Amicus Curiae Brief — Bowen v. American Hospital Assn.

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Supreme Court, U.S.

“BS a. 1)

No. 84-1529 | AUG 29 1985

iL, JR.

IN THE JOSEPH F

CLERK

Supreme Court of the United States

OCTOBER TERM, 1984

MARGARET M. HECKLER, SECRETARY OF HEALTH

AND HUMAN SERVICES.

Petitioner.

VS.

AMERICAN HOSPITAL ASSOCIATION, et al.

Re spondents,

ON A WRIT OF CERTIORARI TO THE UNITED

STATES COURT OF APPEALS

FOR THE SECOND CIRCUIT

BRIEF AMICUS CURIAE OF

CARLTON JOHNSON

IN SUPPORT OF PETITIONER, MARGARET M.

HECKLER

James Bopp, Jr.

Thomas J. Marzen*

Thomas J. Balch

Sharon M. Paulus

The National Legal Center for

the Medically Dependent

and Disabled, Inc.

P.O. Box 441069

Indianapolis, IN 46204

(317) 632-6245

Attorneys for the Amicus

*Counsel of Record

Central Publishing Company. Inc.. Indianapolis. IN 46206

TABLE OF CONTENTS

Page

I Lh dS eco beitcccdisecededeccces ili

Interest of the Amicus Curiae ...................4. l

oe an i ceca ec encenseaee 2

a a, a cee eclewanseuns 5

RE eee 5

Il. THE SELECTION PROCESS AT OKLA-

HOMA CHILDREN’S MEMORIAL

HOSPITAL ILLUSTRATES THE

COMPELLING NECESSITY THAT

SECTION 504 APPLY TO DISCRIM-

INATORY MEDICAL PRACTICES ....... 6

A. The Selection Process Discriminated

Against Infants with Congenital Disabil-

i Ce Bie ee a eaees 7

B. Social, Intellectual, and Other Non-

Medical Criteria Were Considered in

Determining Whether an Infant Should

Be Denied Beneficial Medical Tred&tment 8

C. Recommendations for Denial of Beneficial

Medical Treatment Led to the Death of

EE. SG dd bectduacteus se 13

III. SECTION 504 WAS VIOLATED WHEN

HANDICAPPED INFANTS WERE

DENIED ACCESS TO MEDICAL CARE

AT OKLAHOMA CHILDREN’S MEM-

EE | EERE sce ucilecccdeccedecdene 15

A. Discrimination Between Infants with

“Significant Handicaps” and Infants with

“Minimal Handicaps” ir the Initial

Selection Process Violated the Plain

Language of Section 504................ 16

B. Discrimination Among Infants with

“Significant Handicaps” on the Basis of

Intellectual, Social, Economic, and other

Nonmedical Criteria Violated Plain

Language of Section 504................ 16

IV. CARLTON JOHNSON, AN INFANT WITH

CONGENITAL DISABILITIES, WAS

DENIED MEDICAL TREATMENT ON

TWO SEPARATE AND DISTINCT

OCCASIONS AT OKLAHOMA CHIL-

DREN’S MEMORIAL HOSPITAL IN

VIOLATION OF SECTION 504 ........... 18

V. THIS COURT SHOULD ACKNOWLEDGE

THE AUTHORITY OF FEDERAL LAW TO

PROTECT BOTH INFANTS WITH DIS-

ABILITIES AND THEIR PARENTS ..... 21

A. The Injunction Currently in Force Has

Prevented the Federal Government From

Investigating the Selection Process at

Oklahoma Children’s Memorial Hospital 21

B. Section 504 Must Apply to Discrim-

inatory Medical Practices to Protect

PaCenes TEAS «.o3svccesasseeneuueeess 22

C. The Federal Government Must Have the

Power to Investigate Allegations of

Discriminatory Conduct in all Fed-

erally Funded Programs ............... 24

COMGDREE . . . 4 ckcédcuetioces scenes aeuneeeennn 25

**f

TABLE OF AUTHORITIES

Cases: Pages:

American Hospital Association v. Heckler, No. 84-

6211 (2d Cir. Dec. 27, 1984), cert. granted, 105 S.Ct.

PUP CCSCMEG A ci ce ks sd eeccedeccceeces 5

American Hospital Association v. Heckler, 585 F.

i” 22

Lassiter v. Department of Social Services, 452 U.S. 18

ME CUAREEAS CGA de dbeedcedcrvdcececes 23

Southeastern Community College v. Davis, 442 U.S.

AUER we doe bchicccoaccccvececcce 15

Stanley v. Illinois, 405 U.S. 645 (1972) ............. 23

United States v. University Hospital, State University

of New York at Stony Brook, 729 F.2d 144 (1984) 15

Statutes:

ee DOR gk ccc ccccccccecce 15, 19

EE 18

Child Abuse Amendments of 1984, Pub. L. No. 98-457,

tit. 1 §§121-28, 98 Stat. 1749, 1752-55 (codified as

amended at 42 U.S.C. §§5101-5103 (Supp. 1985) 24

Rehabilitation Act of 1973 §504, 29 U.S.C. §794

eS Ce RhWesiebesicesvdccecsccese passim

Other Authorities:

Epstein, Meningomyelocele: “Pitfalls” in Early and

Late Management, 30 Clinical Neurosurgery 366

SE, OE A PT ere ee er ee 11

Freeman, Early Management and Decision Making

for the Treatment of Myelomeningocele: A Critique,

73 Pediatrics 564 (1984) ...........ccccceeeeees 13

Gerry, The Civil Rights of Handicapped Infants: An

Oklahoma “Experiment”, 1 Issues in L. & Med. 15

CREE kien ioe ckee odudatsadssn tenes beendseeess 22

Gross, Cox, Tatyrek, Pollay & Barnes, Early

Management and Decision Making for the Treat-

ment of Myelomeningocele, 72 Pediatrics 450

Ge 5s Gebers cede thhamendaeaiesbeneeesarke passim ,

Gross, In Reply, 74 Pediatrics 166 (1984) ........... 14

Gross, Newborns With Myelodysplasia — The Rest of

the Story, 312 New Eng. J. Med. 1632 (1985)... 9, 16

Homer, Selective Treatment, 84 Am. J. Nursing 309

SR wht dv wenennsausmindeenad GAs eh. 11

Kamin, The Science and Politics of I.Q. (1974) ...... 16

Jones, Bad Blood: The Tuskegee Syphilis Experiment

SE cakctanns Kubnckceen ceksabaneawhseudesdss 22

Kerr, Computing the Cost of Life, Newsday, June 2,

SEE 6 dni cnt uv meaved be buka aac eeeis 14

Liptak & Masiulis, Letters to the Editor: Care of

Infants with Myelomeningocele, 74 Pediatrics 165

CE -« talks dunks canden bad bins eee ane 63 ek ¢ . BB

Lorber, Early Results of Selection Treatment of Spina

Bifida Cystica, 4 Br. Med. J. 201 (1973)........ 9

Mapstone, Rekate, Nulsen, Dixon, Glaser & Jaffe,

Relationship of CSF Shunting and IQ in Children

with Myelomeningocele: A Retrospective Analysis,

BE Ce SD RE ORUIIED ob So cdcediecevcccee 8

McLone, Czyzewski, Raimondi & Sommers, Central

Nervous System Infections as a Limiting Factor in

the Intelligence of Children with Myelomeningocele,

Fe I SEE bing ccc ccobbstnecocsere x

McLone, Letters to the Editor: Care of Infants with

Myelomeningocele, 74 Pediatrics 163 (1984) ..... 14

McLone, Results of Treatment of Children Born with a

Myelomeningocele, 30 Clinical Neurosurgery 407

EE Satie scks chavs Pec UWbebebueeatccdndéen

Nelson, Behrman & Vaughan, Textbook of Pediatrics,

CRE GE. BOND naccncsepeseccescescccescovenges

Shaw, Defining the Quality of Life, 7 Hastings Center

NE EE eirbbbcus i dks 05es oD eNODEeKKEC CEs

Sherwood, Who Lives, Who Dies? — Part I, Cable

News Network Documentary, Radio TV Monitor-

ing Service Transcript at 2-3, 5,6, (February 21,

Mure a GA ces ga Cua cdsdoceednesek eaaeéns

Sherwood, Who Lives, Who Dies? — Part II, Cable

News Network Documentary Radio TV Monitor-

ing Service Transcript at 4-5 (February 22, 1984)

Shurtleff, Hayden & Lowser, Myelodysplasia:

Decision for Death or Disability, 291 New Eng. J.

INE Wid heck den beGecdbasdiciecis

Shurtleff, Letters to the Editor: Care of Infants with

Myelomeningocele, 74 Pediatrics 164 (1984) .....

Turnbull & Turnbull, Parents Speak Out: Then and

EE fi oldie ckdeeneuvadenveunses

Venes, Letters to the Editor: Care of Infants with

Myelomeningocele, 74 Pediatrics 162 (1984) .....

INTEREST OF AMICUS CURIAE

Carlton Johnson, a black male infant, was born

September 12, 1982. At birth, Carlton had

myelomeningocele, hydrocephalus, and associated

congenital anomalies. Carlton did not receive optimal

medical treatment. Instead, he was subjected to a dis-

criminatory selection process that denied him appropriate

medical care — surgery, placing a shunt and, later,

antibiotics and intravenous fluids. Carlton, unfortunately,

did not meet the intellectual, social, economic, and other

nonmedical criteria deemed necessary to provide disabled

infants access to proper treatment at Oklahoma Children’s

Memorial Hospital. He was, therefore, denied beneficial

medical treatment and transferred to a nursing care

facility. Surprisingly, Carlton survived and a year later the

myelomeningocele team at Oklahoma Children’s Memorial

Hospital reconsidered their initial recommendation for

non-treatment. Carlton finally received definitive medical

care in January, 1984 — a year and a half after his birth.

Further evaluation is necessary to determine the degree of

intellectual and physical impairment Carlton suffered asa

direct result of the delay in treatment.

Section 504 of the Rehabilitation Act of 1973, 29 U.S.C.

§794 (1982), is intended to prevent discrimination on the

basis of handicap. When Carlton Johnson was denied access

to medical treatment because of his handicaps — medical

treatment that an infant without disabilities would cer-

tainly have been provided — Carlton’s civil rights under

Section 504 were violated.

The National Legal Center for the Medically Dependent

and Disabled, Inc., a support center for the Legal Services

Corporation, represents Carlton in a prospective class ac-

tion litigation against individuals _ ssociated with

Oklahoma Children’s Memorial Hospital who selected

Carlton and other disabled children for non-treatment. An

allegation that Section 504 was violated by this selection

process is te crucial federal civil rights claim to be raised

by Carlton and his class. If Section 504 is held not to apply to

discriminatory medical practices, then Carlton will not

have this remedy available. This brief is thus offered to

illustrate the need for the application of Section 504 to

protect infants like Carlton. All parties have consented to

the filing of this brief.

SUMMARY OF ARGUMENT

A selection program that qualified some infants for life-

saving medical treatment and rejected others, illustrates

the compelling need for Section 504 of the Rehabilitation

Act of 1973, 29 U.S.C. §794 (1982) (hereinafter cited as

“Section 504”), to apply to discriminatory medical

practices.

This selection program, implemented by a team of health

care professionals at Oklahoma Children’s Memorial

Hospital, a state institution, was applied to infants with a

congenital disability known as myelomeningocele — an

opening in the spine. The results of the program over a five

year period were reported in medical literature. During

this process of selection among children with treatable

problems, social, economic, intellectual, and other non-

medical criteria were considered before the infant was

permitted full access to medical treatment. All of the

twenty-four infants subjected to this selection process, and

who were recommended for only “supportive care,” died.

The euphemism, “supportive care” entailed denial of bene-

ficial medical treatment; it consisted of minimal comfort-

care, without the use of antibiotics or sedatives.

Recommendations for “supportive care” were made for

about half of the infants seen, even though these children

had the same chance for survival with appropriate treat-

ment as did those infants who were deemed “worthy” of

proper treatment.

The plain language of Section 504 was vioiated twice

when these handicapped infants were denied the benefits of

medical treatment: 1) when the infant who had a prognosis

for survival with a “significant” handicap was placed in a

selection program instead of receiving proper treatment; 2)

when an infant in the selection program was evaluated on

the basis of social, economic, and intellectual criteria, as

well as the degree of the child’s physical disability and the

economic, intellectual, and emotional resources of the

family, in order to determine if the child qualified for treat-

ment.

Carlton Johnson is a black male born with

myelomeningocele. Now nearly 3 years of age, he was

evaluated by the myelomeningocele team at Oklahoma

Children’s Memorial Hospital shortly after his birth and

shortly after the time of the reported study. Carlton did not

meet the social, intellectual, economic, and other non-

medical criteria necessary to qualify him for proper treat-

ment. He was transferred, presumably to die, to an inter-

mediate nursing care facility.

One month later, Carlton returned to Oklahoma

Children’s Memorial Hospital. He was critically ill, suffer-

ing from severe dehydration and an ear infection. Instead

of the aggressive therapy that any nonhar.dicapped cnild

would have received, Carlton was denied the benefits of

laboratory tests to monitor his condition, intravenous

fluids, and antibiotics. But surprisingly, Carlton improved

after rehydration through oral-gastric tube feedings. His

infection subsided on its own.

: Carlton Johnson’s rights under the plain language of

Section 504 were violated twice at Oklahoma Children’s

Memorial Hospital. During his first admission; he was

subjected to an evaluation that led to a recommendation for

“supportive care” only, which discriminatorily denied him

access to beneficial medical treatment. During his second

admission, Carlton was deprived of appropriate treatment

in a life-threatening situation — treatment that would

have, without question, been provided to any

nonhandicapped infant

Section 504 must be held to apply to discriminatory

medical practices so that the federal government has the

power to investigate and remedy these types of dis-

criminatory conduct. Yet due to the injunction issued by

the lower court in this case, the Department of Health and

Human Services has been unable to investigate or remedy

the situation at Oklahoma Children’s Memorial Hospital.

While it is asserted that the final decision for “supportive

care” or treatment — actually a decision between life and

death — was left to the parents, parents do not have the

informational and emotional resources available to them to

make a competent decision immediately after the birth of

their disabled child. The parents routinely relied on the

expertise of the myelomeningocele team; there is no

evidence thai the parents are told of the nonmedical social,

economic, and intellectual criteria considered in making

the recommendation. The myelomeningocele team in fact

made the decision, not the parents. After a decision for

“supportive care” was effectuated and the child died, rights

to the companionship, care, and custody of the child were

lost. Thus, not only were child’s rights discriminatorily

denied, but parental rights were also violated.

A recent Act of Congress treats the type of dis-

criminatory conduct evidenced by the selection process at

Oklahoma Children’s Memorial Hospital as child abuse.

But the sole remedy the Act provides is termination of

federal funds to state child neglect and abuse agencies that

fail to pursue such instances of abuse. Unless Section 504

applies to discriminatory medical practices, the federal

government would be compelled to continue funding such

discriminatory medical treatment regimens, but be

required to terminate funding to state child protection

agencies that fail to pursue such instances of child abuse —

an absurd and anomolous result.

The federal government must have the power to

investigate and remedy allegations of discriminatory

medical practices in order to protect both disabled infants

and their parents; Section 504 must be available to parents

and disabled children to provide them a federal remedy for

medical discrimination. Children like Carlton Johnson are

in obvious need of the protection of federal civil rights law.

A decision by this Court that Section 504 does not apply to

discriminatory medical practices would unjustly deprive

the federal government, disabled children, and their

parents of this remedy.

ARGUMENT

I. INTRODUCTION

This amicus curiae brief is submitted on behalf of

Carlton Johnson, a child who has been subjected to dis-

criminatory medical treatment because of his disability, in

support of the position of the United States that Section 504

of the Rehabilitation Act of 1973, 29 U.S.C. §794 (1982),

applies to discriminatory medical practices.

The compelling need for the application of Section 504 to

discriminatory medical practices shall be demonstrated by

description of a selection process, implemented at

Oklahoma Children’s Memorial Hospital, a state institu-

tion, designed to sort out infants for treatment or nontreat-

ment based on projected intellectual status, their ability to

walk, and social and economic factors. This selection

process has been fully described and discussed in an article

authored by several of the health care professionals who

participated in it. Twenty-four disabled children subjected

to this process died after they were selected for the non-

treatment on the basis of criteria that clearly violate the

plain language of Section 504. The personal tragedy of

Carlton Johnson, who has been subjected to two separate

and distinct violations of Section 504 as a patient at

Oklahoma Children’s Memorial Hospital, will also be

described.

By holding that Section 504 does not apply to

discriminatory medical practices, the Court of Appeals for

the Second Circuit in American Hospital Association v.

Heckler, No. 84-6211 (2d Cir. Dec. 27, 1984), cert. granted,

105 S.Ct. 3475 (1985), effectively forbade the United States

from undertaking any investigative or enforcement action

to stop such blatant discriminatory conduct; it foreclosed

children with disabilities or their parents from invoking

the protection of Section 504 in the face of past or

continuing discriminatory medical practices.

If the Second Circuit decision is affirmed by this Court,

then Carlton Johnson and and other young disabled

children will not have the remedies afforded by Section 504

available to them; the federal government will be impotent

to intercede on behalf of these vulnerable infants even in

the face of egregiously discriminatory medical practices.

Such an absurd and unjust result must be rejected by this

Court.

II. THE SELECTION PROCESS AT OKLAHOMA

CHILDREN’S MEMORIAL HOSPITAL

ILLUSTRATES THE COMPELLING NECESSITY

THAT SECTION 504 APPLY TO

DISCRIMINATORY MEDICAL PRACTICES.

In October, 1983, a program of early selection for

treatment or nontreatment of infants born with

myelomeningocele was described in the medical journal

Pediatrics. Gross, Cox, Tatyrek, Pollay & Barnes, Karly

Management and Decision Making for the Treatment of

Myelomeningocele, 72 Pediatrics 450 (1983) (hereinafter

cited as “Gross”). The program was developed at the Uni-

versity of Oklahoma Health Services Center in 1977, and

the report encompassed the five year period from 1977

through 1982.

During this five year period, sixty-nine infants were

screened; thirty-three were recommended for “supportive

care” — an euphemism for denial of beneficial medical

treatment — on the basis of intellectual, social, and

economic criteria. The twenty-four infants who in fact

received “supportive care” all died within 189 days of birth.

Id. at 452-53.

A. The Selection Process Discriminated Against

Infants with Congenital Disabilities.

The selection process applied to infants born with

myelomeningocele. A congenital disability,

myelomeningocele is characterized by an opening in the

spine at which a “sac” protrudes from the body of the child.

This sac contains cerebrospinal fluid and nerve roots that

would normally be contained within the spinal column.

Depending on various factors, including the level of the

myelomeningocele on the spine and the extent of nerve

involvement, an affected infant might experience loss of

lower extremity function and, perhaps, loss of bowel and

bladder control. “Optimal treatment [of the

myelomeningocele] consists of prompt surgical closure of

the skin defect, preferably within 48 hours after birth, to

prevent meningeal infection.” Nelson, Behrmar and

Vaughan, Textbook of Pediatrics 1562 (12th ed. 1983). “It

{myelomeningocele] is one of the most common develop-

mental anomalies of the nervous system; the incidence

ranges from 0.2-0.4/1000 births in different population

groups.... Little is known about the etiology of

myelomeningocele.” /d. at 1561. If treated, almost all

children with myelomeningocele will be ambulatory —

they may walk with braces or crutches, or may use a wheel-

chair. Mental retardation is not directly associated with

myelomeningocele if it is properly treated.

Hydrocephalus, a potentially serious anomoly often

associated with myelomeningocele, occurs when too much

cerebrospinal fluid accumulates within the cranium. If

untreated, this condition causes the head to greatly enlarge

and damages the developing brain. Treatment of

hydrocephalus involves placement of a shunt that drains

the excess fluid into another body cavity, most commonly

the abdomen. /d. at 1568. Mental retardation sometimes

occurs in infants with hydrocephalus; however, “[t ]he mere

presence of hydrocephalus does not necessarily imply a

poor intellectual prognosis and does not preclude

independent existence.” Mapstone, Rekate, Nulsen, Dixon,

Glaser and Jaffe, Relationship of CSF Shunting and IQ in

Children with Myelomeningocele: A Retrospective Analysis,

11 Child’s Brain 112, 117 (1984). See also McLone,

Czyzewski, Raimondi and Sommers, Central Nervous

System Infections as a Limiting Factor in the Intelligence of

Children with Myelomeningocele, 70 Pediatrics 338 (1982).

If achild is treated with a shunt, then there is no necessary

intellectual impairment.

It was the co-existence of hydrocephalus, the possibility

of mental retardation, and the various other problems

sometimes associated with myelomeningocele that led to

the development of the discriminatory selection process at

Oklahoma Children’s Memorial Hospital that was used to

determine which infants were to receive only the

“supportive care,” which involved denial of beneficial

medical treatment leading predictably to death.

B. Social, Intellectual, and Other Nonmedical Criteria

Were Considered in Determining Whether an

Infant Should Be Denied Beneficial Medical Treat-

ment.

When an infant with myelomeningocele presented at

Oklahoma Children’s Memorial Hospital, a “team” —

consisting of a physician’s assistant, a pediatrician, an

orthopaedist, a neurosurgeon, an urologist, a nurse

clinician, a social worker, physical and occupational

therapists, and a psychologist — screened the child and the

child’s family; various diagnostic tests were performed. “If

the child is found to have a lower lumbar or sacral lesion

and no severe hydrocephalus or if there are no associated

anomalies present, sac closure is recommended within a

few days. If the lesion is at a high lumbar or thoracic level,

severe hydrocephalus or other brain malformation is

present, and/or other associated anomalies are noted, a

more formal meeting of the team is scheduled within 48

hours of admission.” Gross at 452. Greater degrees of phy-

sical disability are associated with higher level lesions. The

existence of a brain malformation indicates a greater

possibility of mental retardation.

This formal “team meeting” to determine whether or not

to provide an infant access to medical treatment occurred

despite the fact, as the lead author of the report describing

the selection process later conceded, that “/b/abies

considered to have a poor prognosis have a survival equal to

that of babies with a good prognosis, if they receive early sur-

gical treatment.” Gross, Newborns with Myelodysplasia —

The Rest of the Story, 312 New Eng. J. Med. 1632, 1633

(1985) (emphasis added). Thus, the initial determination

that some children ought to be considered for nontreatment

bore no relation to whether or not treatment would enable

the child to survive. It was based on the premise that some

children ought not survive, even though they could if

treated.

At the formal meeting “factors considered significant by

Shurtleff et al (and to a lesser extent those considered

significant by Lorber) were reviewed” by the team. Gross

at 452.

Under Lorber’s criteria, an infant would receive treat-

ment unless he or she had a high level lesion, “gross

enlargement of the head”, “severe paraplegia”, or some

other severe congenital defect. Jd. at 450 (citing Lorber,

Early Results of Selection Treatment of Spina Bifida

Cystica, 4 Br. Med. J. 201 (1973) (emphasis added) ). The

presence of a high level lesion indicates a likelihood of a

greater degree of physical disability; “gross enlargment of

the head” might indicate a greater possibility of intellec-

tual impairment. The use of “severe paraplegia” as a

selection criterion certainly indicates that a prediction

about the ability of a child to walk unaided would be a

factor in deciding whether to provide the child with life-

saving treatment.

Shurtleffs criteria differed from Lorber’s “in that

aggressive treatment was recommended for any infant,

regardless of the level of the lesion, if a good intellectual

prognosis was noted.” Gross at 451 (emphasis added).

Shurtleff’s criteria also included such factors as the

existence of any major malformations that would preclude

self-care as an adult, the economic and _ intellectual

resources of the family, the distance the family lived from

an appropriate facility, and commitments by social

agencies to provide resources (such as a foster home or

medical care costs) in determining whether or not a child

would be treated. /d. (citing Shurtleff, Hayden and Lowser,

Myelodyspiasia: Decision for Death or Disability, 291 New

Eng. J. of Med. 1005 (1974)).

In the selection process, the myelomeningocele team was

also “influenced” by a pseudo-algebraic formula — QL =

NE x (H + S) — published by Shaw in Defining the Quality

of Life, 7 Hastings Center Rep. 11 (1977): “In the formula,

QL is quality of life, NE represents the patient’s natural

endowment, both physical and intellectual, H is the

contribution from home and family and §S is the contribu-

tion from society.” Gross at 456. It was the

myelomeningocele team’s view “that external cir-

cumstances are crucially important in the outlook for the

newborn with myelomeningocele. Thus, the treatment for

babies with identical ‘selection criteria’ could be quite dif-

ferent, depending on the contribution from home and

society.” Id.

Following an evaluation of a child and the child’s family

under these intellectual, social, and economic criteria, the

myelomeningocele team made a recommendation for

either “vigorous treatment” or “supportive care.” /d.

“Vigorous treatment” consisted of prompt sac closure

(and thus prevention of infection), the insertion of ashunt if

hydrocephalus were present, and all other indicated

therapies.

“Supportive care” consisted of keeping the infant

comfortable until death occurred. There was no surgery to

close the opening in the infant’s back. When hydrocephalus

was present, the cerebrospinal fluid was allowed to

accumulate causing gross enlargement of the infant’s head

and compression of the brain. “Antibiotics are not given for

infection and sedation is not prescribed.” Jd. at 452. Thus,

raging infections would spread throughout the central ner-

vous system, gaining access through the opening in the

spine, and would go untreated; a child would not be sedated

for relief of pain. The predictable result was death, which

occurred in every case in the reported program in which

only “supportive care” was provided.

The authors of the article that described the program

stated that the final decision between “vigorous treatment”

or “supportive care” was left to the parents; and if the child

is deemed unworthy of treatment, but the parents still want

their child treated, then “their wishes are followed

unless the operative risk is considered a direct threat to the

baby’s life.” Jd. There is no indication, however, that the

parents were informed of the nonmedical, intellectual,

social, and economic factors that entered into the

recommendation. Moreover, it is “unrealistic for a

physician to expect a father (mother is generally still

hospitalized) to make such a difficult decision at a time of

terrible emotional trauma. Invariably, in these cir-

cumstances, families make a decision based on information

that is given to them by the pediatrician, pediatric

neurologist or neurosurgeon. The great likelihood is that

any one of these physicians will have his/her philosophy

concerning what should be done and, therefore, whether

intentional or unintentional, the information will be

skewed. It is, therefore, the physician that is responsible for

the immediate decision for or against treatment.” Epstein,

Meningomyelocele: “Pitfalls” in Early and Late

Management, 30 Clinical Neurosurgery 366, 366-67 (1983).

See also Homer, Selective Treatment, 87 Am. J. Nursing 309

(1984). Indeed, Dr. Gross, lead author of the report

describing the selection process, admitted that “it takes a

great deal of courage on the amount of parents to say, in the

face of a recommendaticn from a physician, that they wish

to go counter to that. They certainly do not have the back-

ground at the time the child is born to really know what is

expected.” Sherwood, “Who Lives, Who Dies?” — Part II,

Cable News Network Documentary (February 22, 1984).

See generally H. Turnbull & A. Turnbull, Parents Speak

Out: Then and Now (1984).

Even though the authors asserted that the “final

decision” was made by the parents, it is therefore unreason-

able to presume that the parents could have made an

intelligent and informed decision at the time of the child’s

birth. Parents would almost always rely on the expertise of

the myelomeningocele team and follow their reeommenda-

tion. And there is no evidence that the team informed the

parents of the various nonmedical criteria — including

criteria that related to the parents’ social and economic

status, geographical location, their presumed ability to

cope with a disabled child, and the projected impact of the

child on family life — that formed part of the basis for their

recommendation. The members of the myelomeningocele

team were the true decisionmakers at Oklahoma

Children’s Memorial Hospital, not the parents.

In sum, the selection process at Oklahoma Children’s

Memorial Hospital involved conjecture and the use of a

number of nonmedical criteria — intellectual capacity,

degree of paraplegia, family wealth and resources,

geographical location — that had nothing to do with

whether beneficial medical treatment was available to

preserve the child’s life or to correct an impairment. Tothe

extent that such nonmedical criteria were employed, the

participants played judge, jury, and seer for the children

they evaluated, in effect recommending death for those

they deemed unworthy of life.

C. Recommendations for Denial of Beneficial Medical

Treatment Led to the Death of Twenty-four

Infants.

Sixty-nine infants with myelomeningocele were seen at

Oklahoma Children’s Memorial Hospital during the five

years that the reported study was in progress. Only thirty-

six (52%) of these infants were recommended for “vigorous

treatment.” ' The remaining thirty-three (48%) were

recommended for “supportive care”.?

' When screening an infant and making a recommendation, the

myelomeningocele team considered the criteria first published by Dr.

Shurtleff as significant. Gross at 451. However, during the same

period, 87% of the infants with myelomeningocele who presented to

Dr. Shurtleff at Children’s Orthopaedic Hospital and Medical Center

in Seattle, Washington, received surgical (vigorous) treatment.

Shurtleff, Letters to the Editor: Care of Infants with

Myelomeningocele, 74 Pediatrics 164, 164 (1984).

* The nature and results of this selection program were subsequently

criticized in the medical literature. “(T]he Oklahoma team is not

ambivalent about giving only supportive care to 48% of the

children.... They were not even ambivalent about not treating five

children with L-5 sacral lesions: children who will walk with minimal

bracing.” Freeman, Early Management and Decision Making for the

Treatment of Myelomeningocele: A Critique, 73 Pediatrics 564, 565

(1984). “Do the authors seriously contend that the child with a high

thoracolumbar lesion does not have the potential for human relation-

ships? If so, I would suggest that they attend some of the youth

programs at the national Spina Bifida Association of America

meeting and educate themselves further in this regard.” Venes,

Letters to the Editor: Care of Infants with Myelomeningocele, 74

Pediatrics 162, 162 (1984). .... “The reader unfamiliar with children

who have myelomeningocele would believe, after reading this paper,

that half of these children (48%) can be expected to have such a

wretched existence that they should not be allowed to live.... In the

past five years, we have treated all newborns who have

myelomeningocele with full therapy. ... None of our patients are ina

vegetative state: all appear to enjoy life; and all interact well

socially.... A review of the school performance of our older children

reveals that 53% are at grade level or above, and 33% are at grade level

but with special help.” Liptak, Masiulis, Letters to the Editor: Care of

Infants with Myelomeningocele, 74 Pediatrics 165, 165 (1984).

(Footnote continued on following page)

Five of the infants recommended for nontreatment by

the myelomeningocele team at Oklahoma Children’s

Memorial Hospital nevertheless eventually received

vigorous medical attention®. Although two of these five

children died at nine and seventy-two days of age

respectively, the other three are alive and well. “One

preschool aged boy with a thoracolumbar level lesion is

able to stand and is considered to be doing well for his age.

Another has microcephaly and is developmentally delayed,

but is healthy. ... The third child has moved to another

state, the child’s name has been changed, and we have no

current information.” Gross, Jn Reply, 74 Pediatrics 166,

167 (1984). When treated, therefore, the children

recommended for nontreatment were indeed capable of

survival.

(Footnote continued from preceeding page)

“I read with disbelief the article by Gross et al. .... In our hands

prompt treatment of unselected patients with myelomeningocele

ensures that 85% survive, and of the surviving children, 73% have

normal intelligence, 74.5% are community ambulators, and 85% are

continent of urine on clean intermittent catherization.... The

published opinion of the Spina Bifida Association of America, an or-

ganization composed principally of parents of children born with

myelomeningocele, is dramatically opposed to the management put

forth by Gross et al. The documented suffering appears to be of lessor

[sic] concern to these families while education, access to transporta-

tion, and eventual employment are major concerns.” McLone, Letters

to the Editor: Care of Infants with Myelomeningocele, 74 Pediatrics

162, 163 (1984). “The OCMH doctors quoted the writings of the Rev.

Richard A. McCormick, Rose F. Kennedy professor of Christian

ethics of Georgetown University, to support their selection method.

But McCormick ... told Newsday that the OCMH rate of not

operating on children with spina bifida is abusively high. They’re

abusing what I have said.’” Kerr, Computing the Cost of Life, News-

day, June 2, 1985 at 4, col. 1. “We would agrue that it is moral and

ethically correct to treat all children born with a myelomeningocele

and that no valid criteria exists for the selection of infants for

nontreatment. McLone, Results of Treatment of Children Born with a

Myelomeningocele, 30 Clinical Neurosurgery 407, 407 (1983).

* Of the remaining four infants recommended for “supportive care,”

three received delayed treatment and one moved to California at one

month of age and was lost to follow-up. Gross at 453.

The twenty-four (35%) infants who were in fact denied

medically indicated treatment during the five year period

of the study all died within 189 days of birth. Gross at 453.

III. SECTION 504 WAS VIOLATED WHEN

HANDICAPPED INFANTS WERE DENIED

ACCESS TO MEDICAL CARE AT OKLAHOMA

CHILDREN’S MEMORIAL HOSPITAL.

Section 504 of the Rehabilitation Act of 1973, 29 U.S.C.

§794 (1982), provides in relevant part:

No otherwise qualified handicapped individual in

the United States, as defined in Section 706(7) of this

title, shall, solely by reason of his handicap, be

excluded from participation in, be denied the benefits

of, or be subjected to discrimination under any

program or activity receiving Federal financial

assistance.

A “handicapped” individual is defined in 29 U.S.C. §706

(7B) 1982), as “any person who(i) has a physical or mental

impairment which substantially limits one or more of such

person’s major life activities, (ii) has a record of such

impairment, or (iii) is regarded as having such impair-

ment.” “An otherwise qualified handicapped person is one

who is able to meet all of a program’s requirements in spite

of his handicap.” Southeastern Community College v. Davis,

442 U.S. 397, 406 (1979).

Under the plain language of the Rehabilitation Act,

therefore, the children subjected to the selection process

were “handicapped individuals.” See United States v.

University Hospital, State University of New York at Stony

Brook, 729 F.2d 144, 155 (2d Cir. 1984). They were

“otherwise qualified handicapped individuals” because

they were able to meet all the “requirements” of a medical

program or activity — they could benefit from appropriate

medical care, despite their handicaps. Moreoever, the

selection process and treatment regimen that these

children were subjected to constituted discrimination in

violation of the plain language of Section 504 of the Act.

A. Discrimination Between Infants with “Significant

Handicaps” and Infants with “Minimal Handicaps”

in the Initial Selection Process Violated the Plain

Language of Section 504.

The first violation of Section 504 by Oklahoma Children’s

Memorial Hospital was the application of a selection

process that permitted infants with a prognosis for a

minimal handicap automatic access to medical treatment,

while infants with a prognosis for a more significant

handicap were placed in a formal selection process —

despite the fact that “[bJabies considered to have a poor

prognosis have asurvival equal to that of babies with a good

prognosis, if they receive early surgical treatment.” Gross,

Newborns with Myelodysplasia — The Rest of the Story, 312

New Eng. J. of Med. 1632, 1633 (1985) (emphasis added).

This distinction drawn between an infant predicted to

have a “significant handicap” and an infant predicted to

have a “minimal handicap” — evidentially based on

differing degrees of intellectual capacity and physical dis-

ability — clearly violated Section 504: It excluded an infant

with a “significant handicap” from the participation in,

and denied the infant the benefits of, the automatic medical

treatment regimen accorded the infant with a “minimal

handicap” for reasons based solely on the projected handi-

caps of the infant. See generally L. Kamin, The Science and

Politics of I.Q. (1974).

B. Discrimination Among Infants with “Significant

Handicaps” on the Basis of Inteilectual, Social,

Economic, and Other Nonmedical Criteria Violated

the Plain Language of Section 504.

Infants with a prognosis for survival with a significant

handicap were compelled to meet other additional dis-

criminatory criteria before they might be recommended

for access to medical treatment. These criteria included

such factors as the predicted intelligence quotient (I.Q.) of

the child, the degree of physical disability, the economic

and intellectual resources of the child and family, the geo-

graphical proximity of the family to a medical facility, and

the expected contributions to the child’s care from home

and society. Gross at 451, 456.

Using Lorber’s criteria, the infant would receive only

supportive care if “severe paraplegia” existed. Gross at 450;

see also this brief at 9. This clearly discriminated solely on

the basis of physical handicap, which is plainly contrary to

the express purpose of Section 504.

Using Shurtieff’s criteria, children with a good

intellectual prognosis were recommended for vigorous

treatment regardless of the level of the lesion. Shurtleff

also considered the intellectual ability of the infant’s

parents in making a recommendation for or against treat-

ment. Gross at 451; see also this brief at 10. The use of these

factors clearly discriminated on the basis of mental

handicap, contrary to Section 504.

Using Shaw’s formula, the “natural endowment” of the

infant is significant. Gross at 456; see also this brief at 10.

“Natural endowment” would include both the projected

intellectual capacity and the physical ability of the infant;

both factors discriminated solely on the basis of handicap,

in violation of Section 504.

The application of these criteria in the second phase of

the selection process resulted in the discriminatory denial

of treatment to infants based solely on the basis of their

handicaps: The children who were recommended for and

received only “supportive care” — food, water, and little

more — were denied the benefits of, and participation in,

the medical treatment regimen that was accorded those

children who were deemed worthy of care.‘ As a result,

they died.

IV. CARLTON JOHNSON, AN INFANT WITH

CONGENITAL DISABILITIES, WAS DENIED

MEDICAL TREATMENT ON TWO SEPARATE

AND DISTINCT OCCASIONS AT OKLAHOMA

CHILDREN’S MEMORIAL HOSPITAL IN

VIOLATION OF SECTION 504.

Carlton Johnson, now almost 3 years of age, was born on

September 12, 1982. Carlton, a black male infant, exper-

ienced respiratory distress at birth and was found to have

myelomeningocele with hydrocephalus, microcephaly, and

anemia.

Progress notes made by myelomeningocele team

members in Carlton’s medical record stated that he was

4 The Secretary of the U.S. Department of Health and Human Services

interpreted Section 504 to prevent just this sort of discriminatory

medical practice:

In the case of an infant born with myelomeningocele, for

example, the treatment which must be considered is surgery to

close the protruding sac to prevent infection and other potentially

fatal consequences. The “handicap” is the physical and/or mental

impairment the infant is regarded as likely to have in future life.

To the exteni the myelomeningocele itself or other complications

(such as respiratory problems, infection, anesthetic risk, or other

factors) present, in the exercise of reasonable medical judgment,

contraindications to the surgery, the infant is not able to benefit, in

spite of his or her handicap, froia the surgery. However, if the

surgery would be medically beneficial, in that it would be likely, in

the exercise of reasonable medical judgment, to bring about its

intended result of avoiding infection or other fatal consequences,

then failure to perform the surgery because of the anticipated

impairments in future life offends section 504, as the withholding

of surgery is because of the handicap and in spite of the infant’s

being qualified to receive the surgery.

Dep’t of Health and Human Services, Office of the Sec’y, Non-

discrimination on the Basis of Handicap: Procedures and Guidelines

Relating to Health Care for Handicapped Infants, 49 Fed. Reg. 1621,

1637 (1984).

“not a good baby” and that “neurosurgery [was] not en-

thusiastic about shunting the child and closing the defect.”

The medical records state that information was given to his

mother, Sharon Johnson, and that she would make the final

decision. Mrs. Johnson, however, said that “the only thing

they told me was about a shunt, and this, you know, after

they told me about six months, that he would live six

months without it, and then with it, a year, and I just

figured, what’s the sense in — he already suffers, so why

should he suffer anymore?” Sherwood, “Who Lives, Who

Dies?“ — Part 1, Cable News Network Documentary

(February 21, 1984). This statement indicated that Mrs.

Johnson was not given adequate information to make a

reasoned and informed decision.

Once it was determined that Carlton would be denied

medical treatment, he was transferred to a nursing care

facility for custodial care. His medical expenses at the

hospital and the nursing home were paid by Medicaid.

Section 504 was violated when Carlton was denied access

to beneficial medical treatment and was instead

transferred to the nursing home. Carlton is a handicapped

individual within the definition of 29 U.S.C. §706

(7(B)(1982). He was “otherwise qualified” because he was

capable of benefiting from medical treatment. Therefore,

Carlton was discriminatorily denied medical treatment

solely by reason of his handicap, in violation of the plain

language of Section 504.

On October 17, 1982, Carlton returned to Oklahoma

Children’s Memorial Hospital with severe but treatable

problems. His medical records show that Carlton was now

experiencing severe respiratory distress and periods of

apnea (cessation of breathing). On admission Carlton was

cyanotic (bluish), and his condition was listed as guarded.

Further clinical examination revealed bilateral otitis

media (ear infection) and dehydration. Physician’s orders

stated that there were to be no laboratory tests to monitor

his condition; there were to be no intravenous fluids to

correct the dehydration; there were to be no antibiotics for

the ear infection. If Carlton were to suffer a cardio-

pulmonary arrest, he was not to be put on a respirator and

no drugs were to be used. The only intervention that was to

be allowed in this life-threatening situation was suctioning,

giving of oxygen, and cardiac compressions.

Fortunately, Carlton did not experience a cardio-

pulmonary arrest. The only medical care that Carlton re-

ceived during his hospitalization was oral-gastric tube

feedings. He received no antibiotics for his ear infection.

His dehydration was not treated with intravenous fluids

and routine laboratory tests to monitor his condition were

not performed. Despite this lack of ordinary medical treat-

ment, Carlton’s condition improved after he was

rehydrated through the tube feedings. His ear infection

cleared on its own.

This outrageous conduct clearly violated the plain

language of Section 504. Carlton was denied beneficial

treatment for his severe dehydration and ear infection —

conditions totally unrelated to his handicap — solely

because of his handicap. There is no question that a non-

handicapped infant would have been aggressively treated

in this life-threatening situation. This is an obvious and

clear example of exactly the discriminatory conduct that

Section 504 was enacted to prevent.

Carlton’s medical records indicate that, with the

exception of an emergency room visit at which time a

hernia was diagnosed, he was not seen again at Oklahoma

Children’s Memorial Hospital until a year later in October,

1983. At that time it was becoming increasingly clear that

he was not going to die. Both his head and the “sac” on his

back had become grossly enlarged before Carlton was

referred to neurosurgery for closure of the spine and place-

ment of a shunt to treat his hydrocephalus.

It was not until January 30, 1984, however, that his spine

was finally closed. A shunt was placed on February 7, 1984,

and his hernias were repaired on February 17, 1984. As a

result of delay, Carlton’s head remains greatly enlarged.

Further evaluation is needed to determine the loss of

intellectual capacity and loss of ambulation — and the

greater educational and rehabilitative services he will need

— that occurred as a result of the delays in appropriate

treatment.

V. THIS COURT SHOULD ACKNOWLEDGE

THE AUTHORITY OF FEDERAL LAW TO

PROTECT BOTH INFANTS WITH DISABILITIES

AND THEIR PARENTS.

For children with disabilities and their parents to invoke

the authority of Section 504 in the face of such dis-

criminatory treatment, and in order that the federal

government should have the power to investigate and

protect both infants with disabilities and their parents

from such discrimination, this Court must recognize that

Section 504 applies to discriminatory medical practices.

A. The Injunction Currently in Force Has Prevented

the Federal Government from Investigating the

Selection Process at Oklahoma Children’s

Memorial Hospital.

On February 24, 1984, The Association for Retarded

Citizens of the United States, The Association for Persons

with Severe Handicaps, The Spina Bifida Association of

America, The Down’s Syndrome Congress, Nat Hentoff,

and Martin Gerry® filed a formal complaint with the

* Mr. Nat Hentoff is a columnist for the Village Voice and a former

member of the Executive Committee of the New York Civil Liberties

Union; Mr. Martin Gerry is former Director of the Office for Civil

Rights of the United States Department of Health, Education and

Welfare (1975-1977), and is presently counsel to Wednesday Group of

United States House of Representatives and to several national

parents and disabilities rights organizations.

United States Department of Health and Human Services

and the Department of Justice that alleged the selection

process at Oklahoma Children’s Memorial Hospital

violated Section 504. The complaint requested that the

program be investigated and enforcement action taken.

On June 29, 1984, however, the Director of the Office for

Civil Rights of the Department of Health and Human

Services notified the complainants that the Department of

Health and Human Services was precluded from taking ac-

tion under Section 504 due to the injunction issued by the

district court in American Hospital Association v. Heckler,

585 F. Supp. 541 (S.D.N.Y. 1984). See Gerry, The Civil

Rights of Handicapped Infants: An Oklahoma

“Experiment”, 1 Issues in L. & Med. 15, 38-39 (1985).

Consequently, no investigation of the selection process has

been undertaken by the federal government.

Any similar decision by this Court holding that Section

504 does not apply to medical practices would permanently

render the federal government powerless to investigate

and to correct egregious forms of discriminatory conduct

— even when performed by state actors in state institutions

that receive federal funds, such as Oklahoma Children’s

Memorial Hospital.

There would be no question that the federal government

could appropriately investigate and take measures to

correct discriminatory medical decisionmaking based on

the race of children in state-run, federally funded institu-

tions. See Jones, Bad Blood: The Tuskegee Syphilis

Experiments (1981). To hold that the federal government

may not take similar steps for medical discrimination

based on disability would be contrary to the intent of

Congress and the plain language of Section 504.

B. Section 504 Must Apply to Discriminatory Medical

Practices to Protect Parental Rights.

“This Court’s decisions have by now made plain beyond

the need for multiple citation that a parent’s desire for and

right to ‘the companionship, care, custody, and manage-

ment of his or her children’ is an important interest that

‘undeniably warrants deference and, absent a powerful

countervailing interest, protection.’” Lassiter v. Depart-

ment of Social Services, 452 U.S. 18, 27 (1981) (citing

Stanley v. Illinois, 405 U.S. 645, 651 (1972)).

At Oklahoma Children’s Memorial Hospital, the

myelomeningocele team purported to leave the final choice

between supportive care or vigorous treatment to the

parents: “If a pessimistic evaluation and prognosis has been

offered the family but they stil’ wish treatment, their

wishes are followed unless the operative risk is considered a

direct threat to the baby’s life. (The reverse situation,

refusal to consent to recommended surgery, did not occur.)”

Gross at 452. But it is utterly unreasonable to expect the

vast majority of parents to overrule the team’s

recommendation at a time soon after the traumatic birth of

their disabled child. There is no indication that the parents

were ever informed of the nonmedical intellectual, social,

and economic criteria that formed the recommendation.

See this brief at 12. The decision for treatment. or

“supportive care” was in fact made by the members of the

myelomeningocele team in the form of a “recommendation”

that almost all parents — in shock and without the emo-

tional or informational resources to contest the

“recommendation” — mechanically followed.

The recommendation of the team was based on criteria

that violated the plain language of Section 504. When the

infant was denied access to medical treatment in this

manner, the parents’ right to the care, custody, and

management of their child was violated: The children who

received only “supportive care” all died, completely

severing the parent-child relationship. In this fashion,

parental rights were denied on the basis of discrimination

against their children with disabilities. Yet if Section 504

were held not to apply to such discriminatory medical

practices, then parents in such circumstances will be

unable to claim the support of federal law to vindicate their

rights and interests.

C. The Federal Government Must Have the Power to

Investigate Allegations of Discriminatory Conduct

in All Federally Funded Programs.

The Child Abuse Amendments of 1984, Pub. L. No. 98-

457, tit. 1, §§121-28, 98 Stat. 1749, 1752-55 (codified as

amended at 42 U.S.C. §§5101-5103 (Supp. 1985)), treat the

withholding of medically indicated treatment from dis-

abled infants with life threatening conditions as child

abuse. As a condition of receiving state grants under the

Child Abuse Prevention and Treatment Act, the State must

have a procedure in its child protective service system to

respond to reports of such abuse. If the state agency does

not investigate incidents like the selection process at

Oklahoma Children’s Memorial Hospital, then it may be

denied federal funds.®

The selection program at Oklahoma Children’s

Memorial Hospital, a state institution, was itself funded by

federal funds insofar as the hospital and physicians were

paid through Medicaid for services rendered to Cariton

Johnson and other children subject to the selec ‘ion process.

Yet if Section 504 does not apply to discriminatory medical

practices, then the federal government will not have the

authority to stop the use of its funds to reimburse hospitals

and physicians engaged in such discriminatory neglect. At

the same time, it would be required to stop funding child

6 It should be noted that there is no indication that the Oklahoma

Children and Youth Services had even investigated the abusive prac-

tices at Oklahoma Children’s Memorial Hospital, although they were

a matter of public record. The Oklahoma Children and Youth

Services and Oklahoma Children’s Memorial Hospital are both under

the authority of the Director and the Board of Commissioners of the

Oklahoma Department of Human Services — the individuals

ultimately accountable for the abusive practices at the hospital.

protection agencies that fail to pursue such instances of

discriminatory child abuse. Such an absurd and

inconsistent result can only be avoided by recognizing that

Section 504 applies to discriminatory medical practices.

CONCLUSION

It is submitted that Section 504 of the Rehabilitation Act

of 1973 should be held to apply to discriminatory medical

practices and that the holding of the Court of Appeals for

the Second Circuit to the contrary should be reversed.

Respectfully submitted,