ADOLESCENT FEAR OF LACK OF CONFIDENTIALITY IS A MAJOR
REASON WHY THOUSANDS OF ADOLESCENTS AVOID HEALTH
CARE FACILITIES.
EVEN THOSE WHO CAN AFFORD MEDICAL CARE BECAUSE THEY
ARE COVERED BY THEIR PARENTS’ INSURANCE WILL AVOID
NEEDED HEALTH CARE IF INSURANCE COVERAGE MEANS A
BREACH OF CONFIDENTIALITY.

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TRUE, PARENTAL INVOLVEMENT IN ADOLESCENT HEALTH IS
IMPORTANT, BUT IT CANNOT BE ALLOWED TO STAND IN THE WAY

OF ADOLESCENT HEALTHCARE.

/

101
AS IS THE CASE WITH SO MANY PROBLEMS, SOONER OR LATER

WE NEED TO TALK ABOUT MONEY.

ADOLESCENT HEALTH CARE MUST BE

ADEQUATELY FINANCED.

102
ALL ADOLESCENTS NEED TO BE GUARANTEED ACCESS TO
HEALTH CARE, REGARDLESS OF ABILITY TO PAY.

IT IS A NATIONAL TRAVESTY TO HAVE SO MANY OF OUR CITIZENS
LIVE AMID THE SIGNS OF AFFLUENCE AND OPULENCE, BUT

UNABLE TO AFFORD BASIC HEALTH CARE.

FAR TOO OFTEN ACCESS TO HEALTH CARE FOR ADOLESCENTS
DEPENDS ON THE FAMILY’S FINANCIAL CIRCUMSTANCES, AND
EVEN UPON THE STATE IN WHICH THOSE CIRCUMSTANCES

OCCUR.

103
ABOUT 15 PERCENT OF ALL 10 TO 18 YEAR-OLDS LACK PUBLIC
FINANCING OR PRIVATE INSURANCE FOR HEALTH CARE COSTS.
IN FAMILIES LIVING UNDER THE POVERTY LEVEL, FULLY 35

PERCENT OF SCHOOL AGE CHILDREN LACK HEALTH INSURANCE.

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104
[FOR EXAMPLE, THE POVERTY LEVEL ESTABLISHED BY THE
FEDERAL GOVERNMENT FOR A FAMILY OF 3 IS $10,500.

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THAN $3,000 ANNUALLY, THEY ARE TOO RICH FOR MEDICAID.

105
THIS HAS A DEBILITATING EFFECT NOT ONLY ON HEALTH, BUT
ALSO ON MORALE. THOSE AMERICANS IN POVERTY AND ON
WELFARE WHO ARE DETERMINED TO WORK THEIR WAY UP, RUN
THE RISK OF WORKING THEMSELVES OUT OF POVERTY: INTO
MEDICAL INDIGENCE. AS THEIR INCOME RISES SLIGHTLY, THEY
EARN TOO LITTLE TO LIVE ON, BUT TO MUCH TO GET MEDICAID.
MEDICAID IS A MESS, AND IT IS BEGINNING TO COST LIVES,

RATHER THAN TO SAVE THEM.

106
INSURANCE COMPANIES HAVE RESPONDED TO THE CRISIS IN
ADOLESCENT HEALTH, AND THE CRISIS IN HEALTHCARE IN

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PREMIUMS SUDDENLY GO UP AS SOON AS MEDICAL BILLS COME
IN WITH ANY REGULARITY. OLDER ADOLESCENTS SUFFERING A
CHRONIC PROBLEM OR DISABILITY OFTEN FIND THEMSELVES
UNINSURABLE. AT AGE 22 THEY CAN FIND THEMSELVES
DROPPED FROM A PARENTAL POLICY --IF INDEED THEY WERE
EVER COVERED-—- AND THEN, THANKS TO COMPUTER DATA
BANKS, THEY ARE BLACK-LISTED BY ALL INSURANCE

COMPANIES, ~~ wS UMM ICH Ree

107
WE NEED TO MOUNT PUBLIC PRESSURE AND DIRECT
LEGISLATION TO IMPROVE PUBLIC AND PRIVATE INSURANCE.
OUR CURRENT SYSTEM OF HODGE-PODGE AND SHELL GAMES IS

A NATIONAL DISGRACE.
AT CHILDREN AND ADOLESCENTS SHOULD HAVE ACCESS TO

ADEQUATE HEALTH CARE INSURANCE. IT MUST COVER CHRONIC

CARE AND CARE IN THE COMMUNITY.

108
IT MUST RECOGNIZE THE COMPREHENSIVE NEEDS OF CHILDREN,
ADOLESCENTS, AND THEIR FAMILIES.

IT MUST ASSURE EQUAL ACCESS TO CARE FOR ALL
ADOLESCENTS ACROSS GEOGRAPHIC BOUNDARIES.

ABOVE ALL, INSURANCE COVERAGE MUST BE BROADENED TO
INCLUDE PREVENTIVE PROGRAMS. THAT SAVES MONEY AS WELL

AS LIVES.

109
FINANCING NEEDS TO BE CREATIVE TO ALLOW COLLABORATION
BETWEEN THE VARIOUS PROGRAMS AND PERSONS DEALING

WITH ADOLESCENT HEALTH.

THE COLD ECONOMIC REALITY IS SIMPLY THIS. IT IS A GOOD
INVESTMENT TO SPEND SOME MONEY --BOTH PUBLIC FUNDING
AND UNIVERSALLY AVAILABLE AND AFFORDABLE PRIVATE

INSURANCE-- RATHER THAN MORE MONEY LATER.

110
DOLLARS SPENT FOR HEALTHY CHILDREN AND ADOLESCENTS
WILL SAVE DOLLARS SPENT ON COSTLY ADULT HEALTH CARE
LATER.

IT 1S GOOD COMMON SENSE AND GOOD BUSINESS SENSE TO
RAISE A HEALTHY YOUNGER GENERATION, BUT IT HAS NOT BEEN

GOOD POLITICS.

YOUNG PEOPLE SUFFER FROM GOVERNMENT INATTENTION
BECAUSE THEY DON’T VOTE, AND THEY HAVE NO LOBBY TO
REPRESENT THEIR INTERESTS. SO GOVERNMENT HAS PROVEN
RELUCTANT TO SPEND FOR THE HEALTH OF CHILDREN AND
ADOLESCENTS, EVEN THOUGH THE LONG TERM BENEFITS AND
SAVINGS OUTWEIGH THE IMMEDIATE SHORT TERM

EXPENDITURES.

111
WE NEED TO CHANGE THAT SHORT SIGHTED THINKING.
WE MIGHT LEARN AT LEAST A LITTLE SOMETHING FROM RECENT
BOONDOGGLES LIKE THE S&L CRISIS, THAT CONFRONTING A

PROBLEM EARLY CAN AVOID BIGGER AND MORE COSTLY

PROBLEMS LATER ON.

112
| FEAR THAT THE ADMINISTRATION AND CONGRESS WILL NOT
ADDRESS THE ISSUE OF ADOLESCENT HEALTH ON THE CLEAR
MERITS OF THE SITUATION --IN SPITE OF THE NATION’S
AFFLUENCE AND PROSPERITY. THE DAY WILL COME WHEN THE
BUSINESS COMMUNITY WILL EXERT GREATER PRESSURE FOR
MORE REALISTIC FUNDING OF HEALTH CARE. WE MUST MAKE

SURE THAT ADOLESCENTS ARE NOT LEFT OUT.

113
FORTUNATELY SOME INDIVIDUALS AND CORPORATIONS, NOT
JUST HUMAN SERVICE ORGANIZATIONS, ARE SEEING THE
COMPELLING NEED TO INVEST IN THE HEALTH OF OUR CHILDREN
AND ADOLESCENTS, ...AN INVESTMENT IN THEIR HEALTH, NOT

JUST IN THE TREATMENT OF DISEASE.

WE NEED MAJOR CHANGES IN THINGS THAT ARE HARD TO

CHANGE: SOCIAL INSTITUTIONS AND PROFESSIONAL PRACTICES.

114
THE TASK BEFORE US IS DIFFICULT.

BUT SO ARE MANY OF THE TASKS DISCUSSED IN LECTURES
BEFORE THIS DISTINGUISHED AUDIENCE.

WE ARE HERE BECAUSE WE ARE CONCERNED.

WE ARE HERE BECAUSE WE BELIEVE IN THE ABILITY TO
TRANSLATE THE BEST OF THE SPIRIT OF MAN INTO ACTION, INTO

CHANGE.

115
LIFE AFFORDS NO GREATER RESPONSIBILITY, NO GREATER

PRIVILEGE THAN THE RAISING OF THE NEXT GENERATION.

TO BE TRUE TO THE SPIRIT OF THE SPIRIT OF MAN, I CALL UPON
YOU, UPON US ALL TO MAKE A FOCUSED COMMITMENT TO MEET
THE HEALTH NEEDS OF THIS NEGLECTED SEGMENT OF OUR

SOCIETY, OUR ADOLESCENTS.

116
NOW, THERE IS ONE MORE POINT I SHOULD MAKE IF WE ARE
GOING TO BE HONEST WITH OURSELVES IN DEALING WITH THESE
PROBLEMS OF ADOLESCENT HEALTH..... IF WE ARE GOING TO

DEAL WITH THESE PROBLEMS, NOT IN A THEORETICAL OR
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RHETORICAL WAY, PUT IN A DOWN-TO-EARTH, PRACTICAL, AND

PERSONAL WAY.

THE ISSUE SIMPLY STATED IS THIS:

ADOLESCENTS ARE NOT THE EASIEST PEOPLE TO DEAL WITH.

117
MANY ADULT AMERICANS ARE SIMPLY NOT DRAWN TO
AWKWARD, ABUSIVE ADOLESCENTS. THEIR ATTITUDES AND
BEHAVIOR CAN PUT OTHER PEOPLE OFF. AND, IN SPITE OF THE
POWER OF PEER PRESSURE, ADOLESCENTS OFTEN DON’T
ADMIRE EACH OTHER. THEY FIND FEW ROLE MODELS AMONG
THEMSELVES. AND THE ONES THEY DO FIND OFTEN LEAD THEM

DOWN THE WRONG PATH.

BUT THE PICTURE NEED NOT BE SO BLEAK. THERE ARE MANY
HEROS AMONG OUR ADOLESCENT POPULATION. IT’S TIME WE
GAVE THEM THEIR DUE, IT’S TIME WE LET THEM DO WHAT THEY

CAN DO AS ROLE MODELS FOR OTHER ADOLESCENTS.

118
TWO OF MY GREATEST HEROS, PEOPLE OF REAL INSPIRATION
ARE ADOLESCENTS. THEY CARRY ALL THE EMOTIONAL BURDENS
NORMAL TO ADOLESCENTS, BUT THESE TWO FELLOWS CARRY

MORE, MORE THAN | COULD BEAR.

PAUL AND CHRISTOPHER HAVE BEEN AN INSPIRATION TO ME,
AND TO COUNTLESS OTHERS, ADULTS, ADOLESCENTS, AND
CHILDREN. PAUL AND CHRISTOPHER HAVE LIVED ALL THEIR
LIVES WITH PROBLEMS THAT WE "NORMAL” PEOPLE LABEL AS ”

DISABILITIES.”

119
BUT THEIR DETERMINATION, THEIR RESILIENCE, THEIR
POSSESSION OF THE BEST OF THE SPIRIT OF MAN MADE ME ASK
MANY TIMES

*"WHO ARE THE TRULY DISABLED AMONG US?”

THERE WERE BEEN MANY TIMES DURING MY CAREER AS A
PEDIATRIC SURGEON, WHEN | HAD TO PUT ASIDE MUCH OF THAT
EXPERIENCE AND THAT RHETORIC -- WHAT MIGHT BE CALLED

THE "CONVENTIONAL WISDOM” OF DISABILITY.

120
PAUL CERTAINLY MADE ME DO THIS. NOT LONG AGO PAUL

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FINISHED WITH A VERY GOOD ACADEMIC RECORD...HE WAS ALSO
ON THE VARSITY BASKETBALL TEAM. AND HE WAS CLASS
VALEDICTORIAN. A RATHER GOOD RECORD, | WOULD SAY.

BUT | THINK THE "CONVENTIONAL WISDOM” OF DISABILITY
WOULD PROBABLY HAVE WRITTEN PAUL OFF MANY YEARS AGO.
PAS IS A GRADUATE NOT ONLY OF SECONDARY SCHOOL -- BUT
OF Be OPERATIONS. EACH OF THEM DIFFICULT, EACH OF THEM

NECESSARY, EACH OF THEM A TERRIBLE, TRAUMATIC

INTERRUPTION IN THE LIFE OF A GROWING BOY.

121
1 KNOW ABOUT THESE OPERATIONS BECAUSE I PERFORMED 37

OF THEM.

BUT PAUL SURVIVED THEM ALL -- AND THE GROWING PAINS OF
ADOLESCENCE, TOO -- AND TODAY HE IS A STRONG, DECENT,
BRIGHT YOUNG MAN, 4 Cote €€& GRanud7e
Douw A PEIPow StACE Ye 8.

LL MAKE A CONFESSION RIGHT HERE AND ADMIT THAT | DON’T
REALLY KNOW HOW HE DOES IT. BUT THROUGH THE YEARS HE

HAS ABSORBED THE SHOCK OF REPEATED OPERATIONS.

122

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HE HAS ABSORBED THE HIGHS OF LOVING, TENDER CARE AND

THE LOWS OF REJECTION.

YEAR AFTER YEAR HE HAS HAD TO ABSORB A GREAT DEAL OF
INFORMATION ABOUT HOW TO GO ON LIVING DURING THE
MASSIVE RECONSTRUCTIONS BEING DONE TO HIS FACE AND HIS

BODY.

WE WOULD CALL HIM A ”DISABLED, HANDICAPPED” CHILD. BUT
PAUL...SO COURAGEOUS AND SO VERY INNOCENT... HAS REFUSED
TO BE DISABLED AND HANDICAPPED. AND SO HE HAS ENDED
THIS CHAOTIC AND PAINFULLY LONG PERIOD OF CHILDHOOD,

PUBERTY, AND ADOLESCENCE AS AN IMPORTANT YOUNG MAN.

123
| COULD NOT HAVE DONE IT. | KNOW VERY FEW PEOPLE WHO
COULD. | THINK MOST OF US ARE TOO ”DISABLED” IN FAITH OR
IN SPIRIT OR IN COURAGE TO HAVE GONE THROUGH SUCH AN

ORDEAL OF PHYSICAL AND EMOTIONAL RECONSTRUCTION.

NO, THE ONLY PERSON WHO COULD HAVE SUCCESSFULLY
WEATHERED THE YEARS OF REPEATED SURGICAL ASSAULT IS, OF
COURSE...PAUL HIMSELF. HE HAS THE ABILITY. AND I AM VERY,

VERY PROUD TO CALL HIM MY FRIEND.

124
BUT LET ME ADD JUST A WORD ABOUT HIS FAMILY.

SOME YEARS AGO, WHEN PAUL WAS ABOUT TWO-THIRDS THE
WAY THROUGH HIS LONG SURGICAL ORDEAL, | WAS ASKED BY A
CANADIAN UNIVERSITY TO DELIVER A LECTURE ON A TOPIC
RELATED TO PAUL’S EXPERIENCE. | APPROACHED PAUL'S
MOTHER AND ASKED HER FOR ANY OBSERVATIONS SHE MIGHT
WANT TO MAKE. FOR EXAMPLE, | ASKED HER, "WHAT WAS THE

WORST THING THAT HAS EVER HAPPENED TO YOU IN YOUR

LIFE?”

125