE MAY, ON OCCASION, HAVE USED ONE OR ANOTHER SOCIAL SERVICE OR HEALTH AGENCY OR MAY EVEN HAVE REGULARLY CONTRIBUTED TO CERTAIN VOLUNTARY ORGANIZATIONS CONCERNED WITH A PARTICULAR DISEASE OR DISABILITY. BUT WHEN FACED WITH THE IMMEDIATE NEED,TO GET INFORMATION, APPLY FOR HELP, REQUEST CERTAIN RESOURCES, MAKE CONNECTIONS, MAKE DECI- SIONS -- MUCH OF THEIR PAST EXPERIENCE AND KNOWLEDGE BECOMES SOMEHOW DISJUNCTIVE. IF THE PARENTS AND THE STAFF HAVE FORMED A RELATIONSHIP BASED UPON THE PRINCIPLES I'VE TALKED ABOUT THIS MORNING -- EVEN IF THEY HAVE ALREADY MADE A FIRM COMMITMENT TO CARE FOR THEIR CHILD AND GIVE IT ALL THE LOVE IT NEEDS -- THEY MAY STILL BE TOTALLY OVERWHELMED BY THE BYZANTINE COMPLEXITY OF OUR SOCIAL SERVICE DELIVERY SYSTEM. SOCIETY ~ MAY YET SEEM TO BE CONSPIRING AGAINST THEM. -10- 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. FRANKLY, SURGEONS ARE REALLY NOT VERY GOOD © AT IT. UNFORTUNATELY, THEY ARE NOT ALONE. MOST PHYSICIANS ARE JUST NOT THAT FAMILIAR WITH THE KIND OF HELP THAT'S AVAILABLE. AT BEST THEY MAY ONLY HAVE A SENSE THAT. THERE IS SOME HELP OUT THERE. BUT I HONEST- LY DON'T BELIEVE IT TAKES THAT MUCH EFFORT TO FIND THE APPROPRIATE SOCIAL SERVICE AGENCY FOR A DISABLED INFANT AND ITS FAMILY. | THINK IT'S IMPORTANT TO REMEMBER THAT “SOCIAL SERVICES” AS SUCH ARE NOT EXCLUSIVELY THE PROVINCE OF THE “SOCIAL SERVICE WORKER.” CERTAINLY WE EXPECT A GREATER PROFESSIONALISM FROM A PERSON TRAINED IN THIS FIELD, BUT THERE ARE MANY OTHER DISCIPLINES WITHIN THE HOSPITAL COMMUNITY THAT CAN BE HELPFUL, TOO. I AM THINKING IN PARTICULAR OF THAT NEW AND EXTRAORDINARY BREED OF INDIVIDUAL KNOWN AS THE “NEOMATAL INTENSIVE CARE NURSE.” THEY BRING TO THEIR JOB A TOTAL COMMITHENT TO CHILD HEALTH AND WELFARE...NOT IN THE ABSTRACT. BUT IN THE REAL WORLD OF DAY-TO-DAY CARE FOR TINY VULNERABLE, RUPTURED LIVES. I DON'T THINK IT'S AN OVER-STATEMENT TO SAY THAT MANY OF THESE NURSES DISPLAY VERY STRONG PARENTAL FEELINGS TOWARD THEIR DISABLED PATIENTS AND I HAVE OFTEN INVITED ONE OF THEM TO JOIN ME IN ONE OR ANOTHER OF MY PARENT ‘CONFERENCES. I. SHOULD ADD THAT, WHEN I DID TAKE PART IN THAT EFFORT TO SECURE COMMUNITY SOCIAL AND HEALTH SERVICES FOR MY PATIENTS, THE OCCASION WAS USUALLY OF MY OWN CHOOSING, BASED UPON A CLOSENESS THAT MAY HAVE _ DEVELOPED BETWEEN ME, MY PATIENTS, AND THEIR PARENTS, ALSO, I WAS IN THE MIDDLE OF THESE SITUATIONS FOR MANY, MANY YEARS AND SAW A NUMBER OF TODAY'S SERVICES BEING DEVELOPED FROM SCRATCH. BUT WE NEED TO KEEP OUR EYES WIDE OPEN, WHEN WE INTRODUCE THE PATIENT'S FAMILY TO THE WORLD OF SOCIAL SERVICES. YOU CAN HELP HAKE 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 INFANTS, HUSBANDS AND WIVES, MAY OR MAY NOT CLEAVE TO EACH OTHER TILL DEATH DOES THEM PART. AND THE DISABLED INFANT...GROWING CHILD...YOUNG ADULT...AND ADULT ARE PART OF THAT EVOLUTION, THAT MIRACLE OF HUMAN GROWTH. . AND, LIKE ALL MIRACLES, YOU CANNOT PREDICT HOW THIS ONE WILL TURN OUT EITHER, THAT WORD ~- “MIRACLE” -~ IS BEING WORKED VERY HARD THESE DAYS. IT TENDS TO BE USED WITH EVERY NEW DEVELOPMENT IN MEDICAL TECHNOLOGY, AND WE ARE MAKING EXTRAORDINARY PROGRESS. THE INFANT MORTALITY RATE 1S COMING DOWN AND AS NEARLY AS WE CAN TELL, MOST OF THE BABIES WE ARE SAVING ARE HEALTHY BABIES. BUT THE PICTURE IS REALLY NOT THAT SIMPLE. A NUMBER OF THE INFANTS WE ARE SAVING ARE PREMATURE OR ARRIVE WITH A LOW BIRTH WEIGHT OR ARE IMMATURE IN SOME ASPECT OF THEIR DEVELOPMENT AND EXHIBIT RESPIRATORY DISTRESS. THEY MAY BE IMMEDIATELY TAKEN TO AN INFANT INTENSIVE CARE UNIT, OR TRANSPORTED TO ONE, AND PUT ON A RESPIRATOR. THESE BABIES ARE USUALLY THE ONES THAT MIGHT NOT HAVE SURVIVED THEIR BIRTH JUST A FEW YEARS AGO. TODAY THEY ARE ALIVE. BUT THEY REPRESENT A NEW CATEGORY OF DISABLED CHILD -- A CATEGORY CREATED BY THE INFANT INTENSIVE CARE UNIT TECHNOLOGY. THE ALTERNATIVE FOR SUCH BABIES HAD ONCE BEEN DEATH. AT PHILADELPHIA CHILDREN’S, WHEN WE WERE DEVELOPING THIS LIFE-SAVING TECHNOLOGY, THE COST OF IN-PATIENT THERAPY WAS ABOUT $1,000 PER DAY PER RESPIRATOR-DEPENDENT CHILD. ONE SURVEY SHOWED THAT, IN THE 12-MONTH PERIOD FROM 1980 TO 1981, THERE WERE 2355 SUCH CHILDREN IN THE COMMONWEALTH OF PENN~ SYLVANIA. A CHILD WAS “DEPENDENT” IF IT HAD TO BE ON THE RESPIRATOR 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 $7,000,000 FOR THE CARE OF RESPIRATOR-DEPENDENT CHILDREN WHO FIT THE SURVEYS MINIMUM DEFINITION. ~13- 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 -- AND, DEPENDING UPON THE CIRCUMSTANCES, POSSIBLY DELAYED FOREVER. BEFORE CLOSING, THEREFORE, I WANT TO MENTION JUST FOUR POINTS THAT T HAVE MADE ON OTHER OCCASIONS CONCERNING THIS VERY IMPORTANT MATTER OF CARING FOR THE RESPIRATOR-DEPENDENT CHILD. EIRSL, THE RESPIRATOR-DEPENDENT CHTID IS A CREATURE OF OUR NEW TECHNOLOGY AND, IN FACT, NEEDS ADDITIONAL TECHNOLOGY TO RELIEVE THE FIX OF DEPENDENCY THAT IT IS IN. THIS IS NO LONGER A UNIQUE PROBLEM FOR MEDICINE. IT IS VERY USEFUL, THEREFORE, TO TAKE A CLOSE LOOK AT THE PROBLEM OF THE RESPIRATOR- DEPENDENT CHILD IN ORDER TO SEARCH OUT THOSE CONCEPTS AND APPROACHES THAT MAY PRODUCE WORKABLE SOLUTIONS IN OTHER, SIMILAR SITUATIONS. THE WAY WE HANDLE THIS PARTICULAR PROBLEM MAY IN FACT BE A KIND OF MODEL FOR THE WAY We MIGHT DEAL WITH MANY OTHER CONGENITAL ANOMALIES THAT TAX OUR HUMAN AND MATERIAL RESOURCES. SECOND, THE PROBLEM OF THE RESPIRATOR-DEPENDENT CHILD CONCERNS TECHNOLOGY BUT NOT EXCLUSIVELY. FUNDAMENTAL TO THE HANDLING OF THIS PROBLEM, I BELIEVE, ARE THE SEVERAL PRINCIPLES PROMOTING STAFF-FAMILY INTERPLAY. THIS IS WHERE TECHNOLOGY LEAVES OFF AND BASIC HUMANITY TAKES OVER. THIRD, IT PROVIDES US WITH A RATHER CLEAR ASSESSMENT OF HOW ADEQUATE -- GR INADEQUATE -- OUR SOCIAL SERVICES MAY BE NOT JUST FOR PATIENT CARE BUT FOR TOTAL FAMILY CARE AS WELL. -14- AND FOURTH, IT IS POSSIBLE FOR US TO BEGIN SOME LONGITUDINAL STUDIES OF HOW THESE PATIENTS DO BOTH IN THE HOSPITAL SETTING AND IN THE HOME, WHAT THE COSTS ARE AT EACH PLACE, WHAT THE EFFECTS ARE OF CHANGES IN TECHNOLOGY, WHAT THE COST/PRICE HISTORY IS, AND SO ON- MR. CHATRMAN, TH'S CONCLUDES MY STATEMENT. I WANT TO THANK YOU AGAIN FOR THE OPPORTUNITY OF JOINING YOU TODAY.