233$... . ; _ 2 3.5.3.3.}...

v 4 .71 J x
72.

. . xflafifi. a
. sw..y&.2%..$ .

. 5.92.154. y
:5. $33“. . um»,
h

M . . . , , , . , . , . .. . ......A.,... h . u. .
. . . . . _ w. .m. . xflg3
. . . . . . . . . . “1...?- a"...
.L.) . , .. . . . . . . . . . . . “.2. , .
all: : . . . , . . . , . ‘ .. . . . . . . .

r:-
. * . . g:
2.. .wa a
. .r uflfimué
AME... , 15.1.9..."

f1; . . :-

..4.. .- .
1.1....- 1

3.553:

M ENE... . .

4g

34.. 3..
~ 1.2.... x. 1
fr) 0.". u
can.“ . .3.
37.x

in
, n

. .: l

; {fizfim‘wpma
31%an

1 5.1L

n7.

 

c... A
a. $241
.1. t:

 

LE .0. . .
. 9“

.r

~
\«1

ti: .\~I;

1.1.1.

'3 :h‘t. ‘l!

s .. x .I n ..
.Ixafii 0......er 31.1: wall.
,7 . .u.‘ a . .

 

WES”;

ZOOI

This is to certify that the
thesis entitled
PEDIATRIC MENTAL ILLNESS: CORPORATIZED
MEDICINE AND VULNERABLE POPULATIONS

presented by

Ellen Paige Conser

has been accepted towards fulfillment
of the requirements for

M.A. degree in Health and Humanities

 

Major professor

Date 57/02 31/00

0-7639 MS U is an Affirmative Action/Equal Opportunity Institution

 

 

LIBRARY
Michigan State
University

 

 

 

PLACE IN RETURN BOX to remove this checkout from your record.
TO AVOID FINES return on or before date due.
MAY BE RECALLED with earlier due date if requested.

 

DATE DUE DATE DUE DATE DUE

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

11m comm."

PEDIATRIC MENTAL ILLNESS: CORPORATIZED MEDICINE AND
VULNERABLE POPULATIONS

By

Ellen Paige Conser

A THESIS
Submitted to
Michigan State University
in partial fulfillment of the requirements
for the degree of
MASTER OF ARTS
Department of Interdisciplinary Program in Health and Humanities

2000

ABSTRACT

PEDIATRIC MENTAL ILLNESS: CORPORATIZED MEDICINE AND
VULNERABLE POPULATION S

By

Ellen Paige Conser

Perspectives from bioethics, history of medicine, and health economics are
applied to demonstrate the vulnerable status of mentally disturbed children. Moral
philosophy and cultural history lay a foundation for a rights-basedapproach and social
duty toward vulnerable populations. In the current context of scarce resources,
corporatized healthcare, and emotionally-laden political discourse about just medical
resource allocation, analysis of intergenerational obligations is pertinent. Principles from
health economics are applied to show financial incentives’ power within managed care,
the consequences of which adversely impact not only individual child access to
appropriate, quality care, but decisionmaking about whether to implement prevention
programs potentially benefiting thousands of enrollees. The latter is particularly
unfortunate, in light of promising findings about mental illness prevention programs’
efficacy. Reform recommendations include strengthened roles for the federal government
and schools, increased support for prevention and early intervention, adoption of a

biopsychosocial perspective, and societal acceptance of allocative justice.

Copyright by
ELLEN PAIGE CONSER
2000

ACKNOWLEDGMENTS

My deepest appreciation extends to the following individuals, without whose
unflagging assistance and encouragement this goal would never have been achieved: Dr.

Mike Woolson, Dr. Gerald Osborn, Dr. Kurt Ackerman, and Dr. John Goddeeris.

iv

TABLE OF CONTENTS

LIST OF ABBREVIATIONS ...................................................................... vi
INTRODUCTION .................................................................................... 1
CHAPTER 1
FOUNDATIONS OF CORPORATIZED MEDICINE; PEDIATRIC MENTAL
HEALTH CARE; AND PREVENTION/EARLY INTERVENTION ....................... 21
Project Head Start .......................................................................... 69
Elmira (NY) Prenatal/Early Infancy Project (Elmira PEIP) .......................... 70
Primary Mental Health Project (PMHP) ................................................ 72
CHAPTER 2
SOCIOECONOMIC AND DEMOGRAPHIC TRENDS; INTERGENERATIONAL
RESOURCE ALLOCATION; VALUE J UDGMENTS IN ECONOMICS ................. 86
Intergenerational Resource Allocation: Philosophical Theories ..................... 88
Intergenerational Resource Allocation: Historical Trends ............................ 99
Intergenerational Resource Allocation: Economics Tools .......................... 109
CHAPTER 3
CONCLUSIONS ................................................................................... l 19
RECOMMENDATIONS ........................................................................ 123
REFERENCES .................................................................................... 128

LIST OF ABBREVIATIONS

fl: Aid to Families with Dependent Children. Federal welfare legislation passed in
1935 (Woolston, 1991, p. 890).

C_A_S_S_E: Child and Adolescent Service System Program. “[A] comprehensive approach to
coordinating and delivering a far-reaching array of services from multiple
agencies” (Satcher, 1999, p. 188). Widely-acclaimed, Congressionally-funded
(1984) treatment model advocating an interagency, coordinated, individualized,
culturally competent continuum of care, in which families are to be involved in
treatment planning, and which favors less-restrictive treatment environments over
inpatient placements where appropriate (see Burns & Hoagwood, 1998, p. 688;
Knitzer, 1988, p. 64; Pumariega, 1997, p. 68;).

QB_A: cost-benefit analysis

9%: cost-effectiveness analysis

_C_M_H_(;s_: community mental health centers. President John F. Kennedy signed the CMHC
Act in 1963 (see Christ, 1991, for more details).

Em: Early Periodic Screening, Diagnosis, and Treatment Program. Federal legislation
passed in 1967 mandating screening for a wide range of physical and mental
illnesses.

ES: fee-for-service

GNP: Gross National Product

MCOs: managed care organizations

 

MH/SA: mental health and/or substance abuse

 

vi

MMHCs: managed mental health companies

PP_O§: prefen'ed provider organizations

QAL_Y§: Quality-adjusted life years

%: school-based health centers

_S__E_Q: serious emotional disturbance. In the literature, ‘severe’ alternates with ‘serious;’ ‘
‘disorder,’ with ‘disturbance.’ Other variations abound, e.g., “behaviorally
disordered, behaviorally handicapped” (Wassef, et al., 1998, p. 765). Psychiatric
dictionaries and the DSM-IV fail to offer an ‘official’ interpretation of this
acronym, although computerized health library database searching (e.g.,
PSYCINFO) yields best results with ‘serious emotional disturbance.’ Some child
psychiatry texts describe SED as ‘serious emotional disturbance’ (e.g., see

Wassef, et al., 1998, p. 764; Silver, 1988, p. 40).

vii

Introduction1

My interest in mental illness and the US. mental health care system preceded my
entrance into MSU’s Interdisciplinary Program in Health & Humanities (IPHH).
Coursework in IPHH lent conceptual structure to this passionate interest. Particularly
intriguing aspects of mental illness include its lingering conceptual ambiguity, stigma,
and power to wreak immense suffering. Mental illness lends itself well to analysis in the
interdisciplinary context because of its multisector etiology, treatment, and social impact.
Pediatric mental illness lends itself particularly well for these reasons, plus the fact that
the most exciting emergent research findings about treatment, prevention, and early
intervention indicate that providing a caring environment, not just medical care, is key.
Other influences on my interest in mental health care include employment on a
psychology research project. The current pertinence of the topics of health promotion for
children, and intergenerational justice in health care resource allocation, was brought
home in April, 2000, when I had the opportunity to attend a lecture by Joycelyn Elders,
M.D. (Elders, 2000). Among her points were that 1) schools are the logical place for
promoting children’s health and preventing illness, and 2) there is a marked discrepancy
between the number of children enrolled in Medicaid, and the percentage of Medicaid
funds spent on children (versus the elderly). I had already written about these issues in
the thesis prior to attending her lecture, so was excited to hear them reinforced by our ex-

Surgeon General.

 

1 I particularly wish to thank Dr. Gerald Osborn for the advice and ideas he provided for
this chapter, during a conversation January 20, 2000).

One contention in this thesis is that children with mental illnesses, living in the
current era of uncertain access to quality medical care, represent a vulnerable group
worthy of societal protection. The social tradition of heightened concern towards our
most weak and vulnerable citizens has ancient roots. In the New Testament, Jesus Christ
said, “[W]henever you refused to help one of these least important ones, you refused to
help me” (Anonymous, 1966, p. 66). Political and religious leaders have drawn from this
Biblical passage in making the following comments about society’s responsibility to the
weakest and most vulnerable citizens. Deriding a bill proposing welfare cuts as
potentially harmful to children, Daniel Patrick Moynihan said, “the moral measure of our
society is how we treat ‘the least among us”’” (Moynihan, 1996, p. C7). The National
Conference of Catholic Bishops (NCCB) joined Moynihan in urging the President to veto
the bill, and reaffirmed this position in a message to Congress, stating, “We believe the
moral measure of our society is how we care for ‘the least of these.’ We believe the poor
and vulnerable have a priority claim on our consciences and our common resources.
Decisions about social security and wages, budget priorities and surpluses, global
economic and foreign policy ought to put the poor and vulnerable first” (Anonymous,
1999, p. 1). Elsewhere it asserted, “the nation should put poor children and families first.
We believe the moral measure of our society is how our weakest members are faring”
(Keeler, 1995, p. I).

We will see in following chapters that the history of mental health care for
children has been influenced by political and economic factors, as well as
medical/scientific factors. Interestingly, the very definition of serious emotional

disturbance (SED) is political and legal in its origins; moreover, the definition continues

to defy consensus (Wassef, Morgan, Ramirez, & Collins, 1998, p. 764). Federal
definitions were formulated in the 19703, when legislation was passed to guarantee
education for all children; SED was thus conceptualized and categorized as a handicap,
potentially hindering learning (Wassef et al., 1998, p. 764). In 1970, the Joint
Commission on Mental Health of Children offered a rather vague definition; in 1980, a
National Institute for Mental Health (NIMH) task force offered a more detailed
definition, focusing on SED’s disabling aspects and the need to address individual service
needs (Silver, 1988, p. 41). A later (1990s) definition, while still influenced by
nonmedical factors, is more explicit than 19705 definitions:

“...children and youth with the most severe disturbances of behavior and
emotion...[C]ore components of SED [include]: persistent problems of
behavioral self—control; poor family and peer relationships; and
maladaptation in multiple areas of life (e.g., schooling, functional living
skills). Practically, characteristics often associated with SED may include
emotional instability, difficulty controlling anger, expressed belittlement
of self, underachievement, problems of attention and impulsivity, social
and emotional immaturity, poor or limited social skills, poor coping and
adaptation skills, and irrational and erratic thinking processes. An erratic
school history, possibly including repeated placements in multiple
residential living centers, may also be associated with SED” (Wassef et
al., 1998, p. 764).

One text about pediatric SED offers a more accessible, practical definition:

“children and youth who have severe illnesses (usually psychoses or
conduct disorders), which are of long duration (usually longer than one
year), which cause such great disability that further psychological
development is severely distorted or retarded, which require treatment by
professionals of several disciplines, and which can tear an otherwise
adequate family apart” (Looney, 1998, p. 238)

Diagnoses of SEDs made in schools using federal criteria may diverge from

diagnoses made utilizing well-regarded diagnostic tools, such as the Diagnostic and

 

cans:
[ht‘lr :
idiot

35500:

$133“—

Statistical Manual of Mental Disorders (DSM) (Wassef et al., 1998, p. 765). More
disturbing, the process through which children are diagnosed varies from state to state,
even between school districts. (Wassef et al., 1998, p. 765).This lack of consensus
exhibited in the definition of SED has hindered research, assessment of prevalence rates,
and collection of other epidemiologic data (Silver, 1988, p. 42; Wassef et al., 1998, p.
765). It also has rendered the plight of this vulnerable group less understandable, and less
visible, to Americans generally, a handicap in attracting political and fiscal support.

Nine to thirteen percent of all US. children suffer from serious emotional
disturbances (Satcher, 1999, p. 179). The urgency of better meeting the needs of children
with SED and mental illnesses generally is exemplified by the following finding of the
first Surgeon General’s Report on Mental Health, that “most children in need of mental
health services do not get them...a high proportion [70%] of young people with a
diagnosable mental disorder do not receive any mental health services at all” (Satcher,
l999,p.l80)

Mental disorder among children includes “serious deviations from expected
cognitive, social, and emotional development,” and “symptoms and behaviors [that]
cause great distress and may lead to dysfunction of children, their family, and others in
their social environment” (Satcher, 1999, p. 123). The US. Government provides the
following definitions, while acknowledging the subjectivity and historical fluidity
associated with defining these concepts.

“’[M]ental health’ and ‘mental illness’ are not polar opposites but may be

thought of as points on a continuum. Mental health is a state of successful

performance of mental function, resulting in productive activities,
fulfilling relationships with other people, and the ability to adapt to change

and to cope with adversity. Mental health is indispensable to personal
well-being, family and interpersonal relationships, and contribution to

community or society...Mental illness is the term that refers collectively
to all diagnosable mental disorders. Mental disorders are health conditions
that are characterized by alterations in thinking, mood, or behavior (or
some combination thereof) associated with distress and/or impaired
functioning...Alterations in thinking, mood, or behavior contribute to a
host of problems-patient distress, impaired functioning, or heightened risk
of death, pain, disability, or loss of freedom... ‘[M]ental health problems’
[refer to] signs and symptoms of insufficient intensity or duration to meet
the criteria for any mental disorder...[E]arly intervention is needed to
address a mental health problem before it becomes a potentially life-
threatening disorder” (Satcher, 1999, pp. 4-5; italics the author’s).

When we examine mental health care, it is important to understand the concept of
‘service sectors.’ The phenomena of ‘service sectors’ is exemplified by the following
quote:

“[P]sychopathology in childhood arises from the complex, multilayered

interactions of specific characteristics of the child (including biological,

psychological, and genetic factors), his or her environment (including
parent, sibling, and family relations, peer and neighborhood factors,

school and community factors, and the larger socio-cultural context), and

the specific manner in which these factors interact with and shape each

other over the course of development” (Satcher, 1999, p. 127).

The very structure of the US. mental health care system, its “complex,”
“multifaceted,” and “hybrid” nature, contributes to its problems, especially problems in
gaining access to needed services (Satcher, 1999, p. 14). “[T]he U.S. mental health
system...[comprises] the public and private sectors, general health and specialty mental
health providers, and social services, housing, criminal justice, and educational agencies.
These agencies do not always function in a coordinated manner” (Satcher, 1999, p. 14).
“As a result, care may become organizationally fragmented, creating barriers to access.

The system is also financed from many funding streams, adding to the complexity, given

sometimes competing incentives between funding sources” (Satcher, 1999, p. 20).

Specific to children is the following observation:

“Children needing services are identified under the auspices of five

distinct types of service sectors: schools, juvenile justice, child welfare,

general health, and mental health agencies. These agencies are mostly
publicly supported, each with different mandates...Many..arose
historically for another purpose, only to recognize later that mental
disorders cause, contribute to, or are effects of the problem being
addressed. In the past, these sectors operated somewhat autonomously,

with little ongoing interaction...Federal policies and managed care more

recently [have] begun to forge their integration” (Satcher, 1999, p. 184).

Other important concepts include distributive and allocative justice, intergenerational
equity, and rationing versus allocation of resources. These complex concepts will be
defined and explored further in Chapter 2.

The topic of mental illness among children lends itself well to a Master’s thesis
project in medical humanities, for a number of reasons. Pediatric mental illness in
general, and SED in specific, is characterized by its striking multicontextuality with
respect to etiology, clinical presentation, treatment, and societal impact and implications.
Today’s most respected treatment models require the skills of a range of interdisciplinary
providers, serving in a variety of social sectors. This is due to the fact that the complex
challenge that is mental illness is borne not just by mental health providers but by
schools, jails, social services, and the medical sector. An extensive search of the literature
failed to uncover any work applying an interdisciplinary medical humanities analysis to
the challenges posed by children with SED. Specific interdisciplinary tools used in this
thesis include the history of medicine, health care economics, and philosophy of health
care.

Allocative decisions about children’s mental health care are cunently often based

on non-moral and nonmedical considerations, such as power and economic incentives,

 

 

h‘rY‘

it"

\r‘
‘1

instead of moral and clinical considerations, such as beneficence and outcome ‘
optimization. With respect to power, it is illuminating to examine why child advocacy
movements have traditionally been ineffective in rendering major political reform. The
answer seems to lie in their differences from traditional civil rights movements, to be
described further below. The influence of economic incentives on allocative
decisionmaking is examined in Chapter 1.

The next section shows how indicators of socioeconomic status (SES), such as
race/ethnicity, family income, parental educational level, and parental marital status,
influence (1) incidence and (2) recognition of pediatric mental disorders. These indicators
also influence (3) the level of unmet need; (4) access to quality, appropriate care; and (5)
the ability to advocate for that care. Emotionally disturbed children’s historically—
disadvantaged social backgrounds further constrain their already-limited civil rights.

Regarding (1), incidence, Newacheck (1989, p. 875) found that poorer youth, and
those from families whose adults had less education, were significantly more likely to be
disabled, the leading disabling condition being mental illness. Risk factors for pediatric
mental illness include:

“prenatal damage from exposure to alcohol, illegal drugs, and tobacco;

low birth weight; difficult temperament or an inherited predisposition to a

mental disorder; external risk factors such as poverty, deprivation, abuse

and neglect; unsatisfactory relationships; parental mental health disorder;

or exposure to traumatic events [e.g., acts of violence]...Dysfunctional

aspects of family life [that can endanger a child’s mental health include]

severe parental discord, a parent’s psychopathology or criminality,

overcrowding, or large family size” (Satcher, 1999, pp. 129-130).

With respect to (2), recognition, parents or caregivers who are married and

higher-educated are more likely to initiate discussion about children’s problems, despite

the fact that poor caregivers, and those ranking their own mental health low, are more
likely to have a child diagnosed with a psychosocial problem (Horwitz, Leaf, &
Leventhal, 1998, p. 370). Socioeconomic status (SES) influences parental helpseeking
behavior (e.g., Riley et al., 1993, p. 779). “[R]ace and culture...affect the likelihood of
care-seeking behavior” (Kelleher & Starfield, 1990, p. 118).

Black children are “less likely to be recognized as having a psychosocial
problem” (Kelleher, et al., 1997, p. 1112). This may be attributable to communication
barriers between doctor and parent, or stereotypical assumptions on the part of
physicians. “[C]linicians may...view these symptoms as social or community problems.
Racial and ethnic differences between clinicians and patients have previously been
associated with psychiatric misdiagnoses” (Kelleher, et al., 1997, p. 1113); problems
include both over- and under-diagnosis (Pumariega, 1997, p. 70).

Unmet need, (3), is related to

“indicators of economic disadvantage, such as being on public assistance

and not being covered by health insurance; opinions of the parents and

children or adolescents that the latter had poor mental health; parental

psychopathology; poor school grades and parent-reported access barriers

such as...concem that the child would solve the problem unassisted,

would refuse to attend mental health services, or would be hospitalized or

taken away against the parent’s will” (Flisher, et al., 1997, p. 1145).

Even among Medicaid-enrolled children, evidence suggests underuse of services, and
clearly indicates unmet treatment need (Anglin, Naylor, & Kaplan, 1996, p. 325).

Regarding (4), access to appropriate, quality care, questions have been raised

about the appropriateness of applying managed care approaches to the unique needs of

mentally ill children. Specifically, access needs may be insufficiently met in plans

designed with less vulnerable populations in mind.

“[MCOs’]...benefits restrictions [are] based on actuarial
approaches...[and] selectively exclude poorer populations, who are higher
users of services, and augment large pools of relatively healthy, minimally
impaired populations from higher socioeconomic backgrounds, who are
low users...If applied to child mental health services, the usual benefits-
restriction approach in traditional behavioral managed care can potentially
deprive poor, underserved, and more impaired children of timely, effective
intervention and preventive services” (Pumariega, 1997, p. 68).

Socioeconomically disadvantaged families have less access to daily life resources like
transportation (Flisher, et al., 1997, p. 1152). Benefits restriction strategies used by
MCOs to control costs include locating services in out-of-the-way areas, thus
disproportionately impair access to care for disadvantaged children (Frank, Koyanagi, &
McGuire, 1997, p. 117). Deductibles and copayments disproportionately stifle utilization
among the disadvantaged, and “prevent needy children from obtaining services” (Horwitz
& Stein, 1990, p. 585). Experts say “participation in managed care may be deleterious to
our most vulnerable children,” because access to preventive and specialty services has
decreased (Behrman, 1998), even among children covered by Medicaid. The CASSP
principle of culturally-competent care is also at risk, as is the ideal of encouraging
disadvantaged parents to become actively involved.

“[Tlhere is room for concern about how MCOs will address the unique

needs of diverse populations...outcomes for minority groups and low-

income patients [in the Medical Outcomes Study] were worse for managed

care patients than for FFS patients... It is possible that the additional

administrative barriers that must be overcome to obtain specialty services

in MCOs add one more set of hurdles for persons who already feel distant

or foreign in the medical or mental health setting...[P]articular aspects of

MCOs...may be particularly challenging or distasteful to minority

families” (Scholle & Kelleher, 1998, pp. 677-8).

Access barriers reported by parents include “..being unsure where to go for help,”

and barriers related to “economic disadvantage,” including being black (Flisher, et al.,

1997, pp. 1151-52). Race/ethnicity influences utilization. “Significantly lower rates of
services utilization” are documented; there is a “significant relationship between race
and...service needs” (Pumariega, 1997, p. 70). “[T]he great majority of [Medicaid-
enrolled youths with SEDs] are poor, underserved children of ethnic minority
backgrounds” (Pumariega, 1997, p. 67). “[M]inority populations have traditionally been
underserved by mental health, health, and human services, in terms of both the overall
access to services as well as the cultural competence of the services available”
(Pumariega, 1997, p. 67).

Medicaid-enrolled parents face not just financial but social barriers, such as
family fragmentation, single parenthood, child-care limitations, and insufficient social
support (Williams, Diehr, Drucker, & Richardson, 1979, p. 139). The poor are also less
likely to own computers and have access to, or experience using, the Internet, an
increasingly powerful health care resource, both for information and social support
(Sanger, 1999).

The consequences of insufficient access are cost- and care-shifting to other social
service sectors, often unequally impacting various populations for no apparent medical
reason. “Culturally diverse children are underrepresented in mental health institutions and
overrepresented in child welfare and juvenile justice settings and placements compared
with nonminority youth, even when they are equally psychiatrically impaired”
(Pumariega, 1997, p. 70). It is outrageous and irrational that, because of such access
barriers, some children are more likely to receive care only after committing a crime and
being incarcerated (M. Woolson, personal communication, May, 2000).

With respect to (5), being able to effectively advocate for care,

10

“Being able to express needs articulately and persistently sometimes can

make a critical difference in whether particular services and providers are

approved. Unfortunately, parents of children with special needs, especially

those with low and moderate incomes, often lack the skills to serve as their

children’s advocates” (Fox, Wicks, & Newacheck, 1993, p. 552).
Economically disadvantaged populations face a variety of barriers with regard to self-
advocacy, for example, toward even-handed applications of policy to health coverage.
Barriers include less education, and fewer economic resources to contribute to a cause.
What is worrisome is how well disadvantaged populations and others can and should be

H ‘6

expected to undertake the role of being “responsible, proactive,” and “informed” (e.g.,
see Mechanic, 1998, p. 82). Others expect consumers to be “constant[ly] vigilan[t],”
“educated,” and “active” (e.g., see Scholle & Kelleher, 1998, p. 680), precisely at a time
when gaps in economic, educational, health and other indicators of social well-being
between well-off and poorer Americans continue to widen.

After a preliminary choice of the thesis topic, initial research led to a number of
surprises. One was that the concept of children’s rights in the US. is a relatively novel
concept, compared to other industrialized nations, particularly in Europe. European
nations have an established record of respect for children’s rights and welfare. A recent
example is the furor in Great Britain about the legality of corporal punishment (e.g.,
spanking) toward children. Great Britain is one of the last nations in Europe to enact this
sort of protection. Proposed Health Department legislation there crirninalizes certain
forms of corporal punishment (e.g., hitting a child on the head; spanking would still be

allowed) (Miller, 2000, p. A4). While child advocates “welcomed [the proposal] as an

important first step,” and encourage any legislation that “is going to improve the human

11

rights of children,” some advocates say it “falls short of offering [children] full
protection” (Miller, 2000, p. A4).

However, Britain is merely flowing with the European tide: “[s]everal European
countries, including Sweden, Norway and Denmar ” prohibit corporal punishment in
both school and home settings (Miller, 2000, p. A4). Scandinavian countries are
extremely child-friendly environments in this regard. In contrast, the US has no equally-
explicit legislation about the limits of home discipline (Miller, 2000, p. A4).

Britain and other European countries are also noted for their strong contingent of
home nurse visits to both ante- and postpartum mothers, and newborns. “Preventive
interventions [including nurse home visits] have been shown to be effective in reducing
the impact of risk factors for mental disorders and improving social and emotional
development” (Satcher, 1999, pp. 134-136). Specific programs involving home-visiting
nurses are discussed in the prevention section of Chapter 1.

Western European nations’ child friendliness can be explained by exploring
fundamental differences between European and American history and cultural values.
European nations’ rich history of shared collective experiences includes war, invasions,
and serious threats to their governments. In contrast, America has never been invaded by
a foreign power or had an unstable government. Shared collective experiences, for
example London’s Blitz during WWII, can effectively galvanize a community to action.
During the Blitz bombings, children were sent out of the city as a protective measure.
Bombing is indiscriminate; in affecting rich and poor alike, it can motivate a
heterogeneous population to unite to a common cause. These phenomena spawned the

prioritization of community exhibited in European nations today, and is reflected in their

12

policies, such as those concerning children’s rights. In contrast, America’s rugged
individualist citizenry, lacking such collective experiences, prioritizes individual
autonomy. Unfortunately for the cause of achieving a moral healthcare system, this
guarantees a constant tension between individual autonomy and just resource allocation.
Western European nations’ shared values, along with shared collective experience,
combine with ethnic/racial homogeneity to cement a strong prioritization of community.
Unfortunately, America’s increasing heterogeneity may mean the goal of prioritization of
community welfare is moving further out of reach (G. Osborn, personal communication,
May, 2000).

The US. has received criticism for its treatment of children, exemplified by its
failure to ratify the UN. Convention on the Rights of the Child (UNCRC), unlike most
other nations. Rights pertinent to children’s health care covered by the Convention
include the right to a basic standard of medical care (Article 24; see also Wringe, 1996, p.
20), and the right to education in order to reach one’s highest potential (Articles 28-9). As
inferred above, insufficiently treated mental illness can hinder learning. Philosopher
Laurence Houlgate argues that justice requires society to meet the basic needs of
children, saying “[a] need is basic if the harm caused to the person whose need is not met
is serious or substantial” (Houlgate, 1980, p. 111). Because untreated or improperly
treated emotional disorder contributes to “serious or substantial harm” to children (e.g., a
markedly increased risk of lifelong problems, involving nearly all aspects of social and
intellectual development and functioning), access to quality mental health care for

children with mental illness seems clearly a basic need.

13

Arguments as to why America should devote resources to poverty and other
problems amongst children are morally forceful in justifying or supporting a right to a
basic standard of health care, or—-more specifically--fairer and increased resource
allocation toward quality mental health services for the most severely disturbed children.
These arguments include encouraging people to care because children are “intrinsically
valuable” (Richart & Bing, 1989b, p. 4). Alternatively, “[mlore selfishly, the future of
poor children can cut two ways: as a burden which drags the rest of the country down, or
as a vital, energetic force which will help shape the America of the future” (Richart &
Bing, 1989b, p. 4).

Some children’s advocates see government as the natural enforcer of children’s
allocative rights to resources. “The President, Congress, and every federal, state, and
local government entity continuously choose which ventures to support. Government is
the final arbiter of who gets what resources as well as when and how to distribute these
goods and services” (Richart & Bing, 1989b, p. 6). According to this view, parents
alone—even ‘good’ parents—are incapable of raising children to their fullest
developmental potential. Philosopher John Dewey said, “[w]hat the best and wisest
parent wants for his child, that must the community want for all its children” (Richart &
Bing, 1989b, p. 6). Yet still, “in America, parents bear the primary responsibility for
meeting the needs of their own children” (Richart & Bing, 1989b, p. 6). Measured
effectiveness is another reason to support government intervention. “A wealth of
empirical evidence documents that government can ‘transform the nation’s capacity to

improve outcomes for vulnerable children’” (Richart & Bing, 1989b, p. 7).

l4

My own most passionate feelings about this issue are represented by the following

quote:

“[G]ovemment is the most important actor in most aspects of life

important to Americans. The federal government, for example, has made

crucial financial commitments to bail out the City of New York as well as

the Chrysler and Lockheed Corporations. State governments often provide

important tax incentives to companies that wish to relocate. Just as

government intervention in, and support for, the lives of corporations is
appmpriate, it is equally appropriate in the lives of children. Since bold
economic interests enjoy massive government support, the advocate has

every right to ask: Why should the so-called social issues be excluded

from government assistance?” (Richart & Bing, 1989b, p. 6)

The issue of individual rights in general, and children’s rights specifically, is
relevant to the thesis topic, particularly when we think about what sort of duty, if any,
society has to provide some form of universal health benefit. Children’s rights seem to be
a special case, different in many ways from human rights in general. Individual and
children’s rights have historically been conceptualized in widely divergent ways, and the
argument laid forth here represents but one. Human rights, in the context of right to
health care, also lie squarely in the realm of modern academic discourse about moral
dilemmas pertinent to bioethics and medical humanities.

The conceptually opposed notions of (1) children having equal moral status with
adults, and (2) children as vulnerable and needing protection, have been somewhat
mediated by the best interests principle. However, from a global perspective, it is not
clear which culture’s conception of ‘best interest’ should prevail (Freeman, 1997, p. 8).
Nor do children themselves typically have a voice in formulating conceptions of best

interest (John, 1996, p. 7). In real-world use, the best interests principle falls short of

meaning “what’s good for the child,” instead being interpreted as a way to balance

15

children’s versus adults’ interests. Often, the latter takes precedence (Houlgate, 1980, p.
107).

Some note a phenomenon of “depoliticisation of children,” or, the “mistaken
belief that problems related to them are non-controversial and lie outside the political
agenda” (John, 1996, p. 9). What is required to alleviate children’s plight, therefore, is
nothing short of a “political re-awakening” (John, 1996, pp. 9-10).

In this thesis, I will be making certain rights-based assumptions about society’s
obligations toward the care of mentally ill children. This assumption, of a rights-based
approach to the issue at hand, is not without its philosophical criticism and detractors.
Such critics include Robert Nozick. Nozick, for example, asserts that there are “only
three ways in which the right of access to resources may be gained,” ‘just acquisition,’
‘just transfer,’ and ‘compensation for previous injustices’ (Nozick, Anarchy, State, and
_U_tgpi_a [1974], as quoted in Wringe, 1996, p. 21). By way of another example, Colin
Wringe has summed up a traditional philosophical assumption, that “...need, even
extreme need, has not been regarded as sufficient to justify a right” (John, 1996, p. 6).
My discordance with these scholars relates to my perception that there exist fundamental,
irreconcilable differences between rights-based approaches and natural law. A rights-
based approach offers a dual benefit: while cohering with the popular assertion that
children have intrinsic value, it simultaneously holds positive utilitarian value and appeal.

Commentators on children’s right to medical care highlight the moral relevance of
children’s relative inability to provide for themselves, through work or otherwise (thus

ruling out a right to health care resources through Nozick’s ‘just transfer’ pathway; see

Wringe, 1996, pp. 21-2). A more promising route toward justifying such access seems to

16

be Nozick’s ‘compensation for previous injustices;’ namely, children’s powerlessness
and inadequate or unequal historical access to health care resources. It is also particularly
interesting, and I believe relevant, to think about and compare the right to health care of
various age groups (e.g., young versus old), in the context of finite and scarce resources.
Chapter 2 pursues this dilemma, intergenerational equity in medical resource allocation,
in greater depth.

Pope John Paul H placed ethical constraints on the use of power in achieving
social goals when he said, “...power is responsibility: it is service, not privilege. Its
exercise is morally justifiable when it is used for the good of all, when it is sensitive to
the needs of the poor and defenseless” (Anonymous, 1999, p. 1). Legal recognition of
children’s impaired competence has enabled more powerful adults to decide to which
resources and rights children are deserving (see Freeman, 1997). This phenomena sets
children apart from other minorities, such as women and African-Americans, who have
succeeded at changing their social status from one characterized by paternalism and
weakness, to one of competence and autonomy (see Freeman, 1997, p. 10).

The work of philosopher Colin Wringe on the topic of children’s rights is
illuminating. Wringe’s argument is essentially as follows. Until recently, it was a given
assumption that children could not safely hold rights of freedom, the ability to decide for
oneself, because they lacked the capacity for rationality. Wringe believes this notion was
consciously amplified as “an excuse for adult over-protectiveness...” (W ringe, 1996, pp.
19-20). But the right to health care is typically categorized as a welfare right, not a right
of freedom, and Wringe argues that welfare rights cannot be denied by appealing to

children’s irrationality or incompetence. Even irrational people suffer from a lack of

17

needed basic resources. Welfare rights are particularly pertinent to children, who are
characterized by their powerlessness and inability to provide for themselves. However,
any social duty to provide access to medical resources would be a “duty of imperfect
obligation,” not a “duty of perfect obligation;” it must compete with other social needs,
and need not be immediately, preferentially fulfilled. The reason for this is that,
traditionally, even heart-wrenching need is not enough to justify a right to resources (see
Wringe, 1996).

Relative to other civil rights movements, children’s advocates have been
historically unable to coalesce into a formal, well-populated reform movement. Rather,
child advocacy efforts have largely been characterized by fragmentation, isolation, and
piecemeal efforts. The conclusions of child advocates David Richart and Stephen Bing
best approximate my own interpretations of the impact of political disenfranchisement on
children and attending to their social needs. Richart and Bing note that child advocates
are at a political disadvantage, because they cannot assert that everyone is directly
affected by the problem (as can, for example, consumer advocates). The daily lives of
most middle- and upper-class peOple are untouched by the plight of disadvantaged
children (Richart & Bing, 1989b, p. 28). And the cliché holds that what is out of sight is
out of mind. Children lack the benefits, political clout, and exposure of an AARP; nor do
they have any broadly-organized political constituency. “Never in the history of
American politics has there been a constituency so popular but with so little political
clout” (US. Sen. Christopher Dodd, in Richart & Bing, 1989a, p. 29). Society has
traditionally attempted to address those healthcare issues disproportionately affecting

politically-powered constituencies (G. Osborn, personal communication, May, 2000).

18

The 2000 stir over seniors’ spending for prescription pharmaceuticals is a recent

example.

Richart and Bing identify seven critical differences between traditional civil rights
movements and the children’s rights ‘movement,’ differences that tend to cripple efforts

to formalize and politically empower the latter.

1) The capacity to invest oneself in a cause is motivated by highly
personal feelings of “alienation, uneasiness, or injustice,” feelings
which adult advocates lack. Adults also suffer “adult amnesia,”
forgetting what it is like to be a child.

2) This lack of feeling personally invested hinders efforts to recruit large
numbers of people to child advocacy causes.

3) Self-empowerment activities undertaken by other civil rights
movements are impossible for children and their oft-
socioeconomically disenfranchised parents. Such activities include
campaign volunteering, giving donations, and voting. This renders
children unable to seize power by refusing others’ assistance, closing a
major pathway to gaining social status.

4) Children’s advocates tend not to employ confrontational, visible
protest tactics (public demonstrations, violence).

5) Child advocacy is not a grassroots movement: Adults themselves do
not benefit, but rather “act as agents or representatives” for potential
beneficiaries.

6) Children are less paro'chialistic and more idealistic than adults, who
prefer to take less risk.

7) Child advocacy is poorly funded compared to other public interest
' groups (elder advocacy, environmental preservation).

Chapter 1 spotlights the pertinence of the rapid evolution of America’s health care
system, offers background on significant advances in treatment and prevention for mental
disorders, and examines the limitations of Western biomedicine and biomedical ethics in
addressing the problem. Chapter 2 acknowledges the imminent health resource dilemma
posed by abrupt demographic changes. It examines the economic reasons for this quite
political crisis, and applies philosophical analysis to issues of just allocation of medical

resources among different age groups, specifically children with chronic or severe

19

disorders and the elderly. The List of Abbreviations contains a glossary of acronyms
frequently applied to govemment/social program names and medical terms. These may

be accompanied by brief definitions.

20

Chapter 1: Foundations of Corporatized Medicine; Pediatric Mental Health Care; and
Prevention/Early Intervention

This section explores the buildup of a traditional mental health care system,
dependent upon interdisciplinary provider relationships, parental participation, and
community involvement. This system conceptually evolved from the perception that
mental illness did not etiologically reside within the child, but instead resulted from
family, community, and societal influences. Indeed, “from their earliest origins, mental
health services for children have emphasized a community orientation” (Pumariega,
1997, p. 68). Just as causation was not thought to rest solely with the individual, neither
was it perceived that prevention and treatment should focus on the individual child alone.

Unfortunately, 19’h and 20th century reformers’ expansive hopes for prevention
were largely unmet. Only recently have scientifically rigorous outcome- and
effectiveness-assessment methodologies become widespread, tools that may help make
prevention and early intervention a reality. But in a state of ever-scarcer health care
resources, it remains to be seen how well we can attend to both the needs of emotionally
disturbed children, and apply such tools to help at-risk children. One issue policymakers
will continue to face is how to meet two competing social obligations: caring for the
severely ill, and investing in “prevention, early identification, and early intervention”
(Friedman, 1986, p. 8).

This section also opens discussion of the tremendous impact of changes in
payment schemes and financial incentives on care for mentally ill children. Critics of
managed care concerned about mentally ill children point to its disruption of the

traditional system of care and reduced access. Children are devoid of advantages or rights

21

that adults take for granted (e.g., the vote; patient self-advocacy; decisionmaking
competency). These powers become increasingly critical as government assumes the
roles of health system reformers and regulators of managed care. By ‘managed care,’ it is
meant that medicine is seen as a corporate-driven commodity, versus viewing medical
care as an inherent human right. Mental health advocates are concerned that
nontraditional providers and services will become or remain economically inaccessible to
patients arguably most in need of and most likely to benefit from them, as these providers
and treatment modalities are less likely to be included in insurance benefits. What may be
the most frustrating to advocates is that managed care has wrought such changes in the
way mental health care is delivered in America precisely at a time when pilot studies
involving holistic efforts are showing promise in preventing or lessening the lifelong
sequelae of mental illness. Managed care is directly pertinent to this thesis. Its techniques
and financial incentives dominate our current health care system, and powerfully
influence access to care for emotionally disturbed children.

One attribute of managed care spotlighted by critics is that decisionmaking about
treatment no longer predominantly hinges on clinical issues but on nonmedical factors:
cost, efficiency, and profit. However, the influence of nonmedical factors on mental
health care for children is neither a result only of the spread of managed care, nor recent
(e.g., Mechanic, 1998, p. 84). Since the early 20‘h century, when the first pediatric
psychiatric inpatient units anived, “...the choice of treatment settings has been
determined more by politics and custom than by diagnostic need” (Woolston, 1991, p.
890). Nonmedical economic factors were added by managed care’s spread to behavioral

health care.

22

At the turn of the 20‘h century, “terms such as child psychiatry, mental health, and
emotional disturbance had yet to be invented” (Rafferty, 1991, p. 1170). Child psychiatry
became a specialty in 1960 (Rafferty, 1991, p. 1170); the American Academy of Child
Psychiatry was founded in 1952 (Rafferty, 1991, p. 1170). However, at the beginning of
the 20th century, pediatricians also assumed a role in mental health care. (Rosen, 1968, p.
301). Interdisciplinary cooperation was urged (1935): “Doctors [pediatricians] should be
very careful about claiming control of ‘the whole child’...It is not at all certain that the
practicing physician can provide all this care himself” (Rosen, 1968, p. 301).

Preventive efforts targeted at children at risk for mental illness began in the 19th
century. Despite the lack of a scientifically rigorous knowledge base, child welfare
workers identified influences that even today are considered or suspected to be crucial in
fostering healthy development.

The federal government took notice in 1909, offering the first of several White
House Conferences on child welfare. This conference stressed the importance of a proper
home environment and good mothering (Rosen, 1968, pp. 294-5). The federal
government, through its Children’s Bureau (established 1912) assumed a parental
educative function, making available the latest research (Rosen, 1968, p. 296). Between
1918-28 physicians, public health workers, government officials, social workers, and
teachers were all considered to play a role in promoting “mental hygiene” in the first
years of life. While the White House conferences did not break new theoretical ground,
federal endorsement facilitated public interest (Rosen, 1968, p. 297). Awareness grew in
the influence of school environments. Public awareness grew assisted by increased media

attention (Rosen, 1968, p. 298). Prevention centered around thwarting the development of

23

“asocial habits” and growing healthy personalities (Rosen, 1968, p. 299). Child
development research continued to expand in the 19203; conceptual interest turned to
fostering normal social development (Rosen, 1968, p. 299). Etiological interest shifted
away from inheritance (Rosen, 1968, p. 300); the family continued to be most important.
Prevention was key. Outreach included

“...the services of child welfare workers in rural areas, homemaker

services, day care, and foster family day care services...to help keep the

family unit intact whenever possible, and to provide continuing supportive

counsel to parents...Group discussions with parents...and with disturbed

children were initiated...in order that these problems might be resolved

before they reached crippling proportions” (Rosen, 1968, p. 302).
1940-50 witnessed child welfare workers’ research on and application of new concepts in
child mental health (Rosen, 1968, p. 303). Another White House Conference (1950)
convened researchers of personality development to identify and disseminate information
about factors contributing to healthy personality formation. The need was vocalized for
improved provider training and mental health programs in schools (Rosen, 1968, p. 303).

Two events introduced “the modern era of community-based systems of care for
children”: 1) the publication of a book (Unclaimed Children. by Jane Knitzer [1982]),
describing sequelae of a lack of a “community-based system of care,” and 2) the resulting
CASSP (Child and Adolescent Service System Program) (Pumariega, 1997, p. 68).
CASSP, developed in the late 19808, “...assisted all 50 states in developing an
infrastructure for publicly funded community-based services” (Pumariega, 1997, p. 68). It
advocates an interagency, coordinated, individualized continuum of care, in which

families were to be involved with treatment planning, and which favored less restrictive

environments over inpatient placement when appropriate (Pumariega, 1997, p. 68).

24

Early (19203-303) hospital units focused primarily on children with organic
disorders. The later (19703), explosive growth of psychiatric inpatient care is attributed
not to growth in recognition of children’s needs but “scientific, political, and fiscal
factors” (Woolston, 1991, p. 890; see also Friedman, 1986, p. 9). Children have
traditionally been treated within a variety of psychiatric and nonpsychiatric institutional
settings, “...including juvenile detention, social welfare, and educational systems”
(Woolston, 1991, p. 890). Institutional placement occurred to address various perceived
social needs: housing, unacceptable behavior, and mental illness. Until the 1950s, severe
childhood mental illness was perceived as rare; institutionalization was infrequent. The
state of care for status offenders and mentally ill youths in the 19703-803 directly
contributed to calls for managed mental health care (Schowalter, 1998, p. 167). Many
juvenile detention centers closed as a result of decriminalization of status offenses.
Transinstitutionalization occurred, from criminal justice to the medical sector. Fee—for-
service insurance policies dominated in the 19703-803 and fulfilled a new perceived need
for inpatient care. Payers resisted the spiraling costs of such intensive, for-profit care,
paving the way for MMHCs’ spread (Schowalter, 1998, p. 167). Woolston (1991, p. 892)
also attributes the 19703-803 rapid growth in admissions to

“...diminished availability of juvenile detention and child welfare

systems, increased funding provided by private insurance and Medicaid,

as well as increased social instability due to divorce, moves, social

disruption, and the relaxation of the statutory rights of minors.”

Economic factors-not diagnosis-were primary determinants of length of stay (Woolston,
1991,p.891)

In the mid 19703, pediatric admissions trended from public to private hospitals.

Rapid growth of construction of private, for-profit psychiatric hospitals drew insurance

25

coverage 1) toward intensive treatment, and 2) away from a traditional, community-based

system of care:

“This increasing intensity of treatment provided in inpatient units has

tended to cut off such services from their historically related programs

provided by educational, juvenile detention, and social welfare agencies.

The very same medical, financial, and political forces that have promoted

the growth of these inpatient units have created artificially rigid

boundaries with these other related treatments” (Woolston, 1991, p. 891;

see also Schowalter, 1998, p. 167).

There is evidence suggesting that managed care is inexperienced or inept at
dealing with pediatric mental illness, particularly severe disturbance. States observe poor
coordination between managed behavioral health providers and social sectbrs, whose
intimate involvement makes the pediatric mental health care system unique (American
Psychiatric Association, 1997, pp. IV-V). There is concern that managed care is
inadequately prepared to deal with the vastness and complexity of pediatric mental
illness. Such concerns fuel calls for health care reform involving transfer to a universal,
single-payer, comprehensive model. Managed care’s “design and operating principles”
conflict with the mission and goals of courts and social services (American Psychiatric
Association, 1997, p. V). Moreover, managed care is unfamiliar with streamlined funding
mechanisms developed between social sectors (American Psychiatric Association, 1997,
p. V).

Managed care has led to cost reductions in inpatient and specialty care (e.g.,
Rothbard, 1999, p. 211). However, most studies examining the impact of managed care
on cost and outcome for psychiatric treatment have been done on healthier, outpatient

populations (Rothbard, 1999, p. 212). Findings of unaffected outcomes and lower costs

do not extend to severely ill groups. As of 1996 only one study had examined this

26

population, and found continued high utilization and higher costs than among non-HMO-
enrolled controls (Rothbard, 1999, p. 212). Given the dearth of data and variety of MCO
models, it is premature to draw conclusions about utilization and cost for mentally ill
pediatric populations.

“Since the early 19903, the most profound change in managed care in the USA
has been the rapid [enrollment] of vulnerable ‘public sector’ populations into mandatory
managed care programs” (Rothbard, 1999, p. 212). States’ “experimentation” with such
public sector (Medicaid) programs burgeoned in the 19803 (Rothbard, 1999, p. 212).
Results of these experiments indicate “...minimal effect on reducing costs” (Rothbard,
1999, p. 213). There is little cost- or care-shifting to either the general medical sector or
“community-based, publicly funded mental health programs” (Rothbard, 1999, p. 214).
Utilization, Cost, and access appear to be similar between FFS- and managed care-
enrolled public sector populations. However, “[m]anaged care recipients [reported] more
problems obtaining their care and were less satisfied with their health plan than were FPS
enrollees [sic]” (Rothbard, 1999, p. 214). Moreover, compulsory enrollment of the more-
disabled, more-expensive populations has just begun. Savings reductions have been
measured with populations dominated by the “...least expensive subgroup in the
Medicaid population with one quarter the annual costs of the disabled group” (Rothbard,
1999, pp. 212-214). Yet, “[t]he lack of evidence that market driven techniques will result
in greater cost efficiency in health services for public sector populations, without
sacrificing quality of care, has not stopped governments from forging ahead” (Rothbard,

1999, p. 215).

27

To understand the impact of managed care’s spread on allocation of medical
resources, it is useful to comprehend the economic forces fueling this trend. It is valid to
ask how well managed care models will meet guidelines representing best practices in the
care of SED youth (e.g., CASSP). Caseworkers labor to adhere to best practices, while
facing increased role conflicts. Ethical challenges ensue when the obligation to
coordinate care collides with the new role, ‘cost manager.’ Severely emotionally
disturbed children qualify as a chronically ill population; commentators agree that
chronically ill populations are at risk of suffering disproportionately more than healthier
populations under market-driven managed care. Reasons for this will be explored.
Children’s advocates fear that savings from shifting chronically ill, Medicaid-eligible
children to managed care will be shifted to more politically visible, powerful, and popular
Medicaid population cohorts, such as the elderly or disabled. Such issues (managed
care’s inability to achieve highest-quality care, provider role conflicts, family behavior
and attitudes, and fair allocation of resources) have all been covered in the bioethics
literature. What is new is analyzing these issues’ relation to the plight of mentally ill
children.

What inspired the rapid evolution from FFS to capitated, or managed, care among
state Medicaid programs? Main reasons were rapidly increasing costs and decreased
federal reimbursements (Scholle & Kelleher, 1998, p. 660). The spread of managed care
in the 19903 has wrought “shifts...in the allocation of mental health service dollars...”
(Bums & Hoagwood, 1998, p. 688). An example is decrease in inpatient spending
relative to outpatient (Burns & Hoagwood, 1998, p. 688). Similar trends are observed in

studies of state Medicaid program waiver experiments targeting children’s mental health.

28

Some effects of managed care’s spread are worthy of cautious praise rather than
concern: managed care’s decreased resource allocation to inpatient care coheres with a
principle of CASSP, namely, restrictiveness of care. “Services will be provided in the
least restrictive setting” (Burns & Hoagwood, 1998, p. 688). CASSP-modeled systems of
care improve access (Bickman, Summerfelt, & Noser, 1997, p. 1547). However, there is
concern that other CASSP principles will be less adequately met with the spread of
managed care, namely community treatment, cultural competence, and family
involvement in planning (Burns & Hoagwood, 1998, p. 688). Managed care-led changes
in caseworkers’ roles, from care to cost management, are also observed.

“Further study will be needed...to determine what is meant by case
management in [state health care reforms]. In public sector systems of
care, case management typically involves a care coordination role, often
with supportive and clinical features. In managed care environments, case
management often refers to a financial management [also referred to as
‘cost management’] and oversight function” (Stroul, et al., 1997, p. 397;
italics the authors’. See also Horwitz & Stein, 1990, pp. 581-586, and Fox,
et al., 1993, p. 547).

The literature is pervaded by pinpoints of optimism concerning managed care’s
spread to chronically ill populations, only to be followed by wonisome caveats.

“A competitive health care marketplace offers the possibility of cost
containment, improved access, and greater quality. However, there is also
the possibility of market failure. One group that could suffer in a
competitive marketplace is children with chronic illnesses” (Neff &
Anderson, 1995, p. 1869).

MCOs

“...[offer] better protection than conventional plans against out-of-pocket
expenses and [are] much more likely than [FFS] plans to cover ancillary
therapies, home care, outpatient mental health care, and medical case
management. In addition, few HMOs [maintain] exclusions for preexisting
conditions. Other aspects of HMO policies, however...operate against the
interests of families with chronically ill children” (Fox, et al., 1993, p.
546).

29

Others assert that managed care threatens continuity of care by restricting access
to a variety of providers (e.g., see Deal & Shiono, 1998, p. 100; Kelleher, et al., 1997, p.
1113). One study found that continuity of care, which is related to “provider familiarity
with patients,” was the “strongest predictor of clinician recognition” of psychosocial
problems (Kelleher, et al., 1997, p. 1109). Furthermore, one study, roughly measuring
access through utilization rates, suggested that one reason why utilization was markedly
higher in a prepaid group practice plan (PGP) than in a prepaid independent practice plan
(IPP) was that the former offered access to a variety of providers, including non-
physicians (Williams, et al., 1979, p. 147). Savings realized from reduction in inpatient
spending may be shifted to profit or to other Medicaid patients, rather than towards better
fulfilling CASSP model principles: “...the critical issues here are how to shift
institutional funds into community services before they disappear in Medicaid block
grants or managed care profits” (Burns & Hoagwood, 1998, p. 689).

This section introduces the problem of undertreatment for mentally ill children
under capitation. It also describes provider incentives to undertreat and suggested
solutions, including: government regulation, ‘reinsurance,’ and risk-adjusted capitation
rates. For example, until methods for determining accurate capitation rates are developed,
chronically ill populations are vulnerable to access and quality—of-care problems arising
from provider incentives to undertreat.

“...[M]anaged care technology seems to be so powerful at controlling behavioral
health care costs that the abundant worry today is undertreatment” (Frank, et al., 1997, p.
116). When one considers this problem, the words of a mid-19803 commentator seem

nai’ve:

3O

“...if a system objective is to restrict residential placements only to
youngsters with the most serious need, and to emphasize intensive but less
restrictive options, then fiscal policies should promote this. One
approach...would be to apply [an HMO] model to children’s mental health

so that in fact there are incentives for providers to be efficient and thrifty”

(Friedman, 1986, p. 12).

Undertreatment and barriers to access are concerns for enrollees of plans failing to
design capitation rates to account for enrollees’ varied risk. ‘High risk’ refers to the threat
that care for a particular enrollee will cost more than the capitation amount paid to the
provider that is supposed to cover the cost of their care for a specified time.

“[M]anaged care organizations have few incentives to enroll chronically

ill or disabled children with higher-than-average expected costs. Without

mechanisms in place that adequately adjust capitated rates to account for

these higher-cost enrollees, managed care organizations may lose money,

and children with the greatest health needs may be underserved (Deal &

Shiono, 1998, p. 93).

What is more, the problem of chronic illness among children is worsening,
rendering this population “especially vulnerable” (Neff & Anderson, 1995, p. 1866).
“During the 20th century the prevalence of chronic illness in children and the proportion
of health care resources used to care for them have gradually increased;” rendering this
group a target for cost curtailment (Neff & Anderson, 1995, p. 1866; see also Fowler &
Anderson, 1996, p. 11). Costs can be over five times greater than for healthy children
(Neff & Anderson, 1995, p. 1866). A JAMA article recommended two steps to address
undertreatment: risk-adjusted capitation rates (or carve-outs for certain illnesses), and
adequate access to qualified providers (Neff & Anderson, 1995). Other recommendations
include ‘procompetitive’ government regulation, and ‘reinsurance’ (a risk pool which

MCOs both pay and tap into for particularly costly conditions) (Fowler & Anderson,

1996, p. 14; see also van Barneveld, van Vliet, & van de Ven, 1996).

31

As recently as 1996, new methods by which capitation rates are risk-adjusted to
reflect prior utilization-~in order to predict future utilization--remained incomplete;
existing methods continued to “[present] problems for children with special needs, as
these risk adjustments [usually based on gender and age factors] do not differentiate
chronically ill children from healthy children. Thus, these children remain vulnerable in a
competitive marketplace” (Neff & Anderson, 1995, p. 1868; see also Fowler &
Anderson, 1996, p. 16). “[C]urrent risk adjustment methods...still leave chronically ill
children at risk of discrimination”; and fail to prevent MCOs from

“compet[ing] on their ability to segment risk rather than on the basis of

quality and efficiency...Research in the area of pediatric capitation

adjustment is especially relevant for children with special health care

needs” (Fowler & Anderson, 1996, pp. 11, 16).

The use of carve outs for mental health care has risen. ‘Carving out’ means MCOs
“pay behavioral managed care organizations (BMCOs) an administrative fee for
managing behavioral health services” (Scholle & Kelleher, 1998, p. 663). More recently,
though, administrative fees are less preferred than capitation: “employers and insurers are
contracting with BMCOs on a risk basis; that is, the BMCOs receive a fixed sum per
capita annually to provide mental health and substance abuse services and, thus, have
financial incentives to restrict utilization” (Scholle & Kelleher, 1998, p. 663). Carved out
services for Medicaid eligibles can be a positive, in that they “may increase access for
poor children in situations in which these services otherwise would have been denied”
(Deal & Shiono, 1998, p. 101). However, it is essential for states to understand the needs

of mentally ill children, and explicitly list these services in the Medicaid contracts they

negotiate with MCOs. Otherwise, “fully capitated plans have an incentive to interpret

32

their service provision obligations narrowly and to reduce costs by shifting the
responsibility for these services to [FFS] providers” (Deal & Shiono, 1998, p. 101).

Partly because of the spread of managed care in Medicaid, a new, stronger social
obligation has been placed on states to protect vulnerable citizens’ interests, with respect
to both health care and daily living needs, a problem particularly for the mentally ill.

“[T]he new [managed care] environment establishes opportunities for state

mental health authorities to become the watchguards of the privatized

public safety net, helping to establish appropriate standards and norms...

and carefully monitoring performance as it relates to...vulnerable

subpopulations. Particularly important are the boundaries with primary

medical care, social services, vocational rehabilitation, housing, and the
criminal justice system...[Alctive state involvement will be needed to

bring together the constellation of services that many of the most

vulnerable patients require” (Mechanic, 1998, p. 96).

The nuances of financial incentives vary with the type of health plan contracted
for by states, and the proportion of risk assumed by providers, states, and health plans.
Examples of Medicaid managed care plan types are: ‘fully capitated health plans,’
‘prepaid health plans,’ and ‘primary care case management (PCCM) programs’ (Deal &
Shiono, 1998). Fiscal incentives work against the grain of the growing knowledge base of
what approaches reap the most benefit in treating mentally ill youth. Even treatment
models adopted as state policy, and professionally accepted, are not being implemented
as much as they should because of financial incentives, possibly leading to
undertreatment.

“A serious concern is that without adequate risk adjustment mechanisms,

there may be built-in incentives in managed care systems to underserve

those with serious disorders. Children with [SEDs] would be vulnerable to

such incentives to underserve, particularly if capitation rates are
inadequate” (Stroul, et al., 1997, p. 397).

33

One promising model for caring for these children is CASSP. The Child and
Adolescent Service System Program model arose in the mid 19803; it advocates
promoting a coordinated, comprehensive, accessible ‘system of care’ in each state,
through a number of principles: individualized care, family involvement, a community-
based continuum of services, service provision in the least restrictive possible setting, and
cultural competence. Its outpatient emphasis counters prior spending trends: “historically,
the [fiscal incentives which are...likely to drive decisions about service provision] have
been on the side of institutional use” (Bums & Hoagwood, 1998, p. 688). In the mid-
19808, 75% of spending on childhood mental health went to inpatient care; such financial
incentives influenced treatment decisions more than the knowledge base of what is
clinically effective (Burns & Hoagwood, 1998, p. 688). Not all problems implementing
CASSP can be attributed to misguided financial incentives. Authors note the practical
difficulties of seamlessly distributing resources to local, multisector entities: “The
availability of alternatives to institutional care remain limited, partially because it is not
feasible to shift institutional dollars into community-based resources or to blend funds
across child agencies” (Burns & Hoagwood, 1998, p. 691).

One reason policymakers are leery of insurance parity for mental illness is the
problem of moral hazard. ‘Moral hazard’ is an economic term used by the insurance
industry to describe “the tendency for peOple to demand more services as the price they
pay for services falls...[T]he dilemma of insurance is that it protects...against risk but
creates incentives for overuse” (Frank, et al., 1997, p. 110). The moral hazard problem is
“more serious [for mental health care] than it is in general medical care” (Frank, et al.,

1997, p. 110).

34

Insurers respond to moral hazard by instituting higher cost sharing for mental
health services than for general medical services (Frank, et al., 1997, p. 110). However,
the RAND study referred to in this article did not accurately simulate real-world
Medicaid managed care, because RAND’s subject enrollment was randomized, not
voluntary. Thus, RAND was not subject to the problem of selection bias, where “patients
who voluntarily enroll in or disenroll from a prepaid health care system differ in health
status from the general population” (West, Stuart, Duggin, & DeAngelis, 1996, p. 506;
see also Neff & Anderson, 1995, p. 1867). Unfortunately, this study design issue also
hindered interpretation and generalizability of results from the Ft. Bragg demonstration
project, a study comparing systems of care to ‘usual care’ for SED children (Bickman, et
al., 1997, p. 1543). Selection biases resulting from voluntary plan designs “may be
economically favorable to...HMOs and may undermine the cost-containment goals of
prepaid health care for Medicaid participants” (West, et al., 1996), as discussed below.

‘Adverse selection’ results from “imperfect information: the insurer

cannot observe characteristics of individuals that affect the cost of

coverage. However, these characteristics (e.g., the risk of illness) are
assumed to be known to consumers who use this information to select

their individual policies. Other things equal, those with greater risk will

demand more coverage” (Feldman, Escribano, & Pellise, 1998, pp. 659-

660).

Adverse selection is a problem especially for mental illness because of its
chronicity and complexity. Adverse selection leads to insurers receiving insufficient
premiums to profit from caring for people at higher risk. People with MH/SA problems
may flock to plans that become perceived as “...the ‘good mental health’ plan;” these

people are deemed “ ‘bad risks’ because it is likely they will be relatively expensive to

treat” (Frank, et al., 1997, p. 111). ‘Good’ plans then lose money or become at

35

competitive disadvantage. Insurers are familiar with this phenomenon, and have a strong
financial incentive to try to achieve ‘favorable selection.’ Favorable selection is an
insurance term meaning efforts to counter the attraction of such chronically ill, ‘bad risk’
enrollees toward their plans (see Feldman, Finch, & Dowd, 1989, p. 381; Fowler &
Anderson, 1996; and van Barneveld, et al., 1996, p. 133). While the individual MCO may
benefit financially, the community does not: “[F]or society as a whole, cream skimming
is a zero-sum game...any resources used in performing cream skimming can be seen as
social welfare losses” (van Barneveld, et al., 1996, p. 135). Adverse and favorable
selection, and cream skimming, are important economic concepts for consumers,
advocates, providers, and policymakers to understand; only through comprehension of
these terms’ meanings can one appreciate financial incentives’ influence in corporatized
medicine. Stakeholders must grasp that financial incentives are much more than a
nebulous academic thinking exercise: they directly impact access to quality mental
healthcare services.

Favorable selection is achieved in many ways, such as limiting or restricting
coverage or benefits (see Fowler & Anderson, 1996, p. 10). Such behavior by insurers is
documented (Frank, et al., 1997, p. 111). “[P]ersons who join HMOs or PPOs [vs. FFS
plans] have lower baseline use and costs, better self-reported health status and functional
status, and fewer medical conditions and functional impairments” (Scholle & Kelleher,
1998, p. 671). Favorable selection may be due partly to continuity of care factors, e.g.,
“the unwillingness of persons with ongoing health problems to change health providers”

(Scholle & Kelleher, 1998, p. 671).

36

Favorable selection for mental health care is suspected to behave differently,
specifically in the long-term. “[O]ver time...persons with more severe conditions
disenroll at higher rates;” “enrolled populations in managed care and FFS plans may not
be significantly different with regard to mental health problems or use at enrollment, but
may tend to diverge over time so that MCOs have fewer patients with significant mental
health needs” (Scholle & Kelleher, 1998, p. 671). Were MCOs to hold enrollees’ medical
welfare as a primary goal, they would attempt to discourage such behavior, since studies
find that

“continuity [of care] improves the receipt of preventive services, decreases

the likelihood of hospitalization, and may increase patient satisfaction...ln

an era of market-driven health care reform, many families are being forced

to frequently change primary care providers because of employer-directed

changes in health insurance on a frequent basis” (Kelleher, et al., 1997, p.

l 1 13).

Policymakers and advocates need to understand such concepts. “A long-standing
problem for policymakers has been to determine whether restricted benefits for mental
health are there for a ‘good reason’ (moral hazard) or a ‘bad reason’ (adverse selection).
There is ample evidence that both have been at wor ” (Frank, et al., 1997, p. 111). They
should also care about adverse selection and profitability of insurance plans: lack of
competitiveness “...may reduce the number of services provided or change the types of
services offered, both of which may have negative effects on access to and quality of
care;” should the plan go bankrupt, it may “...cease to provide services, also negatively
affecting access to and quality of care” (Zhang, Lancaster, Clardy, & Smith, 1999, p. 189;
see also van Barneveld, et al., 1996, p. 135).

Certain patient populations are at particular risk for harm:

37

“insurers may prefer not to contract with providers of care who have the

best reputation of treating (certain) chronic illnesses, because this will

attract nonpreferred risks. Thus, chronically ill people may find access to

the best health care hindered...One possible outcome of inadequate risk

adjustment is poor (access to the best) care and poor service for

chronically ill people” (van Barneveld, et al., 1996, p. 135).

Benefits restriction is another method by which to counter adverse selection. It
includes limiting access to specialists, or paying specialists unpalatable rates, to “try to
discourage families of children with chronic illnesses from enrolling” (Neff & Anderson,
1995, p. 1867; see also Fox, et al., 1993). Benefits restriction can disproportionately serve
as a barrier to chronically ill children: “several of the services that children with special
needs might require, such as diagnostic procedures, laboratory services, and ancillary
therapies, often would not be covered...” (Fox, et al., 1993, p. 548). More ethically
problematic methods, particularly for populations less able to self-advocate, include
“...administrative procedures that will discourage enrollment...making partial hospital
care difficult to access, contracting with residential programs located in out-of-the-way or
undesirable neighborhoods, and so on” (Frank, et al., 1997, p. 117).

Other administrative barriers include temporal gaps before coverage activates, a
“lag period...of considerable importance to children with serious illnesses” (Horwitz &
Stein, 1990, p. 583). Need for medical services is one of the most powerful predictors of
overall pediatric utilization (Riley, et al., 1993, p. 767). Therefore, the need for such
barriers, aimed at quashing inappropriate utilization, is less than for other groups. The
disproportionate impact of administrative barriers on access for disadvantaged enrollees
renders such barriers unfair.

One study of how adequately I-IMOs meet the needs of chronically ill children

found that

38

“[m]ost made services available only to individuals with conditions

responsive to short-term therapy; some made them available only for acute

conditions or only for nonorganic conditions. In these HMOs, children and

adolescents with [SEDs] obviously would be unable to obtain

treatment...Although access to mental health benefits was found to be

relatively easy in the majority of HMOs, the amount of services covered

often was too limited to allow adequate treatment of children with severe

emotional or behavioral problems” (Fox, etal., 1993, p. 549).
A study of Medicaid enrollment found evidence of favorable selection; those choosing
HMOs had histories of lower utilization than those opting for FFS Medicaid. Mental
illness was one of four conditions studied (West, et al., 1996, pp. 503-4). These concerns
are particularly pertinent for severely mentally ill youth, who are expensive to treat, often
because they require continuing specialist care (see Horwitz & Stein, 1990, p. 584).
“Services that are less likely to be needed by large numbers of children, but are often
needed by children with chronic illnesses, are subject to [benefits] restrictions by both the
indemnity insurers and HMOs” (Horwitz & Stein, 1990, p. 584). Proposed parity
legislation claims to benefit the chronically ill partly because its goal is to “[limit] the
consequences of adverse selection” (Frank, et al., 1997, p. 112), such as benefits
curtailment, which can impact access to adequate care, particularly for the most at-risk,
vulnerable populations who are disproportionately less able to aggressively seek and fight
for the care they require.

Access to care, along with cost and utilization, is a “traditional outcome
[measure]” (Stroul, et al., 1997, p. 397). Managed care techniques control access, reduce
patient choice, and spread financial risk among stakeholders, in order to ‘manage’ costs

(Behrman, 1998). Yet managed care arrangements also offer “...the potential to increase

access...for Medicaid beneficiaries” (Deal & Shiono, 1998, p. 96), for example through

39

applying cost savings toward increasing the number of individuals eligible through
Medicaid by adjusting income rules (Cutler, McFarland, & Winthrop, 1998, p. 363).

As recently as 1998, commentators noted the dearth of research on access,
outcomes, and utilization patterns with respect to managed care and children; the bulk of
such work has instead been done with adults (Scholle & Kelleher, 1998, p. 664).
Therefore, it is premature to offer policy recommendations, but worrisome patterns in
children’s mental health care are observed, especially with regard to access to appropriate
care. Some conclude that “INOS do not represent a more attractive option [for children
with chronic conditions] as postulated in the literature” (Horwitz & Stein, 1990, p. 585).

Children’s medical problems have become more complex at a time when society
is becoming more aware of the barriers population subgroups face in accessing care.
“During the last 2 [sic] decades, as the array of adolescent health problems has increased,
the barriers adolescents face in accessing physical and mental health services have
emerged in sharp focus” (Kaplan, Calonge, Guernsey, & Hanrahan, 1998, p. 25). With
respect to general medical care, “insurance has been demonstrated to play a key role in
determining the use of health services among populations of children and youth...”
(Newacheck, 1989, p. 874). Insurance “can play a major role in determining access”
(Newacheck, 1989, p. 877). While some assert that “[r]esearch has shown that managed
care programs do not impede access,” (Henley & Clifford, 1993, p. 211), the data on
which these assertions are based are usually collected from adult populations. Insurance
status affects youth access to a regular source of care. “[U]ninsured adolescents

nationally [in one study] had significantly lower mean numbers of physician visits in the

40

preceding year than did insured adolescents and were less likely to have usual sources of
routine care” (Anglin, et al., 1996, p. 324).

‘Accessibility’ is the “degree to which the health care delivery system inhibits or
facilitates the ability of an individual to gain entry and to receive services (includes
geographic, transportation, social, time, and financial considerations” (American
Psychiatric Association, 1997, p. 67). Health services researcher David Mechanic
describes ‘access’ in the managed care context:

“A major concern of consumers of mental health services is that managed

care will significantly limit their access to specialty mental health services.

Whether this is true depends on the definition of access. Issues include

whether persons can receive a mental health service and treatment,

whether such services must be obtained through a gatekeeper, and the

intensity of services received” (Mechanic, 1998, pp. 90-1; italics the

author’s).
Access is a particular problem for the poor (Williams, et al., 1979, p. 139). A relative lack
of research on access for chronically-ill children has been noted (Shatin, Levin, Ireys, &
Haller, 1998). “[D]isabled adolescents [mental illness is the leading cause of disability in
adolescents] were twice as likely to be covered by public health plans (primarily
Medicaid) and proportionately less likely to be covered by private plans” (Newacheck,
l989,p.877)

As of 1998, insufficient research had been completed to draw conclusions on the
impact of barriers to access to specialty care on severely disturbed youth (Scholle &
Kelleher, 1998, p. 678). While “overall access to mental health services is likely to
increase in MCOs” (Scholle & Kelleher, 1998, p. 678), SED youth are particularly

vulnerable to barriers to specialty care because of their greater need for and use of

specialty providers. But there are positive routes MCOs can take to both achieve the goal

41

of cost curtailment in this high-utilization, high-cost subgroup, and maximize access. For
example, some suggest “creat[ing] a specialty care network...All participating plans
would have access to the specialty providers in the network and would contribute to the
network based on their volume of patients. This would provide expert care for serious,
complicated, and rare chronic illnesses, build on the benefits of regionalization, and
minimize the duplication of services that add to health care costs” (Neff & Anderson,
1995, p. 1869). Unique medical aspects of chronic illness in children, as well as the
existing organizational structure of their health care, facilitate creation of such networks:

“Clearly, many of these issues apply equally well to adults with chronic

illnesses. However, it may be possible to move forward more quickly on

plans for children...for several reasons. First, children’s specialty care is

more regionalized...and the number of chronically ill children is

considerably 1ess...Second, it may be easier to develop carve-outs, risk

adjusters, and quality assurance measures...because illnesses in children

are more likely to involve single entities without the overlay of multiple

chronic illnesses...often associated with the aging process” (Neff &

Anderson, 1995, p. 1869).

“Children’s mental health needs continue to be largely unmet. . .” (Flaherty, Wiest,
& Warner, 1996, p. 341). A large number of children who have been recognized as
needing mental health services do not receive them. The scope of the problem—and of
the suffering—is larger than most Americans realize: “[A]lmost 20% of all children
might benefit from some specialized mental health intervention” (Piotrkowski, Collins,
Knitzer, & Robinson, 1994, p. 134). The US. Office of Technology Assessment
announced that “12 to 15% of adolescents present emotional/behavioral problems at

levels warranting intervention, but less than one third of these youth actually receive

mental health services” (Flaherty, et al., 1996, p. 342).

42

One study defined ‘unmet need’ as youth for whom “psychopathology and
associated functional impairment were present but no mental health services had been
received in the previous six months” (Flisher, et al., 1997, p. 1145). Although 20% of
youth exhibit psychopathology, “...only a small proportion of these receive mental health
services... there is a considerable amount of unmet need...” (Flisher, et al., 1997, p.
1145). Between 11-22% suffer from diagnosable mental disorder. (Anglin, et al., 1996, p.
325; Flaherty, et al., 1996, p. 341; Kaplan, et al., 1998, p. 31; Kelleher & Starfield, 1990,
p. 114). From 3-9% suffer from SEDs (Davis & Stoep, 1997, p. 402; Piotrkowski, et al.,
1994, p. 134). These numbers are difficult to determine with precision because
“[n]ationa1 data on adolescents’ use of mental health services are severely limited”
(Anglin, et al., 1996, p. 325).

According to federal guidelines, a child suffering from serious emotional disorder
(SED)

“‘exhibits one or more of the following characteristics with such

frequency, intensity or duration as to require intervention: Seriously

delayed social development...inappropriate behaviors (e.g., dangerously
aggressive towards others, self-destructive, severely withdrawn,
noncommunicative); a general pervasive mood of unhappiness or
depression, or evidence of excessive anxiety or fears or who has received

‘a professional diagnosis of serious emotional disturbance’” (Piotrkowski,

et al., 1994, p. 134).

While retardation and autism may be included as SEDs, this thesis focuses on emotional
disturbance.

“[N]eed for mental health services is defined to exist when: a) there is functional
impairment, that is the level of functioning falls below, or threatens to fall below, some

minimum specified level; and b) this is due to some potentially remediable or preventable

cause, for example psychopathology for which there is effective and acceptable

43

treatment” (Flisher, et al., 1997, p. 1145). Insufficient access is related to persistent, “very
high rates of unmet need” among SED children (Burns & Hoagwood, 1998, p. 691).
Despite an increase in utilization, as of 1995 “only one third of youth with serious
emotional and behavioral disorders received professional mental health services and only
one third of them received special education services” (Burns & Hoagwood, 1998, p.
691). “The majority of children in need receive insufficient or no mental health services”
(Pumariega, 1997, p. 67). “Only 6% to 20% of youth who need mental health services
receive them” (Davis & Stoep, 1997, p. 402). Others cite data indicating only about 25-
33% of needy youth receive services (Anglin, et al., 1996, p. 325; Kaplan, et al., 1998, p.
31). Less than 5% of American youth receive any mental health care, which can make
research difficult (Kelleher & Starfield, 1990, p. 114). Data disparities seem to be due to
a lack of national utilization data. In some cases, mental illness is classed as a ‘disability’
for legal and social programming purposes. A mid-19805 study deemed over 6%
disabled; “[t]he leading cause of disability was mental disorders” (nearly 1/3 of disabled
youths) (Newacheck, 1989, pp. 872-875).

Further, rigid medical necessity criteria often reflect the needs of acutely ill
populations more accurately than the chronically ill, particularly mentally ill, for whom
other approaches have proven themselves.

“The vast majority of [state Medicaid] reforms are using medical or

clinical necessity criteria for accessing mental health services. Further

study is necessary to determine...whether the use of these criteria is

restricting access to specialized services for children with emotional

disorders. The children’s reform movements of the past decade [e.g.,

CASSP] have moved away from the rigidity of traditional medical

necessity criteria to more flexible approaches. It remains to be seen the

extent to which managed care systems will build upon these reforms or

return to the use of more traditional types of criteria” (Stroul, et al., 1997,
p.397)

Relatedly,

“few health plans are familiar with the ‘accessory’ services that

persistently ill patients need such as transportation, skills training,

supportive housing, vocational training, and so forth. [Study interviewees]
worried that these essentials would be the first programs cut, as the I-IMOs

lack experience with these programs and, because of this inexperience,

may have difficulty viewing these services as medically necessary”

(Cutler, et al., 1998, p. 379).

These concerns are reflected in enrollee perceptions. In one study, FFS patients
perceived fewer administrative barriers to access, while MCO patients were more likely
than FFS patients to view access to specialty providers and range of provider choice as
problems. Moreover, poor MCO plan enrollees were less satisfied with their care than
comparatively poor FFS patients (Scholle & Kelleher, 1998, p. 674).

While access to primary care may improve under managed care, SED children
disproportionately suffer from lack of access to specialists. Moreover, while MCOs may
offer more alternative types of care, restrictions on number of visits and lifetime
utilization, particularly for such interventions as psychotherapy and supervised living
arrangements, are “likely to affect children with SED disproportionately” (Scholle &
Kelleher, 1998, p. 676). “[T]he [Medicaid program’s] rush into managed care may
diminish access to needed services and particularly adversely affect high-risk children”
(Stroul, et al., 1997, p. 387). Chronically ill children also are disproportionately affected
by other, targeted, barriers to care: “services often needed by children with chronic
conditions, such as...mental health services, most often have substantial additional

restrictions” (Horwitz & Stein, 1990, p. 585). Although HMOs “have been proposed as a

possible mechanism for providing. . .consistent, coordinated care for children with chronic

45

conditions,” this opportunity “may be more like a myth than a panacea” (Horwitz &
Stein, 1990, p. 586). Some conclude that neither managed care nor FFS “can be strongly
supported” in meeting their needs (Horwitz & Stein, 1990, p. 586).

The first step toward accessing appropriate care is identification of the disorder.
Failure at this step contributes to unmet need. “[I]mprovements in communication around
psychosocial issues are particularly important in this era of managed care because
primary care physicians are becoming gatekeepers to more expensive services such as
mental health interventions” (Horwitz, et al., 1998, p. 371).“[A]ccess may be facilitated
by increasing parental knowledge of mental health services and enabling children and
adolescents to initiate contact with services independently of their families” (Flisher, et
al,1997,p.1l45)

Improving youths’ ability to independently seek services might include access to
school health clinics. Such clinics are especially important since evaluators of programs
for younger children document unmet need (Piotrkowski, et al., 1994, p. 134). One Head
Start study found that teachers rated 23% as “[needing] mental health services;” yet only
2% were referred, and 25% of these did not receive services (Piotrkowski, et al., 1994, p.
134). The need is growing: “[a]necdotal information from Head Start directors indicate
they are seeing increasing numbers of children exhibiting challenging, difficult behaviors
(Piotrkowski, et al., 1994, pp. 134-5). The surveys also revealed evidence of insufficient
access and barriers to care: “[m]ost respondents (88%) indicated that there were
insufficient...resources in their communities, including lack of funding and affordable
mental health professionals and barriers to services, such as waiting lists, poor

transportation, and a lack of culturally competent providers”(Piotrkowski, et al., 1994, p.

46

 

 

135). For these reasons, there is agreement that “the mental health program is a weak link
in Head Start’s comprehensive services strategy”(Piotrkowski, et al., 1994, p. 133).

The school-based health center (SBHC) model, in contrast,

“has several compelling features as a delivery system...: it reduces

physical barriers to access, ...offers self-initiated confidential care,

focuses on early identification..., provides an array of services that can be

customized for the adolescent population, integrates health promotion into

the school environment, and uses midlevel practitioners to reduce...costs”

(Kaplan, et al., 1998, pp. 26-27).
SBHCs do improve access (Anglin, et al., 1996, p. 318). “Schools can offer a matchless
route for reaching young people. . .whose access to care may be limited, but whose future
health depends on early and consistent service...they are available to all children in the
community” (Henley & Clifford, 1993, p. 216). Another benefit is that children can more
quickly access SBHCs than they can special education; treatment in SBHCs may avert
the need for special education, and its stigma (Flaherty, et al., 1996, p. 344). This may
represent savings, not cost shifting, since referrals to special education drop once access
to MH/SA providers in school improves (Flaherty, et al., 1996, p. 348). A study
comparing inner city high school, HMO-enrolled adolescents with access to SBHCs, to
adolescents with no such access (covered by the same HMO), found that the former were
over ten times more likely to make a MH/SA visit; moreover, speaking to prevention and
early intervention, they were more often screened for high-risk behaviors (Kaplan, et al.,
1998, p. 25).

A study of SBHCs in over 10 states illustrated the magnitude of need and demand
exhibited by youth: “mental health concerns were the second most frequent reason for

visits to the health clinic...behind acute illness/accidents” (Flaherty, et al., 1996, p. 345).

Other SBHCs ranked MI-I/SA at the top of the list in terms of type of service utilized

47

(Flaherty, et al., 1996, p. 346). One study of over 3800 youth served at 3 SBHCs found
that “the most common diagnostic category was emotional problems” (Anglin, et al.,
1996, p. 321). Concerning vulnerable or at-risk p0pulations, “the availability of an SBHC
attracts a harder-to-reach segment of the population into preventive health care” (Kaplan,
et al., 1998, p. 30; see also Flaherty, et al., 1996). Benefits include extending MH/SA
care to underserved urban and rural areas (Flaherty, et al., 1996, p. 347). SBHCs clearly
fill an unmet need for access to MH/SA care. One program found that “80% of youth
presenting noteworthy behavioral/emotional problems upon referral. . .had no prior mental
health involvement” (Flaherty, et al., 1996, p. 349; italics the authors’). The difference in
utilization of MH/SA services in particular was “striking;” over 96% of mental health
visits were by youth with SBHC access (Kaplan, et al., 1998, p. 25). Mental health and
substance abuse often coexist in youth; over half of youth having visits with SA providers
also had visits with MH providers in this study (Kaplan, et al., 1998, p. 25).

Most children (about 70%) are essentially healthy; 20% have “minor chronic
problems,” and most of the remaining 10% “have one or more severe chronic illnesses”
(Neff & Anderson, 1995, p. 1866). One study found that “[e]ven among the high
utilizers...80% received [an excellent] rating of their health” (mothers’ reports) (Riley, et
al., 1993, p. 773). But the Kaplan et al. study (1998, p. 31), which agrees with other
findings, found that nearly 30% of diagnoses were for emotional problems. Those
concerned about cost control should note that compared with youth with no SBHC
access, youth with SBHC access had “significantly lower” rates of utilization of after-
hours emergency care (Kaplan, et al., 1998, pp. 29, 32). The authors suggest:

“This is a potential opportunity for managed care to improve the
comprehensiveness and quality of care provided to adolescents while

48

reducing costs, and it may prompt discussion of formal relationships with
SBHC programs” (Kaplan, et al., 1998, p. 32).

Schools considering SBHCs should be aware of the connection between academic
achievement and mental health status, thus the need to address both. “The relationship
between scholastic progress and mental health is reflected in the associations of unmet
need with low school grades...efforts to address either unmet psychiatric need or
unsatisfactory scholastic progress that ignore the other are...likely to be of compromised
efficacy” (Flisher, et al., 1997, p. 1153). Access baniers include barriers to initially
accessing care, or barriers to completing the full recommended course of treatment.
Successful SBHCs offer a continuum of services: “increased access to [MH/SA] services
seems to meet an important unmet need in this population” (Kaplan, et al., 1998, p. 32;
see also Flaherty, et al., 1996). They also improve socioeconomically disadvantaged
students’ access to care (Anglin, et al., 1996, p. 325).

It is uncertain whether MCOs can be convinced to view these efforts as worthy of
investment, and help continue the increase in number of SBHCs that began in the 1990s
(Flaherty, et al., 1996, p. 351). “...[S]chools cannot accomplish the needed changes
alone. They must coordinate with other child—serving agencies, such as child welfare,
mental health, and juvenile justice to pool resources and knowledge to address the
question of...what preventive measures can be taken” (Davis & Stoep, 1997, p. 422).
Excitement about SBHCs’ effectiveness in bolstering access is tempered with awareness
that funding depends on tenuous, temporary resources: school budgets, grants, and hard-
pressed local agencies.

“This gap leaves health insurance entities and public health funds as the

most logical and perhaps only viable funding sources...Given the
competitive health economic environment, insurance payers are not

49

 

looking for additional areas in which to spend purchasers’ dollars; yet, an
increasing number of adolescents served by SBHCs are insured by
managed care. The proliferation of SBHCs has coincided with the growth
in managed care” (Kaplan, et al., 1998, pp. 27-8).

Another concern related to unmet need and access is the fact that children
exhibiting ‘extemalizing’ behaviors (e.g., those affecting conduct; “...annoying habits...,
learning difficulties, behavior problems, disciplinary issues... family difficulties...[and]
behaviors that [are] upsetting to adults” [Horwitz, et al., 1998, p. 371]) are more likely to
be noticed, diagnosed, and treated than those with ‘internalizing’ disorders such as
depression (see Flaherty, et al., 1996, p. 349; Riley, et al., 1993, p. 779). Medicaid
utilization data bear this out: one study revealed that the top three diagnoses normally
have behavioral implications (Zhang, et al., 1999, p. 190). Others note such trends:
“...those receiving services were not representative of all youth with mental disorders”
(Flisher, et al., 1997, p. 1146). Clinicians are more apt to recognize psychosocial
problems in “older children and males” (Kelleher, et al., 1997, p. 1113). “[S]pecial
attention should be directed to younger patients, African Americans, and females”
(Kelleher, et al., 1997, p. 1114).

A defining characteristic of the CASSP model’s concept of community-based
systems of care is “access to a comprehensive array of services” (Pumariega, 1997, p.
69). One CASSP-model demonstration (the Fort Bragg Demonstration Project), when
compared to the traditional system of caring for children of military dependents
(CHAMPUS), did demonstrate increased access (and higher satisfaction, and
insignificantly different costs) (Pumariega, 1997 , p. 70).

Those debating the merits of parity legislation recognize the importance of access.

Of four definitions of ‘parity’ identified by Frank et al. (1997, pp. 115-6), one includes

50

 

 

access as a key factor: under this conception, the mentally ill “would have the same
access to necessary care as do persons afflicted with other illnesses.” However,
examination of state parity legislation reveals that “...few laws call for...equal access to
appropriate care for mental illness” (Frank, et al., 1997, p. 116).

The new paradigm of managed care requires a more aggressive approach, and a
more informed and educated stance, on the part of patients, consumers, and advocates in
order to access appropriate care. Role changes and heightening of responsibilities are
underway for patient advocates, purchasers, and government officials (Mechanic, 1998,
pp. 82-3). Recent political activity and media interest has spotlighted holding MCOs
accountable, through regulation, report cards, and lawsuits. Another commentator
explicitly applies rationing terminology, raising the issue of its potentially
disproportionate effects upon vulnerable populations. “[P]eople cite concerns
about...rationing in [privatized] delivery systems, particularly because mentally ill
Medicaid beneficiaries are poorly equipped to deal with denial of services” (Rothbard,
1999, p. 214).

The ability of families to effectively advocate is important because it influences
access: “the availability and quality of services available to a child with special needs is
likely to depend on the parents’ ability to maneuver within the system” (Fox, Wicks et a1
1993, 546). This includes keeping meticulous records. One survey found that many plans
required such recordkeeping: parents were responsible for knowing when their annual
copayment maximum had been reached, and alerting the HMO (Fox, et al., 1993, p. 551).

A critique of Tennessee’s experimental Medicaid carve-out program (Chang, et

al., 1998, p. 864) suggests that states can learn from Tennessee’s ‘failure’ by, among

51

other measures, structuring payment mechanisms to better serve the severely ill. Risk-
adjusted capitation (shielding providers from adverse selection by adjusting the capitation
rate to estimated future costs of insured patients) works better than using a single
capitation rate for all enrollees, in part because it accounts for the fact that “the seriously
and persistently mentally ill cannot effectively advocate for themselves” (Chang, et al.,
1998, p. 868). This assertion is important because it explicitly acknowledges the linkage
of vulnerability to impaired capacity to self-advocate; it also suggests that adjusting
managed care payment techniques can better serve this p0pulation.

Risk has been traditionally adjusted by prior utilization data. However,
commentators on Medicaid’s transition into managed care are concerned, because
“capitation rates derived from prior utilization data may...create...incentives to
underserve certain populations of children...” (Stroul, et al., 1997, p. 396).

Many mentally ill youth are “multiproblem, multiagency children with limited
family resources” (Pumariega, 1997, p. 70). Since they are often incapable of fulfilling
roles as rational actors in treatment planning, parents or others must advocate for them.
“For developmental reasons, ...children or adolescents may not be sufficiently
knowledgeable or mature to appreciate some of the practical aspects identified by their
parents, such as health insurance not covering the treatment, treatment taking too much
time or being inconvenient and transportation problems” (Flisher, et al., 1997, p. 1153).

Some Medicaid programs incorporating capitation address such practical needs.
Philadelphia’s HealthPass program, a “hybrid between [an HMO] and a traditional
Medicaid fiscal intermediary,” offers services such as a 24-hour hotline, community-

based services, media efforts, brochures and mailings”, and access to a nurse who

52

 

coordinates care (Henley & Clifford, 1993, pp. 214-5). Improvements in immunization
rates, the outcome measure studied, resulted.

While managed care can help attain CASSP principles, such as reduced emphasis
on inpatient care and greater involvement of family, concerns have been raised that—as
the family’s role evolves—these changes may go too far.

“Involving family members can make them an unpaid part of the treatment

team...But in depending more on families and communities, institutions

must avoid shifting undue responsibility and burden to them...[M]anaged

care may increase families’ caretaking burdens” (Mechanic, 1998, p. 93).

Often, ‘family’ means ‘mother’ (Riley, et al., 1993, p. 781).

A fact that speaks both to intergenerational justice in resource allocation, and to
the political power of well-organized constituencies, is this: Medicaid covers not only
low-income individuals but the elderly, blind, and disabled. Medicaid is “...the major
funding source for long-term care for the elderly and for health services provided to the
blind and disabled” (Deal & Shiono, 1998, p. 94). Yet, “...women of childbearing age
and children, who together account for 69% of Medicaid recipients, ...[incur] only 26%
of program costs” (Deal & Shiono, 1998, p. 93). “Although [the latter] represent the
majority of Medicaid recipients, other groups consume a far greater proportion of
program expenditures” (Deal & Shiono, 1998, p. 96). And, raising issues of policy
fairness, despite the relatively lower costs incurred by this group, “low-income women
and children...have been the primary groups enrolled in Medicaid managed care” (Deal
& Shiono, 1998, p. 93), a move primarily motivated towards nonclinical, cost-control
goals. Indeed,

“in states where reforms are directed toward subsets of the total Medicaid

population, the Aid to Families with Dependent Children (AFDC)
population is most likely to be affected, with the aged, blind, and disabled

53

 

population being the least likely to be affected...12% of the

refonns...involve only children and adolescents...[W]here there are

special age-based reforms underway, they involve children and

adolescents” (Stroul, et al., 1997, p. 390).

States look to managed care to rein in costs, yet illogically target one of the least
costly Medicaid-eligible subgroups. Costs are spiraling not for them but for the elderly
and disabled (Deal & Shiono, 1998, p. 96). Even leaving low-income women out of the
equation, concentrating only on children, there is cause for fairness concerns. 20% of
children benefited from Medicaid in 1995; almost 50% of Medicaid beneficiaries that
year were children. However, since they are relatively low-cost, they accounted for only
15% of spending (Deal & Shiono, 1998, p. 96). “In contrast, while only 27% of enrollees
were elderly, blind, or disabled, this group consumed nearly 75% of program resources”
(Deal & Shiono, 1998, p. 96). “[M]others with dependent children...are the least
expensive subgroup” (Rothbard, 1999, p. 214). Some compare their enrollment (often
involuntary) into managed care plans to experimentation (see Rothbard, 1999, p. 212;
Stroul, et al., 1997, p. 395), or taking advantage of this subgroup’s disadvantaged and
stigmatized socioeconomic status as ‘undeserving:’ unwed, poor, diverse, young. “[I]f
there is a special age-based focus, this tends to be on children... This finding is
encouraging in that children are not being left out of reforms, but it raises some concern
that children may be vulnerable as the target group for experimentation with managed
care approaches” (Stroul, et al., 1997, p. 395; italics mine). Although others apply such
‘experimentation’ language to the en masse, rapidly increasing enrollment of “vulnerable
‘public sector’ populations” into managed care (e.g., Rothbard, 1999, p. 212), the ethical

challenges this raises about fairness, equal treatment, and allocative justice have not yet

been methodically explored in the academic literature.

54

 

As recently as the mid-19803, there was “...still relatively little effective
advocacy on behalf of emotionally disturbed children,” despite the emergence of formal
organizations such as the Alliance for the Mentally Ill and the Association of Child
Advocates (Friedman, 1986, p. 10). The historical emphasis has been advocacy on behalf
of mentally ill adults. Formal efforts to prod parents to advocate came about in the mid-
19805. Commentators stressed government involvement in establishing relationships with
advocacy groups, promoting CASSP objectives, and bringing about reform.

”The role of the state in relation to the community remains a major issue

...[U]ntil states see their role as being the establishment of general policy,

and the promotion of community-based systems of service, then the

system will remain less effective than it should be. A community-based

system in which major responsibility rests within the community has the

best chance of effectively serving youngsters and their families, of

achieving interagency coordination and collaboration, of generating

constructive advocacy, of maximizing accountability, and of establishing a

productive partnership between the public and private sectors” (Friedman,
1986,p.11)

The Health Care Reform Tracking Project is “a national study designed to
describe and analyze state health care reforms and their impact on children and
adolescents with emotional disorders and their families” (Stroul, et al., 1997, p. 386). It
found that 80% of states have mechanisms to assist in accessing care or appealing care
denials, for example, “appeals and grievance processes, 800 numbers, hotline/helplines,
client representatives, and ombudsmen” (Stroul, et al., 1997, p. 393). 80% of states also
monitor access (Stroul, et al., 1997, p. 393).

In order to be effective advocates, parents need not only be involved in treatment
planning but also have a voice in reform. Yet these seem not to be occurring: Health Care

Reform Tracking Project data reveal that family involvement “seems peripheral...The

55

fact that families are not more extensively involved in the reform process is
discouraging” (Stroul, et al., 1997, p. 398).

The proliferation of regional or national MCOs is worrisome particularly for the
CASSP principles of individualized, community-based care in which parents have a
strong voice. “[T]he use of national MCOs for managing mental health and substance
abuse care may complicate the help-seeking process... This may be particularly likely in
instances where...treatment [is] determined through telephone contact with a manager at
a national referral center using standardized referral processes and having limited
knowledge of local resources” (Scholle & Kelleher, 1998, p. 676).

Payers are concerned that reforms will lead to inappropriate utilization of
services, a trend exhibited among adults when financial disincentives (e.g., copayments)
are experimentally removed. However, a study of utilization and access among youths '
found that those enrolled in an HMO, but also having access to an SBHC, “seem to use
both systems of care appropriately” (Kaplan, et al., 1998, p. 32). Another study, while
finding that SBHCs “seem to increase adolescents’ use of comprehensive health care
services,” also found that such trends “do not seem to represent overuse; rather, they may
signify the patterns of use that occur when adolescents have free access to needed
services” (Anglin, et al., 1996, p. 329). What is more, utilization of costly emergency
care can be lower for youths with SBHC access (Kaplan, et al., 1998, p. 32).

Like the treatment of pediatric mental illness, prevention and early intervention
efforts are ideally multisector. Until recently, critics doubted the preventability of mental
illness. As recently as the 19705, prevention was a “fledgling...movement in mental

health” (Faenza & McElhaney, 1997, p. 401). However, 19903 research has raised hope:

56

prevention and early intervention do work (e.g., Gans, Alexander, Chu, & Elster, 1995, p.
1226). They are particularly apr0pos for youth, since their most pressing problems “are
more behavioral than biomedical” (Gans, et al., 1995, p. 1226). “The systematic,
population-wide application of preventive measures...can markedly reduce morbidity
from mental ill health among children in the Americas” (Eisenberg, 1992, p. 230).

There are many misconceptions or myths about the limits of prevention.
Understanding prevention’s multifactorial nature is difficult. The purposes of this section
are to 1) provide examples of such misconceptions, 2) show that America’s track record
on this issue has been poor, and 3) describe potential reforms.

Critics argue that the majority of children are emotionally healthy; thus,
prevention and early intervention rightly are a tiny blip on the radar screen of priorities
for resource allocation, and bioethics analysis. Evidence from medical economics
suggests otherwise, however, and gives moral urgency to this problem. Societal funding
of prevention has the potential to lower insurance premiums for everyone, even healthy
‘low risks,’ potentially allowing more individuals to afford coverage (Feldman, et al.,
1998, p. 668). Unfortunately, “this external effect has not been considered in cost-benefit
. analyses of disease prevention projects” (Feldman, et al., 1998, p. 668). Indeed, as
described elsewhere, methods for evaluating health care interventions may not accurately
do justice to prevention.

"The health care needs of children are different from those of adults” (England &
Cole, 1995, p. 138). To understand why both treatment and prevention of pediatric
mental illness requires other than a mere translation of interventions effective for adults,

one must understand child development. “[T]he science of mental health in childhood

57

and adolescence is a complex mix of the study of development and the study of discrete
conditions” (Satcher, 1999, p. 124). Physicians often possess inadequate knowledge of
child development, a hindrance that can lead to inappropriate treatment (Mechanic, 1999,
p. 76).

To fight misconceptions, in studying prevention we need to consider the best
possible unbiased data. An understanding of child development rebuts critics claiming
that certain etiological findings are merely politically-based. However, early work on
psychological development and social factors in causation of mental illness “was
characterized by dogmatism, conjecture, and wild and irresponsible statements”
(Mechanic, 1999, p. 73). Despite recent research data about risk factors, it remains “clear
how little we really know,” partly due to the great nUmber of complex variables
influencing development (Mechanic, 1999, pp. 73-4). For example, a variety of loving
family practices are likely to result in a healthy child; even a chaotic environment is no
certain predictor of pathology (Mechanic, 1999, p. 73). While blaming families is
inappropriate, parental attributes make a difference, and are predictors in determining
whether symptomatic children get treated (Mechanic, 1999, p. 75).

What makes thinking about these issues so difficult is that the developmental
process normally renders children a ‘moving target.’ Growing children’s behavior
typically fluctuates wildly, depending on the stage of development; great ambiguity may
surround attempts to determine whether a particular behavior is ‘normal’ or ‘abnorrnal,’
indicative of emotional disturbance, or just a trying time for parents. Moreover, the
chasm between normal and abnormal development is one of degree, not one of kind

(Satcher, 1999, p. 128).

58

Children are a product of more than genes, medical history, and temperament.
“[P]sychopathology in childhood arises from the complex, multilayered interactions of
specific characteristics of the child (including biological, psychological, and genetic
factors), his or her environment (including parent, sibling, and family relations, peer and
neighborhood factors, social and community factors, and the larger socio-cultural
context), and the specific manner in which these factors interact with and shape each
other over the course of development” (Satcher, 1999, p. 127). It follows that disordered
environments can lead to pathology (Satcher, 1999, p. 128). These differences from
adults present “unique opportunities for [early] intervention” and prevention (Satcher,
1999,p.128)

“Perhaps the most important context for developing children is their caretaking
environment” (Satcher, 1999, p. 128). Biological and environmental causative factors
work together: their “influences...are difficult to tease apart;” this complicates research
on causation and risk factors (Satcher, 1999, p. 131). Additional research on prevention
and early intervention is urged in the first Surgeon General’s report on mental health, “to
address pronounced gaps in the. . .knowledge base” (Satcher, 1999, p. 454).

“[E]arly intervention...is the key to effective treatment” (England & Cole, 1995,
p.138)

“[c]hildhood is an important time to prevent mental disorders...because

many adult mental disorders have related antecedent problems in

childhood. The field of prevention has now developed to the point that

reduction of risk, prevention of onset, and early intervention are realistic

possibilities...[P]revention does wor ” (Satcher, 1999, pp. 132-133).

Service sectors are beginning to acknowledge that “investment in prevention may be

cost-effective” (Satcher, 1999, p. 133). From the mid 1960s to the mid 19803,

59

nontraditional medical sectors were at the forefront of successful preventive efforts in
America, resulting in improved health status and long-term savings (Emanuel &
Emanuel, 1997, p. 161).

Preventive efforts geared toward pediatric mental illness are already, in fact,
widespread. “Despite widespread skepticism, effective prevention of some psychiatric
disorders is not only possible but is,...in some countries, virtually complete” (Eisenberg,
1992, p. 231; italics the author’s). Examples include the following. “[V]accination
against measles prevents its neurobehavioral complications; safe sex practices and
maternal screening prevent newborn infections such as syphilis and HIV, which also have
neurobehavioral manifestations. Efforts to control alcohol use during pregnancy help
prevent fetal alcohol syndrome” (Satcher, 1999, p. 133). Other examples, while not
strictly psychiatric, include addressing dietary deficiencies (Eisenberg, 1992, pp. 231,
234). Prevention in specific areas, such as nutrition, vaccination, safe sex, and maternal
health is much more effective now than in the past. However, merely providing
educational information is insufficient. Preventive interventions and health promotion
ideally occur in a caring environment. Creating an effective caretaking environment for
children, partly through prenatal care and family planning, may be America’s ‘best shot’
at preventing mental illness (G. Osborn, personal communication, May, 2000).

Examples of cost-effective preventive interventions for mental illness follow. A
1989 article (Burton, et al.) described a comprehensive mental health program for
employees of a large bank. This intervention, a form of employee assistance program
(BAP) prioritized prevention and early intervention. The intervention was demonstrated

to be cost-effective: “[t]otal hospital days and average length of stay decreased by 43%

6O

whereas total inpatient psychiatric hospital charges decreased by $309,518” (Burton, et
al., 1989, p. 363). When considering the cost of the program, the total net savings on
psychiatric care was 14.7%; yet the quality of care improved (Burton, et al., 1989, p.
366). From 1984 to 1988, mental health costs as a proportion of medical plan costs fell
from almost 14% to about 12% (Burton & Conti, 1991, p. 312).

The above intervention involved adults. An example of a preventive intervention
for children that has proven cost-effective is a neonatal screening program for several
congenital metabolic disorders, including phenylketonuria (PKU) in Japan, begun in 1977
(Hisashige, 1994). Untreated PKU can result in retardation, a serious emotional
disturbance. Early intervention involves straightforward dietary alterations. Costs for
untreated individuals afflicted with retardation as a result of PKU include, e.g.,
institutionalization costs, foster care, and special education (Hisashige, 1994, p. 387).
Cost-benefit analysis (CBA) revealed that the program was cost-beneficial (Hisashige,
1994, pp. 382, 387). A 1975 study showed that fetal heart rate monitoring during labor
can prevent roughly 1/2 of cases of pediatric mental retardation that would have resulted if
unmonitored; cost analysis revealed that spending $100,000 annually in maternal/fetal
care could “prevent an anticipated long-term expenditure of almost $2 million”
(Quilligan & Paul, 1975, pp. 96, 99).

Relatedly, a 1990 study (Porath, McNutt, Smiley, & Weigle, p. 31) performed
CBA and cost-effectiveness analysis (CEA) on a program vaccination program for
cytomegalovirus (CMV). Congenital infection with CMV is the leading cause of
retardation in America. Routine immunization was found to be cost beneficial; such

programs would save $2.5 million annually (net) (Porath, et al., 1990, p. 31). The

61

discount rate used was 5%. A genetic screening program begun in Michigan in 1977 has
prevented some cases of mental retardation, cost-effectively (Thoene, Higgins et a1 1981,
335). The program screened for multiple genetic and metabolic factors that cause
retardation. The program would need to prevent only three or four cases of retardation
annually to generate a cost-effective return on the program investment (Thoene, Higgins,
Krieger, Schmickel, & Weiss, 1981, p. 339).

The problem is lack of social will, not preventive interventions’ efficacy (Faenza
& McElhaney, 1997, p. 403). America has “[failed] to adopt prevention as a national
mental health priority” (Faenza & McElhaney, 1997, p. 403). “[T]he greatest barrier to
better child mental health is failure to muster the political will to apply what is known to
the care of mothers and children in all sectors of society” (Eisenberg, 1992, p. 230).
Reasons for this failure include historical neglect and under funding of mental health
care, and stigma (Faenza & McElhaney, 1997, p. 407). After distributing resources
toward treatment, yet still failing to “adequately provide services for large numbers of
children...,” few resources remain for prevention (Faenza & McElhaney, 1997, pp. 404-
5). Political battles fester over what constitutes just resource allocation, e.g., between
advocates for at-risk populations potentially benefiting from prevention, and mentally ill
people needing treatment. Such ideological discord thwarts the cooperation needed to
advocate for funding (Faenza & McElhaney, 1997, pp. 406-7). These battles illustrate the
phenomenon that “[f]rom the standpoint of the community, in contrast to that of the
individual, decisions about undertaking preventive measures require a weighing of
competing social aims” (Eisenberg, 1992, p. 238). These battles have been analyzed with

respect to other disorders in the bioethics literature, but have not focused on pediatric

62

mental illness. Indeed, a goal of this thesis is to address that deficiency. Experts call this
dilemma “one of the most important [human services issues] facing policy-makers in
children’s mental health” (Friedman, 1986, p. 8).

Economic boundaries, as well as scarce resources, dictate whether implementing a
prevention program is the best choice for investing a given amount of money. For
example, one study concluded, “[t]he cost-effectiveness of clinical interventions for
various risk behaviors among adolescents is unknown. It appears that preventive
interventions would have to eliminate 15% of adolescent morbidities overall to break
even in economic terms” (Gans, et al., 1995, p. 1226).

Issues that need addressed before policymakers can make informed decisions
include: prevalence and costs of pediatric mental illnesses, costs of prevention programs,
and at what point interventions prove cost-effective (Gans, et al., 1995). What is the
potential overall increase in the nation’s mental health? Is a given intervention the best,
most rational use of the money we already spend on health care? Policymakers will need
to provide rational, ethical explanations of how they arrive at their decisions. Should
America continue to spend a disproportionate amount of money on care during the last
six months of life, instead of spending more on prenatal and early childhood care? Should
all coronary artery bypass grafts for the oldest old (over 80) be funded? What
combination of care constitutes the best value for our health care dollar? Consideration of
such questions involves shifting our nation’s spending emphasis, not necessarily bedside
rationing. In view of our lack of a single-payer system, the overarching context of this
argument is that we must maximize access to health care by making the most efficient

use of expenditures (G. Osborn, personal communication, May, 2000).

63

Criticism of preventive efforts as premature was apropos in the past, especially in
the 19503, when treatment ideology, “rhetoric,” and interest shifted from the hospital to
the community and the continuum of care approach. Advocates “accepted as an article of
faith (but with little persuasive evidence) that the population at risk could be identified,
and that early detection and treatment was the key to...more effective use of fiscal
resources” (Grob, 1991, p. 199). Federal recognition of the need to enlist multiple social
sectors in any effective preventive effort began as early as 1962. Prior to passage of the
Community Mental Health Centers (CMHC) Act (1963), one official asserted, “[w]e
believe that primary efforts to prevent mental illness must start in childhood and depend
on the work of many social institutions-for example, the family, the church, the school,
and public and private health and welfare agencies” (Grob, 1991, p. 205).

The immense social, economic, and taxpayer burden of preventable, untreated, or
inadequately treated mental illness should concern us all, and functions as moral
ammunition for prevention and early intervention advocates. Moreover, prevention and
early intervention can save money. “The rationale...is that early treatment will prevent
not only current suffering, but perhaps also future MH/SA [mental health/substance
abuse] expenditures” (Schowalter, 1998, p. 170). Early intervention shows potential to
“decrease long-term cost” (Cutler, et al., 1998, p. 374). Increased resource allocation to
prevention may also offset access problems aggravated by late 2011: century de-emphasis
of inpatient treatment (Cutler, et al., 1998, p. 376).

Radical changes in economic incentives seem warranted. We must work toward
financial incentives that promote prevention and anticipatory health guidance. Such

incentives should be economically and ethically defensible. An extant example of such

incentives is found in the British National Health Service (NHS), in which primary care
physicians receive bonuses for performing preventive procedures (G. Osborn, personal
communication, May, 2000).

One effect of the spread of managed care is that “many health insurance programs
fail to cover many services, especially preventive services...even when they are
efficacious and cost-effective” (Emanuel & Dubler, 1995, p. 325). Moreover, “[fjinancial
incentives in the current system encourage physicians to offer high-technology
procedures rather than primary and preventive care” (Emanuel & Dubler, 1995, p. 326).
Managed care’s performance is admittedly mixed: “studies consistently demonstrate
greater use of preventive tests and procedures among managed care enrollees” (Emanuel
& Dubler, 1995, p. 326). Structural features of managed care, including its prepaid nature
and capitation, have the potential in theory to promote preventive and holistic care
(Armstead, Elstein, & Gonnan, 1995, p. 29). Averting unnecessary psychiatric
hospitalization would certainly reduce costs, and liberal coverage for enrollment in pilot
or innovative programs such as those described below would likely improve access to
multisector, multidisciplinary, coordinated care.

However, corporatized models of medical care do pose major limitations as well.
Many mentally ill children are covered by Medicaid; and “[f]ew Medicaid beneficiaries
remain with a single plan for an extended period of time” (Armstead, et al., 1995, p. 35).
The difficulty of monitoring effectiveness and quality of prevention and early
intervention efforts is heightened by rapid enrollment turnover. This dissuades managed
care organizations [MCOs] from investing in prevention. “[T]he benefits of preventive

services accrue only after years of expenditures...[prevention investments] make fiscal

65

sense only if the [MCOs] expect patients to stay enrolled for years” (Emanuel &
Emanuel, 1997, p. 170; see also Feldman, et al., 1989, p. 386; and Schowalter, 1998, p.
169). It must constantly be remembered that MCOs are driven by a corporate,
competitive model, and are motivated to behave accordingly.

“[A] stock may fall not only because of a company’s loss, but also if its

profits do not keep rising at an acceptable rate. This fact has kept the

corporate fear and focus on ‘now,’ with little incentive” for long-term

preventive efforts (Schowalter, 1998, p. 172).

Critics argue that such problems will work themselves out in the competitive
health care marketplace, provided the marketplace is left alone to right itself (e.g.,
unfettered by government regulation). Demand for MCOs that are better at promoting
prevention, they say, will encourage the other, ‘bad’ MCOs to improve or correct their
policies. However, a flaw of this ideal corporate model is that it likely will take decades
for this process to play out. This represents generations worth of unmet need and
unnecessary suffering (G. Osborn, personal communication, May, 2000).

In the Recommendations section, a greater role for schools is urged. Such an
approach will admittedly encounter hurdles. Commentators observe barriers and
resistance to implementation of preventive techniques in the educational sector. These
include 1) an inability to understand the concept of prevention due to its “diffuseness--
effectiveness results from the absence of something occurring, rather than a product
materializing before one’s eyes;” 2) parochialistic thinking; 3) societal “preference for
the status quo;” 4) failure to consult with implementers (teachers); and 5) schools’
financial incentive to shift costs of such programs to other sectors (Meyers & Parsons,

1987, pp. 113, 141). Timing of implementation, background knowledge about the

disorder, and design fidelity toward one target population also appear crucial in launching

66

prevention interventions. In the past, programs have failed because they were
prematurely launched, before an adequate knowledge base was constructed on the target
illness. Insufficient information had been gathered on incidence, etiology, and diagnostic
and research methods (Meyers & Parsons, 1987, pp. 112-113). To convince schools,
known for their restricted budgets, to invest faith and funds in prevention, implementers
must arrive prepared to demonstrate the potential cost-effectiveness and long term
savings of the program (Meyers & Parsons, 1987, pp. 113, 144). “Investments in
prevention...are ultimately political and social as well as economic and clinical issues”
(Phillips & Holtgrave, 1997, p. 23). The data necessary to facilitate the welcomed,
successful adoption of school-based preventive interventions has been gathered in the last
decade and is referred to below.

Even with a national emphasis on prevention, it is bad policy to overpromise with
regards to primary prevention. Secondary prevention and treatment should also be
emphasized, especially for cases where primary prevention fails. Even the best possible
knowledge base, data, or research methods will not eliminate mental illness caused by
genetic or biological factors (G. Osborn, personal communication, May, 2000). No
prevention or early intervention program can or should be expected to prevent all cases
(e.g., see Faenza & McElhaney, 1997, p. 406; Gans, et al., 1995; and VandenBos &
Miller, 1980, p. 142); nor can we expect them to be free of iatrogenic effects. “What is
not possible now, or in the foreseeable future, is the prevention of all mental disorders”
(Eisenberg, 1992, p. 231; italics the author’s). Temporal factors unique to children add

one more constraint. “[T]he window of opportunity is limited” (Piotrkowski, et al., 1994,

p.136)

67

Late 20th century bioethics, as well as managed care, appears guilty of
insufficiently appreciating prevention’s potential benefits. “Research and intervention
involving primary prevention (related to mental health and psychology) have grown
dramatically in the past 10 years. However, little attention has been paid to ethical issues
in primary prevention” (Trickett, 1992). Prevention and early intervention remain weak
stepchildren of both medical care and economics, “under-researched and under-funded”
(White, 1997, p. 151). Current economic methods place prevention programs “at a
distinct disadvantage,” relative to other healthcare spending (Ganiats, 1997, p. 12; see
also Phillips & Holtgrave, 1997). This issue is explored further in Chapter 2.

A number of programs have sought to prevent mental illness or promote mental
health. While the programs below are based in home, school, and clinical settings, others
focus on additional social sectors frequented by mentally ill children, including criminal
justice. For example, diversion programs, focusing on secondary prevention and targeted
toward juvenile offenders, “have sought to avoid the ineffective and potentially harmful
effects of legal processing...by changing the names, location, focus, and procedures
used” (VandenBos & Miller, 1980, p. 135). They can be cheaper than regular legal
processing, and exhibit “treatment effects [which] extend beyond the individuals”
(VandenBos & Miller, 1980, p. 135). Results of one intervention included “significant
psychological changes...in self-esteem[,]...impulse control[,]...[and] attitude;”
“significantly higher level [functioning] than the control group;” “better work histories;”
“better interpersonal relations;” and “less likelihood of later legal difficulties”

(VandenBos & Miller, 1980, p. 135).

68

What is noteworthy about the programs below is the degree of innovation and
creativity built into their designs. These programs flow against the prevailing tide of the
Western biomedical model of health care. Both fee-for-service and managed care
payment schema have traditionally adhered to this model. To a great extent, bioethics has
also adopted this acute-care model, at the expense of sufficient analysis of challenges
posed by disease prevention, health promotion, and cooperation between medicine and
other sectors in public health. Failings of the biomedical model are explored later. First,
innovative, effective prevention programs will be introduced.

Certain features are common to many of these programs, contribute to their
effectiveness, and provide guidance for policy and funding. Such features include holistic
interventions, address of multisector needs, attention to risk factors beyond the
individual, a longitudinal focus, addressing problems as early as possible,
interdisciplinary providers, and large-scale or multi-state Operations. Many of these
features unite to promote an effective “caring” or “caretaking” environment (G. Osborn,
personal communication, May, 2000).

Project Head Start

Introduced in 1965, Head Start “is probably this country’s best known prevention
program,” despite its original intent, early intervention (Satcher, 1999, p. 133). It is
countrywide, but there is “considerable program variation across localities” (Satcher,
1999, p. 133). Its goal is to promote social and cognitive functioning of poor preschool
children; its successes include “lower[ed] enrollment in special education
and...enhanc[ed] rates of high school graduation” (Satcher, 1999, p. 134). However, the

reliability of research findings about Head Start’s effectiveness is hindered by an absence

69

of “national randomized controlled trial[s] to evaluate the program as originally
designed” (Satcher, 1999, p. 133). Its original design is temporally longitudinal (eight
weeks’ duration), and holistically oriented, “includ[ing] a center-based component and a
home visit by community aides, focusing on social, health, and education services”
(Satcher, 1999, p. 133). Head Start offers long-term benefits pertinent to mental health
promotion: “better peer relations” and “less antisocial behavior” among them (Satcher,
1999, p. 134). Over 15 million children have been served (Satcher, 1999, p. 133).

Despite these successes, Head Start has borne its share of criticism. Its mental
health component has been called “a weak link in [the program’s] comprehensive
services strategy;” observed problems include insufficient resources and barriers to
service access (Piotrkowski, et al., 1994, p. 135). “For too long, mental health has been
Head Start’s stepchild. Head Start can fulfill its full promise by, once again, becoming a
laboratory for innovative practices in mental health” (Piotrkowski, et al., 1994, p. 138). In
fairness, though, the lack of both controlled studies and sufficient long-term outcome data
makes it difficult to evaluate the practical import of these observations.

Cost-benefit analysis of a program with similar goals as Head Start (the Perry
Preschool program) found that

“the economic return from providing early education to children in

poverty far exceeds the costs...the estimated economic benefits of

preschool education are quite large relative to its costs. In fact, the
estimated rate of return on preschool education exceeds the average rate of

return on investments in the stock market over the past 30 years” (Barnett,

1998, pp. 204, 206).

Elmira (NY) PrenMEarlv Infflcy ProiectLEimirfiflE)

This program is “an excellent example of a preventive intervention that targeted

an at-risk population to prevent the onset of a series of health, social, and mental health

70

problems” (Satcher, 1999, p. 134). Its attention to the child’s environment and sources of
social support (mothers) represents a holistic departure from the traditional acute-care
biomedical model. It was also longitudinal: birth to age two. The intervention consisted
of “parent education [frequent nurse home visits], enhancement of the women’s informal
support systems, and linkage with community services [including free transportation]”
(Satcher, 1999, p. 135). Children were developmentally screened annually, and there was
a noteworthy follow-up period (fifteen years). Unlike Head Start, its design was
randomized and controlled. Its effects were “positive and enduring;” mothers exhibited
fewer abusive, neglectful behaviors, and were “more involved with their children”
(Satcher, 1999, p. 135). Children exhibited “fewer coping problems” (Satcher, 1999, p.
135). But perhaps most exciting were the 15-year follow-up findings:

“[W]omen who were visited by nurses during pregnancy and infancy had

significantly fewer subsequent pregnancies, less use of welfare, fewer

verified reports of abuse and neglect, fewer behavioral impairments due to

use of alcohol and other drugs, and fewer arrests. Their children, now

adolescents, reported fewer instances of running away, fewer arrests,

fewer convictions and violations of probation, fewer lifetime sex partners,

fewer cigarettes smoked per day, and fewer days having consumed alcohol

in the last 6 months. The parents...reported that their children had fewer

behavioral problems related to use of alcohol and other drugs” (Satcher,

1999,p.l35)

This program is also noteworthy in its fidelity to the concept that the earlier
preventive efforts are begun, the better. “The most logical place to start is at birth,
possibly even before, with psychologically informed management of ante- and post-natal
care” (White, 1997, p. 151).

Economically, Elmira PEIP provides much greater benefit to the higher-risk

subsample of families, than lower-risk families. In the case of the former, government

savings were significantly higher than government costs of the program ($24,000 versus

71

$6,000 per family) (Karoly, Greenwood, & Everingham, 1998). For lower-risk families,
the government loses money. These numbers did not include non-govemment (societal)
benefits such as costs of prevented crimes or higher beneficiary income. The authors
estimate that adding in these societal benefits would raise overall savings by $6,000 per
family. Net savings, in dollars per child, for the hi gher-risk families was $18,611 (Karoly,
et al., 1998, p. 86). The authors guess that because children were only followed to age 15,
thus benefits as adults were not counted, the savings figures underestimate the true
savings to government (Karoly, et al., 1998, p. 87). Savings accumulate after only three
years of enrollment in the program (Karoly, et al., 1998, p. 88).

The authors acknowledge the controversy of discounting and explain that their
chosen rate (4%) fell within a range of commonly applied rates (Karoly, et al., 1998, p.
99). Because this program’s benefits accrue over such a long time, even tiny alterations in
the rate chosen significantly affect benefits and savings numbers. In other words, the
program is sensitive to discount rate fluctuations. But even experimental manipulation of
the rate within the commonly-used range does not affect the conclusion that both
government and society reap net benefits (Karoly, et al., 1998 p. 99). Showing cost
effectiveness of mental illness prevention/early intervention programs is extremely
complex and difficult, due to the multicontextual nature of psychopathology (G. Osborn,
personal communication, May, 2000). This clearly applies to the Elmira PEIP, PMHP,
and Head Start cost effectiveness analyses that have been performed.
Pn'flarvMentallHealth ProieQIPMHID

PMHP, over forty years old (a rarity for any program [Hi ghtower, 1997, p. 209]),

is noteworthy in its site of operation: schools (Satcher, 1999, p. 135). While it is funded

72

systematically in only seven states (Satcher, 1999, p. 135), it has experienced “significant
growth” in the last two decades (Hightower, 1997, p. 208). Its clientele reflects its early-
intervention focus: “less disturbed versus more disturbed children” (Hightower, 1997, p.
208). Its design explicitly acknowledges the interrelatedness of school achievement and
emotional well-being, as well as the immense social cost of mental illness. “Children who
fail to profit from the school experience are often at high risk for developing major
mental disorders and many become chronic [tax] burdens to society. . .Far from vanishing,
early problems tend to root and spread to many costly areas, including substance use,
delinquency, and serious mental health problems” (Hightower, 1997, pp. 191, 210).
Longitudinal (ten years), replicated research and follow-up reveals this to be true: “when
ignored, children’s early [school] adjustment problems [result] in long-term negative
outcomes” (Hightower, 1997, p. 207).

PMHP’s goals, therefore, are “early detection and prevention of...school
adjustment problems” (Satcher, 1999, p. 135), and “[reduction of] adjustment difficulties
as soon as possible” (Hightower, 1997, pp. 191-2). Its features include screening by
inexpensive nonprofessionals. While the Surgeon General classifies this as a “successful
mental health intervention,” its main focus and area of success is academic achievement
(Satcher, 1999, p. 136; Hightower, 1997, p. 192).

The program is cost-effective, and “has had a track record of demonstrated
success...in a variety of settings [including urban, rural, multiracial and multiethnic
schools]” (Hightower, 1997, pp. 193, 209). Moreover, it “exemplifies how prevention
programs can root, evolve, and adapt” (Hightower, 1997, p. 209). At long-term follow-

up, children “had significantly fewer problems” (Hi ghtower, 1997, p. 208).

73

One program that has indirectly sought to prevent childhood mental illness, via
primary prevention of child abuse and neglect, is the Hawaii Healthy Start Plan,
incamated at the federal level as Healthy Families, or the Hawaii Model. This
intervention identifies high-risk children at birth; for the next five years,
paraprofessionals coordinate a range of services for the children and their families (M.
Woolson, personal communication, 1995).

The biomedical model is “a philosophic tradition in medical diagnosis” (Kessler,
1990, p. 141). There is a pervasive tradition within Western biomedicine of disease-
specificity and ideological bias toward acute illness, not prevention. This section provides
supporting arguments for this often-made assertion. The phenomena of a lack of a
‘lifespan approach’ is also explored. Examples of how the Western biomedical model’s
dominance harms patients are supplied. Arguments of critics are also considered.

The biomedical model attends well to acute illness, but not chronic illness and the
multisector care the latter requires (Stroul, Pires, Armstrong, & Meyers, 1998, p. 121).
Relatedly, the ideal of hospitalization to completely cure acute illness does not translate
well to chronic illness like mental illness, which often requires addressing deficits of the
child’s environment (Woolston, 1991, p. 894). Limitations of the Western biomedical
model, especially its rigid, inexorable reductionism, include the following. First is the
Cartesian mind-body dualism, also called positivism (Cohen, 1993, p. 510). Second is a
tendency to view patients as machines to be repaired (“mechanistic [or “Newtonian”]
thinking” [F055, 1994, p. 294]). Symptom information is elicited through history taking
and physical examination (Armstrong, 1987, p. 1215), with the physician in an

“observational mode,” not a “relational [or “dialectical”] mode” (Cohen, 1993, p. 510;

74

Engel, 1992, p. 8). This encourages physicians to perceive as irrelevant contextual factors
of a patient’s existence, such as illness meaning, feelings and worries, lifestyle, and
power relationships within a family and community (e.g., Fee, 1993, p. 1481; Lyman,
1989). It also promotes “failure of empathy” (Kessler, 1990, p. 140). Third, the cause of
illness is “somatic or organic in etiology,” not social (Lyman, 1989, p. 599). Fourth, the
illness “is to be diagnosed by biomedical assessments...and treated and managed
according to medical authority,” (Lyman, 1989, p. 599). “Only the physician can have
access to [the] truth;” patients are “subservient” (Armstrong, 1987, p. 1214). Fifth is the
“reductionist doctrinez” “the reduction of illness to the ‘lesion’” (Armstrong, 1987, p.
1214). Biological reductionism has elsewhere been defined as “explanations of
phenomena occurring at several levels (e.g., social, psychological) that are sought at a
single level (biology)” (Cohen, 1993, p. 510). For physicians strictly adherent to the
biomedical model, “’science’ and the scientific method have to do with the understanding
and treatment of disease, not with the patient and patient care” (Engel, 1980, p. 538).

The biomedical model is also called the disease model; diseases are perceived as
having “an existence independent of the patient” (Kessler, 1990, pp. 141-2). A
“categorical approach” is taken; “[d]ifferent diseases represent the manifestation of
different disease processes” (Kessler, 1990, p. 141). Strict fidelity to the biomedical
model leads physicians to disregard patients’ contextual life factors because “one
conceptualizes the etiology and manifestations of mental disorders as entirely impersonal
or alien, as not to be found in or relevant to the life history of the patient” (Kessler, 1990,
p. 141). “[I]n no real sense is the patient seen as an author of his symptoms or at least as

an important collaborator in their production” (Kessler, 1990, p. 144). This is in

75

contradistinction to “dimensional” approaches, which view disease as “quantitative
variations from normal [and] ...diagnoses...[as] mental constructs” (Kessler, 1990, p.
141). Biopsychosocial and other alternative models have been proposed to better account
for the social construction of illness (Armstrong, 1987, p. 1213; Engel, 1980; see also
Foss, 1994). Advocates of such models claim that increased attention to social aspects of
disease need not detract from achieving scientific goals in medicine (Anderson, 1982, p.
243).

“One [can] be scientific at the bedside after all!”... “Pure objectivity and

total detachment of the investigator from his material no longer constitute

inviolable criteria for what is to be accepted as science or scientific”

(Engel, 1992, pp. 5-6).

Biopsychosocial models are not inconsistent with good science, scientific rigor, or
even reductionism. Although reductionism has serious limitations, and in some senses we
have taken it as far as we can conceptually, reductionism can be effective and useful in
thinking about certain aspects of health care, such as applying knowledge of small-
particle physics to oncology. The biopsychosocial model can thus help render outcomes
of good science more efficacious in clinical care. We should maximize the strengths of
reductionism, but not be limited by its flaws (G. Osborn, personal communication, May,
2000). Some claim that nothing short of “social and cultural revolution” is required to
prompt a paradigm shift to a biopsychosocial model (Hewa & Hetherington, 1995, p.
137).

In biomedicine, illness is seen along a continuum from normal to abnormal
(Kessler, 1990, p. 141). What is ‘normal’ is a problematic concept. Biomedicine defines

“’norrnal’... in the statistical sense as referring to the usual or common” (Armstrong,

1987, p. 1215). Yet, careful analysis of physiological processes underway daily in any

76

human being is likely to reveal “hundreds if not thousands of criteria by which any
individual is in the ‘abnormal’ group” (Armstrong, 1987, p. 1215). We would hardly
label such natural variations ‘disease’ (Armstrong, 1987, p. 1215). Abnormality (disease)
results when individuals cannot function according to societal expectations or norms
(Armstrong, 1987, p. 1215).

Components of the biomedical paradigm can harm those needing mental health
care. The Cartesian mind-body dualism is thought to contribute to stigma (Satcher, 1999).
Also, certain chronic, relapsing disorders poorly explained by medical science and with
psychosocial components have been labeled psychosomatic (Helman, 1985). In this way
physicians “psychologize” the illness, “shifting responsibility [and blame]...to patients’
emotions, personality, or lifestyle,” and away from the physician (Helman, 1985, pp. 1,
22). The biomedical model is powerful enough to mold patients’ interpretations of the
meaning of their illnesses (Helman, 1985, p. 21).

The biomedical model also contributes to improper diagnosis, for example of
schizophrenia (Kessler, 1990, pp. 140, 146). “Employing only the biomedical
model...often results in...‘a strenuous and devoted attempt to force nature into
conceptual boxes’” (Lyman, 1989, p. 600). The physician is encouraged to “find as
quickly as possible the simplest explanation, preferably the diagnosis of a single disease,
and to regard all else as complications, ‘overlay,’ or just plain irrelevant” (Engel, 1980, p.
538). Yet in the real world, “disease is a value-laden concept, not [an] objective,
theoretical notion” (Daniels, 1989, p. 678). “[W]hat is health is context specific to the

individual and to the community” (Rodd, 1989, p. 895).

77

Overreliance on the medical model can also result in poorer functional outcomes
as a result of reduced caregiver expectations (Lyman, 1989, p. 599). Once someone is
labeled ‘mentally ill’ (or ‘Alzheimer’s,’ in the case of the cited article), caregivers are

’9 6‘

quick to accept “an oversimplified diagnosis and prognosis; even normal behavior is
interpreted in terms of disease stages...The result may be a self-fulfilling prophecy of
impairment.” Granted, mental illness is not typically degenerative. However, these beliefs
readily translate to caregivers for mentally ill persons.

Another example of potential harm to patients is that it undermines the physician-
patient relationship. Training in the biomedical model encourages physicians-to-be to
“[turn] away from the patient and his experience of the illness” and can discourage
listening (Kessler, 1990, pp. 143-4). Outcome is potentially threatened by failing to
discover the individual’s life context. “To be effective, the diagnosis and treatment of
mental illness must be tailored to individual circumstances, while taking into account age,
gender, race, and culture and other characteristics that shape a person’s image and
identity” (Satcher, 1999, p. 456). Grant (1991, p. 926) criticizes pediatric psychiatric
training as: “overemphasi[zing]...individual deviance, disease, and psychopathology,”
and asserts that academic child psychiatrists should redirect education towards a more
holistic, community-oriented, public health and preventive orientation. Moreover,
empathy and compassion are not merely niceties or therapeutic ‘frills,’ they are necessary
for accurate diagnosis and treatment, as well as truly scientific medicine. “The
biomedical model encourages sympathy...but not empathy” (Kessler, 1990, p. 145).

The biomedical model averts focus away from weighty concerns in pediatric

mental illness. “[T]he medicalization of hyperactivity in children shifts attention from the

78

school and family situation of the child to an individual/physiological deviance
designation” (Lyman, 1989, p. 599; see also Conrad & Schneider, 1980). It also
encourages paternalistic thinking (Lyman, 1989, p. 602; see also Hummelvoll & da Silva,
1994, p. 10). “[T]he doctor knows best!” (Goodstein, 1975, p. 179). It tends to preserve
the status quo, stifling social debate and health care reform (Lyman, 1989, p. 602).
Commentators lament that many people needing mental health care do not get it. Stigma,
misunderstanding, insufficient numbers of qualified providers in urban areas, and cost are
cited as usual culprits. However, another barrier may be people’s perception of the
Western biomedical model. “It appears at least possible that the face of modern
technological medicine...actively frightens off the most vulnerable consumers” (Little,
1981, p. 188). Lack of analysis of caregiving is also harmful. Rigid adherence to the
biomedical model “overlooks the social construction” of mental illness, and ignores “the
impact of treatment contexts and caregiving relationships on disease progression”
(Lyman, 1989, p. 598).

Bioethics has also been criticized (from within) as myopically adhering to
assumptions of the Western biomedical model. Early 19905 ethical analyses of dilemmas
in managed mental health care were commonly “misfocused,” “engag[ing] the issues at
precisely the wrong level” (Boyle & Callahan, 1995, p. 20).

“[E]arly complaints...arose from a moral analysis that assumed an

idealized set of moral practices rooted in traditional patterns of medicine

(such as Marcus Welby-type doctor/patient relationships, unlimited

choices for all patients, and Cadillac care no matter the cost). The primary

focus here was the individual patient and physician. This focus completely

neglected the social fabric in which these individuals were embedded:

issues of broader access to care or of standards for reasonable care” (Boyle
& Callahan, 1995, p. 20).

79

Confinement of such analysis to the level of the physician/patient dyad oversimplifies
what are really complex, multidimensional moral conflicts (Boyle & Callahan, 1995, p.
20). Moreover, such a narrow viewpoint ignores conflicts at other levels, for example
“between a mental health services manager and all eligible enrollees in a [managed care]
plan” (Boyle & Callahan, 1995, p. 20). It also discourages analysis of societal-level
problems such as disparities in health status and access to care. “[P]hysicians
predominantly worry only about the well-being of their personal patients” (Emanuel &
Emanuel, 1997, p. 155). The psychiatric profession admittedly has a better record than
other specialties at attending to these issues. “[Psychiatry has] been alone in addressing
these issues for the past 20 years” (Pasnau, 1987, p. 147). Moreover, the biomedical
model, combined with increased emphasis on economic models of accountability
(medicine as commodity), “ignores or minimizes the importance of other domains of
accountability. At best, there is a minimal role for public health, for equity of access...
and for community benefit” (Emanuel & Emanuel, 1997, p. 167).

“[T]he ‘holistic’ view of human life” represents “[t]he concept of the whole
person” (Hewa & Hetherington, 1995, p. 135). Western biomedical model assumptions
influence the structure of the “traditional mental health paradigm;” for example, bias
toward treatment within the physician’s office and treatment outside the home and
community (Piotrkowski, et al., 1994, p. 136). This is worrisome since such “approaches
may not be effective for those children with the most disturbing behaviors” (Piotrkowski,
et al., 1994, p. 137). More recent treatment paradigms, such as CASSP, involving
holistic, intersector approaches to care, have had to fight against the powerful biomedical

model. Strictly medical sector management of mental illness also reduces the

80

effectiveness of treatment and prevention. “[T]he goal of services must not be limited to
symptom reduction but should strive for restoration of a meaningful and productive life”
(Satcher, 1999, p. 455). “[T]here is a growing body of evidence indicating that social
environments can have a profound impact on mental health” (Meyers & Parsons, 1987, p.
133). Indeed, one factor identified as critical to the effectiveness of certain prevention
programs is “tailoring the system to the adolescent, not the adolescent to the system”
(VandenBos & Miller, 1980, p. 145). This can mean addressing a youth’s perceived need
for help with “a boss, teacher, parent, or friend” (VandenBos & Miller, 1980, p. 145),
assistance more effectively and cheaply provided outside the medical context.

It is paradoxical that traditional insurance “foolish[ly]” (Mechanic, 1999, p. 142)
provides wider coverage for inpatient than outpatient services. After all, a main cause of
furor over costs of psychiatric care was the explosion of private hospital construction,
often targeting adolescents. Insurance structured this way has clearly impacted provider
behavior, “provid[ing] strong incentives for hospital care that may not really be needed
and encourag[ing] a medical approach to mental health problems” (Mechanic, 1999, p.
132). Parity legislation will not be a panacea if it merely extends coverage for this sort of
insurance; such ‘reform’ will not address the “enormous sociomedical needs that require
a thoughtful integration of traditional medical and other types of services” (Mechanic,
1999,p.142)

The first Surgeon General’s report on mental health claims that the current mental
health care system is “rooted in a population-based public health model,”

“characterized by concern for the health of a population...and by

awareness of the linkage between public health and the...environment.

Public health focuses not only on traditional areas of diagnosis, treatment,
and etiology, but also on epidemiologic surveillance of the health of the

81

p0pulation at large, health promotion, disease prevention, and access to
and evaluation of services” (Satcher, 1999).

Adherence to this model is not as strong today as it may have been historically, partly due
to political attempts by the psychiatric profession to gain legitimacy, and the increased
power of third-party insurers in dictating what interventions are covered. The result has
been preventable human suffering:

“[M]any lives are wasted, children and adults die and are disabled, and

communities fall apart for our failure to invest in a public health approach

to many of the mental health and social problems that face Americans and

their communities today” (Faenza & McElhaney, 1997, p. 407).

The psychiatric profession has combated repeated ideological assaults by other
specialties that “psychiatry [is] not part of medicine, and that psychiatric practice rest[s]
on superstition and myth” (Satcher, 1999). One reason for these attacks is that oftentimes,
once a disorder’s etiology and interventions are understood, ‘ownership’ is “transferred
from the mental health field to another medical specialty” (Satcher, 1999; see also
Pasnau, 1987, p. 150). A recent example is Alzheimer’s disease (Lyman, 1989). One way
to combat such assaults, and retain professional authority and economic status, is to
encourage more rigid adherence to the biomedical model, de-emphasizing affinity with
medical ethics (Youngner, 1997, pp. 309-311; see also Cohen, 1993). Psychiatry has a
long history of better attending to “the whole patient” than other specialties; it also has
had deeper community and family interactions, within a variety of social sectors (Pasnau,
1987, pp. 145-6).

Managed care also demonstrates biases toward acute interventions over both

community-based interventions and prevention programs. Chronically ill people are

particularly burdened by plans offering ample coverage and choice for short-term, acute

82

office-based care, while placing greater restrictions on nontraditional, community-based,
specialized, and long-term services that may best address the special needs of vulnerable
populations with complex health histories (Fox, et al., 1993, p. 546; see also Pomerantz,
1999). “[S]everal of the services that children with special needs might require, such as
diagnostic procedures, laboratory services, and ancillary therapies, often would not be
covered in the hospital outpatient setting” (Fox, et al., 1993, p. 548). Home health
benefits also have very strict eligibility criteria (Fox, et al., 1993, p. 550). Also, because
so many of its dollars are devoted toward institutional care, Medicaid has had “limited
opportunities to maximize the use of...funds to develop community mental health care”
(Mechanic, 1999, p. 139).

Often, plans apply criteria that in practice deny service access to patients not
“expected to improve significantly over a short period of treatment” (Fox, et al., 1993, p.
548). This “poses a particular obstacle to care for children with chronic illness or
disabilities” (Fox, et al., 1993, p. 552). Sometimes this criterion combines with
requirements that the provided service is “needed to restore lost function” (Fox, et al.,
1993, p. 548). Admittedly, specialty care is not always needed; however, to curb

’9 66

expensive specialist use, it is imperative to provide for “adequate, sustained”
community services (Mechanic, 1999, p. 149). “[T]he current era of private and public
managed care is at risk ethically if it focuses primarily on cost reductions and the
effectiveness of short-terrn approaches...Many people suffer at a time when effective
care is at hand” (Pomerantz, 1999, p. 5). Some note MCOs’ newer disease management

protocols for other chronic illnesses, and hope for the same for mental illnesses

(Pomerantz, 1999, p. 5).

83

 

 

 

 

 

10 CCO

comps

[3165 {l

preven

Biomedicine’s emphasis of acute care to the detriment of prevention carries over
to economic methods by which costs and benefits of particular interventions are
compared (Krahn & Gafni, 1993, p. 411). Critics of such methods claim that discount
rates and other tools give preference to short-term acute treatment over longitudinal,
preventive efforts. Chapter 2 analyzes this debate.

Biomedicine also fails to take a ‘lifespan approach.’ This deficiency is
particularly harmful to mental health care. Mentally ill youth are suspected to benefit
most from interventions that begin early and take a longitudinal perspective. The authors
of Mental Health: A Report of the Surgeon General (1999) thought highly enough of the
lifespan paradigm to structure the report by life stage, showing how etiology, treatment,
prevention and other factors vary strikingly according to life stage.

“Different stages of life are associated with vulnerability to distinct forms

of mental and behavioral disorders but also with distinctive capacities for

mental health” (Satcher, 1999).

Critics argue erroneously that the biomedical model has helped formulate better
diagnostic criteria in mental health care, for example the Diagnostic and Stagistical
_M_an_ual (DSM) (Kessler, 1990, p. 147). Contrarily, the DSM embraces biopsychosocial
medicine. While preserving the benefits of reductionism; it functions as a bridge between
biomedicine and biopsychosocial approaches (G. Osborn, personal communication, May,
2000). Its multiaxial format has evolved away from a strict biomedical model, and is the
model of an integrated psychosocial approach to diagnosis. It is the only medical
diagnostic guide that attends to psychosocial stressors; psychiatry applies it to record

such day-to-day life stressors in the patient’s record, behavior from which other

specialties would benefit by emulating. Its axes (Axis I-V) allow quantifiability of

84

functioning and symptoms (e.g., social and occupational functioning, effects of stress and
personality factors, and influence of physical illness), and enable categorization of
specific, discrete disorders (G. Osborn, personal communication, May, 2000). Diagnostic
tools of other specialties have yet to catch up with this model. The DSM illustrates the
limitations of reductionism: there are no lab tests to diagnose mental illness. The DSM’s
phenomenologic approach to disease classification comfortably envelops social factors
external to the individual. In so doing, it allows for a systematic accounting of the
complexity of mental illness (G. Osborn, personal communication, May, 2000). In future,
though, if diagnostic lab tests are developed, this does not mean we should devote less
emphasis to care needs and fostering caretaking environments (G. Osborn, personal
communication, May, 2000).

It has also been argued that physicians do not have time to explore the patient’s
life context (e.g., see Engel, 1980, p. 543). However, it has been mentioned that such
efforts can provide meaningful clinical benefits.

To promote the best possible preventive services, and combat the limitations of
Western biomedicine, we need some sort of overarching, national infrastructure. Policy
promoting such an infrastructure should include, where possible, financial support of
religious institutions that already are committed to social programs. Extant examples
include Lutheran and Catholic social services. Such services often already have an
infrastructure in place that would be helpful for providing preventive services (G.

Osborn, personal communication, May, 2000).

85

Chapter 2: Socioeconomic and Demographic Trends; Intergenerational Resource
Allocation; Value Judgments in Economics

Demographic trends are fomenting debate about just allocation of scarce medical
resources. Aging populations require more, and more expensive medical care than
younger cohorts. Technological advances accelerate this trend by lengthening lifespans.

The goal of this chapter is to explore intergenerational resource distribution from
philosophical, historical, and economic perspectives. A case has been made that
emotionally disturbed children represent a vulnerable population worthy of heightened
protection. Recall that heightened concern toward the most weak is a longstanding moral
tradition. All age groups should care about how vulnerable children are faring, for moral
and economic reasons. Devotion of sufficient resources to children’s needs is not merely
an intrinsic good. Long-term social program sustainability requires maximization of
youths’ functional outcomes.

Despite advances in technological medicine, pediatric mental illness remains
inadequately diagnosed and treated. The treatment system is underfunded, poorly
coordinated, and often grants access on the basis of economic factors, not solely medical
need. Prevention and early intervention are also poorly supported. The Western
biomedical model, capitation, and bioethics poorly account for complex needs of
mentally ill children. See Chapter 1 for additional evidence about these issues.

One purpose of this chapter is to forecast that if demographic trends continue, the
welfare of vulnerable children will erode. Arguing that biases in medical resource
allocation exist in favor of the elderly, to children’s detriment, is premature. However, an

argument is made that multiple phenomena are setting the stage for such biases. Such

86

factors include children’s low sociopolitical status, normative theories regarding resource
allocation, and economists’ choice of tools with which to evaluate health care programs.
There exist promising findings about what works in child psychiatry, knowledge
sufficient to enact reform. But as resources continue to be diverted toward wealthier,
politically empowered, vocal cohorts, hopes for addressing shortfalls and putting
knowledge into practice fade.

Some caveats are in order. This chapter is not a mere academic exercise. Political
decisions are constantly made about social programs such as Medicaid. Medicaid, heavily
relied upon by children with emotional disorders, was originally intended for those in
poverty. Increasingly, however, it funds nursing home care. This is in the face of data
showing that since the 19605, poverty trends of children relative to elderly cohorts have
reversed (Callahan, 1987, pp. 205, 219). The elderly used to be the group with the highest
poverty rates; now, it is children (Callahan, 1987, pp. 205, 219). Despite this trend,
Medicaid spending on elders’ needs is increasing.

This chapter does not propose rationing elders’ health care services in order to
devote more resources to children. However, some philosophers do propose such
reforms. In any event, serious proposals of rationing are premature for a health care
system such as America’s that lacks, for example, a global budget. In other nations, a
fixed amount of money is devoted annually to health care. Savings realized in one branch
of the system can be shifted to another branch experiencing deficit. Contrarily, “[t]he
total resources that [America] devote[s] to health care is not a fixed pie such that more
resources for children’s health must mean less for the health of the elderly” (Goddeeris,

personal communication, 1999). In corporate, competitive systems, savings realized in

87

one area are just as likely to be shifted to profit or salaries as they are to improved
services.

This attempt at exploring intergenerational resource allocation is somewhat novel
and more explicit than prior attempts. However, it is not premature. Consideration of
ethical dilemmas surrounding intergenerational resource allocation should occur now, to
encourage a sense of objectivity in social discussions of potential solutions. This chapter
does not aim to end the discussion and proffer explicit policy recommendations, but
rather to inform rational public discourse about the extent and limits of duties generations
have toward one another. It can be concluded, based on demographic trends and other
data in this report, that the fairest approach would be intergenerational in nature (G.
Osborn, personal communication, May, 2000).

Intengenerational Resource Allogtion: Philosophical Theories

 

In an argument claiming that one age group’s needs are insufficiently being met,
partly due to claims by other groups, it is necessary to examine literature related to age-
based allocation. This is particularly the case where the claim is made that the group in
question represents a vulnerable population worthy of heightened societal protection.

Proposals to ration services for the elderly do not follow from children’s unmet
need. America’s health care system does not function in such a way that a “fixed pie” of
dollars is dedicated annually to health care spending. Therefore, any savings realized
from rationing health care for one group would not guarantee heightened resource
allocation to services for another. Critics argue, then, that devoting attention to

intergenerational justice and resource allocation is premature. However, as mentioned

88

above, one goal of this chapter is to inspire rational reflection upon these issues, before
eruption of emotionally laden crises.

Children are comparatively healthy. Most are not mentally ill. Critics assert that
unmet need is insufficiently documented to warrant contemplation of rationing, let alone
rationing disproportionately impacting care for certain groups. Also, since the elderly are
comparatively sicker, it makes sense that they consume more resources. A response to
this is that in fact, unmet need is sufficiently documented to warrant concern and a sense
of urgency (see Chapter 1). Unmet need, children’s political invisibility, and continued
spending trends on elder care are a recipe for socioeconomic disaster in the years to
come. However, because interventions for mentally ill children do not involve exciting,
dramatic technologies, and because children lack political clout, bioethics literature has
been bereft of discussion about how to ensure that their needs are better met, in the face
of the growing burden of elder care.

The reader should emerge from this section with understanding of the following
points. First, phi1050phers recognize intergenerational justice and allocation of health care
resources as emerging ethical dilemmas worthy of analysis and social discourse. Second,
philosophical approaches toward justice between generations in resource allocation are
multiple and conflicting. Commentators offer various arguments to justify their
approaches. However, they frequently stop short of calling their allocation schema a
solution, instead asserting that social debate and reforms must come first.

In the current context of resource scarcity and changing demographics, the
proportionally greater and growing expenditures for the elderly represent a moral

problem, one whose urgency is growing, and one which will be only be solved “by

89

principle or by default” (Daniels, 1983, p. 491). This means that ‘allocative’ decisions
between groups, or ‘rationing’ decisions within groups, will continue to be made for non-
moral reasons, such as financial incentives (market-driven, laissez-faire, ability-to-pay),
political influence, or haphazardly (by default). Alternatively, society can rationally
deliberate the problem, change its expectations of medicine, and arrive at distributive
schema more fairly representing health-related interests of all age groups (Daniels, 1983,
p. 491; Daniels, 1985, p. 88). It is acknowledged by bioethicists that rationing currently
occurs, in what Callahan calls a covert, piecemeal, unreasonable manner, or what Daniels
and Wikler call an imprudent, irrational fashion (Callahan, 1987, pp. 127-131; Callahan,
1992, p. 221; Callahan, 1993, p. 25; Daniels, 1983, p. 496; see also Churchill, 1988;
Jecker & Pearlman, 1989; Lewis & Chamy, 1989, p. 28; Moody, 1978, p. 198; and
Wikler, 1988, p. 71;).

This review is limited to work focusing on allocative justice between generations.
Many articles consider ethical and clinical ramifications of age as a factor in
decisionmaking with respect to the elderly alone (e.g., regarding highly expensive care
such as dialysis [see Calkins, 1993; Grapsa & Oreopoulos, 1996] or transplantation [see
Amrein, et al., 1990; Laske, Niederhauser, Carrel, von Segesser, & Turina, 1992], or
marginally beneficial care). Conversely, other work concentrates on dilemmas posed by
neonates. Such work was excluded for space limitations.

Prominent among those offering schema by which to justly allocate medical
resources among age groups are Norman Daniels and Daniel Callahan. Callahan’s
account, drawing from a communitarian perspective, coheres best with my claim that

mentally ill children are a vulnerable population, the medical needs of which society

90

owes particular protection. However, not all advocates of allocative schema including age
as a factor in what Callahan calls ‘setting limits’ rely on appeals to community: appeals
to liberal individualist tradition are made by both proponents (e.g., Daniels) and
opponents (e. g., Jecker).

Other literature augments or critiques Daniels’ and Callahan’s frameworks (e.g.,
Jecker, 1989; Minkler & Robertson, 1991). While this literature offers tools in thinking
about the problem, its utility in arriving at solutions is limited, partly because it does not
account for chronic illness in other than elder groups, and because such schema begin
with ‘ideal’ assumptions about society, which poorly translate into the real world, with its
injustices, uncertainties, and socioeconomic vagaries. This flaw is noted by others
(Churchill, 1988; Jecker, 1989; Moody, 1988; Moody, 1991, p. 182; and Wikler, 1988, p.
58). Even creators of such schema stop short of claiming they have arrived at solutions:
instead, they first require social deliberation, alteration in what society expects from
medicine, and/or that pervasive social injustices be solved (e.g., see Callahan, 1987,
1990, 1992; Daniels, 1983, 1985, 1993; and Jecker, et al., 1989).

A number of themes, assumptions, and questions pervade this literature. For
example, what is the best way to think about generational groups and their relationships
and duties to one another? Are generations properly thought of as competing-what has
been called a ‘zero-sum game’ (Callahan, 1987, p. 128; Moody, 1988, p. 53)-or are they
interdependent, so that benefits of expenditures made on one age group overflow to
others? Should the elderly be viewed as heterogeneous, or is it appropriate to view them
as a homogenous group with similar values and needs (e.g., in asserting that elderly

people ‘normally’ need and utilize more services than youths and adults)? Should

91

deliberators view their own individual interests from a lifespan perspective, with an
awareness that one will benefit from a resource-transfer scheme in old age, even when
shouldering a burden while young? Or should they maintain the prevailing ‘time-slice’
perspective, in which one perceives a zero sum game between one’s own age cohort and
others, such as Baby Boomers versus the Oldest Old (Daniels, 1983, p. 495)?
Assumptions include that the amount of medical resources is finite since other social
sectors, such as defense and education, also rightfully draw from America’s economic
output.

Resource scarcity is not the only constraint. Demographic changes including
increased lifespan, lower fertility, and larger proportional numbers of older persons
compared to youth, both increase elderly’s proportional medical needs and consumption,
and increase the incidence and prevalence of chronic, incurable disease. The latter has
also been fueled by unbounded technological innovation, which thwarts death caused by
acute illness and injury, but is less successful in preventing and curing chronic conditions
causing extensive suffering. Economic trends pointed to by advocates of age-based
allocation schemes include an increased proportion of children in poverty (Callahan,
1987, p. 205; Callahan, 1990, p. 160), and stable or decreasing resources allocated to
institutions contributing to the children’s well-being, such as education and social
services (Callahan, 1987, p. 262; Callahan, 1990, p. 160; Daniels, 1983, p. 490).

Another assumption is that intergenerational conflict (an ‘age war’) exists in
America; some point to public surveys in refuting this, and in support of allocation
schemes (Minkler & Robertson, 1991). Such schemes rely heavily on intergenerational

goodwill (Moody, 1988, p. 41), belief in age groups’ interdependence (Moody, 1988, p.

92

48), or the “moral economy” of generational reciprocity (Minkler & Robertson, 1991, p.
339) for sustainability. Critics of age-based allocation fear that today’s elderly are
scapegoated, and are really victims, wrongly blamed for unmet needs of other age cohorts
(Minkler & Robertson, 1991, p. 328). In this view, social programs such as Social
Security and Medicare require more resources, not fewer, to address gaps in coverage for
long-term, nursing home, or home care (Jecker & Pearlman, 1989; Minkler & Robertson,
1991). Moreover, critics fear the worsening of ‘ageist’ stereotypes, should society
entertain or enact such schema (Clark, 1985; Jecker & Pearlman, 1989, p. 1073; Minkler
& Robertson, 1991).

This body of literature lacks unanimity on how to define or solve the problem.
Indeed, analyzability of a problem does not imply its solvability. Some argue that
solutions require nothing short of wholesale revision in social expectations of medicine,
what we perceive its goals to be, such as cure-the goal presently dominating-or care
(Callahan, 1992, p. 222). Another goal requiring re-thinking is the drive to meet each
individual need: a ‘flawed,’ unachievable goal, since boundless technological innovation
breeds continuous, unchecked upward revision of what constitutes ‘need’ (Callahan,
1992, p. 221). Society needs to re-think its definitions of health, disease, an ‘adequate’
lifespan, and a good death (Callahan, SettingLimits).

Dan Callahan in his 1987 book Setting Limits argues that in future we will need
to use age as a criteria by which to allocate costly, marginally-beneficial, life-extending
technologies. His policy goals include universal health care, avoiding premature death,
and decreasing later life suffering by expanding services such as long-term care. He

argues that the ‘modernization’ of old age, and attempts to avoid aging and death by

93

asserting an unlimited claim on public resources, represent an “unjust burden on the
young” (Callahan, 1993, p. 24). Modern medicine holds a “...philosophy of denying
limits, particularly where aging and attempts to extend life are concerned” (Levey & Hill,
1989); we should seek a better balance between care and cure, length and quality of life.

A philOSOphy of setting limits seems un-American at present. By ‘limits,’ it is
meant that when we inspect the practice of medicine, we see a great deal of futile care at
the end of life. Even if a life totally devoid of illness were possible, there are still finite
physiological limits on how long we can live. And even if we could thwart such limits
(e.g., by manipulating genes related to aging), the idea of conscious control over aging is
so socially disruptive that we as a society are simply not ready for it. Even in a state of
perfect health for the foreseeable future, there is still a finite human lifespan; with this
perspective in mind, we need to define and set limits on goals of the life cycle (G.
Osborn, personal communication, May, 2000).

That modern medicine denies limits is noted by others (e.g., Gleicher, 1991, pp.
2389-2390). Callahan’s system would be “open and democratically achieved,” (Callahan,
1993, p. 25), agreement at the community level, not covert as at present. To those arguing
that such a schema threatens autonomy, Callahan responds that just resource distribution
within a community requires limits on autonomy and individual claims. “[T]he old have a
duty to the young not to make demands that will harm the young; and...the young...have
some significant duties to sustain the welfare of the old” (Callahan, 1993, p. 26).

Opponents to age-based allocative schema claim that decisions should not be
made on the part of the elderly as a group because of their heterogeneity (Callahan, 1987,

p. 121; Callahan, 1993, p. 26). Callahan counters that this is not incompatible with using

94

age as a criteria; with respect to two important factors ([1] they “consume a
disproportionate share of resources,” and [2] health care for them tends to be more
expensive than for the young [Callahan, 1993, p. 26]), this can be viewed as a group
problem. The attractiveness of age-based criteria are that they are “clear and visible”;
they apply to everyone; and in helping people thwart premature death, society is both
able to meet its obligation and avoid the ludicrous attempt to spend unbounded dollars on
extending life expectancies (Callahan, 1993, p. 27). An added bonus is that establishment
at the policy level avoids the vagaries and conflicts of interest of bedside rationing.

Norman Daniels’ ‘prudential lifespan approach’ or diacharonic, life-course
perspective advocating age-based rationing, is a ‘person-centered’ argument. The
advantage of thinking about intergenerational resource allocation this way is that it
enables acknowledgement of elder health care as a collective problem, one that each of us
will face. It represents a shift away from the prevailing frame of reference for viewing the
problem-a ‘time slice’ approach encouraging an ‘us against them’ mentality: currently-
existing age cohorts competing for their share of the pie.

Looking instead out over our own lifespan, what allocation of resources or mix of
spending and services, would rational individuals prefer, operating on the assumption of
limited resources and one’s inability to predict future medical needs? Daniels claims that
we would want to maximize the chances of living a ‘normal’ lifespan. Toward this goal,
one would opt for maximum access to life-extending services while young, while
choosing less-expensive interventions that maximize quality of life after attaining older
stages of life. Such a lifespan approach, deriving from Rawls’ social contract, is already

used for thinking about allocation of other social resources such as education (Clark,

95

1985, p. 123). Limitations of Daniels’ approach include its assumption that “...more
general principles of justice already solve problems of distribution between
persons...answers to more basic questions of justice have been found already” (Jecker,
1989,p.657)

Recall the introduction’s contrast between Americans’ ‘rugged individualism,’
and Western Europeans’ shared, collective experiences and values. Recall also that the
US. is one of only two nations that have failed to ratify the UN. Convention on the
Rights of the Child. The Convention spells out a basic right to both health care (e.g.,
Article 24) and education (Articles 28 and 29). Western European nations’ prioritization
of the community good has facilitated their understanding that there are solid, good
reasons to invest in both early education and pediatric healthcare (G. Osborn, personal
communication, May, 2000).

Jecker and Pearlman (1989) and others have categorized and critiqued arguments
for and against age-based rationing. With respect to arguments supporting age-based
rationing, Jecker and Pearlman. include 1) ‘productivity’ arguments, 2) ‘person-centered’
arguments, and 3)‘equality’ arguments. In seeking to maximize such a goal as
productivity (or, financial savings of health expenditures, or return on investment in
saving life-years), those marshalling productivity arguments claim that older persons
compete unfavorably against the young: they are less productive, are more frequent users
of high-end medical services, or have fewer life-years left to save (Jecker & Pearlman,
1989, pp. 1069-70). Productivity arguments are utilitarian in their effort to maximize

social goals.

96

Callahan, Daniels, and Moody advocate age-based rationing by appealing to what
Jecker and Pearlman call person-centered arguments: all individuals should be respected
regardless of productivity level. Callahan argues that rationing health care to the elderly,
with a mind towards assisting all to achieve a ‘natural lifespan’, is not inconsistent with
respecting the old. Daniels, in rendering old age a part of all of us by calling for each
individual to adopt a ‘life-time’ perspective, also promotes respect for individual elderly
autonomy. Finally, Moody argues that restricting life-extending care to the elderly, while
promoting palliative care, enables them to achieve better quality of life; it does not do so
by disrespecting them (Jecker & Pearlman, 1989, p. 1071). The argument advanced in
this thesis is a person-centered approach. Such an approach seems most persuasive in this
context partly because it spotlights commonalities between the elderly and mentally ill
children as vulnerable social groups. Advocates of person-centered arguments respect all
persons whether or not they are employed or economically productive (Jecker &
Pearlman, 1989, p. 1070). They prioritize quality of life, which is not inconsistent with
respect for individuals (Jecker & Pearlman, 1989, p. 1071). For the elderly, this might be
at the expense of quantity of life; for mentally ill children, it suggests we should
emphasize quality treatment within a caring environment in cases where prevention or
early intervention has failed or is too costly. These are critical uniting points in a modern
industrial society that often grants respect, rewards, and individual social worth via
economic productivity and independence. It often follows that such societies question the
value of living as a disabled, chronically ill, incompetent, and/or dependent individual.

One flaw of person-centered approaches is that they presume broader social needs (e.g., a

97

just health care system) will be met when (e.g.) a longer lifespan or cure for mental
illness is impossible.

Another category of arguments favoring age-based rationing is equality
arguments. Adherents claim the impropriety of classifying ageism as equally morally
objectionable as sexism or racism: while most people experience both youth and old age,
they will not be members of all genders or ethnicities. Because of this, and facilitated by
Daniels’ ‘life-time’ perspective, “...differential treatment by age does not imply unequal
treatment between persons over a lifetime...” (Jecker & Pearlman, 1989, p. 1071).

Jecker and Pearlman (1989, p. 1072) list the following arguments against age-
based rationing: ‘needs-based’ arguments, arguments appealing to ‘special duties’, and
arguments charging ‘invidious discrimination’. Adherents of needs-based arguments
emphasize the elderly’s greater need for medical services, asserting that societal duty
follows from this heightened, disproportionate need. Arguments appealing to ‘special
duties’ invoke not elevated medical needs, but the communitarian-based notion of
connection to the community as the foundation of a special social duty to provide medical
care to older persons, not deny it. One assumption of such arguments is that individuals
become more embedded (acquire more responsibilities) in a social network with age,
such that the loss of an older person through death causes greater damage to “the social
fabric” than does (e.g.) a neonatal death (Jecker & Pearlman, 1989, p. 1072).

Finally, arguments charging ‘invidious discrimination’ claim that rationing based
on age is both conceptually supported by and will aggravate age bias and cultural
prejudice against older people (Jecker & Pearlman, 1989, p. 1073). Some adherents of

such arguments fear the slippery slope, that heightened cultural prejudices will lead to

98

denied access to medical and other social goods. With this fear in mind, a person-
centered approach seems most compelling because it promotes respect for all individuals,
including those who for reasons of disability, age, or chronic illness are incapable of
supporting or advocating for themselves. Such characteristics unite both mentally ill
children and the elderly. Person-centered arguments for age-based rationing counter
America’s devaluation of all categories of dependent citizens. A person-centered
argument advocating age-based rationing best adheres to my claims that mentally ill
children’s needs are insufficiently met and warrant rendering this group a vulnerable
population owed special protection. Person-centered arguments have the added bonus of
being among the most conceptually mature arguments favoring age-based rationing.
Intergenerationaj Resource Allocation: Historical Trends

A wealth of information illustrates significant sociodemographic shifts underway
with respect to age distribution, lifespan, poverty, and other trends. Bioethicists have
appropriated literature containing thirty years’ worth of such data to illustrate the growing
urgency of the problem of intergenerational medical resource allocation.

Since the 19605, the economic fortunes of children have deteriorated, while those
of the elderly have grown. In 1960, the elderly as a group were poorer than children
(Callahan, 1987, p. 205). From 1970 to 1982, poverty among children rose from 37% less
than that among the elderly, to 56% greater than among the elderly (Callahan, 1987, p.
205; Callahan, 1990, p. 160). By 1992, 20% of children lived in poverty; children were
the poorest age group (Callahan, 1992, p. 219). That same year, the elderly were the
“most affluent age group” (Callahan, 1992, p. 219). Yet from 1984 through 1987, federal

expenditures targeted toward the elderly were six times greater than those toward

99

children (Callahan, 1987, p. 205; Callahan, 1990, p. 160). Poverty has always been a
greater challenge amongst minorities of all ages (Callahan, 1987, p. 205). In 1992, 50%
of black children under 6 lived in families in poverty (Callahan, 1992, p. 219).
Meanwhile, the income gap between haves and have-nots remains a problem: only three
countries are more unequal than the US. in terms of distribution of income (Sardell,
1990, p. 290).

By 1980, health care benefits for the elderly were eight times greater per capita
than for non-elderly; they were fifteen times greater per capita for the elderly than for
children (Callahan, 1990, p. 160). Those aged 65 and over consumed a third of health
care expenditures in the 19805 (Jecker & Pearlman, 1989, p. 1069). By 1990, 12% of the
US. gross national product (GNP) was spent on medical care; an increasing portion of
this was being spent on the elderly. Countering those claiming the amount spent on health
care is an indicator of quality, Callahan (1987) wrote, “[t]hat the United States already
devotes a larger portion of its GNP to health care...than other developed countries with
excellent health-care systems is itself a good reason for politicians and health planners to
believe that more money would not in itself guarantee any greatly improved level of
health care” (p. 124). Note that this assertion, that spending more money does not
necessarily improve quality, directly opposes age-based rationing opponents like Jecker,
who urge that more resources, not fewer, be spent on the elderly in order to improve
health care quality for them, specifically by closing gaps. In Setting_Limits (1987), Dan
Callahan forecasted: “[w]hereas in 1985 the elderly population of ll[%] consumed
29[%] of health-care expenditures, the expected 21[%] elderly population will consume

45[%] of such expenditures in 2040 (p. 120).

100

Given demographic shifts toward proportionally greater numbers of elderly,
Medicaid spending trends are wonisome. Also worrisome are historical trends that
powerful interest groups mold allocative decisionmaking in the form of federal
legislation to their own interests. “Beginning in 1972, there was a shift within Medicaid
away from spending on health services for nondisabled children as a higher proportion of
Medicaid funds went to pay for services for aged, blind, and disabled SS1 recipients;”
between 1972 and 1987 the percentage of Medicaid expenditures on nondisabled children
dropped (Sardell, 1990, p. 279). Further, “[a]lthough Medicaid is the major source of
funding for children’s health services, almost three-quarters of all Medicaid expenditures
are spent on services for the aged, blind, and disabled” (Sardell, 1990, p. 279). Of course,
it is likely that some emotionally disturbed children qualify as disabled, thus may be
counted not under Medicaid children’s expenditures, but instead grouped categorically
with the ‘aged’ and ‘blind.’ Anecdotal and other evidence, however, suggests that even
children exhibiting severe difficulties may be less able to win 881 disability coverage (M.
Woolson, personal communication, May, 2000).

Legislation, such as the Omnibus Budget Reconciliation Act (OBRA, 1981) led to
hundreds of thousands of families losing Medicaid coverage (Sardell, 1990, p. 279).
During the late 19705-early 19805 Medicaid spending per child fell 13%; federal
spending for programs impacting child health and well-being fell 32%. In contrast, from
1985 to 1989, Medicare expenditures were projected to rise 60% (Callahan, 1987, p.
117). Medicare is a socially-maintained program funding health care for the elderly.
Callahan (1987, p. 128) wrote “[w]hereas [Medicaid] was originally designed to provide

general health care for the poor, its originally incidental inclusion of long-term care of the

101

elderly has meant that as the latter’s costs have risen, funds for the other poor have
proportionately declined... driven down by the costs of long-term care” (Italics mine).

By 1987, 35% of Americans lacked health care insurance (Callahan, 1987, p.
215). In 1990, only half of children eligible for Medicaid were enrolled (Sardell, 1990, p.
283). Social factors help explain why Medicaid-eligible children are not enrolled, and
include parental language and educational barriers. Governmental efforts have recently
been initiated to make parents more aware (e.g., Pear, 1999), such as a nationwide toll-
free number.

The journal Morbidity and Mortality Weekly Report surveyed over 185,000 adults
to determine the relationship between age and having ‘adequate insurance,’
‘underinsurance,’ or ‘no insurance.’ These data show a clear trend: the younger the
person, the more likely he/she is to be un- or underinsured. In 1995-96 young adults were
most likely of all age groups to be uninsured (Anonymous, 1998a, p. 531). The report
recommended “more affordable private insurance, a national health insurance program,
or allowing certain segments of the population to purchase Medicare”(Anonymous,
1998a, p. 532). While some posit that increased spending on health care fails to guarantee
quality improvement, this report assumes that increased spending will improve access.

There is evidence that insurance status makes a difference in whether mentally ill
children’s treatment needs are met. For example, one study revealed that paradoxically,
while youths with Medicaid were better able than uninsureds to access services, youths
with private insurance accessed services at the same rate as uninsureds (Burns &

Hoagwood, 1998, p. 693). “[P]rivate insurance, with its deductibles, co-payments, and

102

historical caps, functioned as a barrier to service use even for very high need youth,” a
finding replicated in a national study (Burns & Hoagwood, 1998, p. 693).

Another MMWR report (Anonymous, 1998b) gives credence to the
recommendation for national health insurance: “[t]he prevalence of adequate coverage
was highest in Hawaii [87.9%], the only state to have nearly universal health-care
coverage” (Anonymous, 1998b, p. 51). These findings agree with other data indicating
that “...most persons who were uninsured were either uninsured or underinsured,
possibly reflecting the inadequacy of employer-based health-care coverage”
(Anonymous, 1998b, p. 53).

“Remarkable increases in the life expectancy of populations in economically
developed nations have occurred in recent history...[m]ore remarkable is the increase in
life expectancy at advanced ages...” (Manton, 1986, p. 672). Evidence from gerontology
suggests that Callahan’s schema might best balance the needs of ,the elderly with
resolving the resource scarcity problem. Recall his proposals: better balancing care and
cure, quality and quantity of life, by setting limits through emphasizing basic health care
over a natural life span, while limiting life-sustaining technology. For example,

“[a]t all ages the chronic conditions that produce the largest number of

deaths (e.g., cancer, heart disease) generate only small amounts of the total

chronic disability-even disability at high levels. The greatest amounts of

disability are reported to be due to chronic degenerative conditions (e.g.,

senility, arthritis, and atherosclerosis)...Thus, to reduce the total amount

of disability in the population by controlling chronic disease risks, it

appears that one must intervene early in the degenerative process before

the acute phases of the degenerative processes become manifest.

Comparing disability levels in the 65-74 age group with those above age

85 shows that above age 85, the chronic degenerative conditions are even
more important in causing disability.” (Manton, 1986, p. 678)

103

Many chronic degenerative diseases are amenable to preventive interventions: the
earlier, the better. Such interventions may not require high-technology, expensive,
marginally effective procedures, but rather lifestyle modifications which can be effective
at addressing multiple chronic conditions. For example, reduced fat in the diet can both
reduce cholesterol levels that lead to atherosclerosis, and help reduce obesity, a risk
factor for cancer, diabetes and other conditions. Callahan’s schema prioritizes allocating
resources towards interventions (e.g., prevention, early intervention) likely to reduce later
life suffering. The urgency of addressing and preventing chronic, disabling illness and
suffering among the elderly is growing: “...the numbers of disabled elderly adults can be
expected to increase as the number of survivors to later ages increases due to mortality
reduction” (Manton, 1986, p. 680). “Between 1965 and 1980, there was an increase in
the life expectancy of those who reached age 65 from 14.6 to 16.4 years, with a projected
increase by... 2000 to 19.1 years” (Callahan, 1987, p. 119).

“Between 1980 and 2040, a 41-percent general population increase is expected,
but a l60-percent increase in those 65 or over” (Callahan, 1987, p. 119). Jecker and
Pearlman (1989, 1069) stated that between 1900 and 1989, the number of persons over 65
rose eight times, while the proportion of persons over 65 rose three times; the number of
people over 85 comprised the fastest growing age group—their numbers rose twenty-one
times.

Logically, as the population of one age cohort grows, other cohorts remaining
stable or falling, the proportion of medical expenditures on that cohort will grow, barring
shifts in the manner in which, and to whom, health care is provided. Numbers bear this

out. “In 1980, the 11 percent of our population over age 65 consumed...29 percent of the

104

total American health-care expenditures... By 1984, the percentage had increased to 31
percent...” (Callahan, 1987, p. 119). These trends illustrate that intergenerational
medical resource allocation is becoming an increasingly urgent moral and policy
dilemma, a dilemma concerning issues of justice. The falling dependency ratio (ratio of
young to old) is another trend that should be of concern to policymakers counting on the
economic sustainability of intergenerational wealth transfer schemes. America’s family
size is dropping and is now barely ‘replacement rate’ (Callahan, 1992, p. 221). The
number of offspring eventually translates into the number of workers available to support
medical and other needs of elderly parents, and to maintain economic growth and
competitiveness. Following this thinking, social spending on maternal and child
health/nutrition services and education represents “an investment in the future American
workforce” (Sardell, 1990, p. 287). In order for US. industry to compete internationally
and avert “severe employment crisis,” society should invest in ‘human capital,’ namely,
educational reform to better facilitate learning, and “prevention through early
intervention” (Sardell, 1990, p. 287).

Many people lack understanding of sustainability issues. The percent of GNP
devoted to health care cannot continue to rise without deleteriously affecting other social
sectors. Managed care, touted as a panacea in the 19705-805, did temporarily succeed at
controlling costs. However, employers are reporting that premiums and copays are rising
again (Meyer, 1998, p. 46). MCOs claim this is due to increased regulation and mandated
services inspired by public backlash (Kahn, 1999; Matthews, 1998, p. A14; Meyer, 1998,
p. 46). Economists claim that savings achieved by elimination of waste and fraud are

finite, and will not curb the rising costs trend.

105

Even in the current era of spectacular economic growth, serious problems of
access such as uninsurance and underinsurance fester, as do imperfections in allocative
justice, such as income inequities, uneven geographical distribution of physicians, and
delayed or inappropriate treatment for some life-threatening conditions for women and
minorities. The cyclical nature of economic booms and busts is undeniable. Current
economic conditions likely will not persist indefinitely; in economic downturn or
recession, unemployment and underemployment rise. Because Americans’ medical
coverage remains linked to employment status (Anonymous, 1998b, p. 51), problems of
under- and uninsurance are likely to cycle as well. This scenario can be aggravated by the
ongoing erosion of social welfare programs. Poor and minority children are most likely
to be adversely affected by such trends-and these children are most at risk of complex
lifetime ramifications of mental illness. The argument in this thesis has been that
emotionally disturbed children are particularly vulnerable; it is axiomatic that poor and
minority children will be more greatly affected by such trends than privileged children.

Whatever reforms are proposed, sustainability must be a key ingredient.
Regardless of how wealthy we are, we should be concerned about program sustainabilityf
otherwise, we tacitly condone the magnification of already extreme discrepancies in
income and health status among our citizenry. A possible solution, advocated by
bioethicists including Callahan, is to shift funds from expensive, marginally-beneficial or
futile life-sustaining medical treatment at the extreme end —and beginning- of life, toward
preventive measures in childhood. Reviewing literature on age-based allocation can
inspire discussion of how it might ethically be carried out. Proponents of public health

interventions have encountered great difficulty in raising money from government and

106

insurance companies. Their concerns resemble concerns of proponents of age-based
rationing, specifically regarding moral commitment to rationing schemes. Society must
be persuaded that such investments, which cause immediate financial hardship, are
worthwhile long-term investments in human capital.

Moral commitment to funding prevention symbolizes commitment to future social
welfare and sustainability of its institutions. Before America embarks on a high-tech,
costly crusade to extend the limits of biological life, it should address the plight of
millions of children who, because of untreated or inappropriately treated mental illnesses,
‘fall through the cracks’- dropout, diversion to the criminal justice system, social and
career impairment. It is shortsighted for insurers to claim that savings are achieved by
denying early preventive treatment. Rather, economists have noted, the balloon is
squeezed elsewhere: costs are shifted to other sectors (schools, prisons, social services).
The private sector also loses economically, when premature death aggravated by such
illnesses claims millions of productive life-years.

Recent trends in education spending indicate that society may be more amenable
than ever to embrace preventive investment in human capital. Examples include
reproductive services in high school clinics and disability accommodation. These
examples, however, also show that powerful financial disincentives still exist with
respect to how both education and health care are funded, disincentives rendering
preventive interventions less palatable to payers.

Overcoming resistance by conservative interest groups, government invests in
preventive medical and other services in some schools, including sex-education,

distribution of contraceptives, programs for teen mothers, and day care for their children.

107

None of these contribute directly to the fundamental goals of education, namely to impart
a defined mix of skills, competencies, and basic knowledge to create productive workers
and citizens. Rather, the goal is clearly preventive, and benefits are long-term, not
immediately realized-and not guaranteed.

One criticism of age-based rationing schemes is that it will be a struggle to
convince individuals to commit goodwill and trust, for fear that their financial sacrifice
will not be repaid in future if the system proves unsustainable. Similar reluctance makes
individual school districts and MCOs wary of committing to preventive investment in
human capital. A school district might invest additional dollars, above the amount for an
average student, toward day care for a teen mother, only to see her transfer to another
district-or drop out. Similarly, an MCO might spend additional dollars, above the amount
for an average patient, on persuading a covered employee’s child to refrain from starting
smoking, and avert increased risk of costly, later-life disease. However, the MCO is
unlikely to itself recoup the financial benefits of this investment, since it is highly
unlikely that individuals will remain enrolled in the same MCO for life (Phillips &
Holtgrave, 1997, p. 20). The MCO is aware that its competitors would benefit were this
youngster to never smoke, thus never need expensive smoking-related disease treatments.

Such financial disincentives toward prevention are less of an issue in a cradle-to-
grave, single payer system, for obvious reasons. It is reasonable to assume, therefore, that
reforms toward a universal, comprehensive single payer health care system would face
significantly fewer economic disincentives toward prevention and multisector public

health measures than does the current system, with its multiple, competing payers.

108

Society has a moral as well as financial interest in making intergenerational
resource allocation more just. This thesis identifies emotionally disturbed children as a
vulnerable population group. The limited civil rights of children are aggravated by the
fact that such patients are also often from historically-disadvantaged social backgrounds.
Recall from the Introduction: “The moral measure of our society is how we treat the least
among us” (Moynihan, 1996), and “We believe the moral measure of our society is how
our weakest members are faring” (Keeler, 1995). This moral stance is espoused and
endorsed by a wide variety of community leaders, religious and political.

“[O]ur nation must restrain its spending to keep from further mortgaging

our children’s future. . .the weakest members of our society should not bear

the greatest burdens. Poor families and children may not have powerful

lobbies, but they have the greatest needs” (Keeler, 1995)

Intergenerational Resource Alloczgion: Economics Tools

The first part of this section explores commonly used economics tools such as
cost-benefit analysis (CBA) and cost-effectiveness analysis (CEA). These tools, applied
in health program evaluation, contain assumptions that may lead to future injustice in
intergenerational resource allocation, particularly between preventive and curative
interventions. Such tools, however, are “less susceptible to special interests, more likely
to optimize the health of the target population, and most likely to optimize use of
[limited] health care resources” (Ganiats, 1997, p. 12). CEA is a descendant of CBA
(Redelmeier, Heller, & Weinstein, 1994, p. 301). Despite economics’ grounding in an
‘ideal’ economy, it has been argued that CBA and CEA “...are needed only when market
forces fail to allocate resources optimally, as in health care because of inadequate

consumer information and distortions caused by insurance” (Redelmeier, et al., 1994, p.

302). The fact that psychosocial and other factors influence individuals’ thinking about

109

such tools, but are not accounted for in the ideal economy, raises questions about how
accurately CEA, CBA, and discounting reflect real behavior and values, and fuels calls
for improved discounting models (Ganiats, 1994, p. 298).

Economists define the “exponential discount model for time preference” as “...a
mathematical formula for comparing different amounts of money at different points in
time” (Redelmeier, et al., 1994, p. 301). Lipscomb (1989, p. 8233) defines time
preference:

“...for a given quantity of an economic ‘good’ (defined as yielding

pleasure), a person with a ‘positive’ time preference orientation—the

typical assumption—will prefer current to future consumption. Likewise,

for a given quantity of an economic ‘bad’ (defined as yielding

displeasure), a positive time preference psychology will imply a

preference for future over current consumption—a desire to postpone

consumption.”
Discounting is “a method of determining the present value of a future outcome” (Ganiats,
1997, p. 12), and “is based on a preference for the present over the future or, ‘a bird in the
hand is worth two in the bush’” (West, 1996, p. 240). The assumptions behind
discounting are “1) most people would accept less money to receive it sooner; and 2) less
money can be invested by society and allowed to grow...to yield the money required for
future costs” (Krahn & Gafni, 1993, p. 404). “Opportunity cost of [a] health care program
is the foregone returns from investment in another health program, in manufacturing, or
education” (Krahn & Gafni, 1993, p. 404). The origins of discounting are anthropological
and social and relate to fulfillment of basic needs within the environment (e.g., food)
(West, 1996, p. 240). The conceptual distinction between individual and social discount

rate is based on this difference in how much individual and social needs vary (West,

1996,p.240)

110

Discounting also has philosophical origins. “Neoclassical economics” reflects
modern thinking about discounting (West, 1996, p. 243). “The dominant current
philosophy of...heavily discounting the future...rather than investing in real factories,
employing real workers and producing real products, was not the philosophy of our
forebears” (West, 1996, p. 244). Analysis of the history of discounting’s use in evaluating
health care programs yields an appreciation of the relation between discount rate and
normative issues such as intergenerational resource allocation (Krahn & Gafni, 1993, p.
408). Today’s neoclassical approach, which prioritizes the individual time preference rate
over social values (expressed in the social discount rate), “is a relatively new concept....”
(Krahn & Gafni, 1993, p. 408).

AC. Pigou, an economic thinker, said, “The state should protect the interests of
the future...against the effects of our irrational discounting and of our preference for
ourselves over our descendants. It is the clear duty of Government...” (Krahn & Gafni,
1993, p. 409). Economic thought underwent a major shift in the mid 20"I century:

“[C]urrent economic thought grounds the notion of social welfare in the

concept of utility, a subjective concept based on individual preference.

This conceptual change...fundamentally altered the way economists

thought about the social discount rate and the ancillary notion of

intergenerational transfers. Only the preferences of the currently living
generation were regarded as relevant to the determination of the [social
discount rate]; the equal valuation of all individuals, regardless of the
generation that they belonged to, was regarded as an anachronism” (Krahn

& Gafni, 1993, p. 409).

Psychological, social, cognitive, clinical, and age factors relevant to time
preference and beliefs about discounting are documented, and vary tremendously among

individuals (e.g., Ganiats, 1994, p. 298; Ganiats, 1997, p. 13), among groups, and among

disease states (Ganiats 1997, p. 16; Johannesson & Levin, 1991, p. 652). Psychological

111

factors prompt people to value current over delayed benefits; such factors include
uncertainty of the future, which inspires anxiety that one may not be able to collect future
benefits (Redelmeier, et al., 1994, p. 302). Monetary risk-taking patterns and discount
rates vary by age (Ganiats, 1994, p. 300). Evidence is insufficient to determine whether
age factors influence the health discount rate; it “seems reasonable” Ganiats (1994).
Clinical factors contributing to individual thought about discounting include the
recognition that one is likely to suffer side effects today from deciding to take certain
preventive drugs, but it is not certain that stroke or heart attack will be averted in future
(Lipscomb, 1989, p. 5234).

Rather than an economic discounting model, I chose an early investment model.
The appeal of early investment is ancient wisdom; for example, see Aesop’s fable, “The
Ant and the Grasshopper.” Most people agree that pain is involved in investing for the
future, but most individuals also believe that such investment is wise. Of course, a 99-
year old individual might find investment less attractive. Society must decide what
interventions are rationally wisest to invest in, and should also make explicit what social
goods will be discounted at each life stage (G. Osborn, personal communication, May,
2000).

The description of cost savings of the Elmira PEIP program (see Chapter I)
discussed that program’s sensitivity to even small fluctuations in which discount rate is
chosen for analysis. It may be the case that children’s interests are best served by either
minimizing the discount rate used, or eliminating its use altogether (J. Goddeeris,
personal communication, May, 2000) in cost analyses that will help shape policy. Such

choices would better promote the lifespan approach advocated in this thesis’ argument.

112

With the help of complicated tables and figures, Welch (1991, p. 334) explains this
phenomenon, concluding

“higher discount rates tend to decrease the relative value given to the lives

of children. In short, the choice of how much to discount future dollars

becomes a choice of how much weight patient age will exert in

CEA. ..[Discounting has a] potent effect...in favoring interventions for the

elderly. . . [This phenomenon] has gone largely ignored.”

Great controversy exists regarding discounting methodology (e.g., Ganiats, 1992,
p. 551; Ganiats, 1997, p. 14; Johannesson, 1992, p. 359). Economists do recognize that
health cannot be invested like money; it cannot be ‘banked’ for later use, and people must
take good health as it comes to them—they cannot arrange to accept poor health today for
good health tomorrow (Ganiats, 1997, p. 14; Redelmeier, et al., 1994, p. 302).

Analyses involving discounting come from additional perspectives: institutional,
third-party payer, private for-profit insurer, corporate, government (Krahn & Gafni,
1993, p. 403). The choice of perspective dictates whose value judgments about resource
distribution over time prevail (Krahn & Gafni, 1993, p. 412). Philosophers assert that
health should “be on a higher level than dollars;” that directly comparing them cheapens
life’s worth (Ganiats, 1992, p. 551; see also Krahn & Gafni, 1993, p. 413).

Discounting may contribute to bias against preventive programs in favor of acute
interventions whose benefits are realized sooner. Prevention programs are not always cost
effective; this and the fact that their benefits lie in the future has put them at a
comparative historical disadvantage to competing interventions (acute care, non-medical
programs) for attraction of government funding (Anonymous, 1992, p. 148; Chapman &

Elstein, 1995, p. 374; Lipscomb, 1996, p. D8121; Phillips & Holtgrave, 1997, p. 18).

“[P]revention programs incur a bulk of their dollar costs today, but their. . .benefits occur

113

in the future. Discounting these future benefits puts the program at a disadvantage”
(Ganiats, 1992, p. 552). Prevention programs are also “held to a higher standard than
treatment because [they] are expected to demonstrate cost savings” (Phillips & Holtgrave,
1997, p. 18). Recently (1997), only 3% of health expenditures were devoted to prevention
(Phillips & Holtgrave, 1997, p. 18); in comparison, 15% of 1998 health expenditures
were spent on dialysis alone (Gerson, 1999, p. A23). Cost analysis can both under- and
overstate the net benefits of prevention (Phillips & Holtgrave, 1997, p. 18). Oftentimes,
prevention clearly saves money; an example is regularly brushing one’s teeth (G. Osborn,
personal communication, May, 2000).

If an equal discount rate is not applied to both money and health, paradoxically, it
might be most rational to never fund prevention programs, or to keep delaying them
indefinitely (e.g., Ganiats, 1997, p. 12; Johannesson, 1992, p. 363; Johannesson & Levin,
1991, p. 651). Moreover, if the health discount rate is less than the monetary rate, “’no
particular program should ever be implemented’ because by postponing the program for
one year the program will become more cost-effective” (Ganiats, 1994, p. 298).
However, the prevention paradox is rarely seen because of powerful political influences
(Redelmeier, et al., 1994, p. 302).

Bioethics, like economic theory, tends to prioritize the individual over the public
health perspective. “ ‘Identified’ lives saved by treatment in the present hold more
influence than ‘statistical’ lives saved in the future by an equivalent investment in
prevention; for example, the dramatic high-technology rescue of one premature baby

demands our attention more than prenatal care for 500 women” (Phillips & Holtgrave,

114

1997, p. 20). One need only examine the prevalence of case-based, emotionally poignant
analysis in the literature (and popular media) to see the truth in this assertion.

A majority of CEA discounting methods identified by Johannesson (1992) and
others (Anonymous, 1992, p. 148; Johannesson & Levin, 1991, p. 651) exhibit
mathematical biases against the young in favor of the old. This bias runs counter to
economic theory. The theory and mathematics behind this are complex. Others raise such
concerns, asking whether “...society should make allocation decisions...in a way that
treats...cohorts equally—regardless of when in the future they come into existence?”
(Lipscomb, 1989, p. S237). “It is...important to be aware of the distributional
implications of different methods [of discounting] with regard to priorities between
different age. . .groups” (Johannesson & Levin, 1991, p. 652).

To adopt a discounting method where the health outcome discount rate equals the
monetary rate, means that we would be “...act[ing] as if there is a social
consensus...Such a consensus...is basically a political judgment about intergenerational
equity” (Lipscomb, 1989, p. 8238). This is a “...problem of whether to accord all cohorts
equal social standing in the cost-effectiveness calculus...a social judgment about equity
and the nature of the social contract” (Lipscomb, 1989, p. S240). Selection of a social
health outcome discount rate “...represents a global political decision about the relative
weights current decision makers should attach to future population cohorts” (Lipscomb,
1989,p.8246)

The level of emotion attached to the issue of discounting in health policy analysis
is clear.

“Rather than use discount rates of 5% to 10%, why not use terms like
shortsighted, living for the present, mortgaging your future and your

115

children’s future to more accurately portray the real issues? We in the

United States are already reaping the ‘rewards’ of discounting the future in

health, education, and the general well—being of society. As our society is

in the process of collapse, people are living more for the present at the

expense of the future” (Coren, 1992, p. 472).

West (1996, pp. 239, 244) writes,

“Discounting inevitably encourages ‘short terrnism’ and hence biases

public policy decision making...The most important natural resource

(economic good?) is people, and people in the future are as valuable to

society as people now...[eliminating discounting] for health care planning

and other public policy decisions [is] better for the future of collective

decision making and. . .society generally.”

Some argue that . .selfish myopia [application of certain discounting methods] is
not a rational basis for public policy—e.g., it would favour [sic] underinvestment in the
long-term health for the poor...It almost certainly does not reflect the way people want
governments to act on their behalf” (Anonymous, 1992, pp. 148-9).

Economists know that tools applying discounting to assess health programs’ cost
effectiveness are limited in resolving such normative questions (e.g., Watts, Jackson, &
LoGerfo, 1979, p. 431). Some suggest the critical issue is not what the proper discount
rate is, but rather being explicit as to what end CEA is being performed: toward a public
health policy or a clinical policy (Ganiats, 1994, p. 299). Ganiats is also concerned about
the emphasis on comparing the health discount rate to a monetary discount rate. The
limiting factors of rationing in America are more often non-monetary, such as availability
of ICU beds, organs, and equipment, whereas CEA applies dollars as a unit of analysis.

Moreover, America has yet to limit dollars allocated to health care: the proportion of the

GNP allocated to medical care continues to grow unbounded. To make CEA more

116

relevant, one might adjust the method to calculate (for example) “dialysis machine per
QALY” instead of the prevailing “dollars per QALY” (Ganiats, 1994, p. 299)

A consensus of sorts in recent literature is that cost and life-years should be discounted at
equal rates (Johannesson, 1992, p. 359). However, GNP might influence the social
monetary discount rate (Ganiats, 1994, p. 299).

There are a number of competing discounting models (Johannesson & Levin,
1991, p. 651; Lipscomb, 1989, pp. 5234, S245). Each method for discounting life years
or QALYs “yield[s] fundamentally different results;” whether a program is judged
worthy of investment can vary radically depending on the method used (Lipscomb, 1989,
pp. 8234-6). Moreover, it is more difficult to compare CEA results across programs
when economics lacks consistent use of a standardized method (Johannesson, 1992, p.
363).

Many suggest that discount rates be determined through political processes,
although some (Lipscomb, 1996, p. D8121) are concerned that “...the practical problems
of doing this would seem overwhelming...”. Watts et al. (1979) state, “[M]ost of our
social decisions are made with a heavy dose of political input. To the extent that [CBA
and CEA] can help to make an open and informed process, perhaps this is the most
satisfactory result.” Krahn and Gafni (1993, p. 403) suggest a “consensus conference
approach.” This approach would create a targeted panel modeled on existing health care
consensus and guidelines panels; its panel draws from both empirical and normative
work, and exercises democratic deliberation through an open, public forum (Krahn &
Gafni, 1993, p. 416). Chief advantages are openness, flexibility, and responsiveness to

changing social values.

117

Ganiats (1992, p. 552) succinctly points out both the importance of discounting to
health policy and allocation, and the need for further, corrective research on the topic:

“Health policy and practice guideline formulation increasingly rely on
cost-effectiveness research. This research, therefore, leads to a form of
rationing...Rationing per se is not the problem, but some health policy
research does lead to conclusions that we, as a society, may not choose to
accept...[D]o we want to withhold funding from prevention programs
because we discount future health benefits?. . .Do most people really prefer
present health to future health? Does prognosis or age make a difference?
Does the type of program (preventive versus curative) matter?...The
paradox is likely caused by the relative youth of this field of research [see
West 1996, 239] and begs for more research into discounting, preferences,
and decision making.”

Such research is imperative as “[e]conomic analyses are playing an increasingly
important part in decisions about the allocation of limited resources between health care
interventions” (Anonymous, 1992, p. 148; see also Phillips & Holtgrave, 1997, p. 19).
“The choice of the rate of discount. . .is much more than a technical matter of interest only
to economists and policy analysts. It embodies the values on which we make social

choices...” (Krahn & Gafni, 1993, p. 405).

118

r—‘r'

Chapter 3: Conclusions

Emotionally disturbed children are a vulnerable population. They are from
disproportionately disadvantaged backgrounds. Indeed, some of the very risk factors for
mental illness are hallmarks of social disadvantage or insufficient social support.
Children are unable to advocate for themselves, vote, or monetarily contribute to causes
benefiting themselves. They are unable to medically help themselves and are often
considered incompetent to decide for themselves. Families, caregivers, and children face
prolonged emotional and economic suffering as a result of the chronicity of these
disorders. They suffer from stigmatized, misunderstood illnesses. Stigma remains a
significant problem with respect to understanding of mental illness and its treatment.
What is stigma? The following is a very personal account, provided by Mary Gullekson,
Ph.D., sister of a man diagnosed as paranoid schizophrenic at age 12.

“For me stigma means fear, resulting in lack of confidence. Stigma is loss,

resulting in unresolved mourning issues. Stigma is not having access to

resources, resulting in lack of useful coping skills. Stigma is being
invisible or being reviled, resulting in conflicts regarding being seen.

Stigma is lowered family esteem and intense shame, resulting in decreased

self-worth. Stigma is secrecy, resulting in lack of understanding. Stigma is

judgment, resulting in lack of spontaneity. Stigma is divisive, resulting in
distrust of others. Stigma is anger, resulting in distance. Most importantly,

stigma i5 hopelessness, resulting in helplessness. This all adds up to

decreased potential, of self and for others” (Fink & Tasman, 1992, p. 11).

Not even the psychiatric profession is immune from stigma’s taint: Paul Fink cites

Gordon Allport’s classic book, The Nature of Prejudice (1954): “man has a propensity to

prejudice...we, ‘almost instinctively,’ form in-groups and out-groups...[P]sychiatry is the

119

out-group of medicine” (Fink, 1983, p. 669). These observations remain pertinent nearly
twenty years later.

The psychiatric knowledge base is built on a foundation of research data largely
collected using adult subjects. Therefore, important questions remain unanswered
regarding treatment appropriateness and effectiveness, cost effectiveness of treatment and
prevention, and long-term outcomes for mentally ill children. We will not know what the
best interventions are until such data is collected, from well-designed, controlled,
longitudinal studies enrolling youth as subjects. Scattershot implementation of
inadequately evaluated interventions is not completely wasteful, but it does not maximize
the benefit from our health care dollar. Granted, it is true that “medical necessity and
appropriate treatment [are] relatively slippery concepts given the uncertainties of
knowledge of mental illness and the heterogeneity of patient populations” (Mechanic,
1999, p. 130; italics the author’s). However, this does not negate the need to address
research gaps, unnecessary suffering, and plentiful ethical dilemmas.

Fulfillment of youths’ needs for quality health care, social services, and a healthy
community in which to develop are increasingly threatened by demographic changes that
are shifting political attention, and resource allocation, toward the elderly. This dilemma
will become more aggravated by Americans’ persisting recoil from death, and
unwillingness and outright failure to debate and place limits on the application of costly,
life-sustaining technologies. More recently, popular media spotlights every morsel of
basic research offering even the slightest, remotest hope of extending the average lifespan
beyond 100 years. Yet, these soundbites fail to consider the explosion of chronic illnesses

that will inevitably result. For example, the number of hip fractures has recently

120

skyrocketed. Suspected reasons for this are that people are living longer, are more
sedentary thus have less muscle, and take multiple medications with the side effect of
dizziness (Anonymous, 2000, p. 3A).

This drives home the assertion that no medical technology is a panacea. As
medical science introduces ever more invasive, powerful, and complex interventions,
unforeseen and unintended effects (both clinical and economic) will accrue. Americans
persist in clamoring for exotic, dramatic and expensive interventions, while
straightforward interventions geared at preventing pediatric mental illness go
underfunded or unfunded. Transplantation, reproductive technologies, and gene therapy
are spotlighted in the media, medical journals, and bioethics literature. Multisector
treatment and preventive interventions for pediatric mental illness are not, despite having
just as many unresolved, interesting questions and dilemmas.

The evolution of the medical professions, driven by ideological, political, and
economic factors and incentives, has contributed to a dominant biomedical model poorly
accounting for both chronic illness and the multisector needs of children with SEDs and
their families. This model, reinforced and ideologically supported by both bioethics and
third-party insurance payment structures, also fails to account for the stark, messy reality
that it is not merely the individual child that is in desperate need of preventive or
treatment interventions, but the family and sometimes the community as well.

The most logical level for reform is the federal level. Americans should be
encouraged to view and accept the needs of emotionally disturbed youth as a federal
government responsibility, morally buttressed by appealing to collective decency toward

Americans of all ages (G. Osborn & J. Goddeeris, personal communication, May, 2000).

121

Ideally, under a deontological approach, collective social debate would inspire consensus
about the policy components of ‘collective decency.’ For example, society might
conclude that allocating a greater share of healthcare resources to emotionally disturbed
youth is the proper way to achieve collective decency. However, partly because of the
powerful political and nonmedical influences upon our healthcare system described
above, it appears that this deontological approach, via social consensus, is not achievable
at this time. A more workable alternative is a utilitarian approach incorporating a
maximization principle, wherein economics tools like cost-effectiveness analysis are used
to collect data that will guide policymakers in deciding which interventions make the best
use of scarce, collective medical resources (G. Osborn, personal communication, May,
2000). In this way, the conclusions and recommendations offered in this thesis do not
conflict with my initial assumptions about rights, and analyses of concepts of children’s
rights, put forth above (G. Osborn, personal communication, May, 2000). A choice need
not be made between (1) better providing for mentally ill children’s right to quality,
appropriate, accessible healthcare, and (2) applying data from economics tools like cost-
effectiveness analysis and cost-benefit analysis to policy formulation in resource
allocation (J. Goddeeris, personal communication, May, 2000). Rather, (2) helps us most

efficiently produce (1), maximizing the ‘bang for our buck.’

122

Recommendations

Several goals stand out:

1) America’s children would benefit from heightened nationwide promotion of
prevention and early intervention programs with demonstrated effectiveness. Such
promotion should be financial, political, and clinical in nature.

2) School-based health centers (SBHCs) represent an ideal site from which to launch
prevention and early intervention efforts. SBHCs are the most practical sites to pursue the
goal of maximizing children’s access and helpseeking of mental health services. “Schools
provide the ideal setting to implement primary prevention techniques” Meyers et a1 1987,
147). Programmatically and symbolically, SBHCs also embrace the concept that mental
illnesses are a multisector, not strictly medical, problem. Schools offer the potential to
maximize convenience and promote a caring or caretaking environment; such an
environment is the most obvious commonality in all demonstrably effective preventive
interventions. Of course, SBHCs are but one example of an environment with the
potential to foster prevention and early intervention.

3) Address research gaps by enrolling children in well-designed effectiveness and cost-
effectiveness studies.

4) Promote social discussion about US health care priorities, implications of extending
average lifespans, and the limitations of high technology.

5) Promote physicians’ and bioethicists’ acceptance of the biopsychosocial model.

6) Government should assume a stronger role, partly because health care providers and
children’s advocates alone cannot enact reform. Federal involvement has the potential to
improve access to prevention and early intervention. However, this does not negate the
critical role parents must play. As discussed at the end of Chapter 1, government can take
advantage of its existing infrastructure, to achieve the goal of implementing prevention
policy over the lifespan. Of moral concern is its great potential to create equity in
intergenerational resource allocation, as it sets and revises policy for America’s
nationwide public programs, like Medicaid and Medicare (G. Osborn, personal
communication, May, 2000).

7) Stakeholders should embrace the lifespan perspective, and the prevention and health
promotion efforts that logically follow.

8) Any explicit rationing should prioritize prevention services aimed at high-risk
children, so as to do the most good for the most people.

123

 

Were my recommendations put into place, we would have a better chance of
meeting our societal duties, such as meeting the welfare right of children to access to a
basic standard of health care (see the Introduction). Such reforms would better serve the
unmet needs of mentally ill children and other vulnerable groups. My recommendations
do not conceptually conflict with my rights-based assumptions throughout the rest of this
thesis.

Ideally, the federal government will assume a greater role. Federal government
represents the only overarching nationwide structure that could shape such efforts, via
(e.g.) insurance regulation or legislative changes. It is the only comprehensive
infrastructure America has to shape policy (G. Osborn, personal communication, May,
2000). Mentally ill children across the country are not so different in clinical
presentation, socioeconomic status, or etiology that they require fifty separate state
approaches, with significant variations in coverage and organizational structure. A large
number of mentally ill children are Medicaid-eligible; such interstate variability applies
to Medicaid as well. “Even in cases where the federal government pays most of the cost,
poor, low-tax states have been reluctant to make the necessary investment. The result is
that the quality of one’s benefits under the Medicaid program depends greatly on where
one lives” (Mechanic, 1999, p. 139).

Nor can providers and advocates alone enact reform or significantly alter
Americans’ beliefs. “[S]ociety will probably not alter its priorities and decisions merely
because mental health workers feel that current conditions may lead to poor mental
health. These and similar battles, if they are to be fought at all, must be fought in the

political realm-a realm in which mental health workers have demonstrated no special

124

ability” (Mechanic, 1999, p. 75; italics mine). David Mechanic forcefully argues for a
greater federal role in mental health care:

“While it is plausible that some states left on their own to use federal
Medicaid funds could be more innovative and effective, the danger is that
other states would draw back from health care commitments in the face of
competing budgetary needs and ideological interest groups, increasing the
range of program integrity among states. A nationally supervised program
maintains a minimum decent standard for states that have a limited
commitment to the disabled population, poor children, and the elderly.
Civil rights offers a good analogy where, in the absence of federal
standards, large disparities among states may have persisted” (Mechanic,
1999,p.140)

Increased federal control would also improve children’s access to effective
prevention and treatment interventions. “All too frequently,...effective programs are
simply unavailable in communities. It is essential to expand the supply of effective,
evidence-based services throughout the Nation [sic]” (Satcher, 1999, p. 455). Political
and corporate decisionmakers and stakeholders should work to recognize the limitations
of their myopic, short-term perspectives toward investments in prevention and
multisector, community interventions. Such recognition would encourage adoption of a
lifespan perspective, toward health promotion and disease prevention.

“Prevention programs, implemented correctly..., can not only survive, but

also flourish in times of wealth as well as in times of downsizing. As

American industry has discovered, short-term gains and outcomes are only

a small part of determining long-term success. A long-term [e.g., lifespan]

vision and plan based on solid research and forward thinking create

products and services that people want and need. It is time that those

involved with public policy decisions involving the development,
evaluation, and dissemination of prevention programs (i.e., government at

all levels), recognize the accrued benefits that can be had by investing
more heavily in prevention” (Hightower, 1997, p. 210).

125

It has generally been argued throughout this report that capitation’s spread has
negatively affected quality of care for mentally ill children, partially through restricted
access to specialists. However, critics point out the dearth of research data, particularly
for pediatric populations, regarding the import of provider credentials with respect to
outcomes. Some bioethicists argue that these sorts of questions about quality of care
overshadow important moral questions, such as “What level of quality do we have a
social or moral obligation to provide?” (Boyle & Callahan, 1995, p. 12).

Service priority should extend toward children exhibiting known risk factors,
followed by those with mild illness, followed by the most severely ill youth. Moreover,
“priorities in care go to...those interventions that have been proven most effective”
(Mechanic, 1999, pp. 142-143). Prevention creates the most good for the most people;
however, since we cannot prevent all mental illness, we must provide for a caring
treatment environment for mentally ill individuals.

When there is rationing due to resource scarcity, ideally the worst off would be
subject to less rigorous rationing mechanisms (Boyle & Callahan, 1995, p. 14). The
spread of managed care, moreover, requires a heightened level of monitoring of service
quality and access, “particularly in regard to subgroups of the population who are most
vulnerable, either because of the nature and quality of their disorders or their social
disadvantage” (Mechanic, 1999, p. 150).

Past experience with ineffective public demonstration projects geared at healthy
development illustrates that a society that merely tries to “’invest’ its way out of social
problems” absolves parents of personal responsibility and encourages dependency

(Samuelson, 1998, p. 45). “[W]hat people do for themselves matters more than what

126

government tries to do for them;” financial supports for the poor are more appropriately
viewed as “expressions of collective decency than ‘investments’” (Samuelson, 1998, p.
45). However, such investments in quality of life (“collective decency”) sometimes
represent the most productive use of scarce resources (G. Osborn, personal
communication, May, 2000).

While it is narrow-minded and often incorrect to blame parents for causing a
child’s mental illness, it may be rational (although not particularly useful) to blame them
for individual choices and behaviors contributing to an at-risk environment. The most
important ‘investments’ in children are from parents; “large federal programs...can’t
undo parental failure. Nor can they offset the ill effects of family breakdown. To think
otherwise sanctions the behaviors that put children at risk” (Samuelson, 1998, p. 45).
However, government has the potential to attenuate effects of poor parenting (G. Osborn,
personal communication, May, 2000).

The dilemmas covered in this thesis should be important to all of us, whether we
personally are touched by pediatric mental illness or not. Yet it remains the case that
“[t]he fact that our national future depends on how each individual kid grows up has not

made much of a dent” (Kochakian, 1998, p. 5).

127

REFERENCES

128

REFERENCES

American Psychiatric Association (1997). Public mental health glossary. In Public
mental health: A changing system in an era of managed car_e_ (pp. 67-73). Washington,
DC: Author.

American Psychiatric Association. (1997). Special considerations for the care of
individuals with serious mental illness. In Public mental health: A charging system in aa
gm; of managed ca_r§ (pp. 37-40). Washington, DC: Author.

Arrrrein, C., Vulser, C., Farge, D., Guillemain, R., Dreyfus, G., Couetil, J. P., &
Carpentier, A. (1990). Is heart transplantation a valid therapy in elderly patients?
Transplantation Proceedings. 2;, 1454-1456.

Anderson, G. (1982). Fibromyalgia and the biomedical model [Letter to the
editor]. New Zeal_and Medical Journal, 95, 243.

Anglin, T. M., Naylor, K. E., & Kaplan, D. W. (1996). Comprehensive school-
based health care: High school students’ use of medical, mental health, and substance
abuse services. Pediflics. 97. 318-330.

Anonymous (1966). The gospel according to Matthew: The final judgment. In
Good news for modern maLn: The new tesarment in today’s English version (pp. 65-66),
New York, NY: American Bible Society.

Anonymous (1992). Discounting health care: Only a matter of timing? Lancet,
3119, 148-149.

Anonymous (1998). Age- and state-specific prevalence estimates of insured and
uninsured persons: United States, 1995-1996. Morbidity& Mortality Weekly Report, fl.
529-532.

Anonymous (1998). State-specific prevalence estimates of uninsured and
underinsured persons: Behavioral Risk Factor Surveillance System, 1995. Morbidity &
Mortality Weekly Remrt, 47, 51-55.

Anonymous (1999). 1999 Social Ministay ‘scattering’ message to Congr_§ss [On-
line]. Available: http://www.nccbuscc.orglsdwp/congresshtm

Anonymous (2000, March 31). Broken hips on the rise. Pittsbugh Post-Gazetta,
A3.

129

Armstead, R. C., Elstein, P., & Gorman, J. (1995). Toward a 21St century quality-
measurement system for managed-care organizations. Health Care Financing Review, 16,
25-37.

Armstrong, D. (1987). Theoretical tensions in biopsychosocial medicine. Social
Science & Medicirfigj, 1213-1218.

Barnett, W. S. (1998). Long-terrn cognitive and academic effects of early
childhood education on children in poverty. Preventive MedicineLgl, 204-207.

Behrman, R. E. (1998). Statement of purpose. Future of Children: Children and
Managed Health Care,& 1.

Bickman, L., Summerfelt, W. T., & Noser, K. (1997). Comparative outcomes of
emotionally disturbed children and adolescents in a system of services and usual care.
Psyclaatric Services,4_8,, 1543-1548.

Boyle, P. J ., & Callahan, D. (1995). Managed care in mental health: The ethical
issues. LIe_alth Affairs, 14, 7-22.

Burns, B. J., & Hoagwood, K. (1998). Improving outcomes for children and
adolescents with severe emotional and behavioral disorders: Current and future
directions. In M. H. Epstein, K. Kutash, & A. J. Duchnowski (Eds.), Outcomes for
children fl! youth with emotional and behavioral disordegnd their families: Prom‘a_m_§
and evaluation best practices (pp. 685-707). Austin, TX: PRO-ED.

Burton, W. N., Hoy, D. A., Bonin, R. L., & Gladstone, L. (1989). Quality and
cost-effective management of mental health care. Journal of Occupatiorfl Medicine, 3L
363-367.

Burton, W. N., & Conti, D. J. (1991). Value-managed mental health benefits.
Journal of Occupzarfll Medicine, 33, 31 1-313.

Calkins, M. E. (1993). Ethical issues in the elderly ESRD patient. ANNA Journal
29, 569-571.

 

Callahan, D. (1987). Old age in new times. In D. Callahan, Setting Limits:
Medical goals in an aging society (pp. 201-224). New York, NY: Simon & Schuster.

Callahan, D. (1987). Allocating resources to the elderly. In D. Callahan, Setting
Limits: Medical goals in an aging society (pp. 115-158). New York, NY: Simon &
Schuster.

Callahan, D. (1987). Setting Limits: Medical goals in an aging society. New
York, NY: Simon & Schuster.

130

Callahan, D. (1990). Must the old and young compete for health care resources?
Neurosuagerv. 27, 160-164.

Callahan, D. (1992). Reforming the health care system for children and the
elderly to balance cure and care. Academic Medicira 6; 219-222.

Callahan, D. (1993). Response to Roger W. Hunt. Journal of MedicarlEthicsalg
24-27.

Chang, C. F., Kiser, L. J ., Bailey, J. E., Martins, M., Gibson, W. C., Schaberg, K.
A., Mirvis, D. M., & Applegate, W. B. (1998). Tennessee’s failed managed care program
for mental health and substance abuse services. Journal of the AmefiggMedr’an
Associationa279, 864-869.

Chapman, G. B., & Elstein, A. S. (1995). Valuing the future: Temporal
discounting of health and money. Medical Decision Making, 15, 373-386.

Christ, A. E. (1991). School consultation. In M. Lewis (Ed.), Child and adolescent
psychiatry: A comprehensive textbook (pp. 1072-1077). Baltimore, MD: Williams &
Wilkins.

Churchill, L. R. (1988). Should we ration health care by age? Journal of the
American Gegatrics Society. 36, 644-647.

Clark, P. G. (1985). The social allocation of health care resources: Ethical
dilemmas in age-group competition. Gerontolgist. 2;, 119-125.

Cohen, C. I. (1993). The biomedicalization of psychiatry: A critical overview.
Community Mental Heaath JoumaL 22 509-521.

Conrad, P., & Schneider, J. W. (1980). Deviance and medicalization: From
badness to sickness. St. Louis, MO: C. V. Mosby.

Coren, H. Z. (1992). Discounting our future [Letter to the editor]. Western Joumal
of Medicine, 157. 472.

Cutler, D. L., McFarland, B. H., & Winthrop, K. (1998). Mental health in the
Oregon Health Plan: Fragmentation or integration. Adminigation & Policy in Menta_l
Health 25 361-386.

 

Daniels, N. (1983). Justice between age groups: Am I my parents’ keeper?
Mflank Memorial Fund Quarterly: Health & Society, 61, 489-522.

Daniels, N. (1985). Just h_ealth care. New York, NY: Cambridge University Press.

131

Daniels, N. (1985). Family responsibility initiatives and justice between age
groups. LanaMedicine & Health Care, 13, 153-159.

Daniels, N. (1989). The biomedical model and just health care: Reply to Jecker.
The Journal of Medicine and Philosophyach 677-680.

Davis, M., & Stoep, A. V. (1997). The transition to adulthood for youth who have
serious emotional disturbance: Developmental transition and young adult outcomes.
JoumaL of Mental Health Administration, 24, 400-427.

Deal, L. W., & Shiono, P. H. (1998). Medicaid managed care and children: An
overview. Future of Children, 8, 93-104.

Eisenberg, L. (1992). Child mental health in the Americas: A public health
approach. Bulletin of the Pan American Health Organization, 26, 230-241.

Elders, J. (2000, April). Health care in theI21 5’ Century. Paper presented at the
meeting of Alpha Omega Alpha, Pittsburgh, PA.

Emanuel, E. J., & Dubler, N. N. (1995). Preserving the physician-patient
relationship in the era of managed care. JoumaL of the Americap Medical Assocmm,
213, 323-329.

Emanuel, E. J ., & Emanuel, L. L. (1997). Preserving community in health care.
Joumiof Health Politics, PoliQ/ and Law, 22, 147-184.

 

Engel, G. L. (1980). The clinical application of the biopsychosocial model. 111a
Ameriarn Joumfl of Psychiatry, 137, 535-544.

Engel, G. L. (1992). How much longer must medicine’s science be bound by a ‘
17‘h century world view? Psychotherapy and Psychosomatics, 57, 3-16.

England, M. J., & Cole, R. F. (1995). Children and mental health: How can the
system be improved? Health Affairs 14, 131-138.

 

Faenza, M. M., & McElhaney, S. J. (1997). Reframing prevention advocacy and
looking ahead. In G. W. Albee & T. P. Gullotta (Eds), Primary prevention worlcs: Issues
in children’s and families’ lives (Vol. 6, pp. 401-410). Thousand Oaks, CA: Sage
Publications.

 

 

Fee, E., & Krieger, N. (1993). Understanding AIDS: Historical interpretations and
the limits of biomedical individualism. American Journal of Public Health 83 1477-
1486.

 

Feldman, R., Escribano, C., & Pellise, L. (1998). The role of government in health
insurance markets with adverse selection. filth Economics, 7, 659-670.

132

Feldman, R., Finch, M., & Dowd, B. (1989). The role of health practices in HMO
selection bias: A confirmatory study. Inguig, 26, 381-387.

Fink, P. J. (1983). The enigma of stigma and its relation to psychiatric education.
Psychiatric Annals, 13, 669—690.

Fink, P. J ., & Tasman, A. (Eds). (1992). Stigma and mental illness. Washington,
DC: American Psychiatric Press.

Flaherty, L. T., Wiest, M. D., & Warner, B. S. (1996). School-based mental health
services in the United States: History, current models and needs. Commanity Mental
Health Journal 32 341-352.

 

Flisher, A. J ., Kramer, R. A., Grosser, R. C., Alegria, M., Bird, H. R., Bourdon,
K. H., Goodman, S. H., Greenwald, S., Horwitz, S. M., Moore, R. E., Narrow, W. E., &
Hoven, C. W. (1997). Correlates of unmet need for mental health services by children
and adolescents. Psychological Medicina 21, 1145-1154.

Foss, L. (1994). Putting the mind back into the body: A successor scientific
medical model. Theoretical MedicineJS. 291-313.

Fowler, E. J ., & Anderson, G. F. (1996). Capitation adjustment for pediatric
populations. Pediatrics, 98, 10-17.

Fox, H. B., Wicks, L. B., & Newacheck, P. W. (1993). Health maintenance
organizations and children with special health needs. American Journal of Diseatses of
Children, 147, 546-552.

Frank, R. G., Koyanagi, C., & McGuire, T. G. (1997). The politics and economics
of mental health ‘parity’ laws. Hgalth Affairs, 1@ 108-119.

Freeman, M. (1997). The moral status of children. In M. Freeman, The moral
status of children: Essays on the rights of the child (pp. 1-17). Cambridge, MA: Kluwer
Law International.

Friedman, R. M. (1986). Major issues in mental health services for children.
Administration in Mental Healath, 14, 6-13.

Ganiats, T. G. (1992). On sale: Future health care. The paradox of discounting.
Western Journal of Medicine 156, 550-553.

 

Ganiats, T. G. (1994). Discounting in cost-effectiveness research. Medical
Decision Making, 14, 298-303.

133

Ganiats, T. G. (1997). Prevention, policy, and paradox: What is the value of
future health? American Journal of Preventive Medicine, 13, 12-17.

Gans, J. E., Alexander, B., Chu, R. C., & Elster, A. B. (1995). The cost of
comprehensive preventive medical services for adolescents. Archives of Pediapics &
Adolescent Medicine, 149, 1226-1234.

Gerson, M. (1999, March 22). Better drugs or lower bills? You can have only one.
USA Today, p. A23.

Gleicher, N. (1991). Expansion of health care to the uninsured and underinsured
has to be cost-neutral. Journal of the American Medical Association, 265, 2388-2390.

Goodstein, L. D. (1975). Self-control and therapist-control: The medical model in
behavioral clothing. Journal of AbnormalaPsychology, 8L 178-180.

Grant, N. I. R. (1991). Primary prevention. In M. Lewis (Ed), Child and
adolescentpaychiatry: A coraprehensive textbook (pp. 918-929).

Grapsa, 1., & Oreopoulos, D. G. (1996). Practical ethical issues of dialysis in the
elderly. Seminars in Nephrology, 16, 339-352.

Grob, G. N. (1991). From hospital to community: Mental health policy in modern
America. Psychiatric Quarterly, 62, 187-212.

Helman, C. G. (1985). Psyche, soma, and society: The social construction of
psychosomatic disorders. Culture, Medicine and P5ychiat_ry, 9, 1-26.

Henley, A. J., & Clifford, M. C. (1993). Managed health care for Medicaid
enrollees: The Philadelphia Model. Journal of Health Care for the Poor & Underserved,
a, 210-218.

Hewa, S., & Hetherington, R. W. (1995). Specialists without spirit: Limitations of
the mechanistic biomedical model. Theoretical Medicine 16 129-139.

 

Hi ghtower, A. D. (1997). Primary Mental Health Project. In G. W. Albee & T. P.
Gullotta (Eds), Primary prevention works: Issues in childIen’sadeamilies’ lives (Vol.
6, pp. 191-212). Thousand Oaks, CA: Sage Publications.

Hisashige, A. (1994). Health economic analysis of the neonatal screening
program in Japan. International Journal of Technology Assessment in Health Care, 10,
382-391.

Horwitz, S. M., Leaf, P. J ., & Leventhal, J. M. (1998). Identification of
psychosocial problems in pediatric primary care: Do family attitudes make a difference?
Archives of Pediatrics & Adolescent Medicine 152 367-371.

 

134

Horwitz, S. M., & Stein, R. E. K. (1990). Health maintenance organizations
versus indemnity insurance for children with chronic illness: Trading gaps in coverage.
American Joumza of Diseases of Childrena44, 581-586.

Houlgate, L. D. (1980). Goods and needs. In L. D. Houlgate (Ed.), The child and
the state: A normative theory of Menile rights (pp. 104-116). Baltimore, MD: The Johns
Hopkins University Press.

Hummelvoll, J. K., & da Silva, A. B. (1994). A holistic-existential model for
psychiatric nursing. Perspectives in Psychiatric Carea30, 7-14.

Jecker, N. S. (1989). Towards a theory of age-group justice. Joumaa of Medicine
& Philosophy, 14, 655-676.

Jecker, N. S., & Pearlman, R. A. (1989). Ethical constraints on rationing medical
care by age. Jouma of the American Gefltrics Society. 31 1067-1075.

Johannesson, M. (1992). On the discounting of gained life-years in cost-
effectiveness analysis. International Journal of Technology Assessment in Health Care, 8,
359-364.

Johannesson, M., & Levin, L. A. (1991). Comment on ‘Dealing with

discounting.’ Intemaaiopal Journal of Technology Assessment in Health Care, 7, 651-
653.

 

John, M. (1996). In whose best interest? In M. John (Ed.), Children in our charge:
The child’s right to resources (pp. 1-16). Bristol, PA: Jessica Kingsley Publishers.

Kahn, C. N. (1999, March 2). Managed care means lower costs. USA Today, p.
A14.

Kaplan, D. W., Calonge, B. N ., Guernsey, B. P., & Hanrahan, M. B. (1998).
Managed care and school-based health centers: Use of health services. Archives of
Pediatrics & Adolescent Medicine 152 25-33.

 

Karoly, L. A., Greenwood, P. W., Everingham, S. S., et al. (1998). Investing in
_o_u; childaen: What we lanow and don’t know about the costs aid benefits of ea_r_'l_y
childhood interventions (RAND Publication No. MR-898-TCWF) [On-line]. Available:
www.rand.org/publications/mr/mr898/

Keeler, W. H. (1995). A Catholic apmal: Leadership for the common good-A
statement of the President of the National Conference of Catholic Bishops [On-line].

Available: http://www.osjspm.org[keeler.htm

135

Kelleher, K. J ., Childs, G. E., Wasserman, R. C., McInemy, T. K., Nutting, P. A.,
& Gardner, W. P. (1997). Insurance status and recognition of psychosocial problems: A
report from the Pediatric Research in Office Settings and the Ambulatory Sentinel
Practice Networks. Archives of Pediatrics & Adolescent Medicine, 151, 1109-1115.

Kelleher, K. J ., & Starfield, B. (1990). Health care use by children receiving
mental health services. Pediatrics, 85, 114-118.

Kessler, R. J. (1990). Models of disease and the diagnosis of schizophrenia.
Psycgtry, 53, 140-147.

Knitzer, J. (1982). Unclaimed children: The failure oLpublic responsibilityto
children and adolescents in need of mental health services. Washington, DC: Children’s
Defense Fund.

Knitzer, J. (1988). Policy perspectives on the problem. In J. G. Looney (Ed.),
Chronic mental illness in children and_adolescents (pp. 53-72). Washington, DC:
American Psychiatric Press.

Kochakian, M. J. (1998, February 26). Our kids are not a hobby: Raising children
is important for the entire country. Pittsburgh Post-Gazetta p. C5.

Krahn, M., & Gafni, A. (1993). Discounting in the economic evaluation of health
care interventions. Medical Care 31 403-418.

 

Laske, A., Niederhauser, U., Carrel, T., von Segesser, L., & Turina, M. (1992).
Are elderly organ donors acceptable for heart transplantation? Transplantation
Proceedings, 24, 2679-2680.

Levey, S., & Hill, J. (1989). National health insurance: The triumph of
equivocation. New England Journal of Medicine, 32_1_, 1750-1754.

Lewis, P. A., & Chamy, M. (1989). Which of two individuals do you treat when
only their ages are different and you can’t treat both? Journal of Medical Ethics 15 28-
32.

 

Lipscomb, J. (1989). Time preference for health in cost-effectiveness analysis.
Medical Care 27 (Suppl. 3), 3233-8253.

 

Lipscomb, J. (1996). The proper role for discounting. Search in progress. Medical
Care 34 (Suppl. 12), D81 19-DS123.

 

Little, S. (1981). Consumerism in the doctor-patient relationship. Journal of
Medical Ethics 7 187-190.

 

136

Looney, J. G. (1988). The struggle for a strategy. In J. G. Looney (Ed.), Chronic
mental illness in children and adolescents (pp. 237-260). Washington, DC: American
Psychiatric Press.

Lyman, K. A. (1989). Bringing the social back in: A critique of the
biomedicalization of dementia. The Gerontologist, 22, 597-605.

Manton, K. G. (1986). Past and future life expectancy increases at later ages:
Their implications for the linkage of chronic morbidity, disability, and mortality. Journal

of Gerontology, 41, 672-681.

Marshall, T. (1997). Discounting the future: Influence of the economic model
[Letter to the editor]. Journal of Epidemiology & Community Haalm 5 L 339-340.

Matthews, M. (1998, October 1). Government rules are to blame: Today’s debate-
getting health insurance. USA Todaa p. A14.

Mechanic, D. (1998). Emerging trends in mental health policy and practice.
fiahh Affaigpl7, 82-98.

Mechanic, D. (1999). Conceptions of the causes of and means of controlling
mental illness. In D. Mechanic, Mental_health and social mlicy: The emergence of
managed care (4‘h ed., pp.72-77). Boston, MA: Allyn & Bacon.

Mechanic, D. (1999). The financing and delivery of mental health services. In D.
Mechanic, Mental health and social [Niki The emergence of managed car; (4‘h ed., pp.
127-150). Boston, MA: Allyn & Bacon.

 

Meyer, M. (1998). Oh no, here we go again: Health-care costs are soaring-and
companies are passing the increases along to their workers. Newsweek 46-47.

 

Meyers, J., & Parsons, R. D. (1987). Prevention planning in the school system. In
J. Hermalin & J. A. Morell (Eds), Prevention planning in mental health: Vol. 9. Saga
studies in community mental health (pp. 111-150). Beverly Hills, CA: Sage Publications.

Miller, M. (2000, January 19). Britain weighs curbs on spanking: A flat-handed
bottom swat would be OK, but little else. The Pittsburgh Post-Gazette, p. 4A.

Minkler, M., & Robertson, A. (1991). Generational equity and public health
policy: A critique of ‘age/race war’ thinking. Journal of Public Health Policy, 12, 324-
343.

Moody, H. R. (1978). Is it right to allocate resources on grounds of age? In E. L.

Bandman & B. Bandman (Eds.), Bioethics and human rights: A reader for healt_h
professionals (pp. 197-201). Boston, MA: Little, Brown and Company.

137

Moody, H. R. (1988). Generational equity and social insurance. Journal of
Medicine & Philosmghy, 13, 31-56.

Moody, H. R. (1991). Allocation, yes; Age-based rationing, no. In R. H. Binstock
& S. G. Post (Eds.), Too old for health care? Controversies in medicinealawaeconomics
and ethics (pp. 180-203). Baltimore, MD: Johns Hopkins University Press.

Moynihan, D. P. (1996). When principle is at issue (Opinion). The Washington
_P_o_s_1 [On-line]. Available: http://iobs.washingtoppostcom

Neff, J. M., & Anderson, G. (1995). Protecting children with chronic illness in a
competitive marketplace. Journal of the Ameriaan MedicalaAssoa'ation, 274, 1866-1869.

Newacheck, P. W. (1989). Adolescents with special health needs: Prevalence,
severity, and access to health services. Pediauaica84, 872-881.

Pasnau, R. O. (1987). The remedicalization of psychiatry. Hospital and
Communitj Psychiatry, 38, 145-151.

Pear, R. (1999, February 23). New effort aims to enroll children in insurance
plans. The New York Times.

Phillips, K. A., & Holtgrave, D. R. (1997). Using cost-effectiveness/ cost-benefit
analysis to allocate health resources: A level playing field for prevention? American
Joumza of Preventive Medicine, 13, 18-25.

Piotrkowski, C. 8., Collins, R. C., Knitzer, J ., & Robinson, R. (1994).
Strengthening mental health services in Head Start: A challenge for the 19905. American

Psychologist, 49, 133-139.

Pomerantz, J. M. (1999). Managed care’s treatment of chronic and relapsing
disease. Dmg Benefit Trends [On-line serial], 11(11). Available FI’P: Hostname:
Medscape.com: www.medscape.com/scp/dbt/1999/v1 l.nl 1/d591 . . ./pnt-dS912.pome.htm

Porath, A., McNutt, R. A., Smiley, L. M., & Weigle, K. A. (1990). Effectiveness
and cost benefit of a proposed live cytomegalovirus vaccine in the prevention of
congenital disease. Reviews of Infectious Diseases 12 31-40.

 

Pumariega, A. J. (1997). Community-based systems of care for children’s mental
health services. Journal: of the Association for Acalemic Minority Physimnsa8, 67-73.

Quilligan, E. J ., & Paul, R. H. (1975). Fetal monitoring: Is it worth it? Obstetrics
and Gynecology, 45, 96-100.

138

Rafferty, F. T. (1991). Effects of health delivery systems on child and adolescent
mental health care. In M. Lewis (Ed.), Child and adolescent psaLCMatry: A comprehensive
textbook (pp. 1168-1178). Baltimore, MD: Williams & Wilkins.

Redelmeier, D. A., Heller, D. N., & Weinstein, M. C. (1994). Time preference in
medical economics: Science or religion? MedicalaDecision Making, 14, 301-303.

Richart, D. W., & Bing, S. R. (1989). Child advocacy: Roots, differences, and
frictions. In D. W. Richart & S. R. Bing (Eds), Fairness is a kid’s game: Childrep,public
palicyand child advocacy in the States (pp. 25-38). Louisville, KY: Kentucky Youth
Advocates.

 

Richart, D. W., & Bing, S. R. (1989). The status of children and the role of
government. In D. W. Richart & S. R. Bing (Eds), Fairness is aakid’s game: Childgp,
public mlicy, and child advocgyain the Stag (pp. 3-7). Louisville, KY: Kentucky
Youth Advocates.

Riley, A. W., Finney, J. W., Mellits, E. D., Starfield, B., Kidwell, S., Quaskey, S.,
Cataldo, M. F., Filipp, L., & Shematek, J. P. (1993). Determinants of children’s health
care use: An investigation of psychosocial factors. Medical Care 31 767-783.

 

Rodd, N. (1989). Quest for health (A fable). Social Science & Medicine, 29, 895-

 

896.

Rosen, G. (1968). Madness in society: Chapters in the historical sociology of
mentalillness. Chicago, IL: The University of Chicago Press.

Rothbard, A. B. (1999). Managed mental health care for seriously mentally ill
populations. Current Opinion in Psychiatgy, 12, 211-216.

Samuelson, R. J. (1998, February 23). Investing in our children. Newsweek 45.

 

Sanger, D. E. (1999, July 9). Big racial disparity persists in Internet use. The New
York Times.

Sardell, A. (1990). Child health policy in the U. S.: The paradox of consensus.
Journal of Health Politics, Policy & Law, 15, 271-304.

Satcher, D. (1999). Menal health: A report of the Surgeon Genepal [On-line].
Available: http://www.surgeongeneral.com/lilfiray/mentalhealth/index.html

Scholle, S. H., & Kelleher, K. J. (1998). Opportunities and threats for children
with serious emotional disturbance and their families. In M. H. Epstein, K. Kutash, & A.
J. Duchnowski (Eds), Outcomes for children_and youth with emotional and behavioral

disorders and their families: Programs and evaluation bestaractices (pp. 659-684).
Austin, TX: PRO-ED.

 

139

Schowalter, J. E. (1998). Some early lessons from the rise of managed behavioral
health care in the United States. Israel Joumal of Psychiatry & Related Sciences, 35, 165-
173.

Shatin, D., Levin, R., Ireys, H. T., & Haller, V. (1998). Health care utilization by
children with chronic illnesses: A comparison of Medicaid and employer-insured
managed care. Pediatrics, 10;, E441-E449.

Silver, L. B. (1988). The scope of the problem in children and adolescents. In J.
G. Looney (Ed.), Chronic mental illness in children and adolescents (pp. 39-51).
Washington, DC: American Psychiatric Press.

Stroul, B. A., Pires, S. A., Armstrong, M. 1., & Meyers, J. C. (1998). The impact
of managed care on mental health services for children and their families. Future of
Children: Children and Managed Health Care, 8, 119-133.

Stroul, B. A., Pires, S. A., Roebuck, L., Friedman, R. M., Barrett, B., Chambers,
K. L., & Kershaw, M. A. (1997). State health care reforms: How they affect children and
adolescents with emotional disorders and their families. Jouraaa of Mental Heath
Administraion, 2_4, 386-399.

Thoene, J ., Higgins, J ., Krieger, I., Schmickel, R., & Weiss, L. (1981). Genetic
screening for mental retardation in Michigan. American Journal of Mental Deficiency,
8_5_, 335-340. ~

Trickett, E. J. (1992). Prevention ethics: Explicating the context of prevention
activities. Ethics & Behavior 2 91-100.

 

United Nations General Assembly/United Nations High Commissioner for
Human Rights (1989). United Napons convention on the righta of the chiLd [On-line].
Available: www.freethechildren.org/ratify.htm

van Barneveld, E. M., van Vliet, R. C., & van de Ven, W. P. (1996). Mandatory
hi gh-risk pooling: An approach to reducing incentives for cream skimming. Inguig, 33,
133-143.

VandenBos, G. R., & Miller, M. O. (1980). Delinquency prevention programs:
Mental health and the law. In R. H. Price, R. F. Ketterer, B. C. Bader, & J. Monahan

(Eds), Prevention in mental health: Research, mlicy, and practice (pp. 135-150). Beverly
Hills, CA: Sage Publications.

Wassef, A. A., Morgan, V. R., Ramirez, 8. Z., & Collins, M. L. (1998). Group

programs for adolescent serious emotional disturbance and non-serious emotional
disturbance students. In D. A. Sabatino & B. L. Brooks (Eds), Contemmfly

140

interdisciplinary interventions for children with emotional/behavioral disorders (pp. 763-
780). Durham, NC: Carolina Academic Press.

Watts, C. A., Jackson, M., & LoGerfo, J. P. (1979). Cost effectiveness analysis:
Some problems of implementation. Medical Care, 17, 430-434.

Welch, H. G. (1991). Comparing apples and oranges: Does cost-effectiveness
analysis deal fairly with the old and young? The Gerontologist, 31, 332-336.

West, D. W., Stuart, M. E., Duggin, A. K., & DeAngelis, C. D. (1996). Evidence
for selective health maintenance organization enrollment among children and adolescents
covered by Medicaid. Archives of Pediatrics & Adolescent Medicine, 150, 503-507.

West, R. R. (1996). Discounting the future: Influence of the economic model.
Joumza of Epidemiology & Community Health, 50, 239-244.

White, J. (1997). A struggle towards health in health service policy-making. In E.
Smith (Ed.), Integrity and change: Mental health in the marketplace (pp. 151-152).
London, UK: Routledge.

Wikler, D. (1988). Ought the young make health care decisions for their aged
selves? Journal of Medicine & Philosophy, 13, 57-71.

Williams, S. J ., Diehr, P., Drucker, W. L., & Richardson, W. C. (1979). Mental
health services: Utilization by low income enrollees in a prepaid group practice plan and
in an independent practice plan. Medical Care 17 139-151.

 

Woolston, J. L. (1991). Psychiatric inpatient services for children. In M. Lewis
(Ed.), Child and Adolescent Psychiatry: A comprehensive textbook (pp. 890-894).
Baltimore, MD: Williams & Wilkins.

Wringe, C. (1996). Children’s welfare rights: A philosopher’s view. In M. John
(Ed.), Children in our Cfllrge: The child’s right to resources (pp. 19-22). Bristol, PA:
Jessica Kingsley Publishers.

Youngner, S. J. (1997). Consultation-liaison psychiatry and clinical ethics:
Historical parallels and divisions. Psychosopartics, 38, 309-312.

Zhang, M., Lancaster, B., Clardy, J. A., & Smith, G. R. (1999). Mental health
capitation for children and adolescents under Medicaid. Psychaiatric Services, 50, 189-
191.

141