Amicus Curiae Brief — Sullivan v. Zebley

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No. 88-1377 (\4 Supre te | curt us

i. & DU

In the Supreme Court «;, i:

OF THE yosere F Sram,

United States CLERK

el .

OcToser Term, 1989

Lous W. SULLIVAN, Secretary of Health and

Human Services,

Petitioner.

Brian ZEBLEY, et al.,

Respondent

On Writ of Certiorari to the United States Court of Appeals

For the Third Circuit

BRIEF OF AMICI CURIAE

THE CHILDREN’S DEFENSE FUND

THE CYSTIC FIBROSIS FOUNDATION

THE SPINA BIFIDA ASSOCIATION OF

GREATER LOS ANGELES

THE TOURETTE SYNDROME ASSOCIATION

THE REHABILITATION PRESIDENTS

COUNCIL OF CALIFORNIA

PERLA ACOSTA, KENYADA ALES, DAWN BOUCHER,

CHERYL CAUDILL, SARA CHASE, JENNIFER COX,

BLAKE DEWITT, RICHARD DOONE, YOLANDA DOWDY,

MONISHA SMITH, HENRY ROSADO,

JEANETTE TOOMEY, KENDRA WHALON

Avice Bussiere*

National Center for Youth Law

ELIZABETH JAMESON

Youth Law Center

1663 Mission Street

San Francisco, CA 94103

(415) 543-3307

MARILYN HOLLE

Protection and Advocacy, inc

230 North Maryland Avenue

Glendale, CA 91206

(818) 546-1631

James D. WEILL

Counsel for the Children’s

Defense Fund

* Counsel of Record

TABLE OF AUTHORITIES

INTEREST OF AMICI CURIAE

SUMMARY OF ARGUMENT

ARGUMENT

I. THE SSI PROGRAM PROVIDES

ESSENTIAL SUPPORT TO

CHILDREN WITH SPECIAL

NEEDS.

II. THE SECRETARY’S METHODOLOGY

FOR DETERMINING DISABILITY

IN CHILDREN’S CASES IS

UNDULY RESTRICTIVE IN THAT IT

EXCLUDES CHILDREN WITH SERIOUS

DISABLING IMPAIRMENTS WITHOUT

PROVIDING THEM AN OPPORTUNITY

TO DEMONSTRATE THEIR ACTUAL

DEGREE OF FUNCTIONAL LIMITATION.

CONCLUSION

476 U.S. 467 (1986).

, U.S.

Bowen v. Yuckert

107 U.S. 2287 (1987).

Menta] Health Association of

’

Minnesota v. Schweiker

554 F. Supp. 157, aff'd,

720 F. 24 965 (8th Cir. 1983).

, 855 F. 2a 67

(3d Cir. 1988).

STATUTES AND REGULATIONS

42 U.S.C. §606(a).

42 U.S.C. §138).

42 U.S.C. §1382c.

42 U.S.C. §1396a(a) (10) (A).

20 ¢.F.R. Part 404, Subpart P,

Appendix 1,

§103B

§104.03

§110.08

§111.08A

§112.05A

§112.05¢c

42 C.F.R. §§409.31 through 409.35.

42 C.F.R. §409.33(b).

42 C.F.R. §440.40.

42 C.F.R. §440.170(d).

il,

42,

31,

i7,

Social Security Administration, SSI

Disability Insurance Letter

No. III-11 - Supplement 1,

(January 9, 1974). 59

Urban Systems Research & Engineering,

Inc., Survey of Blind and Disabled

Children Receiving Supplemental

Security Income Benefits, SSA

Publication No. 13-11728 (1980). 37, 38

iii

No. 88-1377

In The

Supreme Court of the United States

October Term, 1989

Louis W. Sullivan, Secretary of Health

and Human Services, Petitioner,

Vv.

Brian Zebley, et. al., Respondent.

On Writ of Certiorari to the

United States Court of Appeals

For the Third Circuit

BRIEF OF AMICI CURIAE

CHILDREN’S DEFENSE FUND, ET. AL.

INTEREST OF AMICI CURIAE

THE CHILDREN’S DEFENSE FUND (“CDF”) is a

national public charity representing and

providing advocacy on behalf of America’s

children, especially low-income, minority,

and handicapped children. CDF works through

litigation, public education, analysis of

public policy, lobbying, and other methods

to improve the care and development of

children and the economic status of children

and their families. CDF’s experience in

such work demonstrates that children with

handicaps have special needs which must be

met through public income support programs

when family resources are inadequate and

that the wrongful denial of such public

assistance has a host of adverse

consequences for disabled children.

THE CYSTIC FIBROSIS FOUNDATION is

striving to provide a better future for

people with cystic fibrosis through improved

medical care and better research. Cystic

fibrosis is a fatal, genetic disease. The

symptoms of this disease include thick,

sticky, mucus secretions that clog the lungs

and gastrointestinal systen, impairing

breathing and digestion. The mucus can lead

to recurrent lung infections and

malnutrition. Other severe complications of

cystic fibrosis can include diabetes and

cardiac problems. Separately, these

symptoms may not meet the Social Security

Administration’s requirements for

disability. However, when all aspects of

the disease are viewed together, the

combination can be extremely disabling.

Currently, many children with cystic

fibrosis who apply for Supplemental Security

Income (SSI) are turned down because they do

not meet the restrictive medical listings.

Despite the devastating effect of cystic

fibrosis on a child’s daily life and the

continuous medical tree-=nent that may be

necessary, children are ineligible for SSI

benefits if their breathing impairments are

not severe enough to render them totally

disabled according to the respiratory

category in the Listing of Impairments.

Often, the effects of the disease on other

parts of the child’s body are not

considered, since the child’s total

functional capacity is not evaluated.

SKIP (Sick Kids need Involved People)

NATIONAL, INC. was organized by parents in

1983 t6 assist individuals, especially

children with their families, who have

extraordinary health care needs. Through

the national organization and 24 State

Chapters, SKIP has touched the lives of

several thousand individuals and their

families. The diagnoses of these

individuals varies widely, but most require

life support equipment. One of the goals of

SKIP is to advocate for families to receive

adequate and appropriate care and services

in home and community based environments.

THE SPINA BIFIDA ASSOCIATION OF GREATER

LOS ANGELES includes persons with spina

bifida, families of children with spina

bifida, and professionals. A significant

segment of the membership includes low-

income families of children with spina

bifida. Many of the disability problems

children with spina bifida have, and which

result in functional limitations, are not

catalogued in the Listing of Impairments.

Unlisted factors include: gastrostomy tubes

into the stomach through which a child is

fed; tracheostomies which are openings into

the neck through which the child breathes

and through which the child is suctioned to

prevent aspiration or pneumonia; and shunts

to remove excess fluid from the head to

prevent or minimize brain damage from the

pressure of water on the brair. Because

these functionai limitations are not

catalogued in the listings, some severely

disabled children vith spina bifida have not

been able to qualify for SSI.

THE TOURETTE SYNDROME ASSOCIATION, INC.

is the only national voluntary non-profit

membership organization dedicated to

identifying the cause, finding the cure, and

controlling the effects of Tourette

syndrome. Tourette syndrome is a

neurological disorder characterized by

involuntary tics -- rapid, sudden movements

that occur repeatedly in the same way.

Tourette syndrome is a chronic disorder with

manifestations that can prevent an

individual from functioning independently

and that can cause a diagnosed individual to

require extended, individualized services.

Nevertheless, it is not included in the

Listing of Impairments established by the

Social Security Administration. Youngsters

with Tourette syndrome who have a high level

ef motor tics can experience significant

impairment of their motor function that can

interfere with their use of fingers, hands

and arms. Drugs that are used to bring the

motor symptoms under control can cause

lethargy and mental dullness. The socially

unacceptable nature of certain vocal tics

has precluded some children from being

enrolled in standard classroons. These

symptoms, together with learning

disabilities and attention deficit disorder,

limit the training of eneee youngsters for

eventual economic self-sufficiency.

THE REHABILITATION PRESIDENTS COUNCIL

OF CALIFORNIA (RPCC) is a statewide

consortium of professional rehabilitation

associations which seeks to improve the

effectiveness of rehabilitation through

ecucation and research. RPCC represents

approximately 2,000 rehabilitation

professionals who provide or coordinate

physical and vocational rehabilitation

services in California.

The following children have been denied

SSI on the basis of disability. Their cases

illustrate that the Secretary’s procedure

for determining disability in children’s

cases fails to take into account significant

functional impairments.

PERLA ACOSTA is two years old and lives

in California. She has Down syndrome and is

severely developmentally delayed. She

functions in the nine to ten month level in

speech and communication skills and at the

fifteen to eighteen month level in other

areas. Her school reports that, because of

her severe delay in the area of

communication, Perla can be expected to

demonstrate a verbal IQ of 59 or below when

she is old enough to test.

Perla has been denied SSI on the basis

that she has not demonstra*ted a 50% delay in

all areas of development as required by 20

C.F.R. Part 404, Subpart P, Appendix 1

(*Listings”) §112.05A. (Determination dated

January 26, 1989). Her request for

reconsideration is pending.

KENYADA ALES is almost two years old

and lives in Mississippi. She was born with

severe hydrocephalus which occurs when

cerebrospinal fluid can’t exit the brain.

In Kenyada’s case, a shunt was implanted to

enable the excess fluid to drain from her

head into her abdomen. In her first 15

months of life, Kenyada suffered three shunt

failures which required hospitalization and

surgical intervention. Kenyada shows signs

of brain damage including developmental

delays, hemiplegia, and vision problems, as

well as symptoms associated with shunt

problems including headaches,

nonresponsiveness, and abdominal tenderness.

Kenyada has been denied SSI benefits.

An Administrative Law Judge determined that

her impairments do not meet or equal the

childhood listings (Decision dated May 11,

1989).2 Her case is pending before the

Appeals Council.

DAWN BOUCHER is nineteen years old and

1 All records and documents referred to

are in the custody of the Secretary and have

been made available to counsel for the

plaintiff-respoiidents.

lives in Vermont. She reached majority

during the time that her claim was on

appeal. Therefore she is claiming child

benefits for the period before she reached

her eighteenth birthday and adult benefits

for the period thereafter. Ms. Boucher

suffers from borderline retardation but her

adaptive functioning is consistent with the

mild range of mental retardation. She also

has learning impairments, a speech

impairment, a mixed personality disorder

with dependent and avoidant features, and an

anxiety disorder. In addition, she suffers

from depression, allergic rhinitis,

headaches, and fainting spells.

The federal district court has denied

Ms. Boucher’s claim for child benefits but

has remanded her claim for adult benefits to

determine whether she can perform work that

exists in the national economy. Boucher v.

Bowen, No. 87-183 (D. Vermont Order dated

July 20, 1988.) The court denied the claim

for child benefits on the basis that her

impairments do not meet or equal the Listing

of Impairments. Under current regulations,

Listings, §112.05C, her adaptive functioning

level and her other impairments cannot be

considered because her IQ score is above 69.

Boucher v. Bowen, supra, Magistrate’s Report

and Recommendation (June 9, 1988).

CHERYL CAUDILL is fourteen years old

and lives in Kentucky. She was diagnosed as

Giabetic in February, 1988. Over the

following year she was hospitalized several

times with uncontrolled diabetes. Her

hospital stays ranged from a few days to a

week or more. Even when she was in the

hospital, the insulin therapy was inadequate

to control the diabetes. She also

experienced seizure-like symptoms and

emotional problems. Cheryl has been denied

SSI benefits and now has an appeal pending

in federal court. Caudill _v. Sullivan No.

89-180 (E.D. Ky. filed July 14, 1989).

SARA CHASE is four years old and lives

in Vermont. She was born with

Hirschsprung’s Disease, a corgenital

abnormality of the large bowel. By the age

of three and one half months, Sara had been

through two major surgeries. Since that

time, she has had worsening probiems of

entero colitis, granuloma, severe cramping,

malabsorption syndrome, and dysmotility

disorder. She also experiences problems of

fecal incontinence, abdominal distention,

intermittent diarrhea, intermittent rectal

bleeding, fissures, eating difficulties,

appetite loss, and weight loss. In 1988

alone, Sara was hospitalized five times. In

March of 1988, she was started on an enteral

feed system by means of a naso-gastric feed

tube. The feed tube must be in place 24

hours a day and is hooked up to an infusion

pump at least three times.

Sara has been denied SSI twice on

initial application. She is now pursuing

her case through the administrative process.

JENNIFER COX is six years old and lives

in Iowa. Jennifer suffers from anorectal

atresia, a congenital anomaly of the bowe’,

which required her to have a colostomy.

Additional surgery resulted in relocation of

the anus and closyre of the colostory.

However, she has continuing difficulty th

constipation and bowel dysfunction, and

further surgery has been recommended. She

currently requires daily enemas,

suppositories, and adherence to a strict

liet to enable her to have bowel movements.

In addition, Jennifer suffers from chronic

urinary tract infections and is unable to

sense when her bladder is full. As a result

of these problems, Jennifer is not yet

toilet trained. She also suffers from

Duane’s syndrome, an eye muscle deficiency,

which prevents her from moving her eyes to

look to either side. As a result, she lacks

peripheral vision. Her mother reports that

she must constantly lean sideways to see and

that she runs into walls because she cannot

seen them. _

Jennifer has been denied SSI benefits.

An Administrative Law Judge determined that

her impairments did not meet or equal the

listings. He said that her case must be

judged solely on the objective medical

evidence and not on other factors, which are

applicable only to adult determinations.

(Decision dated December 28, 1988.)

BLAKE DEWITT is 13 years old and lives

in Texas. Blake suffers from asthma,

obesity, and childhood migraine. In 1981,

after he began taking Prednisone, a

cortisone-like anti-inflammatory medication,

he began to gain weight very jguickly. In

1986, his physician concluded that he was

unable to engage in any strenuous activity

because of congenital tracheal malasia and

acute asthmatic bronchitis with chronic lung

disease. Blake’s blood pressure has risen

as high as 190/110, and he has suffered

severe headaches, vertigo, hypertensive

encephalopathy, and nose bleeds. Blake has

continued to gain weight, and at the time of

his hearing before an Administrative Law

Judge, at age eleven, he weighed 241 pounds.

Blake was found to be disabled from

June 13, 1978 through December, 1982 but has

been denied SSI benefits on reapplication

for benefits filed January 1, 1984. His

appeal is pending in the Court of Appeals

for the Fifth Circuit, DeWitt v. Sullivan,

Case No. 89-5559.

RICHARD DOONE is seven years old and

lives in Pennsylvania. Richard suffers from

asthma, which was diagnosed in 1984. By the

time his case was submitted to the Appeals

Council in 1988, Richard had been

hospitalized six times and had received

emergency room treatment twenty times. He

has been using a breathing machine for

several years, and at the time of his

hearing, he was using it four times a day

for one half hour each time. He is taking

Slobid, Alupent, and Predatson, and has

required parenteral? medication during his

asthma attacks. Richard missed 67 days of

his eight month preschool program during the

1986-1987 school year, and 21 out of 103

class days in kindergarten the next year.

Richard has been denied SSI. A

vocational expert concluded that Richard is

disabled because of the frequency of his

asthma attacks and because he requires home

nebulizer treatments to maintain adequate

ventilation. However, the Administrative

Law Judge determined that Richard did not

meet the Listing of Impairments because the

rate of hospitalization had decreased

recently and because his medical condition

between hospitalizations was not

sufficiently severe. (Decision dated March

2 “parenteral” refers to medication

administered by injection.

23, 1988.) Richard’s case is now before the

Appeals Council.

YOLANDA DOWDY is thirteen years old and

lives in Pennsylvania. Yolanda is in an EMR

(Educable Mentally Retarded) class at

school. Although her full scale IQ is in

the upper range for EMR students, her

academic achievement is in the lower range.

Her language development and communication

skills are extremely deficient. She wets

and soils herself during the day at school.

At home she is unable to do age appropriate

tasks such as doing *he dishes and taking

out the garbage. She has also exhibited

antisocial behavior.

Yolanda has been denied SSI benefits.

She is awaiting the outcome of her June 15,

1989 hearing on remand from the Appeals

Council.

AMY GIFFORD is eight years old and

lives in Vermont. She has a full scale IQ

of 71, and she demonstrates significant

delays in visual-motor abilities, visual-

perceptual abilities, language skills and

articulation. Unlike children with miid

retardation who do not have her other

problems, Amy needs to be helped with self-

care skills, particularly bathing,

toileting, and dressing herself. She is

unable to match clothing and to consistently

brush her hair. Her ability to retain

information is limited. She does not

understand money and is not able to tell

that there are five pennies in a nickel.

She is unable to add simple numbers without

counting on her fingers.

Amy also has a speech impairment,

which, in combination with her memory

difficulties make conversation difficult.

She has developed some behavior problems,

possibly as a result of frustration in

communication. School records indicate that

she also suffers from hyperactivity and

inattention. She finds it difficult to stay

on task, wanders around the room, and

becomes easily frustrated with lengthy

problems.

Amy has been denied SSI benefits. The

initial denial acknowledged that she had

learning problems but concluded that her

impairments were not severe enough to meet

the special medical requirements for child’s

Gisability benefits (Determination dated

September 19, 1988). Her case is now

pending before an Administrative Law Judge.

LAWRENCE GREATHEART is almost eleven

years old and lives in New York. Lawrence

suffers from a severe form of asthma with

numerous allergies. He requires specialized

treatments in the form of i § inhalation

therapy, asthma medications taken by mouth

and by injection, a special diet, and chest

physiotherapy, including chest percussion

and postural drainage. He also requries

humidification and air conditioning.

Lawrence was hospitalized repeatedly until

his mother was able to obtain a nebulizer a

few years ago. He is subject to frequent

headaches and gastro-intestinal disturbances

related to side effects of the medication he

receives. Lawrence is unable to

tolerate the public transportation system

because he reacts to dust, ldew, and dirt

with bronchial spasms. He can’t tolerate

being out in cold or damp weather for

extended periods or when the pollen count is

high or the air quality is poor without

severe respiratory compromise. He has also

been diagnosed as emotionally unstable and

is undergoing weekly therapy at a mental

health clinic. His school attendance is

irregular, with excessive absences. He

missed 53 days during the last school year.

He has a decreased activity tolerance and

cannot participate in most typical

activities with his peers without allowing

for frequent rest periods.

Lawrence and his family are living in a

substandard apartment due to lack of funds.

They have frequent problems with water leaks

and flooding which leads to the growth of

mold and mildew. Spores from the mold and

mildew have triggered asthmatic reactions in

Lawrence.

Lawrence has been denied SSI on initial

application anu reconsideration because his

condition, though severe, is not disabling

according to the standards for minor

children.

VALERIE HARTWELL just turned 18 and

lives in Vermont. She is claiming

children’s benefits for the period from

September, 1985, when she filed her most

recent clain, through her eighteenth

birthday on June 25, 1989. Valerie was

diagnosed as suffering from cystic fibrosis

when she was five months old. She is

treated with pancrease, a pancreatic

supplement, to aid digestion; with a special

diet; and with chest therapy twice a day to

expel the mucus that builds up in her lungs.

She has had to be hospitalized frequently

when her condition deteriorates, primarily

due to serious respiratory complications

that require parenteral antibiotic

treatment. Her hospital stays last from a

few days to a week or more. After

discharge, she undergoes intravenous therapy

at home for another week.

Ms. Hartwell has a chronic cough which

causes frequent gagging and vomiting. She

is particularly susceptible to colds and

bronchial infections and often has to take

antibiotics to avoic more serious illnesses.

At age eight, she was diagnosed as suffering

from asthma and allergies. As a result, she

must use an inhaler four to six times a day

and must take Prednisone every other day.

The asthma has exacerbated the pulmonary

problems caused by the cystic fibrosis, and

Ms. Hartwell suffers weekly asthma attacks

which often occur at night causing her to

lose sleep.

Ms. Hartwell is allergic to many

substances including cigarette smoke, dust,

mowed grass, strawberries, carrots, and

bees. She continues to be treated for

pancreatic insufficiency and to suffer

gastro-intestinal distress which causes

weekly diarrhea, constant gas and bloating,

and frequent stomach pains. In addition,

scoliosis was diagnosed in 1984. This

condition «suses back pain and prevents her

from lifting heavy objects. She is being

treated for the scoliosis with prescribed

exercises and with clinical treatments;

however, she finds that she cannot do the

prescribed exercises consistently due to her

asthma and cystic fibrosis. In 1985,

diabetes was diagnosed. At the time of her

hearing before the Administrative Law Judge,

Ms. Hartwell was taking over 40 prescribed

medications daily. Although Ms.

Hartwell was granted SSI benefits at an

early age, the Secretary terminated her

benefits when her condition improved. She

was denied benefits twice in 1983 and again

in 1985. She appealed the last denial

through the administrative process and the

federal court. Her claim has now been

remanded for further administrative

proceedings. Hartwell _v. Sullivan, No. 88-

74 (D. Vt. Remanded May 4, 1989).

TERRY HOUCK, is fifteen years old and

lives in Wisconsin. He suffers from mental

retardation, attention deficit disorder, and

minimal brain dysfunction. He is taking

Ritalin for hyperactivity. In addition,

Terry is very aggressive, has difficulty

relating to his peer group, and spends much

time alone and withdrawn. He attends

classes for children with learning

disabilities, but finds school to be a

struggle. Recently, doctors have determined

that Terry suffers from scoliosis, that his

right leg is slightly longer than the left,

and that ho has pelvic tilt.

Terry has been denied SSI benefits and

has exhausted all levels of administrative

review. He is the plaintiff in a federal

district court action which has been stayed

pending the outcome of this case. Houck v.

Sullivan, No. 88-C-1225 (E.D. Wisc. Stay

entered May 24, 1989).

DELDRICK JACKSON is twelve years old

and lives in New York. Deldrick has been

diagnosed as severely emotionally disturbed.

He has frequent violent outbursts, and has

had a long history of serious disciplinary

problems at home and at school. He has been

physically and verbally aggressive with

little provocation and has been placed in

increasingly restrictive special education

classes at school.

Deldrick has been denied SSI benefits.

An Administrative Law Judge determined that

his impairments do not meet or equal the

listings. (Decision dated July, 24 1989).

At the hearing, the medical advisor agreed

that, if Deldrick were an adult, his

problems with concentration, persistence,

and pace, alone would prevent his employment

at any job. However, the Administrative Law

Judge found Deldrick ineligible for benefits

because the medical findings did not meet

the requirements of the listings

SHAWN KELLER is eleven years old and

lives in Pennsylvania. Shawn suffers from

attention deficit disorder; with

hyperactivity, mental retardation, earning

preblens, and a slight speech impediment.

His intellectual development has been

measured within the borderline range, with a

Verbal Score of 70, a Performance Score of

77, and a Full Scale Score of 72. Shawn has

demonstrated a delay in visual-motor

coordination and low psycholinguistic

abilities. He attends EMR special education

Classes, and despite compliance with a

medication regimen, Shawn has periods of

increased hyperactivity when his classroom

behavior is unacceptable. He has a short

attention span, has difficulty in following

directions, and requires one-on-one

attention to keep on task.

Shawn has been denied SSI benefits.

The Administrative Law Judge found that

Shawn did not meet the listings because his

lowest IQ score (70) was above the level

required by the listings (69). Listings,

§112.05C. He also found that the attention

deficit disorder did not meet the level of

severity required by the listings.

(Decision dated November 29, 1988.) Shawn’s

case is appending before the Appeals

Council.

HENRY ROSADO is eleven years old and

lives in rennsylvania. His primary language

is Spanish. He suffers from mental

retardation, although his IQ scores range

from 40 to 78 on different tests. He also

has a visual-motor dysfunction, an

oppositional disorder, and attention deficit

disorder. Henry takes Ritalin to control

his hyperactivity put still experiences

difficulty in concentrating and in

completing tasks in a timely manner. He has

little tolerance for frustration, which

results in either impulsive behavior or

resignation of effort. In addition, Henry

has marked difficulty in social functioning

both within his family and with peers or

teachers.

Henry has been denied SSI benefits. He

appealed the initial denial through the

administrative process. His case was

remanded from the Appeals Council to an

Administrative Law Judge who denied benefits

again. Citing evidence that Henry’s low IQ

scores may have been the result of his

passive-aggressive attitude and lack of

verbal facility in English, the

Administrative Law Judge found that Henry’s

IQ did not meet the listings criteria. He

also found Henry’s oppositional disorder not

to be severe. (Decision dated March 28,

1989.)

MONISHA SMITH is ten months old and

lives in California. She has spina bifida

myelomeningocele. She was born with a sac

which contained her spinal cord and its

enveloping membranes protruding from her

spine. This sac was repaired and covered

immediately after her birth. A shunt was

implanted to drain cerebrospinal fluid from

the brain down into the abdominal cavity.

She has experienced one shunt failure which

required surgery. The spina bifida has

resulted in some paralysis which affects her

legs so that she is not yet able to crawl.

The paralysis has also affected her bowel

and bladder, and as ae result, Monisha

requires digital stool removal and

catheterization every two hours.

Monisha is developmentally delayed in

all areas. She receives occupational

therapy in her home twice a week, and in the

interim, her mother implements an infant

stimulation program. In addition, her

complex of problems requires visits to

doctors at least once a week. Monica’s

mother, a single parent, has not been able

to return to work because of the care that

Monica requires.

Monisha has been denied SSI. She does

not meet the listings for congenital

abnormalities, because spina bifida is

compatible with life outside the womb and

because she can be expected to function

above the two year old level. Listings,

§110.08. She does not meet the neurological

listings, because her paralysis has not yet

interfered with age appropriate activities.

Listings, §111.08A. She does not meet the

listing for mental disorders because she

cannot demonstrate a delay of 50% or more in

all areas of development. Listings,

§112.05A.

JEANNETTE TOOMEY is five years old and

lives in Pennsylvania. Jeannette suffers

from severe hyperactivity, a mild expressive

speech delay, and delayed fine motor skills.

Although she receives an unusually high dose

of Ritalin, she manifests unmanageable,

disruptive, impulsive, and hyperactive

behavior. In fact, the Administrative Law

Judge commented on her uncontrolled behavior

on the day of her hearing when she left her

chair, climbed under the examining table,

moved constantly about the room, and set off

a fire alarm. Nevertheless, Jeannette has

been denied SSI benefits. The

Administrative Law Judge found clear

evidence that she suffers from psychological

impairments and behavior problems, but he

concluded that these impairments did not

satisfy the criteria of the listings.

(Decision dated February 15, 1989.)

KENDRA WHALON is two years old and

lives in Texas. She suffers from Klippel-

Trenaunay-Weber syndrome, a rare condition

that produces a crippling growth disturbance

on her left side. Her left arm ‘s now twice

the size of her right arm and colored with a

birthmark-like stain. When she was 13

months old, her treating physician concluded

that the condition will worsen with time,

causing functional motor impairment,

reduction in mobility and possible

respiratory difriculties. At that point,

the impairment had caused spinal curvature

and loss of lung volume. In 1988, a

consulting neurologist noted that Kendra was

not able to use her arm at all before she

started to receive physical therapy. He

concluded that Kendra’s overall prognosis is

not good because the arm will keep growing

enormously in size. He also indicated that

surgery may be necessary in the future.

Kendra has been denied SSI benefits,

and her case is now pending at the Appeals

Council. In denying her initial ciaim, the

evaluator noted that Kendra may need special

care and continued doctor’s treatment but

concluded that she was stil* too young to

evaluate developmentally. ,Determination

dated December 14, 1987.) The

Administrative Law Judge also found no doubt

that Kendra will need regular medical care

but concluded that because of the lack of

findings at the listings level, he could not

make a finding that she was disabled.

(Decision dated November 29, 1988).

SUMMARY OF ARGUMENT

Congress extended SSI benefits ‘*o

children in 1974 in order to provide a

greater level of support to those in the

greatest need - children with disabilities

who live in poverty. Since that time, SSI

has been an essential source of support for

many children with disabilities and their

families. However, not all children with

seriously disabling conditions have been

able to benefit from this progran.

In this case, the Court of Appeals held

that the Secretary’s procedure for

deternining disability in children’s cases

violates the Social Security Act because it

does not permit children to show that they

suffer from any disability of comparable

severity to one that would qualify an adult

for SSI benefits. The Secretary’s procedure

is deficient because it does not provide

children with the opportunity, which the

Secretary provides to adults, to demonstrate

the impact that their impairments have on

their ability to function.

The cases described by Amici illustrate

how this limited procedure ignores seriously

disabling impairments. The Secretary’s

procedure requires children to show medical

impairments that meet or are equal to the

Listing of Impairments developed by the

Secretary. The procedure does not consider

the actual effect the impairments have on

individual children. Furthermore, it

disregards significant disability factors

such as dependence on medical technology or

absence from school and fails to consider

the actual degree of support a child may

require.

Improving the Listing of Impairments

will not fully resolve these problems

because no medical listing can incorporate

individual differences in each child’s

actual ability to function.

I. THE SSI PROGRAM PROVIDES ESSENTIAL

SUPPORT TO CHILDREN WITH SPECIAL NEEDS.

In 1974 Congress extended the benefits

of the SSI program to children to provide a

greater level of support than was available

at that time to children in the Aid to

Families with Dependent Children (AFDC)

progran. The report issued by the House

Committee on Ways and Means says:

It is your committee’s belief that

disabled children who live in low-

income households are certainly among

the most disadvantaged of all Americans

and that they are deserving of special

assistance in order to help them become

self-supporving members of our society.

Making it possible for disabled

children to get benefits under this

program, if it is to their advantage,

rather than under the programs for

families with children, would be

appropriate because their needs are

often greater than those of non-

disabled children.

House Report No. 92-231, 92d Cong., 2d

Sess., pp. 147-8, reprinted in 1972 U.S.

Code Cong. & Adm. News 4989, 5133-34.

Since that time, the SSI program has

been an essential source of support to many

children with disabilities and their

families. A study commissioned by the

Secretary concluded that the benefits

available through the SSI program are

important in meeting the significant costs

of caring for a child with disabilities.

Urban Systems Research & Engineering, Inc.,

Survey _of _Blind and Disabled Children

Receiving Supplemental Security Income

Benefits, SSA Publication No. 13-11728, 65-

67 (1980). (*Survey”). In many cases, the

SSI program is the only source of support

for children with disabilities because it

provides benefits to children in intact

families who would not have been eligible

for AFDcC.? Id. Even for children who are

3 In order to be eligible for AFDC,

children must be deprived of parental

support and care because of the death,

continued absence, incapacity, or, in some

states, unemployment of a parent. 42 U.S.C.

§606 (a). Because “unemployment” is defined

eligible for AFDC, the higher SSI benefits

are important in meeting out-of-pocket costs

and the medical expenses not covered by the

medicaid program. [J[d. 63-64

The high cost of caring for a child

with disabilities has been confirmed by

other researchers. See, @.g., J. Butler, P.

Buddetti, M. McManus, S. Stenmark, FP.

Newacheck, Health Care Expenditures _for

Children with Chronic Illness, in ISSUES IN

THE CARE OF CHILDREN WITH CHRONIC ILLNESS,

827 ~ 863 (N. Hobbs, J. Perrin, eds. 1985).

In the case of children with spina bifida,

out-of-pocket expenses directly attributed

to the child’s condition have been estimated

to average 12.3 percent of family income.

Id. at 876. Children with cystic fibrosis

often require nonprescription medications,

physical therapy, extra food and nutritional

stringently, many children in intact

families are not eligible for AFDC even if

neither parent is employed.

supplements, and equipment for lung care,

such as nebulizers, and mechanical chest

percussors. N. Lewiston, Cystic Fibrosis,

in ISSUES IN THE CARE OF CHILDREN WITH

CHRONIC ILLNESS, supra, 201-203. Children

with diabetes need more expensive food to

meet special dietary needs. Children with

certain mental impairments and those who are

dependent on medical technology need

constant or frequent protective supervision

and monitoring. In many families, the

parents’ ability to work is limited because

of the extraordinary time demands involved

in providing supervision or special

treatment. See @.g., D. Salkever, Parental

Opportunity Costs and Other Economic Costs

of Children’s Conditions, in ISSUES IN THE

CARE OF CHILDREN WITH CHRONIC ILLNESS,

Supra. 864-879. Even tne expense of

transportation to and from the hospital and

the offices of various doctors and

therapists becomes significant to families

with limited financial resources.

Furthermore, many medical insurance programs

require families to make co-payments for out

patient services and drugs.

Children with disabilities are also

more likely to be harmed by poor living

conditions than are children without

impairments. Substandard housing, lack of

heat, inadequate nutrition, and other

effects of poverty often have a serious

effect on already vulnerable children.

Furthermore, utility services may be

critical to children with special needs. For

example, the need for a regulated

temperature or for special equipment not

only makes utility service essential but

also results in high utility bills.

In addition to the cash SSI provides to

many low income children and their families,

SSI eligibility may be necessary to

establish eligibility for medicaid,* home

health services, and other supportive

programs in many states. Thus, SSI is

essential to meet the special needs of

children with disabilities who live in low

income households. However, many needy

children with severe impairments are denied

the benefits of SSI.

II. THE SECRETARY ’S METHODOLOGY FOR

DETERMINING DISABILITY IN CHILDREN’S

CASES IS UNDULY RESTRICTIVE IN THAT IT

EXCLUDES CHILDREN WITH SERIOUS

DISABLING IMPAIRMENTS WITHOUT PROVIDING

THEM AN OPPORTUNITY TO DEMONSTRATE

THEIR ACTUAL DEGREE OF # FUNCTIONAL

LIMITATION.

SSI benefits are available to adults

and children who meet the SSI financial

criteria and who are disabled. 42 U.S.C.

§1381. An adult is disabled if he or she

is unable to engage in any substantial

gainful activity by reason of any

medically determinable physical or

4 states must provide medicaid benefits

to children who are on SSI, 42 U.S.C.

§1396a(a)(10)(A)(i), but have the option of

providing these benefits to many other needy

children. 42 U.S.C. § 1396a(a) (10) (A) (ii).

mental impairment which can be expected

to result in death or which has lasted

or can be expected to last for a

continuous period of not less than

twelve months.

42 U.S.C. §1382c(a) (3) (A). Children are

disabled if they suffer “from any medically

determinable physical or mental impairment

of comparable severity.” Id.

The Court of Appeals for the Third

Circuit held that the Secretary’s procedure

denies children the opportunity to show that

they suffer from any impairment of

comparable severity to an impairment that

would be considered disabling in an adult.

Zebley _v. Bowen, 855 F. 2d 67 (3rd Cir.

1988). The inquiry for children is limited

to whether there are medical findings

establishing an impairment that meets or is

equivalent to the Listing of Impairments

developed by the Secretary. Id. 74. Adults

who do not meet this listings requirement

are permitted to demonstrate that they are,

nevertheless, disabled based on their actual

degree of functional impairment. Id. 73

Children are denied this opportunity to

prove disability. Therefore, the Court of

Appeals held, the Secretary’s regulations

are inconsistent with the statute “in

precluding a finding that a child is

disabled unless his impairment meets or

equals a listed one.” Id., 73-74.

The experience of Amici illustrates the

effect of the Secretary’s failure to

consider a child’s actual degree of

functional impairment. Many children who

should be found eligible are excluded from

the SSI program because their particular

impairment or combination of impairments do

not mesh with the listings.

A. The Secretary’s Procedure Fails to

The Listing of Impairments does not

include factors that are common to many

impairments, such as pain, reduced stamina,

and the side effects of medication. In

adults, these factors are considered in

making the assessment of residual functional

capacity. However, that consideration is

denied to childr>n.° Therefore, factors

such as the pain caused by Blake DeWitt’s

migraine headaches, the discomfort resulting

from Valerie Hartwell’s gastro-intestinal

problems, and the lack of stamina suffered

by Blake and by Lawerence Greatheart is

ignored.

Moreover, the Listing of Impairments

does not address the symptoms that accompany

many conditions, such as Tourette syndrome,

attention deficit disorder, Down syndrome,

conditions require intensive support and

5 Congress underscored the importance

of an individualized assessment of pain in

enacting the Disability Amendments of 1984,

Pub. L. 98-240, 42 U.S.C.§ 1382c(a) (3) (gq),

incorporating §423(d) (5) (A).

6 The listings for cystic fibrosis

cover only the respiratory symptoms. See,

Listings, §103B.

intervention. As a result, children with

these conditions must demonstrate that their

impairments are equivalent to a listed

impairment. However, the Secretary’s

definition of medical equivalence is

extremely restrictive. Social Security

Ruling (SSR) 83-19, J.A., 236, 238-240;

Social Security Administration (SSA), Policy

Operations Manual System (POMS), §24505.015,

J.A. 244, 246-251. It expressly precludes

any consideration of an actual functional

limitation, SSR 83-19, supra, 239-240; POMS,

supra, 251.

Lawrence Greatheart’s case demonstrates

the problems with the Secretary’s

methodology. The listings do not include

allergies and do not provide a means for

considering the functional impact of

Lawrence’s allergies. Therefore, the

decisionmakers cannot take into account that

Lawrence’s allergies preclude him from using

public transportation and prevent him from

going outside on many days. The effect of

his medications and of his emotional

problems are also disregarded. Valerie

Hartwell’s allergies and her susceptibility

to bronchial infections are also excluded

from consideration. Kendra Whalon’s rare

condition is not close enough to any of the

listings to permit an adequate comparison.

Blake DeWitt’s case demonstrates the

inflexibility of the Secretary’s procedure.

Blake was denied benefits because he was

unable to show that his hypertension caused

impaired renal functioning, cerebrovascular

damage or congestive heart failure, Listings

§104.03, even though it frequently exceeded

the level established by the child listings.

His frequent headaches, dizzy spells, and

nosebleeds are not taken into account to

determine whether the combination of these

impairments equal the listings. Blake is

further disadvantaged by the fact that there

is no childhood listing for obesity. The

Administrative Law Judge was required to use

the adult listing for obesity which is

Clearly inappropriate because a child’s bone

structure is different from the bone

structure of an adult. Blake was not found

to be obese, even though his height, at 64

1/2 inches tall, was slightly below that of

an average eleven year old but his weight,

at 241 pounds, was more than three and a

half times that of an average eleven year

old at the time of his hearing.

Jeannette Toomey ’s case provides

another illustration. Despite clear

documentary evidence, supported by

observations at the hearing, that

Jeannette’s behavior was out of control, the

Administrative Law Judge felt constrained to

deny benefits. As the medical advisor

commented in tis testimony, Jeannette’s

condition falls “through the cracks” in the

listings. Toomey Decision, supra, 4.

Children with retardation are

particularly susceptible to falling through

the cracks. When retardation is accompanied

by another impairment, the additional

impairments are not considered in

combination unless the child’s IQ score

falls below 69, regardless of ability to

function. Listings, §112.05C. For example,

Yolanda Dowdy’s severe cognitive impairments

were not considered because her IQ scores

fell above 69, even though her functioning,

in the lower end of the EMR range, would

equate to an IQ substantially below 69.

Thus, Yolanda had to show that she had

impairments, other than her cognitive

impairments, that met or equaled a listing.

The cases of Amy Gifford, Terry Houck,

Shawn Keller, and Henry Rosado present

similar problems. Because their IQ scores

were above 69, the impact of their

impairments on their actual ability to

function is irrelevant. Amy’s learning

disabilities reduce her ability to function

to a level well below that of a child with

mild retardation alone. Terry’s behavior

and attention problems also reduce his

ability to function. However, the IQ scores

of these children prevent consideration of

the overall effect of all of their

impairments. In Shawn’s case, the medical

advisor agreed that the one point difference

between Shawn’s lowest score (70) and the

listing requirement (69) was not meaningful,

but Shawn was found not to meet the listings

nevertheless. Therefore the combination of

his impairments were not considered. In

Henry’s case, his behavioral problems and

his limited knowledge of English were used

to discount the IQ scores that fell below

69, rather than as evidence of impaired

functioning.

Ms. Boucher’s case demonstrates the

difference between the treatment of children

and adults. She was found not to meet the

listings as a child because her IQ scores

were above 69, but as an adult, she is

entitled to an assessment of her ability to

do work in the national economy. This

assessment will take inte account the fact

that she functions at a lower intellectual

level than che tests.

Very young children cannot be tested

for IQ. As a result, they must show a 50%

delay in all areas of development.

Listings, §112.05A. However, this

measurement imposes an even more stringent

test than does the IQ requirement. The

requirement of a 50% delay is analogous to

requiring a 50 IQ in mental functioning.

Older children need only show an IQ score at

or below 59 to qualify. In addition, older

children with an IQ score between 60 and 69

may qualify by showing an additional mental

or physical impairment. However, young

children must show a 50% delay in all areas.

Perla Acosta’s case illustrates the

harshness of this limitation. Even though

her developmental delay is clearly severe,

she will not be able to demonstrate that she

meets the listings until she is older.

Monisha Smith has also been unable to

demonstrate a 50% delay in all areas,

despite the obvious severity of her

impairments.

The listings do not take into account

such things as dependence on medical

technology, degree of support required, and

absence from school. Consequently, these

factors are not considered in making

disability determinations for children.

Advances in medical technology have

saved the lives of many children and allow

many children who were once confined to

institutional settings to live at home.

Office of Technology Assessment Task Force,

TECHNOLOGY-DEPEYOFNT CHILDREN: HOSPITAL VS.

HOME CARE, 5 (1988), and Newacheck, Fox, &

McManus, Home Care Needs of Chronically Il)

Children, CARING, (June, 1988). However,

the Secretary does not take into

consideration a child’s dependence on this

technology when determining disability.

For example, the listings do not

consider tracheostomies. Tracheostomies are

surgical openings in the neck through which

a child breathes and through which liquids

are suctioned (extracted) to prevent

aspiration or formation of mucous plugs

which could cut off breathing. ’”

Tracheostomies impose significant

limitations on the activities of daily

living, and a child with a tracheostomy

usually requires supportive help at home.®

7 The frequency of (the need for

suctioning varies from as often as every

five to ten minutes to once every other

hour.

8 Having a tracheostomy is one of the

indices of a need for skilled nursing care.

42 C.F.R. §409.33(b) (3). See, also, 42

C.F.R. §440.170 (da) incorporating §440.40

and §§409.31 through 409.35.

Most children with tracheostomies have to be

closely monitored to identify the need for

intervention. They also usually require

pulmonary toileting.? Because a child with

a tracheostomy does not have the advantage

of a nose to moisten air and trap dust,

there are environmental limitations on where

the child can go and what he can do.

The listings also do not include a

range of feeding problems children

experience. Because of problems in

swallowing, problems with esophagus

peristalsis, and problems with reflux and

the aspiration of food and fluids into the

lungs, many children require specialized

assistance in order to receive nutrition.

9 pulmonary toileting is a procedure

which involves placing the child in a

downward slant and percussing each of the

eight lung lobes to loosen secretions. The

need for pulmonary toileting varies from

once or twice a day to every three hours.

Failure to provide proper pulmonary

toileting and timely suctioning can result

in aspiration pneumonia.

This assistance may take the form of a

gastrostomy (where a tube is surgicaliy

implanted in the stomach), a nasal-gastric

tube, or a specific feeding protocol.?°

Feeding with a nasal-gastric tube, such as

that required by Sara Chase, requires the

insertion of a tube through the nose, down

the throat, and into the stomach. This

creates a neri for extensive support and

presents obvious functional limitations.++

Even greater than the number of children who

are dependent on medical technology, is the

number of children who require extensive

10 children who require specific feeding

protocols have to be fed slowly and

carefully over a period of time, often

taking an hour and a half or more per

feeding. After feeding, they typically have

to be positioned correctly to minimize the

risk of food refluxing from the stomach up

into tae lungs.

1l waving a gastrostomy or needing a

nasal-gastric tube for feeding is also one

of the indices of the need for skilled

nursing care. 42 C.F.R. §409.33(b)(2). See

note 8 above.

care at home. Newacheck, Fox, & McManus,

Supra. One study found that among children

with significant functional limitations,

help from another person was the most common

type of assistance required, Id., 8.

However, the Secretary does not take the

need for such support into consideration in

making disability determinations for

children.

For example, the shunts required by

Kenyada Ales and Monisha Smith impose extra

care responsibilities on the family,

including daily measurements of the head,

monitoring of temperature to detect a shunt

infection, and monitoring for nausea and

changes in behavior, which indicate a shunt

failure. Monisha’s mother also provides

daily infant stimulation therapy. Valerie

Hartwell requires extensive support to

provide chest therapy, to perform pinprick

blood tests for diabetes four times a day,

to administer insulin injections twice

daily, to administer 40 types of medication

daily, to adjust her diet, and to monitor

her for signs and symptoms that indicate the

need for medical intervention. Jenniffer

Cox’s mother must manage Jennifer’s diet,

administer daily enemas, monitor Jennifer’s

bladder activity closely to avoid infection,

and change her several times a day because

of Jennifer’s inability t>% regulate her

bladder and bowels. However, the need for

extensive support is not considered in

determining whether these children are

entitled to receive SSI.

Some children require considerable

supervision because of their behavior. For

example, Jeannette Toomey and Deldrick

Jackson need close supervision to attend to

school work or to avoid getting into

difficulty. However, this need for

supervision is not part of the disability

determination.

Neither is frequent hospitalization

considered, even when it significantly

interferes with school. For example, Sara

Chase was hospitalized five times in 1988,

and Kenyada Ales has been hospitalized for

surgery three times in the 22 months she has

been alive. Richard Doone and Cheryl

Caudill missed a significant amount of

school as a result of hospitalization and

other medical intervention. However, these

factors are not taken into account. Richard

Doone’s need for four to six half hour

treatments every day is also ignored.

These examples illustrate the problems

that result from the Secretary’s requirement

that children meet or equal the Listing of

Impairments. The Secretary has recently

made an effort to improve the listings, but

even improved listings will not compensate

for the failure to provide children with an

opportunity to prove their actual degree of

functional limitation.

The Secretary has proposed regulations

that would substantially revise the Listing

of Impairments for Mental Disorders. 54

Fed. Reg. 33,238 (August 14, 1989). These

regulations, if promulgated, will improve

the Secretary’s determination process for

children with mental disorders. This

improvement is important because the

listings permit preliminary screening

without the need for a full individualized

assessment in the case of individuals whose

impairments meet or equal the listings.

Bowen v. City of New York, 476 U.S. 467, 470

(1986); Bowen v, Yuckert, _..._ U.S. __, 107

U.S. 2287, 2297 (1987). However, the

proposed regulations do not address problems

with the listings for physical impairments.

Furthermore, even improved listings will not

fully address the need for an individualized

assessment of functioning. See, Mental

Health Association of Minnesota __v.

Schweiker, 554 F. Supp. 157, aff’d, 720 F.

2d 965 (8th Cir. 1983); Bowen v. City of New

York, supra.

As the Secretary has recognized “[n]jot

all children’s impairments will lend

themselves to formal codification.” SSI

Disability Insurance Letter No. III-11,

Supp. 1 (January 9, 1974), J.A., 97.

Furthermore, new and unforseen problems, }2

developments in medicine, and differences in

medical judgment will continue to make any

set of medical listings inadequate as the

sole criterion for determining disability.1}3

More importantly, even the most thorough

12 For example, we are just beginning

to appreciate the magnitude of the problems

caused by prenatal drug exposure.

13 The Secretary explicitly recognized

these problems in his discussion of

behavioral and learning disorders. SSA

Disability Insurance Letter No. III-1ll-

Supplement 1, supra, J.A., 97-98.

listing of medical impairments} will not

provide an individualized assessment that

considers how each child’s impairments

interfere with age appropriate activities of

Gaily living, including the amount of

support and intervention the child requires

in order to perform those activities.

Thus, no rigid listing of medical

impairments can replace the individualized

assessment of a child’s ability to function.

Rather, the Secretary must give children the

same opportunity to prove the existence of a

Gisabling impairment that he provides to

adults.

CONCLUSION

The foregoing demonstrates that the

Court of Appeals was correct in holding that

the Secretary’s procedure denies children

the opportunity to prove that they suffer

from an impairment that is of comparable

severity to an impairment that would be

found to be disabling in an adult. This

Court should uphold the decision o. the

Court of Appeals for the Third Circuit in

this case.

Respectfully

Submitted,

Alice Bussiere

Marilyn Holle

Counsel for

Amici Curiae

September 7, 1989

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