SPECIAL FACES

Understanding

Facial Disfigurement

A Conference of the

National Foundation for Facial Reconstruction

November 18, 1992

New York, NY

Conference Chairman:

Robert E. Bochat

TABLE OF CONTENTS
VII

Foreword
Robert E. Bochat
SESSION

I - UNDERSTANDING FACIAL DISFIGUREMENT

Welcome

2
J. Peter Hoguet

Introduction to Facial Disfigurement.

Joseph G. McCarthy, MD

The Scope of the Problem

Charlotte Druschel, MD

SESSION

11-

PSYCHOSOCIAL ASPECTS

Social and Psychological Challenges for Individuals with

Facial Disfigurement.
Thonlas Pruzinsky, PhD

15

Body Image Therapy for Persons with Facial Disfigurement:

A Cognitive-Behavioral Approach
Thomas F. Cash, PhD

25

Th~

34

Beauty of Disfigurement.
Alan Jeffry Breslau

The Impact of Hospitalization on the Pediatric Craniofacial

Patient and Family
Patricia Chibbaro, RN

4()

Discussion

5]

SESSION

III - INSURANCE ISSUES

WITH FACIAL DISFIGUREMENT

New York State Insurance Department.

Thomas Zyra, Esq.

55

Patient Experiences with Medical Insurance

David Attenberg
Craig Robertson

58

Blue Cross/Blue Shield

Thomas Blumenfeld, MD

63

Medicaid

67

Joseph Guy, PhD

Major Medical & Casualty Programs
Katharine Worthington

70

Health Maintenance Organizatons

Gordon M. Koota, MD

77

Discussiol1

81

SESSION

IV - VOCATIONAL PROBLEMS OF FACIAL DISFIGUREMENT

A Rehabilitation Perspective

90

Orin Lehman
Patient Experience
Caroline Rubino

95

State Vocational Services

John Bertrand

98

1() 1

Job Placenlent

Prince Attoh
Role of" Employers
Elisa G. Lederer

105

Discussion

109

SESSION V - PUBLIC POLICY ISSUES

Americans With Disabilities Act.
Allen I?agin, Esq.

114

Getting Action - President's Committee

Dick Sheppard

118

A California Experience
Michael Cedars, MD

1.24

The Role of Support Groups

Elisabeth Bednar
Betsy Old

128

Discussion

137

Appendix

142

FOREWORD
Robert E. Bochat
The genesis of the Conference, Special Faces:
Understanding Facial Disfigurement, traces back to 1963
when a meeting at NYU Medical Center was organized by
John Marquis Converse, MD, then director of the Institute of

Reconstructive Plastic Surgery, to focus for the first time on

the problems of the facially disfigured.

Today the subject is even more critical. An estimated 500,000

Americans are disfigured each year by disabling accidents, birth defects

and deformities resulting from diseases such as cancer. One child in 400 is
born with congenital facial deformity, and some 6300 children are born
each with Cleft Lip and Cleft Palate. The Special Faces Conference
attempts to explore the problems which disfigured patients and their fami
lies are still experiencing:
The psychological and social impact of disfigurement.
The limited vocational options available to those affected.
The need to improve and clarify medical insurance coverage

especially for those facing long-term rehabilitative programs.

The need for greater public awareness and understanding of

the special needs of the facially disfigured.

In organizing this Conference, I was aided greatly by the advice of

Dr. Joseph G. McCarthy, Arlyn Gardner and colleagues at both the

NFFR and the Institute, and by the able editorial assistance of Ms.

Karen Kuusisto. Even more fortunately, we secured, as presentors, an

outstanding group of health professionals, vocational specialists, med

ical insurance representatives, support group directors, patients and par

ents -- all of whom spoke with conviction and honesty, as well as field

ing sOlnetimes tough questions.

We hope the Conference and these printed proceedings will repre

sent significant steps toward broadening professional and public aware

ness of the needs of infants, children and adults who struggle every day

with the consequences of facial disfigurement.

Robert E. Bochat, Trustee, The National Foundationfor Facial Reconstruction

Executive Director, The National f-'oundation for Facial Reconstruction, J 960-/990

Adl11inistrator, Institute of Reconstructive Plastic Surgery, /960-1990

VII

Session II

PSYCHOSOCIAL ASPECTS
Thomas Pruzinsky, Chairman

Social and Psychological Challenges for Individuals

with Facial Disfigurement

Thomas Pruzinsky, PhD

Body Image Therapy for Persons with Facial Dis,figurement:
A Cognitive-Behavorial Approach
Thomas F. Cash, PhD
The Beauty of Disfigurement
Alan Jeffry Breslau
The Impact ofHospitalization on the Pediatric

Craniofacial Patient and Family

Patricia Chibbaro, RN

Social and Psychological Challenges for

Individuals with Facial Disfigurement
Thomas Pruzinsky, PhD
Assistant Professor, Quinnipiac College

Hamden, CT

Consultant, Institute of Reconstructive Plastic Surgery

NYU Medical Center

New York, NY

The primary challenge encountered by individuals with

a facial disfigurement is the social response of the non
disfigured (Bernstein, 1976; 1990; Bull & Rumsey,
1988; Hill-Beuf, 1990; Macgregor, 1990). The stress
es associated with adjusting to having a facial disfig
urement have their roots in our society's often negative
~
reaction to anyone who looks different. If our society
judged all people by the "contents of their character" and not by the
appearance of their face, individuals with a disfigurement would expe
rience far less stress.
It is also important to emphasize that each person and each fam
ily is unique in their adjustment to disfigurement. One of the most
important lessons I have learned over the past seven years of working
with families who are adjusting to a facial disfigurement is that every
child, every young adult and every family is unique. Each have their
individual resources, strengths and vulnerabilities. Some are very
resilient and creative in their adaptation, while others adjust with
tremendous difficulty.
Unquestionably, however, most important to keep in mind is
that a disfigurement does not define the whole person. That is, we
should not fall into the trap of trying to explain any individual's per
sonality or life in terms of only one aspect of their total existence.
SOCIAL CHALLENGES OF FACIAL DISFIGUREMENT
The social challenges for individuals with facial disfigurement
are embedded in our culture's obsession with physical appearance. The
media constantly bombard us with images of so-called "beautiful peo
ple" and in the process create largely unattainable standards for physi
cal appearance. Each of us is evaluated by these standards. If we are
15

too fat or too thin, too short, too tall, have too much hair or too little
hair, or have some imperfections in our skin, we are likely to be nega
tively evaluated (e.g., Adams, 1985; Cash, 1990; Patzer, 1985).

Stigmatization
However, those with facial disfigurement are likely to be sub
ject to even more intense negative evaluation. They are often stigma
tized (e.g., Bernstein, 1976; 1990; Bull & Rumsey, 1988; Hill-Beuf,
1990; Macgregor, 1990; Shaw, 1981). Stigmatization refers to indi vidu
als being "labeled as deviant," and subject to prejudice and discrimina
tion (Crocker & Major, 1989, p.609). Facially disfigured individuals
share a stigma with all individuals who may have some physical
impairment because they do not meet our cultural standards of so
called "normal" appearance (Hill-Beuf, 1990, p.7).
We do not currently know the exact degree to which individuals
with facial disfigurement are subject to prejudice or discrimination
(Facial Discrimination, 1987). However, "There is little doubt in the
minds of many disfigured people that members of the general public
hold negative attitudes toward them" (Bull & Rumsey, 1988, p. 187).
We also know that for individuals with facial disfigurement social
interactions are often a potential source of intense stress, challenge and _
frustration (Macgregor, 1990).
The Contributions of Frances Macgregor
To best describe the social stress experienced by individuals
with facial disfigurement I will draw heavily from the work of
Professor Frances Cooke Macgregor. Through her intensive research
on the social and psychological impact of facial disfigurement
Professor Macgregor has taught us many important lessons. Her work
at the New York University Institute of Reconstructive Plastic Surgery
spans more than forty years. Her contributions include numerous
books (e.g. Macgregor, Abel, Byrt, Lauer, and Weissman, 1953) and
scholarly papers. Her 1990 paper entitled, "Facial Disfigurement:
Problems and Management of Social Interaction and Implications for
Mental Health" should be studied closely by anyone hoping to under
stand the challenges engendered by facial disfigurement.
Violation of Privacy
One of Professor Macgregor's important observations of indi
viduals with facial disfigurement is that in the course of going about
16

their lives, many often experience an invasion of their privacy (Bull &
Rumsey, 1988; Macgregor, 1979; 1989; 1990). Most of us can go
about our daily lives without having unnecessary attention drawn to
ourselves (i.e., we can "blend into a crowd") (Bull & Rumsey, 1988).
This is not necessarily the case for a person with a facial deforlnity.
Frances Macgregor stated that "In their efforts to go about their daily
affairs they are subjected to visual and verbal assaults and a level of
familiarity from strangers ..... [including] ...naked stares, startle reac
tions, 'double takes,' whispering, remarks, furtive looks, curiosity, per
sonal questions, advice, manifestations of pity or aversion, laughter,
ridicule, and outright avoidance. Whatever form the behaviors may
take, they generate feelings of shame, impotence, anger and humilia
tion in their victims." (Macgregor, 1990, p.250).
This experience may also cause some individuals to feel a sense
of powerlessness (Bull & Rumsey, 1988) and a feeling of being treated
as an object rather than as a person (Hill-Beuf, 1990). This problem of
the social interaction may be especially difficult for children who are
teased by their peers (Gerrard, 1991).

Social Strain: Nonverbal Responses to Individuals with Facial

Disfigurement
A second social challenge encountered by individuals with
facial disfigurement is best described by Professor Macgregor's use of
the term "strained" to capture the typical emotional tone of brief social
contacts between those with and those without disfigurement. The
term "strained" is very accurate because it captures the interpersonal
tension that often exists in such interactions.
For example, in casual social interactions, the non-disfigured
person may attempt to avoid the person with a disfigurement, including
walking faster and ignoring the person if directly approached (BlIII &
Rumsey). If they do not actively avoid the person, they may be
ambivalent about engaging in interaction with them (Bull & RUlTISey,
1988). They may be self-conscious about looking at the disfigurement
(Bull & Rumsey, 1988). They may be self-conscious about NOT look
ing at the disfigurement! Perhaps most importantly, the non-disfigured
person may avoid eye contact (Bull & Rumsey, 1988). Eye contact is a
key element in all interpersonal relations. By avoiding eye contact
they reduce the opportunity to make true emotional contact. Ancl this
is what is important -- that true emotional contact be Inade so that the
social strain be reduced.
17

These non-verbal behaviors may be responded to and interpret

ed in many ways. However, the person with disfigurement may inter
pret them as a form of rejection.

POTENTIAL SOCIAL-PSYCHOLOGICAL PROBLEMS

As Professor Macgregor makes clear in her writing, this con
stant strain in day-to-day interaction can take its toll on some individu
als (Macgregor, 1979; 1990). However, in her research she found that
individuals with disfigurement all managed to cope (Macgregor, 1979;
1990). Furthermore, some individuals adapted extremely well. She
advised us that we should learn from them how they positively adjusted
despite the social strain (Macgregor, 1979; 1990). However, despite
the fact that some individuals are able to adapt well, Professor
Macgregor also found that "[f]or everyone of them this had been a for
midable and engulfing task" (Macgregor, 1989; p. 5).
Therefore, we need to ask: What are the potential psychologi
cal effects of these social interactions? Individuals with facial disfig
urement are at risk for developing a range of potential negative
responses to the social stressors impinging on them. The two areas of
particular concern are social withdrawal and the development of a neg
ative body image.
Social Withdrawal in Children
There is considerable evidence that a significant number of
children with congenital craniofacial defonnities are "at risk" for social
withdrawal (e.g., Clifford, 1987; Tobiasen, 1989), including what has
been described as "social avoidance of peers, and excessive depen
dence on immediate family members" (Tobiasen, 1989, p. 207). This
pattern of social withdrawal "can negatively effect a child's social com
petence and predispose the child to later experiences of anxiety, depres
sion or loneliness (Rubin & Wilkinson, in press)" (Pruzinsky, 1992, p.
581).
Parents are almost always very concerned about the social chal
lenges that their children encounter. They often express concerns about
the teasing their child experiences and about the potential psychologi
cal harm from teasing.
Parental concerns about their child's social adjustment must be
understood in the context of the parent's adjustment to having a child
who has a disfigurement. In the case of children with a congenital
18

deformity, parents often experience a range of emotions, including self

blame, helplessness, denial, guilt, or anger (Drotar, Baskiewicz, Irvin,
Kennell & Klaus, 1975; Fajardo, 1987; Solnit & Stark, 1961). Many of
these emotions may re-emerge during important landmarks of the
child's development or treatment (Pruzinsky, 1990). These emotions
can influence the way that parents help their children cope with the
social stresses they encounter.
Many parents are challenged by their desire to treat their child
like any other child. At the same time parents recognize that a child
with a disfigurement may have some special needs. Parents often ask:
How can I protect my child from the teasing, the stares, and the ques
tions? They also ask: How can I keep from overprotecting my child
and help them to be their own person? (cf. Boone & Hartman, 1972).
There are no easy answers to these questions. However, innov
ative programs for helping young children cope with teasing have been
developed (e.g., Gerrard, 1991) and need to be more widely dissemi
nated and evaluated. Additionally, social skills programs for older chil
dren and adolescents have been developed and found effective in hav
ing an overall positive impact on social and psychological functioning
(Kapp-Simon & Simon, 1991). These need to be more widely dissemi
nated and evaluated.

Social Withdrawal in Adults

There is also evidence for social withdrawal in adults with
facial disfigurement (Macgregor, 1990). In her long-term follow-up
investigation Professor Macgregor reported that most individuals in her
study limited their social interactions to their immediate family and
those necessary for their work. She describes many of these individu
als seeking "refuge" within their immediate families (Macgregor, 1989,
p.5).
Here again, the way that we can provide assistance to individu
als who would like it, is to make social skills programs for adults more
widely available. The goal of such programs is to teach a special set of
social skills for positively coping with the social strain experienced by
adults (Bull & Rumsey, 1988; Fiegenbaum, 1981; Kapp-Simon &
Simon, 1991; Roback, Kirshner, & Roback, 1981-1982).
Such programs recognize and emphasize the role of the person
with a disfigurement in determining, at least in part, the nature of the
social interactions which they experience. That is, some individuals
with a disfigurement contribute to the negative social response of peo
19

pIe they meet in casual social encounters (Macgregor, 1990). For

example, some individuals who have a facial disfigurement may enter
into social situations expecting to be rejected or ignored (Macgregor,
1990). Expecting the worst from the interaction, and having been
repeatedly hurt or insulted in the past, they lllay directly or indirectly
express hostility or indifference (Macgregor, 1990). By responding
this way they increase the probability of having people respond nega
tively to them (Macgregor, 1990).
However, many individuals with facial disfigurelnent have
demonstrated that there are more adaptive ways of handling social
interactions (Macgregor, 1990). I have often been impressed at how
some individuals with a major facial deformity are able to put other
people at ease by their use of hUITIor, their intelligence, their conversa
tional skills and with a sensitivity to how others might respond to their
appearance (Macgregor, 1990). Therefore, the goal of social skills pro
grams is to teach individuals with a facial disfigurement how to maxi
mize the probability of positive social interactions and reduce the
potential for feelings of rejection or social withdrawal.

Developnlent of a Negative Body Image

One factor which may be associated with social withdrawal is
the development of a negative body image; that is, a negative evalua
tion of one's personal appearance (Pruzinsky & Cash, 1990). The
scholarly literature on facial disfigurement often emphasizes concern
regarding the development of a negative body inlage in individuals
with facial disfigurement (e.g., Belfer, 1983; Belfer, Harrison, Pillemar
& Murray, 1982; Bernstein, 1990; Bernstein, Breslau, & GrahalTI,
1988; Harrison, 1983; Pertschuk, 1990). The concern is that the nega
tive social evaluation of disfigurement may be internalized. For sOlne
indi viduals this internalization may lead to a sense of shame
(Macgregor, 1990) about their body or their appearance and may nega
tively effect their overall self-concept (Pruzinsky & Cash, 1990).
The degree to which body image may effect psychological
functioning is closely related to many factors, including the individ
ual's stage of development in life. Very young children have little
awareness of or concern about the nature of their appearance and how
it effects others. In contrast, older children and adolescents are acutely
aware of their body image. A negative body image during this stage of
development can have a profound impact on their overall psychological
well-being and social functioning.
20

Furthermore, body image development may be affected by the

cause of the facial disfigurement. There is some evidence that the psy
chological adjustment to an acquired deformity is more challenging
than adjusting to a congenital deformity. This appears to be true for
children (Lefebvre & Arndt, 1988) and adults (Pertschuk,1990). From
a common sense point of view, the person who acquires a facial disfig
urement must adjust to the social and psychological response to having
the disfigurement as well as to mourning the loss of their previous
appearance. This may make the adjustment process more challenging.
Body image concerns may be especially evident if and when
patients and families have to adjust to the fact that there are limitations
to what can be accomplished through reconstructive surgery. Clearly,
much progress has been made in the surgical treatment of congenital
facial deformities (Barden, Ford, Wilhelm, Rogers-Salyer, Salyer, 1988
a.b). However, if there is residual disfigurement, which cannot current
ly be reconstructed by surgery, an adjustment needs to occur. Both the
patient and the family may have to learn to let go of the hopes that they
had for surgical reconstruction. For some this is a very difficult
process; for others it is not.
It is important to note that the degree of psychological dyspho
ria related to appearance experienced by individuals with disfigurement
is not necessarily correlated with the actual degree of disfigurement
(Lansdown, Lloyd, & Hunter, 1991; Macgregor, 1990). That is, there
are individuals with major facial deformities who do not appear to be
concerned about the disfigurement (Macgregor, 1990). However, there
are other individuals with a relatively minor facial disfigurement who
experience a trelnendous amount of psychological distress. This
speaks to the subjective nature of body image (Pruzinsky & Cash,
1990) which always needs to be considered when attempting to under
stand anyone individual's psychological response to disfigurement.

Conclusion
In concluding, it is important to reiterate that the primary chal
lenges encountered by individuals with facial disfigurement is the
social response of the non-disfigured. Furthermore, we should not
overestinlate the needs for therapy, nor should we underestimate the
positive coping abilities of those who have a facial disfigurement.
Without question, the experience of disfigurelnent can potentially have
a negative impact on a person's quality of life. However, in the process
of living, individuals and families draw from many strengths, including
21

their intellectual ability, humor, religious convictions, family and com

munity (Lefebvre & Arndt, 1988). We must always keep firmly in
mind that disfigurement does not define the person.

References
Adams, G.R. Attractiveness through the ages: Implications of facial attractiveness
over the life cycle. In Grahanl, l.A. & Kligman, A.M., eds. The psychology of
cosmetic treatments. New York: Praeger Scientific, 1985~ 133-151.
Barden, R.C., Ford, M.E., Wilhelm, W., Rogers-Salyer, M. & Salyer, K.E. The
physical attractiveness of facially deformed patients before and after craniofacial
surgery. Plas Reconstr Surgery, 1988a;82:229-235.
Barden, R.C., Ford, M.E., Wilhehn W., Rogers-Salyer, M. & Salyer, K.E. Emotional
and behavioral reactions to facially deformed patients before and after craniofacial
surgery. Plas Reconstr Surg, I 988b;82:409-4 16.
Belfer, M.L. Self-esteem as related to bodily changes in children with craniofacial
deformity. In Mack, J.E. & Ablon, S.L., eds. The development and sustenance (~f
se(f~esteem in childhood. New York: International Universities Press, 1983; 103-121.
Belfer, M.L., Harrison, A.M., Pillemer, F.C. & Murray, J.E. Appearance and the
influence of reconstructive surgery on body image. CUn Plast Surg, 1982;9:307-315.
Bernstein, N.R. Elnotional care o.fthe burned andfacially disfigured. Boston: Little,
Brown & Co., 1976.
Bernstein, N.R. Objective bodily damage: Disfigurement and dignity. In Cash, T.F.
& Pruzinsky, T., eds. Body images: Development, deviance, and change. New
York: Guilford Press, 1990; 131-148.
Bernstein, N.R., Breslau, A.J. & Graham, J.A., eds. Coping strategies.for burn

sun;ivors and their.families. New York: Praeger Press, 1988.

Boone, D.R., Hartman, B.H. The benevolent overreaction: A well-intentioned but

malignant influence on the handicapped child. CUn Ped, 1972~ 11 :268-271.
Bull, R., Rumsey, N. The social psychology offacial appearance. New York:

Springer-Verlag, 1988.

Cash, T.F. The psychology of physical appearance: Aesthetics, attributes, and

images. In Cash, T.F., Pruzinsky, T., eds. Body images: development, deviance and
change. New York: Guilford Press, 1990; 51-79.
Clifford, E. The cleft palate experience: New perspectives on management..

Springfield, IL: Charles C. Thomas, 1987.

22

Crocker, 1. & Major, B. Social stigma and self-esteem: The self-protective

properties of stigma. Psycho Rev, 1989; 96: 608-630.
Drotar, D., Baskiewicz, A., Irvin, N., Kennell, J. & Klaus, M. The adaptation of
parents to the birth of an infant with a congenital malformation: A hypothetical
model. Pediatrics; 1975;56:710-717.
Facial Discrimination. Extending handicap law to employment discrimination on the
basis of physical appearance. Harvard Law Review, 1987; 100:2035-2052.
Fajardo, B. Parenting a damaged child: Mourning, regression and disappointment.

Psychoanal Rev, 1987;74: 18-43.

Fiegenbaum, W. A social training program for clients with facial disfigurations:
A contribution to the rehabilitation of cancer patients. Inter J. Rehab Res, 1981;
4:501-509.
GelTard, J. M. The teasing syndrome in facially deformed children. Aus New Z. J.
Fam Ther, 1991;12:147-154.
Harrison, A. Body image and self-esteem. In Mack, 1.1. & Ablon, S.L., eds. The
Developlnent and sustenance of'seLf-esteem in childhood. New York: International
Universities Press, 1983; 90-100.
Hill-Beuf, A. Beauty is the beast: Appearance-impaired children in America.
Philadelphia: University of Pennsylvania Press, 1990.
Kapp-Simon, K.A. & Simon, OJ. Meeting the challenge: A social skills training
program for adolescents with special needs. Chicago: University of Illinois at
Chicago Press, 1991.
Lansdown, R., Lloyd, 1. & Hunter, J. Facial deformity in childhood: severity and
psychosocial adjustment. Child Care Health Dev, 1991; 17: 165-171.
Lefebvre, A.M. & Arndt, E.M. Working with facially disfigured children:
A challenge in prevention. Can J. Psycho, 1988;33:453-458.
Macgregor, F.C., Abel. T.M., Byrt, A., Lauer, E. & Weissmann, S. Facial
deformities and plastic surgery: A psychosocial study. Springfield.. IL:
Charles C. Thomas Publishers, 1953.
Macgregor, F.C. A.fter plastic surgery: Adaptation and adjustlnenl. New York:
Praeger, 1979.
Macgregor, F.C. Social, psychological, and cultural dilnensions of cosmetic and
reconstructive plastic surgery. Aesth Plast Surg, 1989; 13: 1-8.
Macgregor, F.C. Facial disfigurement: Problems and nlanagement of social
nteraction and implications for mental health. Aesth Pfast Surg, 1990; 14:249-257.
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Patzer, G.L. The physical attractiveness phenol11ena. New York: Plenum, 1985.
Pertschuk, M.J. Reconstructive surgery: Objective change of objective defornlity.
In Cash, T.F. & Pruzinsky, T., eds. Body Irnages: Developn1.ent, deviance and
change. New York: Guilford Press, 1990~237-252.
Pruzinsky, T. Social and psychological effects of major craniofacial deformity.
C:left Palate-Cranio.facial J., 1992~29:578-584.
Pruzinsky, T. Collaboration of plastic surgeon and medical psychotherapist;

Reconstructive surgery for craniofacial defornlities. Medical Psychotherapy:

An Inter J., 1990~3: 103-116.

Pruzinsky, T. & Cash, T.F. Integrative themes in body image development, deviance

and change. In T.F. Cash and T. Pruzinsky (eds). Body Images: Developlnent,

Deviance and Change. New York: Guilford Press, 1990;337-349.

Roback, H.B., Kirshner, H. & Roback, E. Physical self-concept changes in a mildly

facially disfigured neurofibromatosis patient following communication skill training.

Inter J. Psych Med, 1981-1982; II: 137-143.

Rubin, K.H. & Wilkinson, M. Peer rejection and social isolation in childhood:

A conceptually inspired research agenda for children with craniofacial handicaps.

In Eder, R., ed. Developnlent perspectives on craniofacial problelns. New York:

Springer-Verlag, in press.

Shaw, W.C. Folklore surrounding facial deformity and the origins of facial prejudice.

Br. J. Plast Surg, 1981 ;34:237-246.

Solnit, A.1. & Stark, M.H. Mourning and the birth of a defective child. Psychoanal

Study of Child, 1961;16:523-537.

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psychosocial adjustment of pediatric craniofacial patients after surgery.

Cleft Palate J., 1989;26:207-208.

24

Session IV

VOCATIONAL PROBLEMS

OF FACIAL DISFIGUREMENT

Orin Lehman, Chairman

A Rehabilitation Perspective
Orin Lehman
Patient Experience
Caroline Rubino, RN
State Vocational Services
John Bertrand
Job Placement
Prince Attoh
Role of Employers
Elisa G. Lederer

State Vocational Services

John Bertrand
District Manager

Office oj' Vocational and Educational Services/or

Individuals with Disabilities (V.E.S./.D.), New York, NY

On behalf of V.E.S.I.D., I would like to thank you for

giving us the opportunity to make a presentation here
today. While I do not believe that what we can offer
will in any way begin to address the total needs of those
persons for whom you are advocating, I feel that there
are some cases in which our Agency, and our sister
agencies in other states, might be a resource to some.
V.E.S.I.D. stands for "Vocational and Educational Services for
Individuals with Disabilities." We are the Vocational Rehabilitation
Agency of New York State. Every state has an agency which is
charged with the responsibility of providing vocational rehabilitation
services. Most frequently they are known by the name "OVR" for
Office of Vocational Rehabilitation or "DVR," Division of Vocational
Rehabilitation. All are funded by a combination of Federal-State sup
port, which varies from state to state.
Each state has some system of offices to provide services at a
more local level. These may be called District, Regional or Field
Offices. In New York, for example, we have 15 district offices and 8
satellites. The addresses and telephone numbers of these offices can be
found in the appendix.
Historically, the charge to the Vocational Rehabilitation
Agencies has been to assist persons with disabilities to either enter the
workforce or, where they have worked and have been unable to contin
ue to do so for some reason, to assist the disabled individual to return
to work.
Vocational rehabilitation programs are not entitlement pro
grams. One must be eligible for services. The eligibility criteria, gen
erally speaking, are:
I. The presence of a disability which can be documented phys
ically, psychiatrically or psychologically.
2. That the disability has been a barrier to employment.
3. That there be an expectation that with the agency's sevices,
the disabled individual will go to work.
98

There may also be a means test or an order of selection imposed

upon the eligibility decision. In New York State, for example, an indi
vidual with an income in excess of $9,600 may not be eligible for all
services, based upon income. There are some services which can be
offered, without regard to income, such as evaluation, counseling and
guidance training at a rehabilitation facility and on-the-job training.
In some states, the fiscal situation is such that the Vocational
Rehabilitation Agency is operating under an "Order of Selection." This
is a situation in which only persons determined to be severely handi
capped individuals, and then certain other classes of persons:
--public safety officers with handicaps incurred in the line of
duty (police, firemen, and associated personnel);
--Social Security disability beneficiaries;
--Supplemental Security Income recipients;
--Federal Bureau of Employee Compensation claimants;
--Longshoremen's and Harborworkers' Compensation
claimants can be advanced beyond evaluation. However, a person with
"disfigurement or deformity so pronounced as to cause social rejection"
is considered severely disabled.
An individual who applies for services is usually seen by Intake
Staff, who gather some of the information we need to make an eligibili
ty determination, and are then referred to a Vocational Rehabilitation
Counselor to discuss their vocational plans and desires. Only a
Vocational Rehabilitation Counselor can declare a person eligible or
ineligible for services, and anyone declared ineligible has the right to
appeal that decision.
We do not see many persons whose primary disability is a facial
disfigurement in our office. I would expect that there are several rea
sons for this. One is that since we deal with persons who need to be
ready to consider a vocational career there are no very young children.
It is obvious from the presentations here today that most of the prob
lems of facial disfigurement are being dealt with at an early age.
Another factor is that with the advent of Medicaid, ITIOSt per
sons who would meet our means test are eligible to receive medical
assistance through this avenue and are not seen by us for medical services.
I realize that this statement may be more theory than practice,
as finding reliable medical personnel and/or insurance companies may
be a tremendous problem, as the focus of this conference would seem
to say. While all of the steps I have spoken about may very well seem
to be complex and insurmountable, one should not cast aside hope.
99

When I was asked to participate in this conference, I felt that what I

would have to say would be extremely brief, and perhaps not so upbeat
since, as I told you, we see literally no cases dealing with disfigure
ment in our office. However, when I was on vacation this summer, I
had an experience which made me much more hopeful.
My wife and I have a time share in North Carolina and, anytime
we go into town, we wind up driving past the local Vocational
Rehabilitation Office. I've always been tempted to stop in and talk
"shop" with the staff there and, this year, I did.
While I was discussing programs with the office manager there,
our conversation was interrupted by a telephone call, in which his half
of the conversation was to congratulate a member of his staff on a job
well done. When he concluded, he told me that this had been a conver
sation about a client of theirs who was in the hospital and this call was
from the counselor who worked there. The individual in need of ser
vices, he said, was a young woman who had been born with Cerebral
Palsy and then, in her teens, had developed cancer in the face, which
had required extensive surgery. Even though she was not really finan
cially eligible, they were finding ways to assist her and had just
arranged her attendance, with their support, at a special college pro
gram in North Carolina for persons with severe physical problems.
From the caring in his voice and the enthusiasm with which he had
supported his counselor, I knew that he was truly committed to seeing
to it that this citizen of his state should have every opportunity to
advance to the fullest limits of her ability.
What I am saying is that in dealing with agencies such as ours,
while I won't lead you down the garden path and promise you anything
beforehand, I wanted you to know that there are many caring, con
cerned individuals within such agencies at all levels, who will try to be
as helpful as possible should you find it in your interest to call upon us.

100

APPENDIX

TABLE OF CONTENTS

Health Organizations and PatientlParent Support Groups

142

Vocational Rehabilitation Program Resources for Persons

with Facial Disfigureolent

152

Guidelines for Legislative Advocacy

158

Excerpts FrOIn A Statement in Support of

Governor's Program Bill Chapter 50 I

New York State Insurance Laws of 1992

166

VOCATIONAL REHABILITATION

PROGRAM RESOURCES

FOR PERSONS WITH FACIAL

DISFIGUREMENT

Description of services:
State Vocational Rehabilitation
Services Progranl
Rehabi Ii tation Services Adnlinistration
Office of Special Education and
Rehabilitative Services
U.S. Departlnent of Education
Switzer Building, 330 C Street SW,
Rnl.3127
Washington, D.C. 20202-2531
State and local vocational rehabilitation
agencies provide cOlnprehensive services of
rehabilitation, training, and job-related assi
tance to people with disabilities, and assist
elnployers in recruiting, training, placing,
acconnnodating, and Ineeting other employ
ment-related needs of people with disabili
ties. Agencies conduct workplace accessibil
ity surveys. job analyses that match function
al abilities and limitations of individuals with
disabilities to needed accomodations, and
provide assistance in job restructuring, job
Inodification. and assisti ve technology.
Agencies may fund all or partial costs of
needed training. assistive technology or other
accommodations for eligible individuals.
Ernployment-related services to counseling
individuals with disabilities include: evalua
tion and assessment, vocational counseling
and guidance, referral to appropriate rehabil
itation technology services, physical and
nlental restoration services, vocational train
ing, on-the-job training, job placement, job
development. and services necessary to
obtain or Inaintain employment.
Eligibility for services is dependent on
the presence of a disabling condition which
causes a substantial handicap to employlnent
and a detennination that the individual will
benefit vocationally from services that may
be provided. Eligibility is determined by
professional counselors who have a working
knowledge of Inedical conditions, psycholo
gy, occupations, community organizations
and resources.
As it relates to the facially disfigured, it
should be noted that the Rehabilitation

152

Services Administration (operating vocation

al rehabilitation progranls at the federal level)
recognized cleft palate with speech imperfec
tions and diseases and conditions of the skin
and cellular tissue as ilnpairnlents. The key
to being eligihle for vocational rehabilitation
services would lie in whether the condition
would be considered a substantial inlpedi
nlent to employnlent. Jn order to prove this
fact it is extrelnely important for the facially
disfigured person to thoroughly explain
his/her enlployment history and how the dis
figurelnent has affected hi m/her on the job as
it relates to advancement or lack thereof, psy
chosocial issues affecting work performance
and how others have reacted to the disfigure
Inent.
Rehabilitation counselors also work with
disabled students transitioning froln high
school to college or work force. If a student
with a facial disfigurement is referred for
vocational rehabilitation services he/she may
be questioned about any possible other dis
abling conditions. such as personality diffi
culties or other problems as they relate to
employment.
The following is a list of possible voca
tional rehabilitation services that might be
available to the facially disfigured to enable
them to maximize their elnployment poten
tial:
-Vocational/career counseling
-funding for college training
-special prosthetic devices (e.g. hair
piece, dentures)
-job placement and follow-up
Referral or application may be made hy
contacting any area office or service center
located throughout each state (See Following

List). Counselors may also be contacted dur

ing their regular visits to other state and local

government offices or schools within local

communities.

NOTE: Above Information courtesy of Ms.

Renee Barnes, Vocational Rehabilitation

Counselor, Spencer, Iowa.

GUIDELINES FOR LEGISLATIVE

ADVOCACY
Prepared By

American Cleft Palate

Craniofacial Association
1218 Grandview Avenue
Pittsburgh, PA 152] 1
(412) 481-)376
FAX (412) 4H1-0847

INTRODUCTION
The treatment of craniofacial anomalies,
including cleft lip and palate, is a long and
costly process. Present financial resource for
diagnosis and treatment include health/med
ical insurance, federal and state funded pro
graIns such as Crippled Children's Services,
and teaching hospital programs and clinics.
However, such resources vary greatly from
state to state and often do not provide
enough assistance to cover the long term
financial obligations encountered by families
of individuals with craniofacial anomalies.
In addition, help froln federal and state fund
ed programs is often available only to indi
viduals with marginal or low incomes.
Necessary treatlnent and evaluation modali
ties including orthodontics, speech therapy,
audiology and psychology may be denied
coverage as non-medical services. Even
when a family has the financial resources to
purchase health/medical insurance, coverage
may be denied for a child with craniofacial
anomalies because of a "pre-existing condi
tion clause." Costs of medical care and
allied treatment services continue to rise
while budgets of publicly funded programs
have not increased to offset higher costs or to
expand treatment resources.
In recent years, parents of children with
special needs have demonstrated the abil ity
to improve educational and medical services
by forming advocacy groups to enact appro
priate state and/or federal legislation. The
various states differ in their resources for
treatment of craniofacial anolnalies and,
therefore, in their funding for such condi
tions. Therefore, it seems that inadequate
funding issues and insurance coverage and

158

benefits will need to be addressed state by

state. Parents and families of individuals
with craniofacial anomalies can and Inllst
playa leadership role in changing those por
tions of state insurance codes that designate
the kinds of treatillent that 1l1edical insurance
must cover. In sOlne instances. new legisla
tion nlay be necessary to clarify and/or
expand existing state insurance codes. (Note
copies of legislative bills and associated cor
respondence in the Appendix). In other
instances, advocacy groups may have to
request that the Comlnissioner of InSlIrallce
interpret and clarify existing insurance codes.
The experiences of advocacy groups in sever
al states in recent years, e.g., Virginia,
demonstrate that significant changes can be
accompl ished.
The goal of this legislative advocacy
guide is to aid consumer groups in using the
legislative process to enact effective state leg
islation to improve medical and health insur
ance coverage and payment for the diagnosis
and treatment of craniofacial anomalies. The
guide was prepared by the Alnerican Cleft
Palate-Craniofacial Association, a non-profit
corporation founded in 1943. One of the pri
Inary objectives of the Association is to
"stimulate public interest in and support of
the habilitation of persons with craniofacial
anomalies." Thus, it seenlS fitting that the
American
Cleft
Palate-Craniofacial
Association should provide infornlation and
guidance to parents and advocacy groups
determined to improve medical and other
professional care and treatment of individuals
with craniofacial anomalies.
PREPARATION FOR THE
INTRODUCTION OF LEGISLATION
A. Prior to introduction of a bill, the
"Informed Consumer" is a more effective
legislative advocate.
1. Determine what kind of Inedical and/or
insurance coverage is Inandated by the exist
ing insurance code in your state. Regu lations
may already exist mandating coverage by
third party payers but need to be reinterpreted
by the insurance commissioner or attorney
general of your state. This would sinlplify
your task greatly. Such infonnation can be
obtained from the Insurance Commissioner's

office or you may request it from the office

of your local legislator.
2. Determine what kind of financial and
treatment assistance is presently provided by
Crippled Children's Services, Medical
Assistance, or other local and state agencies,
and the Guidelines for Eligibility used by
those agencies.
3. Contact a local branch of the League of
Women Voters or your local legislator for
information that describes the legislative
process in your state. An understanding of
the various steps and timing of each process
is ilnperative in order to be effective advo
cates for proposed legislation.
4. Secure examples of the most frequent and
significant problems patients and their fami
lies encounter in having services covered by
third party payers. Insurance coverage,
sources of treatment, and numbers and com
positions of cleft palate/craniofacial teams
vary from state to state.
a. Contact existing cleft palate/craniofacial
teams of clinics (see ACPA Membership
Team Directory or contact ACPA for list).
b. Contact parents of children with craniofa
cial anomalies who live in different parts of
your state to learn what problems have been
encountered in obtaining needed care in all
aspects of treatment (see ACPA Membership
Team Directory for Lists of Support
Groups).
5. Election year in your state COll Id be an
ideal time to introduce legislation to improve
medical care and associated treatnlent for
individuals with craniofacial anomalies.
Legislators tend to be nlore responsive to
consulner groups during an election year.
6. A period of critical fiscal problems in your
state may be an inopportune time to present
legislation that cou Id be Inisinterpreted as an
additional financial burden on the state trea
sury. Remember that any expansion in
insurance coverage would require state and
local governnlents to provide the benefits for
their elnployees and it could, therefore, be
viewed as a possible increase in insurance
premiums.
B. Find a state legislator with a record of
enactlnent of legislation related to health and
educational nUllters who may be willing to
sponsor a bill. This is critical to the success
of any legislative effort.

C. NOTE: In some instances it nlay be

advisable to introduce a bill simultaneously
in both bodies of the legislature. Consult
your legislator(s).
A MODEL BILL
A. The format of bills will vary from state to
state in order to fit into existing insurance
codes. Coverage and/or conditions of cover
age included in any bill(s) should avoid
errors in " Omission and/or regulations:'
That is, coverage for all necessary treatnlent
should be included and all aspects of existing
insurance codes should be exanlined to avoid
loopholes that could weaken the intent of the
bill. In some instances, new legislation may
be needed only to clarify and/or expand
existing laws and insurance regulations.
B. A Model Bill would be as follows:
Medical insurance policies or plans delivered
or issued in this state (regardless of whether
any such policies or plans shall be defined as
individual, family, group, blanket, franchise,
industrial, or otherwise) that provide benefits
for medical and hospital expenses shall
include coverage for all inpatient and outpa
tient treatment and care for indi viduals born
with craniofacial anomalies (not limited to
cleft lip and palate). Necessary treatment
shall include but not be limited to:
( I ) Surgery and surgical management;
(2) Oral and maxillofacial treatlnent;
(3) Prosthetic treatment such as obturators
and speech appliances;
(4) Ot1hodontic treatment and tnanagement;
(5) Preventive and restorative dentistry to
insure good health and adequate dental struc
tures for orthodontic treatment and/or pros
thetic managelnent;
(6) Speech-language evaluation and remedia
tion;
(7) Audiological aSSeSSl11ents and habilitati ve
amplification devices;
(8) Otolaryngology treatment and Inanage
filent;
(9) Psychological assessment and coun
selling;
( 10) Social services and counselling;
( I 1) Genetic assesslnent and counsel1ing;
If possible, proposed legislation should
negate any "pre-existing condition" clause(s)
that may currently exist in health insurance
policies and plans.

159

C. Additional factors to consider when writ

ing legislation pertaining to health insurance
coverage:
1. Insurance policies written out-of-state may
not come under the jurisdiction of the pro
posed legislation for your state. Also, states
cannot legislate insurance requirenlents for
Federal Government employees.
2. Deternline whether Health Maintenance
Organizations (HMOs) come under the juris
diction of the proposed legislation.
3. Detennine whether multiple elnployer
trusts of self-insured plans reinsured or
administered by a third party administrator
will be under the jurisdiction of the proposed
legislation.
4. If legislation is enacted, the increased cov
erage and treatment may only apply to those
insurance policies written after the date the
bill becomes law.
D. Be Prepared: It may be necessary to con
sider and/or accept amendments to your
bill(s).
1. Alnendments can be fairly insignificant
such as a clarification or change in terminol
ogy, or amendments can weaken or severely
restrict what you are trying to accomplish
with the proposed legislation.
2. You must be prepared to decide what
compromises and/or changes you would be
willing to accept.
PREPARATION FOR TESTIMONY

BEFORE THE LEGISLATIVE

COMMITTEE(S)

REVIEWING THE BILL(S)

A. Who should present testimony:

1. Consumers (parents and children with
craniofacial anomalies) should lead the testi
mony.
2. Written and verbal testimonies should also
be obtained from professionals involved in
the treatnlent and care of individuals with
craniofacial anomalies who will not derive
any direct financial benefits from enactment
of legislation. You might contact:
a. Directors of cleft palate/craniofacial teams
in your state;
b. Presidents of medical groups such as the
Academy of Pediatrics, plastic surgery asso
ciations, etc.;
c. Directors of State Crippled Children's
Services.

160

B. Information to be included in testimony:

I. An explanation of craniofacial anolnalies.
Photographs are helpful.
2. An explanation of how treatment of the
specific problenls are interrelated; that is,the
successful outcome of one aspect of treat
ment has a direct or indirect inlpact on the
success of another aspect of treatlnent.
(Example: A child has a difficult time
achieving intelligible speech if hearing and
dental problems are not treated.)
3. An explanation of how the multiple prob
lems associated with the diagnosis and treat
ment of craniofacial anomalies have resulted
in the development of interdisciplinary teams
throughout the lJnited States.
The need for professional disciplines
other than just surgeons in the ll1anagelnent
of craniofacial anomalies has been recog
nized by federal and state agencies for a nUln
ber of years through funding of teams and
specialists. These specialists work together
in a coordinated and systematic way to
insure that all treatment needed by individu
als with craniofacial anomalies is provided at
the proper time. (Please note: the lninitnal
basic team as defined by the American Cleft
Palate-Craniofacial Association must consist
of at least a dentist, a surgeon, and a speech
language pathologist who meet regularly).
The goal here is to realize the potential of
each child under treatment to become a pro
ductive, working, tax-paying individual who
is not a financial burden on society.
4. Estimates of incidence rates of craniofacial
anomalies in your state, or estinlated nUlnbers
of children who might be affected by the pro
posed legislation. State Crippled Children's
Services programs may be able to help pro
vide this information. The total dollars may
not impact your state or insurance carrier
greatly, but does impact the family to a much
greater degree.
5. Copies of letters recei ved from health
insurance carriers or other documents that
show that clainls for treatment (other than
surgery) were declined or refused by insur
ance companies. There must be evidence to
prove to the legislators that existing laws
and/or the insurance code enable health insur
ance companies to deny payment for treat
ment of problems associated with craniofacial
anomalies.

6. Estinlates of cost of treatrTIent from birth

to adulthood. Check with several cleft palate
teanlS in your state for cost estimates.
7. Explanation of the increase in "costs"
(hospital fees and family's time and effects)
when insurance covers only inpatient care
even though treatment could be done equally
well and with less expense on an outpatient
basis.
8. EstilTIate of what the actual fiscal impact
on insurance prenliunls and costs would be:
a. The actual nUITIber of individuals with
craniofacial anomalies is not great.
Therefore, costs of treatment do not involve
large SUlns of ITIoney for insurance compa
nies within the state.
o. Most health/medical insurance policies
already pay for surgical procedures and asso
ciated iIlpatient medical care. These are the
most costly items in the total habilitation of
craniofacial anomalies. The proposed legis
lation involves fees for less costly treatnlent
services~ thus, the overall financial impact is
not as great as it may seem.
c. Many insurance policies pay "usual and
custolllary fees," and/or have a deductible
clause. Thus, falnilies may still encounter
significant financial obligations in providing
care for their children. The family pays the
deductible amount, and possibly the balance
of the profess ional' s bi 11 that exceeds the
"usual and customary" bill paid by the insur
ance cOlnpany.
C. There is precedence for health insurance
coverage for allied health services such as
speech-language pathology treatment.
1. The national Blue Shield Policy manual
describes a speech-language benefit.
2. Laws expanding health insurance cover
age for the treatment of cleft lip and palate
have been enacted in other states. Additional
pertinent information may be available from
sources listed with the National Infornlation
Center for Chi ldren and Youth with
Handicaps (NICHCY) at (800) 999-5599.
E. Include printed materials and photographs
to enhance your testilTIony:
1. Make up a packet of basic infonnation for
each 111enlber of the legislative comillittee
hearing testimony. A written copy of testi
nlony to be presented Inay also be included.
2. Photographs (if available) of teenagers or
adults with ullrepaired clefts are an effective

means to demonstrate that orthodontic and

dental problems are a part of the original
congenital anomalies and not a "coslTIetic"
problem. "Before" and "After" pictures can
reinforce the positive aspects of treatlnent
that is, that cleft lip and palate problems are
correctable.
F. Remember: Many legislators may be
unfamiliar with "technical" terminology per
taining to craniofacial anolTIalies, cleft lip
and palate, etc. Infornlation presented ITIUSt
be geared to such individuals to be certain
that an effective explanation of the problems
and needs is achieved.
G. Although most legislators are respectful
toward individuals presenting testimony,
there may be a few who resort to intimida
tion and/or overly aggressive questioning.
BE PREPARED!
1. Try to "keep coo1." Don't become defen
sive or belligerent.
2. If you don't know answers to questions
asked, don't try to fake them. State that you
will be happy to provide the answers and
submit them in writing to the Committee
Chairperson as soon as possible.
H.Testimonies should avoid duplication of
content in order to provide as Inuch pertinent
information as possible in the time allotted.
Thus, it is important to organize the content
of each testimony and the sequence of pre
sentation.
1. Decide in advance who will testify, what
each person will say, and the order of presen
tation.
2. In some instances, description of existing
(or lack of) treatnlent sources in your state
and the costs 111ay seenl nlore credible if pre
sented by a health care professional. Consult
the legislator(s) who sponsor the bill(s)
regarding this.
ADVOCACY
A. The development of a statewide network
of consumer and professional advocates to
lobby for the proposed legislation is vita1. A
system nlust be set up to notify these people
of the proposed legislation and then to enlist
their lobbying support at appropriate times in
the legislative process. Tinle is often of criti
cal importance, so a phone network ITIay be
most efficient and effecti ve.
The
legislator(s) who introduce the legislation

161

should be able to guide you. Consumer and

professional advocates should write and/or
call their state legislators, and the members
of the Committee hearing testiluony on the
bill(s).
B. Obtain a list of nalnes, addresses and
phone nUIubers of your state legislators and
the districts they serve. This information
should be distributed to your network of con
SUIner and professional "lobbyists." Lists of
state legislators will be available from the
legislative sponsor(s) of the bill(s), the
League of WOlllen Voters, state dental
societies, etc.
C. Melubers of parent support groups, pro
fessional organizations (medical, allied pro
fessionals, teachers, cOlnmunity health work
ers, etc.) should be asked to lobby on behalf
of the bill(s) as individual residents of the
state. Professional identities need not be
given.
D. AtteInpt to get support from other people
and community agencies statewide.
E. A void "prepared" lobbying letters.
Individual, personal letters can be more
effective.
F. Legislators also have toll-free phone num
bers that can be used to inform them of your
interest and support of the proposed legisla
tion.
G. IMPORTANT: Attempt to have con
sumer advocates and professionals be present
when testimony is given to the legislative
committee(s). Children with cleft lip/palate
and other craniofacial anomalies should be
included. Children can present verbal testi
mony about their own treatment needs and
experiences. Their presence and participation
can have a favorable inlpact on legislators.
Also, through their participation, the children
are provided with a unique exposure to the
legislative process in your state.
H. Lobbying in favor of the proposed legisla
tion can also be accomplished by writing
Letters to the Editor in local newspapers,
participating in radio "call-in" shows, sub
mitting an editorial comment to the Public
Affairs Director of your local radio or televi
sion station, or getting a feature article on
craniofacial anonlalies published in a local
newspaper.
1. WARNING!!! Enactment of the proposed
legislation by the state legislature does not

162

guarantee a "victory." The Governor l11ust

sign the legislation into law.
I. Additional lobbying with phone calls and
letters may have to be directed toward the
Governor and his/her staff.
2. Some of the same basic information pro
vided in testinlony to the Committee(s) may
have to be shared with the Governor's office.
3. A packet of printed materials (including
pictures of children with craniofacial anolu
alies) along with a cover letter requesting
enactment of the legislation may be helpful in
getting your message to the Governor.
CAUTIONS AND FOLLOW-UP

CONCERNS

A. The implementation of newly enacted leg

islation does not occur overnight. Be pre
pared to provide additional information per
taining to incidence, treatment costs, etc., to
insurance companies. Members of cleft
palate or craniofacial teams or your State
Crippled Children's Services personnel 1l1ay
be willing to serve as resource people.
B. When the proposed legislation becomes
law, try to arrange for photographs and news
paper articles to publicize your group and
your successful efforts.
1. Attend the bill signing session if possible.
2. The presence of members of your group
can serve as a way of expressing your appre
ciation to the sponsor(s) of the bill(s) and to
the Governor for their efforts on your behalf.
C. Short, warm, sincere thank you letters
should be sent to the sponsor(s) of the legisla
tion and to other legislators who may have
played a key role in getting the legislation
passed.
I. Attend the bill signing session if possible.
2. Thank you letters are also a good way of
building good will in the event you may need
their help on other matters in the future.
D. Cleft palate/craniofacial teams, parent sup
port groups, and other organizations lnay
have to assist in informing patients and their
families about expanded treatment resources
that may .become available as the result of
legislation. Don't expect the insurance com
panies to notify their subscribers!
E. A meeting with the insurance commission
er could be beneficial to get an interpretation
of the new legislation. Continue to assist
families with denied claims by third party

payers.
F. Increased health insurance coverage for
the diagnosis and treatment of craniofacial
anonlalies in no way insures quality of care
provided by the professional community, nor
does it guarantee that equal, comprehensive
care will be available to the "uninsured"
individuals with craniofacial anomalies in
your state.
I. (nfonned consumers can also lobby state
legislatures and the Federal GovernlTIent to
Inaintain the budgets necessary to preserve
state and federal programs and/or agencies
that serve the needs of individuals with cran
iofacial anomalies. "Fiscal Responsibility"
sonleti Ines ITIeanS less money allocated for
the needs of those with .Iittle political clout.
a. Many craniofacial teams receive financial
support (directly or indirectly) from state and
federal progrmns.
b. State Crippled Children's Services and
other agencies that provide services to indi
viduals with craniofacial anomalies are fund
ed by state and federal allocations.
2. The infornled consulner can also promote
services for individuals with craniofacial
anolnalies by participation on the boards of
cOlnnlunity agencies that provide rehabilita
tion services.
G. Comlnents and/or criticism from advoca
cy groups that have used suggestions con
tai ned in this packet would be welcomed by
the Alnerican Cleft Palate-Craniofacial
Association. Please call or write the
National Office, 1218 Grandview Avenue,
Pittsburgh, PA 15211, (412) 481-1376.
I. If legislation is enacted in your state,
please send a copy of the law.
2. If your legislative efforts were unsuccess
fuL please sunlmarize the problelTIs which
you encountered.
IF LEGISLATIVE ATTEMPTS FAIL
A. Failure to have your proposed legislation
passed is likely to be a big disappointlnent to
your group. But it 111ay not Inean that it's not
worth another try during the next legislative
session.
B. Speak frankly with the sponsor(s) of your
bi Il(s). They l110st Iikely have had bills
defeated before and can provide advice and
guidance as to whether or not the legislation
should be reintroduced.

C. Try to determine what went "wrong."

1. In what stage of the legislative process
was the bill defeated? That is, on the tloor of
the legislative body, in Committee, or in the
Governor's office?
Try to find out why legislators voted against
the bill(s).
2. Was the proposed legislation rejected
because of specific wording and/or contents
of the bill(s)? If so, can changes be made
without significantly compromising its
objectives?
3. Did you provide adequate and precise
facts and arguments in your testimony to
en a b 1e 1e g is 1a tor s to In a k e a fa ira n d
informed decision? If not, how can the con
tact and the presentation of testimony be
improved?
4. Can you develop effective arguments and
information to counter negative testimony
that may have had an adverse effect on the
outcome of the proposed legislation?
D. Make an attempt to meet with the State
Insurance COlnmissioner or the appropriate
staff melnber to discuss shortcomings in the
existing insurance codes. There may be
ways to improve medical coverage via inter
pretation of the codes. Also, a "better
informed" staff in the Insurance
Commissioner's office may be valuable
allies if you decide to introduce legislation in
the next session of your state legislature.
E. During the months that the legislators are
in their home districts and before the next
legislative session, positive action can be
taken. Work at:
1. Keeping in touch wiLh the legislators who
support the proposed legislation. A thank
you note from your group sent to their homes
can be an effective way to Inaintain their
support and interest.
2. Finding different ways to reach those leg
islators who didn't support your legislation.
Letters to their honles or offices thanking
theln for their consideration of your legisla
tion, even though they couldn't support it,
may prompt thenl to take greater interest in
your efforts.
3. Finding ways to get publicity for your
group and its legislative efforts. Legislators
are likely to be more receptive to your efforts
if you can delnonstrate a fairly broad base of
public support.

163

4. Finding other support and/or advocacy

groups and community agencies that might
help to lobby or testify during future legisla
tive efforts.

friends or relati ves. Don't forget to

contact wives of key individuals who may be
willing to work on your behalf.

GRASSROOTS LOBBYING
TECHNIQUES

ESTABLISHING CONTACT WITH

LEGISLATORS

A grassroots lobbying organization on a

statewide level is a network of members who
are ready, willing and able to answer a caB
for legislative action at a signal from the
organization's chairperson. Such an organi
zation may be mobilized to lobby for or
against specific regulations. A grassroots
lobbying organization that consists of par
ents. patients and interested professionals
can be effective in influencing budget alloca
tions for treatment and rehabilitation pro
grams. There are two mechanisms which are
essential for disseminating inforn1ation with
in the organization:
(I) An effective network system must be set
up to allow for rapid communication and
mobilization throughout the organization
when action is required. The simplest way to
do this is to appoint regional contact persons
who are notified first and who then telephone
others in their geographical area and so on.
Network members are told what action to
take and when to do it.
(2) Regular meetings must be scheduled so
that each organization member has an oppor
tunity to learn about proposed legislation and
other lobbying concerns and to ask ques
tions. If reasonable attendance at such meet
ings is not possible, a newsletter may have to
be used. An attempt should be made to
impress upon each member his/her important
role as an individual in the success of the
lobbying effort. Members should be given
specific lobbying instructions (write letters,
make phone calls, attend committee meet
ings, testify, etc.) "Legislative Workshops"
attended by state officials and legislative rep
resentatives, are an excellent way to stress
the importance of your concerns to represen
tatives, and to help organization members
acquire self-confidence in lobbying skills.
Don't overlook "who you know" within
your group. Seek out individuals who
have access to key comnlittee melnbers, leg
islators, or the governor who are familiar
with cleft lip and palate problems because of

164

A legislator welcomes the views of con

stituents since he/she can better represent that
constituency in the legislature by knowing
and understanding the cross currents of opin
ions and problelTIS of the district he/she is
representing. There are six ways to contact
your legislator: personal conversations. tele
phone conversations, personal letters, form
letters, position papers, and petitions. Of
these, the most effective is a face-to-face con
versation and the next best aJternative is a
well-written personal letter. Petitions, posi
tion papers, and form letters are usually disre
garded.
Remember that your representative has a
staff of aides and secretaries to assist him/her
in reviewing and answering correspondence
and doing issue research. Establishing a good
rapport with these individuals can be very
helpful, and they are a good source of infor
mation.
Personal Visits
One of the best places to personaBy visit
your state legislators and/or members of
Congress is in their districts or local offices.
Legislators usually schedule meetings with
constituent groups during legislative recess.
This is an exceBent time to invite him/her to
meet with your organization or arrange for an
appointment at his/her local office.
Be prepared for such visits. Know what
issues you want to present or discuss. Use rel
evant facts and believable information to sup
port your views. Be polite and brief but per
suasive. Have an expert on the subject pre
sent to support your views.
The visit should be followed up with
additional information and a thank you letter
to the legislator and any staff members who
helped arrange the meeting.
Letter Writing
( 1) Use the proper address for any official,

make sure you have the name of the person cur

rently in office and that it is spelled correctly.

Addresses and salutations for Federal and

State legislators are as follows:
U.S. Senator
u.s. Representative
The Honorable John Doe The Honorable John Doe
United States Senate
U.S. House of Representatives
Washington, D.C. 20510 Washington, D.C. 20515
Dear Congressman/woman Doe:
Dear Senator Doe:
Governor
The Honorable John Doe
Governor of (Your State)
State House (or State Capitol)
(CapiLol City), (StaLe), (Zip)
Dear Governor Doe:
StaLe SenaLor
The Honorable John Doe
(Your SLate) Senate

State Representative
The Honorable John Doe
(Your State) House of
Representati ves
State House (or State Cap.) State House (or State Capitol)
(Capitol City), (State) (Zip) (Capitol City), (State) (Zip)
Dear Senator Doe:

(10) Present valid facts and argulnents, and

avoid exaggeration or emotion. Examples
should be from personal experience and
about real people.
(II) Be reasonable, courteous and construc
tive. Don't use threats. Be sure to thank
your legislator if you have been satisfied
with his/her efforts on similar matters.
(12) Ask a direct question about your legisla
tor's position on the issue so that you receive
a response.
( 13) Ask to be added to your representati ve' s
mailing list or ask which cOlnmittees or sub
committees might be involved with your
issue.
(14) Include any pertinent editorials or arti
cles clipped from local papers or magazines.

Dear Representative Doe:

(2) Write your letter on a timely basis so that

your legislator has your thoughts before
he/she needs thenl and can contact you with
any questions.
(3) Keep your letter short (rarely more than
one page) and to the point about a single
issue.
(4) Write on personal or business letterhead
and sign your name over your signature if it
is typed. Write legibly if your letter is not
typed!
(5) Relnember to include your return address
because envelopes are often separated.
(6) Make your letter a personal one rather
than as a member of an organization. Use
your own words and state your own
thoughts. Avoid phrases that sound like a
fonn letter.
(7) State specifically the legislation or issue
you are writing about and use the Bill nurTI
ber.
(8) Show falniliarity with issues involved
and gi ve essential background infornlation
because the official may not know as much
abollt cleft lip/palate as you do.
(9) State your reason for writing. Your per
sonal experience and interest are the best
supporting evidence. Explain how the legis
lation or issue affects you and your family,
and others in the community.

165