Amicus Curiae Brief — Sullivan v. Zebley

Supreme Court, US

im \ FILED

NO. 88-1377 sep & eS

JOSEPH F. SPANIOL, JR.

IN THE o-

Supreme Court of the United Sfates

October Term, 1989

LOUIS SULLIVAN,

SECRETARY OF HEALTH AND HUMAN SERVICES.

Petitioner.

BRIAN ZEBLEY, JOSEPH LOVE, JR

. etal,

Respondents

ON WRIT OF CERTIORARI TO THE

UNITED STATES COURT OF APPEALS

FOR THE THIRD CIRCUIT

BRIEF FOR THE AMICI CURIAE

IN SUPPORT OF RESPONDENTS

BRIEF OF THE

LISTED INSIDE COVER

Nancy Winkelman

Schnader, Harrison, Segal & Lewis

Suite 3600, 1600 Market Street

Philadelphia, PA 19103

(215) 751-2342

Ot Counsel!

Janet F. Stotland*

llene W. Shane

Robin Resnick

2100 Lewis Tower Building

225 South | Sth Street

Philadelphia, PA 19102

(215) 735-6873

Attorneys tor Amici Curiae

*Counsel of Record

THE COPY CENTER. INC 615 Chestnut Street

Pruiadeipma. PA 19106 215-928-1900

BRIEF OF THE:

PENNSYLVANIA PROTECTION AND ADVOCACY

MENTAL HEALTH ASSOCIATION IN PENNSYLVANIA

PENNSYLVANIA MENTAL HEALTH CONSUMERS’ ASSOCIATION

PENNSYLVANIA COALITION OF CITIZENS WITH DISABILITIES

DEVELOPMENTAL DISABILITIES PLANNING COUNCIL OF PENNSYLVANIA

PENNSYLVANIA ASSOCIATION FOR RETARDED CITIZENS

PENNSYLVANIA ASSOCIATION FOR CHILDREN AND ADULTS WITH

LEARNING DISABILITIES

ASSOCIATION POR CHILDREN AND ADULTS WITH LEARING DISABILITIES

SPINA BIFIDA COALITION OF PENNSYLVANIA

PRADER-WILLI SYNDROME ASSOCIATION OF PENNSYLVANIA

PENNSYLVANIA TOURETTE SYNDROME ASSOCIATION

UNITED CEREBRAL PALSY ASSOCIATION OF PENNSYLVANIA

UNITED CEREBRAL PALSY ASSOCIATION OF PHILADELPHIA & VICINITY

AMERICAN COUNCIL OF THE BLIND PARENTS

PENNSYLVANIA COUNCIL OF THE BLIND

ASAP COALITION OF AUTISM SOCIETY OF SOUTHEASTERN

PENNSYLVANIA

SICKLE CELL GENETIC DISEASE COUNCIL

PARENTS INVOLVED NETWORK

MEDIA CHILD GUIDANCE

ERIE INDEPENDENCE HOUSE

MILLCREEK AND ERIE COUNTY ADVOCATES

DOWN SYNDROME TODAY

THE SECRETARY HAS VIOLATED

CONGRESS' MANDATE THAT

CHILDREN WHOSE DISABILITIES

ARE "OF COMPARABLE SEVERITY"

TO THOSE OF DISABLED ADULTS

RECEIVE SSI BENEFITS..........

B.

II.

The Secretary's Recula-

tions Impose Far More

Restrictive Standards

For Determining Dis-

ability On Child

Claimants Than On Adults.

The Abbreviated Evalua-

tion Process Accorded

To Child Claimants

Fails To Identify Many

Children Whose Disabili-

ties Are "Of Comparable

Severity" To Those Of

DUS h ie Ggeeececeececscc<

A. The Listings Are

Inherently Under-

Dea cececscces

B. The Listings Are

Even More Under-

inclusive For

Children Than They

Are For Adults......

Page

12

12

19

19

22

hh

; amu Se

; ae ana eae

wise ¥

» ioe

CONCLUSION

An Evaluation Of

The Functional

Capacity Of Child

Claimants Is

a

The Secretary Has

Failed To Devise Any

Method To Assess

Adequately The Func-

tional Capacity Of

Child Claimants.....

Numerous Severely

Disabled Children

Have Been And Will

Continue To Be

Denied SSI Benefits

Due To The Secre-

tary's Refusal To

Assess Their Func-

tional Capacity.....

26

31

35

47

Allegra v. Bowen, 670 F. Supp. 465

£ * 8 i | errr 29

CBDR Pe cccccccccccecescesesecsy 14, 15,

17, 26

x, 631 F. Supp.

FOS CBee e BOOP ccccccceccess 29

, £61 U.S. 458

C2FGDS Po ccccccccescscccecscsesees 17

Marcus v. Bowen, 696 F. Supp. 364

i i VS on ee ote ee e's 16, 17,

24

se). |) PePPerrererreeeerere ne 14

Disabilities Benefits Reform Act

of 1984, P.L. 98-460,

ae Ges Deis Oe cesoeeeeccecas 35

Developmentally Disabled Assis-

tance and Bill of Rights

Act of 1984, P.L. 98-527, 98

Stat. 2662, 42 U.S.C. § 6000

Protection and Advocacy for

Mentally Ill Individuals Act

of 1986, P.L. 99-319, 100

Stat. 478, 42 U.S.C. § 10801

-iii-

Social Security Amendments Act of

1972, P.L. 92-603, 98 Stat.

BOBO. ccccccccccceccescccesceocs 12

42 U.S.C. § 402(d)....---- eee eeeees 29

42 U.S.C. § 405(a)...---- ee eee ences 14

42 U.S.C. § 1382c(a)...----- ee ener passim

42 U.S.C. § 1383(d)(1)...-------++- 14

CONGRESSIONAL SOURCES

House Report No. 231, 92d Cong.,

2d Sess., reprinted in 1972

Mews GOOD. ccccccccscccceseess 1, 13

REGULATIONS

20 C.F.R. Part 404, Subpart P,

APP. Lice cc cece ecccerseeseees 2

20 C.F.R. Part 404, Subpart P.

App. 1, Part A, § 8.00........ 26

20 C.F.R. Part 404, Subpart P,

App. 1, Part A, § 10.10....... 25

20 C.F.R. Part 404, Subpart P,

App. 1, Part A, § 11.09....... 26

20 C.F.R. Part 404, Subpart P,

App. 1, Part A, § 11.13....... 26

20 C.F.R. Part 404, Subpart P,

App. 1, Part A, § 11.16....... 26

20 C.F.R. Part 404, Subpart P,

App. 1, Part B, § 101.03...... 23

-iv-

Page

20 C.F.R. Part 404, Subpart P,

App. 1, Part B, § 102.00A..... 24

20 C.F.R. Part 404, Subpart P,

App. 1, Part B, § 102.02...... 24

20 C.F.R. Part 404, Subpart P,

App. 1, Part B, § 103.00...... 45

20 C.F.R. Part 404, Subpart P

App. 1, Part B, § 111.02...... 23

20 C.F.R. Part 404, Subpart P,

App. 1, Part B, § 111.07...... 23

20 C.F.R. § 404.1920(d)..........4.. 16

Be Gebotee B Gee Oe ccccsecccecesesse 1S, 16

17, 34

Be S.GeR. 9 GBS. BBG. cc ccc-cccccscecs 18, 34

Be S.BeMe 9 GEO. GBB e cc ccccccccccccs Se wee

25

oe Geboems | Gee Gicescccesceccocess 1S, 20

34

SO ©C.8.R. § G36. 9GB(G). .ccccccccecs 17

42 Fed. Reg. 14705 (1977).......... 33

44 Fed. Reg. 18175, 18176 (1979)... 19

54 Fed. Reg. 33238 (August 14,

a6 0606660006666 6600e6eCer 30, 31

SS Pa. Code § 297.4(w)(4).......... 36

OTHER REGULATORY AUTHORITIES

Sap Ge PEM e ccccccsocesetsecseese 35

SSA, POMS, DI 24501.025............ 21

SSA, POMS, DI 24505.015............ 34

SSA Disability Insurance Letter

Me BeePameosoeceeeceocacecece 27, 29

SSA Disability Insurance Letter

Me BESPERe BBs Beccccccecce 32

OTHER AUTHORITIES

H. Fox and A. Greaney, Disabled

Children’s Access to

Supplemental Security Income

Se Bec eeceesceeeecocescecs 20, 21

23, 28

Stedman's Medical Dictionary

(Sth ed. 1982)................ 25

SUMMARY OF ARGUMENT

In order to effectuate its intent to pro-

vide financial assistance to disabled children

in low-income families who are “certainly among

the most disadvantaged of all Americans, "/

Congress mandated that a child be eligible for

Supplemental Security Income ("SSI") if he or

she meets the income requirements and is dis-

abled by “any medically determinable physical

or mental impairment of comparable severity”

to one that would render an adult eligible for

SSI benefits.

Despite this clear statutory mandate, the

Secretary of Health and Human Services ("Sec-

retary”) has adopted by regulation two very

different processes for determining disability

of SSI applicants, depending on whether the

Be H.R. Rep. No. 231, 92nd Cong., 2d Sess.

1, 147-48, reprinted in 1972 U.S. Code

Cong. & Admin. News 4989, 5133-34.

Be 4. J.S.C. § 1382c(a)(3)(A) (emphasis

added).

CO EEE

applicant is a child or an adult. In blatant

disregard of Congressional language and in-

tent, the process applied to children is dra-

matically more restrictive than that applied

to adults.

For adults, the Secretary engages in a

comprehensive, two-tiered process. That pro-

cess begins with an abbreviated approach, de-

signed for administrative convenience, which

compares an adult's impairments to the Secre-

tary'’s Listing of Impairments ("Listings") .?

If the adult's impairments do not "meet or

equal" those within the Listings, the Secre-

tary proceeds to the second tier of the

. F The Listing of Impairments, 20 C.F.R.

Part 404, Subpart P, App. 1 (Jt. App. at

115-235) is a catalog of medical findings

descriptive of certain diseases and

disabilities. The Listings are divided

into two parts. Part A is applied to

adults 18 years of age and older and "may

also be applied in evaluating impairments

in persons under age 18 if the disease

processes have a similar effect on adults

and younger persons." 20 C.F.R.

§ 416.925(b)(1). Part B is applied

solely to persons under the age of 18.

20 C.F.R. § 416.925(b)(2).

process -- an assessment of residual function-

al capacity ("RFC") -- which entails an evalu-

ation, on an individualized basis, of the full

effect of the claimant's functional limita-

tions.

The Secretary's two-tiered process for

determining disability in adult claimants stems

from the recognition that evaluating an in-

dividual's impairments solely in terms of the

Listings is insufficient. The Listings are

not -- and cannot ever be -- sufficiently com-

prehensive to enable the Secretary to consider

combinations of impairments, the impact of

impairments on a claimant's ability to func-

tion, the interaction of various impairments,

or subjective factors, such as pain, dizzi-

ness, or side effects of medication. Ac-

cordingly, the Secretary's evaluation process

for adults includes both an abbreviated, List-

ings-based approach and an individualized as-

sessment of functioning if the individual's

impairments do not meet or equal those within

the Listings. The Secretary has thus implic-

-3-

rr

’

itly conceded that the Listings -- by them-

selves -- do not work in all cases.

In sharp contrast to the process for

adults stands the process for children, which

begins and ends with a determination of wheth-

er the child's impairments can be pigeonholed

into the Listings. If the child's impairments

“meet or equal” those within the Listings, he

or she gets benefits; if they do not, he or

she is denied benefits -- without any consid-

eration whatsoever of the effects of the im-

Ppairments on the child's functional abilities,

the combined effect of multiple impairments,

Or subjective factors. Thus, unlike the eval-

uation process accorded adults, there is no

opportunity for children to demonstrate that

their functional limitations render them dis-

~abled.

4

A unanimous panel of the United States

Court of Appeals for the Third Circuit struck

down the Secretary's process for determining

disability in children as flatly inconsistent

with the statute, holding that the regulations

-4-

ar

"do not provide for [an] individualized as-

sessment for children, although they are enti-

tled by statute to receive benefits if suf ter-

ing from ‘any’ impairment of ‘comparable se-

verity’” to one that would entitle an adult

Claimant to benefits. Zebley v. Bowen, 855

F.2d 67, 73 (3d Cir. 1988). The court of ap-

peals determined that the Listings "do not

purport to be an exhaustive compilation of

medical conditions which could impair func-

tioning to the extent necessary to satisfy the

statutory standard for disability,” yet only

adults are given the opportunity to demonstrate

disability through a further individualized,

functional assessment. Id. at 73. "Persuaded

that in the statutory directive that ‘any’

impairment may be disabling if severe enough,

Congress has clearly expressed an intention

that children be given the opportunity for

individual evaluations comparable to the

residual functional capacity assessment for

adults,” the court held that "an individual-

ized determination of the degree of functional

incapacitation is required by statute during

-5-

the disability determination process for chil-

dren.” Id. at 76.

Amici Curiae urge this Court to affirm

the decision of the court of appeals.

INTERESTS OF AMICI CURIAE

Amici Curiae represent children with se-

vere and often debilitating handicaps who have

been or may in the future be denied SSI bene-

fits because of the Secretary's truncated and

formalistic approach. Amici are deeply con-

cerned that disabled children receive a fair

opportunity to obtain disability benefits.

Amici, which consist of almost every major

non-profit disability group in Pennsylvania,

are as follows:

Pennsylvania Protection and Advocacy is

an organization designated by the Governor of

Pennsylvania under the Developmentally Dis-

abled Assistance and Bill of Rights Act of

1984, P.L. 98-527, 98 Stat. 2662, 42 U.S.C.

§ 6000 et seg., and the Protection and

Advocacy for Mentally Ill Individuals Act of

ee -6-

1986, P.L. 99-319, 100 Stat. 478, 42 U.S.C.

§ 10801 et seg., to safeguard and advance the

rights of persons with physical, develop-

mental, and mental disabilities.

The Mental Health Association in Pennsyl-

vania is a statewide Organization that has,

for the past thirty-five years, developed and

mobilized broad-based citizen support for

rights protection and improved care and treat-

ment for adults and children who have mental

illnesses.

The Pennsylvania Mental Health Consumers'

Association is an Organization of consumers of

mental health services, including children,

across the Commonwealth of Pennsylvania.

The Pennsylvania Coalition of Citizens

with Disabilities is a Statewide, cross-

disability, consumer-directed and Oriented

Organization devoted to the integration of all

citizens with disabilities into the mainstream

of life, and the development of comprehensive

service systems to include all citizens.

i

Council of the Commonwealth of Pennsylvania is

The Developmental Disabilities Planning

a council federally-mandated under the Devel-

opmentally Disabled Assistance and Bill of

Rights Act that addresses gaps in policy and

service delivery for persons with developmen-

tal disabilities.

The Pennsylvania Association for Retarded

Citizens is a statewide organization committed

to creating full opportunities for persons

with mental retardation.

The Pennsylvania Association for Children

and Adults with Learning Disabilities is a

statewide organization of parents and profes-

Sionals dedicated to the attainment of appro-

priate human service programs for persons with

disabilities.

The Association for Children and Adults

With Learning Disabilities is a national or-

ganization dedicated to increasing the quality

of life and expanding appropriate services for

individuals with learning disabilities.

The Spina Bifida Coalition of Pennsylva-

nia is a coalition of seven associations lo-

cated throughout Pennsylvania that are dedi-

cated to assisting individuals with spina

bifida.

The Prader-Willi Syndrome Association of

Pennsylvania is an organization dedicated to

assisting persons with Prader-Willi Syndrome,

along with their families.

The Pennsylvania Tourette Syndrome Asso-

ciation, an agency affiliated with the Nation-

al Tourette Syndrome Association, was created

to serve the needs of Pennsylvania citizens

with Tourette Syndrome.

United Cerebral Palsy Association of

Pennsylvania represents nineteen affiliate

egencies throughout Pennsylvania that serve

over 11,000 children and adults with disabili-

ties annually and serves as an advocate for

persons with disabilities throughout Pennsyl-

Vania.

7

Philadelphia & Vicinity is an organization

The United Cerebral Palsy Association of

that has served children with a diverse vari-

ety of disabling conditions for over forty

years.

The American Council of the Blind Par-

ents, pert of the American Council of the

Blind, is an organization dedicated to provid-

ing services and advocating for the needs of

persons who are blind or visually impaired.

Pennsylvania Cvuncil of the Blind, an

affiliate of the American Council of the Blind,

is a chartered organization for the social and

economic advancement of persons who are blind

Or visually impaired.

The ASAP Coalition of Autism Society of

Pennsylvania is a coalition of local chapters

of the Autism Society of America and of indi-

viduals that is designed to enhance the knowl-

edge and strength of local chapters through

statewide networking and to provide autism

Support and advocacy in Pennsylvania.

-

The Sickle Cell Genetic Disease Council

of Southeastern Pennsylvania is an agency that

advocates for persons who are affected with

sickle cell anemia, along with their families.

Parents Involved Network is a parent-run

network of parent groups across Pennsylvania

that engage in self-help, advocacy, training,

and education for parents of children and ado-

lescents whé have emotional or behavioral dis-

orders.

Media Child Guidance is a community agen-

cy that provides outpatient mental health ser-

vices and coordinates services for persons

with mental retardation.

Erie Independence House is a community

based organization that is managed and staffed

by persons with disabilities for the purpose

of assisting other persons with disabilities

to attain and/or maintain their independence.

Millcreek and Erie County Advocates is a

family and consumer organization that has ad-

| ™

vocated with and for Erie County citizens with

disabilities for over sixteen years.

Down Syndrome Today is a support, advoca-

cy, and resource group in Beaver County, Penn-

sylvania for persons with Down's Syndrome,

their parents, and professionals.

ARGUMENT

THE SECRETARY HAS VIOLATED CONGRESS'

MANDATE THAT CHILDREN WHOSE DISABILITIES

ARE “OF COMPARABLE SEVERITY” TO THOSE

_OF DISABLED ADULTS RECEIVE SSI BENEFITS.

I. The Secretary's Regulations Impose

Far More Restrictive Standards For

Determining Disability On Child

Claimants Than On Adults.

In 1972, Congress enacted the Supplemen-

tal Security Ircome program, P.L. 92-603, 86

Stat. 1329 (1972), to provide one federally-

coordinated benefits program for aged, blind,

and disabled persons with limited incomes. As

the House Report stressed, Congress was

‘particularly concerned with the needs of poor,

disabled children:

It is your committee's belief that

disabled children who live in low-

income households are among the most

disadvantaged of all Americans and

that they are deserving of special

assistance in order to help them

become self-supporting members of

our society. H.R. Rep. 231, 92d

Cong., 2d Sess. 1, 147-48, reprinted

in 1972 U.S. Code. Cong. & Ad. News

4989, 5133-34.

- re a a ae

For these reasons, Congress made the

standard for determining disability in chil-

: dren the same as that for adults. The statute

provides:

j

An individual shall be considered to

be disabled for purposes of this

subchapter if he is unable to engage

in any substantial gainful activity

by reason of any medically determin-

able physical or mental impairment

which can be expected to result in

death or which has lasted or can be

expecied to last for a continuous

period of twelve months (or, in the

if he suffers from any medically de-

terminable physical or mental im-

pairment of comparable severity).

42 U.S.C. § 1382c(a)(3)(A) (emphases

added).

Conyress did not prescribe an exact

method for determining when a child's disabil-

ity is “of comparable severity” to that of a

disabled adult, but, rather, empowered the

-l3-

—

— ee

Secretary to establish regulations and proce-

dures "not inconsistent” with the statute. 42

U.S.C. § 405(a), as made applicable to the SSI

program by 42 U.S.C. § 1383(d)(1) (emphasis

added).

However, the disability evaluation pro-

cess for children that the Secretary has de-

veloped is flatly inconsistent with the stat-

ute and, in fact, results in the denial of SSI

benefits to children with disabilities compa-

rable to those of adults, thereby violating

Congress’ explicit mandate under the Social

Security Act. See Mohasco Corp. vy. Silver,

447 U.S. 807, 825 (1980) (agency's interpreta-

tion of statute as reflected in regulation

"cannot supersede the language chosen by Con-

gress").

To ascertain whether an adult claimant is

disabled and therefore eligible for SSI (as-

suming satisfaction of the income require-

ments), the Secretary utilizes a comprehen-

Sive, two-tiered process. See generally Bowen

Vv. Yuckert, 482 U.S. 137, 140-42 (1987). On

-l14-

The Listings enumerate particular con-

ditions, signs, and Symptoms of certain im-

pairments that, without any further evidence

of impaired functioning Capacity, justify a

conclusion that the person is disabled. See

20 C.F.R. §§ 404.1520(d), 416.920(d),

416.925(a). Thus, they provide an administra-

tively efficient method to shorten the evalua-

tion process for SSI applicants who have im-

pairments that are usually disabling. See

Zebley, 855 F.2d at 773; see also Marcus y.

Bowen, 696 F. Supp. 364, 373-76 (N.D. Ill.

1988) (providing a historical review of the

Listings, and concluding that "they were never

intended to be used as a basis for denial of

disability benefits").

Recognizing that persons with son-

"listed" impairments may nonetheless »e« dis-

abled, the Secretary provides that adult

Claimants who do not meet or equal a particu-

lar Listing may still be eligible fer SSI ben-

efits. In such cases, the Secretary applies

the next tier of the process -- an assessment

of the adult claimant's "residual functional

capacity” ("RFC"). See 20 C.F.R. § 416.920(e).

See also Heckler v. Campbell, 461 U.S. 458,

460 (1983); Yuckert, 482 U.S. at 141.

The RFC evaluation is an assessment de-

on a ee

signed to measure the actual degree of func-

tional impairment of the individual based on,

inter alia, descriptions, observations, and

professional evaluations of conditions, signs,

and symptoms other than those included in the

Listings. 20 C.F.R. § 416.945(a) The RFC

determination focuses primarily on the adult

claimant's medical condition and, to a lesser

extent, on the ability of the adult claimant

to work. See Marcus, 696 F. Supp. at 381.

This two-tiered approach for determining

disability in adults by which the Secretary

considers both the Listings and the ability of

- an adult claimant to function stands in marked

contrast to the process utilized for children.

Disability in children is determined using

Only the first tier of the process used for

adults, i.e., an assessment of whether the

-17-

child is engaged in substantial gainful activ-

ity, whether the child's impairments are se-

vere, and whether the child's impairments meet

or equal the requirements of one of the List-

ings. 20 C.F.R. § 416.924.

If the child's impairments are not among

those included in the Listings, then he or she

is automatically denied benefits -- regardless

of the severity of the child's actual func-

tional limitations resulting from single or

multiple impairments, and regardless of any

subjective factors. In short, the Secretary

determines whether or not a child claimant is

disabled without any individualized considera-

tion of that child's actual ability to

function.

As we will demonstrate in the next sec-

tion, the result of the Secretary's process is

that only a subgroup of children whose dis-

abilities are comparable to those of adults

are identified. Other disabled children, in

blatant violation of the Statutory mandate,

are simply denied benefits.

-18-

II. The Abbreviated Evaluation Process

Accorded To Child Claimants Fails

To Identify Many Children Whose

Disabilities Are “Of Comparable

1 ?

Severity’ To Those Of Adults. __

A. The Listings Are Inherently

Underinc] Loon

The Secretary's single-tiered evaluation

process for determining disability in child

Claimants fails to identify many disabled

children who would be eligible for SSI if the

Secretary applied the full two-tiered process

used for adults. By providing for a two-

tiered process for adults, the Secretary has

recognized that the Listings are neither

adequately flexible nor sufficiently compre-

hensive to identify SSI claimants who are dis-

abled under the statutory standard. Indeed,

the Secretary has expressly acknowledged that

the Listings "are intended t. identify the

more commonly occurring impairments shown in

applications for Social Security disability

benefits," and that "(t]he Listing is but one

item in the evaluation process." 44 Fed. Reg.

18175, 18176 (1979). As the court of appeals

in Zebley recognized, "(t]he listings

do not purport to be an exhaustive compilation

of medical conditions which could impair func-

tioning to the exte... necessary to satisfy the

statutory standard for [dis|ability." Zebley,

855 F.2d at 73. See generally H. Fox &

A. Greaney, Disabled Children's Access to Sup-

=

fits, at 42-67 (December 1988) (hereinafter

"Fox & Greaney").

In fact, the Listings are inherently

underinclusive; no set of Listings could pos-

Sibly be sufficiently comprehensive to encom-

pass all disabling conditions. Moreover, the

Listings do not -- and indeed cannot -- take

into consideration the effect of multiple im-

pairments, none of which alone meets or equals

a listed impairment, but which in combination

render a person functionally disabled. See 20

C.F.R. § 416.926. As illustrated by the cases

described infra at 36-47, many children who

have a combination of impairments and are sig-

nificantly disabled are routinely denied SSI

benefits. The inability of the SSI child dis-

ability determination process to take into

account the impact of multiple impairments has

heen consistently identified as one of the

most troublesome aspects of the system. See

Fox & Greaney, at 54 (noting that unpublished

Gata from members of the American Academy of

Pediatrics Committee on Children with Disab-

ilities reveals that increasing numbers of

children have complex medical conditions that

involve as many as five or more different di-

ac’ es). Additionally, the Listings do not

reflect subjective aspects of an individual's

impairment, such as pain, dizziness, or the

effects of medication.© The only suitable

method by which such fundamental factors can

6. In fact, Social Security Administration

policy affirmatively precludes considera-

tion of subjective factors. See SSA Pro-

gram Operation Manual System

§ DI 24501.025 ("[n]lo alleged or reported

intensity of the symptoms can be substi-

tuted to elevate impairment severity to

equivalency") (emphasis deleted) (Jt.

App. at 255).

be taken into account is through the use of a

functional assessment.

By confining the analysis of children's

disabilities to the Listings, the Secretary

ensures that low-income children with multiple

or unusual disabilities will be denied crucial

income supplements. As one administrative law

judge lamented in the case of Christine Bes

discussed infra at 37-38, where a child suf-

fers from multiple impairments that fall "“be-

tween the cracks” of the Listings, Social Se-

curity Administration policy precludes the

granting SSI benefits.

B. The Listings Are Even More Under-

inclusive For Children Than They

Are For Adults.

In addition to the problems resulting

from the inherent underinclusiveness of the

Listings, the existing Listings violate 42

U.S.C. § 1382c(a)(3)(A) because they are in

fact even more underinclusive for children

than they are for adults, rendering it all the

more remarkable that they are the only avenue

open to children to prove disability.

First, the Listings contain inadequate

provisions for children who might be too young

to be tested for various symptoms, but who are

Significantly disabled. See generally Fox &

Greaney, at 54. For example, the section of

the children's Listings governing deficits of

musculoskeletal function requires that the

child manifest either a need for assistance in

ambulation, or am inability to feed and dress

himself or herself. 20 C.F.R. Part 404,

Subpart P, App. 1, Part B, § 101.C3 (Jt. App.

at 209-10). Certainly, an infant or young

child cannot be tested in either of these

areas. Similarly, Listings that require IQ

tests or measurements of interference with

communication, see, e.g., 20 C.F.R. Part 404,

Subpart P, App. 1, Part B, § 111.02, § 111.07

(major motor seizures and cerebral palsy, re-

spectively) (Jt. App. at 229, 230) are diffi-

cult, if not impossible, for infants or very

young children to meet because such children

cannot realistically be tested in these areas.

Thus, these children will be deemed ineligible

for SsI.?

Second, the Listings completely omit cer-

tain childhood impairments, such as narcolepsy

and other sleep disorders, spina bifida,

Tourette Syndrome, Down's Syndrome, and

Prader-Willi Syndrome. 8 See Marcus, 696

F. Supp. at 381. A child who has one of these

v< In at least one Listing -- that for

central visual acuity -- the Secretary

has recognized that the Listing's test is

inappropriate for children under six

months of age and, in fact, has

prohibited the test from being applied to

such children. However, the Secretary

has not provided any alternative method

by whicn a young child can meet that

Listing. See 20 C.F.R. Part 404, Subpart

P, App. 1, Part B, § 102.00A, § 102.02

(Jt. App. at 210-11).

8. Tourette Syndrome is characterized by

motor incoordination, involuntary word

repetition, and involuntary utterance of

vulgar or obscene words. Down's Syndrome

is a chromosomal disorder that results in

mental retardation and a constellation of

physical anomalies. Prader-Willi

Syndrome is a congenital syndrome

characterized by short stature, mental

retardation, excessive eating, marked

(Footnote continued)

impairments will be denied benefits unless the

child's impairment can somehow be made to fit

within an existing Listing.

In addition, many of the adult Listings

(which are to be used in the absence of an

analogous Listing for children, see 20 C.F.R.

§ 416.925(b)(1)) are incapable of being ap-

plied to children. For example, the adult

Listing for obesity contains height and weight

charts beginning at sixty inches tall for men

and fifty-six inches tall for women. 20

C.F.R. Part 404, Subpart P, App. 1, Part A,

§ 10.10 (Jt. App. at 169-73). Because there

is neither a corresponding children's Listing

for obesity nor a corresponding table for a

child's lower height (noc to mention a child's

different build), a young child who is obese

(Footnote continued)

obesity, and sexual infantilism.

Stedman's Medical Dictionary (5th

1982).

ow

Q |®

* @

will simply be denied benefits. See also 20

C.F.R. Part 404, Subpart P, App. 1, Part A,

§ 8.00 (all skin disorders) (Jt. App. at

166-67); § 11.09 (multiple sclerosis) (Jt.

App. at 178); § 11.13 (muscular dystrophy)

c?

(J App. at 178) (see discussion of the case

of Jason E., infra at 44-46); § 11.16 (perni-

cious anemia) (Jt. App. at 179).

2

An Evaluation Of The Functional

Capacity Of Child Claimants Is

Essential.

The inherent inadequacies of the Listings

can be remedied, as they are for adults, by

emptoying an evaluation of the child's func-

tional impairment. See Yuckert, 482 U.S. at

146 (Social Security Act requires a "function-

al approach to determining the effects of med-

ical impairments"); see also 42 U.S.C.

§ 1382c(a)(3)(G) (emphasis added) ("the Secre-

tary shall comsider the combined effect of all

the individual's impairments").

At the outset of the SSI program for

children, the Secretary recognized the impor-

.

*

o26-

tance of assessments based on functional fac-

tors, rather than on Listings alone. He em-

phasized that “disability in children must be

defined in terms of the primary activity in

which they engage, namely growth and develop-

ment, the process of maturation,” and that

"(dlescriptions of a child's activities, be-

havioral adjustment, and school achievement

[are] important in determining the severity of

the impairment.” SSA Disabil ty Insurance

Letter No. III-l1l (Jt. App. at 90-91).

Nevertheless, as explained in Fox and

Greaney's -ecent report on disabled children's

access to SSI, the absence of regulations per-

mitting the Social Security Administration to

assess a child claimant's functional capacity

has resulted in the umavailability of SSI

benefits to many disabled children:

The majority of our expert reviewers

indicated their concern about the

Listing’s lack of attention to func-

tional impairment. They stressed

that the same medically defined con-

dition may affect different children

in different ways: for some chil-

dren, a less serious condition may

render them functionally incapacit-

ated. ... The impact of a given

impairment on a child's ability to

Carry out daily activities is dic-

tated by a variety of factors.

These include age of onset, emo-

tional and cognitive capacities, and

family support and resources -- none

of which are addressed in the dis-

ability criteria for children. Fox

& Greaney, at 60-61.

The Secretary has an obligation to

develop a standard by which to measure the

ability of a child to function. That measure-

ment should include, at minimum, a determi-

nation of whether the child can carry out

daily activities on an age-appropriate level.

Such a functional analysis, as anticipated by

the Court in Zebley, would be based upon

medical findings. An assessment of functional

capacity would also take into account, inter

alia, subjective factors and combinations of

impairments and, thus, would cure the existing

inherent defects of the Listings-based ap-

proach currently used to assess disability in

child claimants.

While the Secretary has expressed con-

cerns about the feasibility of engaging in an

individualized assessment of a child's func-

tioning, those concerns are ill-founded, if

not disingenuous. First, it is the Secre-

tary's statutory responsibility to determine

disability. Even if such individualized,

functional assessments were more difficult to

make, this factor would not relieve him of

that obligation. Morecver, the agency has had

ample experience in engaging in the precise

type of individualized assessment required. ?

In addition, the Secretary has recently

proposed new Listings for Mental Disorders in

9. Under the Title II Child's Disability

Insurance Benefit Program, 42 U.S.C.

§ 402(d), the Secretary applies the full

two-tiered evaluation process to assess

disability in a dependent person who is

Claiming benefits based on an impairment

that was disabling before the age of 22.

See Allegra v. Bowen, 670 F. Supp. 465

(E.D.N.¥. 1987); Hawkins v. Heckler, 631

F. Supp. 711 (D.N.J. 1985). Indeed, the

Secretary has previously acknowledged

that experience drawn from the Title II

Disability Program would assist in the

implementation of the SSI program. See

SSA Disability Insurance Letter No.

III-1l (Jt. App. at 89).

Children, see 54 Fed. Reg. 33238 (Aucust 14,

1989), which, in fact, incorporate some of the

very same functional eriterie that the Secre-

tary has previously asserted are either irrel-

evant to a determination of whether a child is

disabled or overly-cumbersome to apply. Com-

pare Sullivan v. Zebley, Brief for the Peti-

tioner, at 40 (citations omitted) ("devel op»-

mental needs - e.g., counseling, special edu-

cation, training, rehabilitation, and guid-

ance - are not considered as such, ‘because

they are not within the scope of the law'")

with 54 Fed. Reg. at 33243 ("school records

are a rich source of data;" “appropriate his-

torical, social, medical and other information

must be reviewed").

At the very least, the Secretary's inclu-

Sion of functional evidence in the proposed

Listings for mental disorders indicates a fun-

damental inconsistency in his position. There

is certainly no rational reason why children

with mental disorders should receive a func-

tional assessment of their disability while

children with other impairments do not. It is

no less feasible to analyze the functional

limitations of children with physical, rather

than mental, disorders. Thus, an evaluation

of the functional Capacity of child claimants

not only is statutorily mandated, but also, by

the Secretary's own admission, is administra-

tively feasible. 19

10. It should also be noted that, even though

some of the proposed regulations may

apply a function-based evaluation, that

analysis is still much more restrictive

than that applied to adults. Many of the

proposed Listings require that functional

limitations be evaluated solely within

the parameters of each individual

Listing. Thus, once a child has proven

that he or she meets the medical criteria

for one of the impairments, he or she

must also demonstrate that that

impairment results in functional

limitations. See, e.g., Proposed Listing

112.00, 54 Fed. Reg. at 33241 ("The

functional restrictions ... must be the

result of the mental disorder which is

manifested in the clinical findings").

See also Proposed Listings 112.02,

112.03, 112.04, 112.06, 112.07 and

112.09, 54 Fed. Reg. at 33243-33245.

D. The Secretary Has Failed To

Devise Any Method To Assess

Adequately The Functional

Capacity of Child Claimants.

None of the means devised by the Secre-

tary provides a satisfactory method by which

to ensure that there is an individual analysis

of the ability of disabled children to func-

tion in an age-appropriate manner. In the

past, the Secretary expressly acknowledged

that the Listings are underinclusive as ap-

plied to children, stressing that:

Not all children's impairments will

lend themselves to formal codifica-

tion. We are aware that a signi-

ficant number of children are im-

paired in their intellectual, so-

cial, and emotional development pro-

gression by problems of learning

and/or behavior. These conditions

may be ill-defined and imperfectly

understood. 1974 Disability

Insurance Letter No. III-1ll, Supple-

ment 1 (Jt. App. at 97-98).

Although a few of the Listings define

impairments in functional terms, a point the

Secretary now understandably emphasizes, }} the

Listings generally rely on specific diagnostic

criteria that exclude clinically observable

functional indicia that the medical profession

commonly includes in its assessments cf dis-

abilities. See 42 Fed. Reg. 14705 (1977)

(childhood Listings “interpret[] severity in

medical rather than functional terms.").

Moreover, the Secretary expressly prohib-

its the decisionmaker from taking the child

claimant's level of functional limitation into

account in determining whether the child's

impairment “meets” a Listing. As the Secre-

tary has directed:

The “level of severity” of impair-

ments in the listing is not defined

ll. The Secretary, however, conceded in his

certiorari petition that only “some of

the Secretary's listings in Part B spe-

cifically call for a general assessment

of a child's functional capacity.”

Newman v. Zebley, Petition for a Writ of

Certiorari to the United States Court of

Appeals for the Third Circuit, at 12

(emphasis added).

in terms of the residual functional

capacity (RFC) of the individual.

When certain functional limitations

are specified for a listed impair-

ment, they relate only to that de-

gree of dysfunction for that partic-

ular listing section and only to the

specific function identified. SSA,

Program Operations Manual System

(POMS), § DI 24505.015(B) (emphasis

in original) (Jt. App. at 248).

As a so-called alternative to meeting a

li.-ted impairment, an SSI applicant may estab-

lish that his or her impaizsment “equals” a

listed impairment. 20 C.F.R. § 416.920(d);

§ 416.924(b). Because the Secretary's defini-

tion of equivalence is extremely narrow, the

equivalence standard, like the Listings them-

selves, is incapable of identifying many chil-

dren whose impairments are of ccmparable se-

verity to those of adults.

Equivalence to a listed impairment is

based strictly on a very narrow notion of me-i-

ical findings that is void of functional

Criteria. 20 C.F.R. § 416.926(b). Indeed,

Since 1980 the Secretary has expressly pro-

scribed consideration of the functional conse-

f-

quences of impairments in determining equiva-

-~34-

lence. See Social Security Ruling (SSR) 83-19

("[t]he functional consequences of the impair-

ments, (i.e, RFC), irrespective of their na-

ture or extent, cannot justify a determination

of equivalence") (emphasis in Original) (Jt.

App. at 240); see also Zebley, 855 F.2d at 74.

In addition, the equivalence Standard does not

allow for Consideration of the combined effect

Of impairments. See SSR 83-19 ("[tlhe mere

App. at 240). }-

12. Amici are of the opinion that the Secre-

tary's Children's disability regulations

Violate the Provisions of the Disability

Benefits Reform Act of 1984, P.L. 98-460,

98 Stat. 1794, which requires that the

Secretary consider the "combined effect"

Of all of a Claimant's impairmer.c, 42

U.S.C. § 1382¢(a)(3)(G), aS well as "all

evidence" in the Claimant's case record,

42 U.S.C. § 1382c(a)(3)(H). We agree

E. Numerous Severely Disabled

Children Have Been And Will

Continue To Be Denied SSI

Benefits Due To The Secre-

tary's Refusal To Assess

Their Functional Capacity. _

The Secretary's process for determining

disability in children works significant hard-

sips on impoverished children with disabili-

ties who must often go without needed medical

and social services when their SSI applica-

tions are denied.+% The following examples

are representative of children in Pennsylvania

whose SSI claims have been rejected by the

Secretary based upon his conclusion that such

children are not disabled within the meaning

of the statute.

13. Under Pennsylvania law, eligibility for

Medicaid is tied to SSI eligibility. See

55 Pa. Code § 297 4(w)(4). Thus, the

implications of the SSI determination are

far-reaching and the financial conse-

quences of being found ineligible for SSI

can be devastating.

-- Christine T. was five years old at

the time she was found not eligible for SSI.

Christine has been diagnosed as severely hy-

peractive with a guarded prognosis. She also

has an attention deficit disorder, an expres-

sive speech delay, delayed fine motor-adaptive

skills, and a very short attention span. Al-

though placed on an unusually high dose of

medication, Christine continues to manifest

unmanageable, disruptive, impulsive, and hy-

peractive behavior. For example, during the

administrative hearing, Christine left her

chair, climbed underneath an examination ta-

ble, constantly moved abovt the room, ana even

triggered a fire alarm outside of the room.

The Administrative Law Judge ("ALJ") de-

termined that Christine has a behavioral prob-

lem, a behavioral communication disorder, and

is extremely hyperactive. However, because

she does not have either a specific psychiat-

ric disorder or an organic disability, her

impairments were deemed not to meet or equal

any of the Listings. The ALJ also noted that

an impartial medical advisor at the adminis-

trative hearing testified that Christine's

disorder fell “between the cracks" of the

Listings, and that Social Security Administra-

tion policy precluded him from considering any

criteria other than those actually detailed in

the Listings.

-- Michael R. was six years old at the

time he was denied SSI benefits. Michael has

had a life-long history of severe neurological

and emotional impairments. Michael has been

diagnosed as having, among other impairments,

Organic brain syndrome, a seizure disorder, a

learning disability, attention deficit dis-

order/hyperactivity, multiple personality dis-

order, mental retardation, and impulse control

disorder.

Michael's impairments have profoundly and

adversely affected his education; indeed, his

teachers have noted that his temper tantrums,

impulsive and explosive behavior, and ina-

bility to follow directions are incompatible

with an educational setting. Furthermore,

-38-

Michael has been diagnosed as functioning at

the level of a tnree to four year old and,

consistent with this diagnosis, has repeatedly

demonstrated non-age-appropriate behaviors.

For example, Michael is not capable of dress-

ing himself or brushing his teeth and does not

interact with children his own age. Addition-

ally, Michael has devastating psychological

problems that manifest themselves in ways

ranging from fighting with others to hearing

voices telling him to harm himself and others

to overtly suicidal behavior such as climbing

out on a window ledge, tying a sheet around

his neck, and trying to cut himself with a

knife. In fact, at one point Michael's behav-

ior became so uncontrollable that he was hos-

pitalized at the Eastern Pennsylvania Psychi-

atric Institute.

The ALJ concluded that Michael's impair-

ments, "while severe", did not meet or equal a

Listing. The ALJ determined that although

Michael had an IQ of 64, he had no other phys-

ical or mental impairment sufficient to meet

or equal the Listing for mental retardation.

-- Dean 0. was two years old at the time

he was found ineligible for SSI benefits.

Dean has a breathing problem, spina bifida,

conjunctivitis of the eyes, digestive prob-

lems, chronic nonspecific diarrhea, a learning

disability, anemia, hyperactivity, and devel-

opmental delay. Additionally, Dean suffers

from a sensory integrative dysfunction which

includes delayed speech, clumsiness, tactile

defensiveness, and distractibility. Dean's

breathing problem, which he has had since

birth, has included one episode of apnea, for

which a monitor was prescribed. In addition,

Dean has been hospitalized on numerous occa~

sions, once at six weeks of age for pneumonia,

and on several other occasions for episodes of

dehydration accompanied by vomiting and diar-

rhea. Furthermore, Dean has been described as

a destructive child who bites himself and goes

after knives. The ALJ concluded that, while

Dean has physical problems, as well as mental

and motor delay, those impairments did not

meet or equal a Listing.

-- Henry R. was eleven years old at the

time he was found ineligible for SSI benefits.

Henry has oppositional disorder, attention

deficit disorder, visual-motor and perceptual

dysfunctions, and hyperactivity. His visual-

motor coordination is so poor that, at almost

eleven years of age, his ability to draw

geometrical designs was at the level of a five

year old. Henry's IQ test scores have varied

between 49 and 78. He has marked difficulties

im maintaining social functioning, deficien-

cies in concentration, extremely low frustra-

tion tolerance, and is emotionally withdrawn.

He is an intentionally provocative, passive-

aggressive, angry, and highly distractible

child, who gets into fights with his peers and

siblings.

As a result of the variation in Henry's

IQ scores, the ALJ concluded that Henry did

not meet the listed impairment for mental

retardation. In particular, the ALJ deter-

-4l-

mined that tne lower IQ scores did not accu-

rately reflect Henry's IQ because Henry's be-

havioral problems, such as his passive/

aggressive attitude, poor attention, and

nervousness, interfered with the tsting.

However, the ALJ discounted evidence that Hen-

ry's behavioral problems imposed an additional

limitation on him that would meet or equal a

Listing and concluded that Henry's lack of

attention was selective and voluntary and that

his nervousness could be treated with medica-

tion.

-- Shawn K. was ten years oid when he

was found ineligible for SSI benefits. Shawn

is a child with borderline intelligence,

attention deficit disorder, hyperactivity,

psycholinguistic deficic, delay in visual-

motor coordination, and chronic enuresis

(bedwetting). Shawn's IQ scores range from a

low of 70 to a high of 932. Shawn has been

placed in a special education classroom, at-

tends speech therapy classes, and requires

intensive instruction in fine motor skills.

Shawn's teachers report that his behavior in

the special education classroom is unsatis-

factory, and that he is disruptive and inat-

tentive. Shawn needs much one-on-one supervi-

sion due to his short attention and memory

spans and his problems following directions.

Shawn's hyperactivity has not been controlled

by medication; he is constantly running and

jumping, cannot sit still, and is extremely

impulsive. Furthermore, Shawn is fascinated

by fire and has been known to set fires. For

example, when Shawn was playing with a fire

truck in his bedroom, he decided that he

needed a fire, and so he set one, destroying

all of his belongings.

The ALJ determined that Shawn did not

meet the Listing for mental retardation be-

cause his IQ of 70 was one point above that

required by those Listings. Although a Medi-

cal Advisor had testified that the one point

differential was neither meaningful nor sig-

nificant, and that the only reason Shawn would

not meet the Listing was due to a technicali-

ty, the ALJ considered himself bound by the

letter of the Listings. Therefore, the ALJ

did not even consider Shawn's attention defi-

cit disorder, hyperactivity, poor attention

span, bedwetting, or other problems.

-- Jason E. was five years old when he

was found ineligible for SSI benefits. Jason

has muscular dystrophy, a progressively de-

generative and eventually fatal muscular dis-

ease. At the time he was denied benefits,

Jason's impairment manifested itself through a

speech disturbance, moderate muscle weakness,

gait abnormality, decreased muscle tone, atro-

phy of the proximal muscles, and hypertrophy.

Jason's eye muscles and mouth and vocal chord

muscles were also affected by his impairment.

Furthermore, Jason experienced difficulty in

walking because of cramps and weakness in his

legs. At the time he was denied benefits,

Jason could not climb stairs, run, pedal a

bicycle, or walk in excess of a city block,

and he frequently fell. Moreover, Jason could

not control a pencil or endure a full day in

kindergarten due to exhaustion.

There is no children's Listing for muscu-

lar dystrophy. The ALJ therefore applied the

Listing for deformity or musculoskeletal dis-

ease, which requires both deformity or

musculoskeletal disease and one of the follow-

ing: (a) “walking is markedly reduced in

speed or distance despite orthotic or pros-

thetic devices"; (b) “ambulation is possible

only with obligatory bilateral upper limb as-

sistance (e.g., with walker, crutches)"; or

(c) “inability to perform age-related personal

self-care activities involving feeding, dress-

ing, and personal hygiene." 20 C.F.R. Part

404, Subpart P, App. 1, Part B, § 101.03 (Jt.

App. at 209). Applying these criteria to Ja-

“gon, the ALJ determined that Jason could walk

in an unassisted fashion for at least short

distances, thereby failing to meet the re-

quirements of § 101.03(A); that he did not yet

require any assistive devices for ambulation

(although it was clear that he would require

them), thereby failing to meet the require-

ments of § 101.03(B); and that he was basic-

ally independent in self-care activities,

thereby failing to meet the requirements of

§ 101.03(C).

-- Jason S. was six months old when he

was initially found not eligible for SSI, and

a year old when his second SSI application was

denied. Jason has spina bifida, a birth de-

fect affecting the lower portion of his spine,

which impairs his ability to walk, as well as

his bowel and bladder functions. Additional-

ly, Jason's vocal chords are paralyzed, which

creates overwhelming problems for him in swal-

lowing, breathing, and speaking. He also has

Arnold Chiari malformation, a displacement of

the hind brain into his spinal canal.

-- Brandi R., who is now twelve years

old, has Tourette Syndrome, a neurological

movement disorder, was also denied SSI bene-

fits. As a result of her impairment, Brandi

experiences motor control problems, a severe

attention deficit disorder, and behavioral

disorders.

These and other exclusions of seriously

disabled children from benefits of the SSI

program are inevitable under the current regu-

lations. The Secretary's truncated, Listings-

confined approach by definition prevents a

substantial number of low-income children with

Significant functional disabilities from

receiving the benefits that Congress intended

them to have.

CONCLUSION

The single-tiered, Listings-confined

process that the Secretary utilizes to deter-

mine whether a low-income child is disabled

for purposes of eligibility for SSI benefits

violates the mandate of Congress. The Secre-

tary’s regulations deny children the same op-

portunity afforded adults to demonstrate the

disabling functional effects of their

-47- |

impairments. Accordingly, Amici Curiae re-

spectfully urge the Court to affirm the order

of the court of appeals.

Respectfully submitted,

net F. totland*

lene W. Shane

Nancy Winkelman

Schnader, Harrison,

Segal & Lewis Robin Resnick

Suite 3600, 2100 Lewis Tower

Philadelphia, PA 225 South 15th St.

19103 Philadelphia, PA

(218) 751-2342 19102

(215) 735-6873

Attorneys for

Amici Curiae

Of Counsel * Counsel of Record

Dated: September 11, 1989