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8/9/2019 SPECIAL FACES-Session II Psychological-Session IV-Vocational
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SPECIAL FACES
Understanding
Facial Disfigurement
A Conference o the
National Foundation for Facial Reconstruction
November 18, 1992
New York, NY
Conference Chairman:
Robert E. Bochat
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TABLE OF CONTENTS
Foreword VII
Robert E Bochat
SESSION
UNDERSTANDING FACIAL
ISFIGUREMENT
Welcome 2
J
Peter Hoguet
Introduction to Facial Disfigurement. 3
Joseph
G.
McCarthy MD
The Scope
of
the Problem 9
Charlotte Druschel MD
SESSION
PSYCHOSOCIAL ASPECTS
Social and Psychological Challenges for Individuals with
Facial Disfigurement.
15
Thonlas Pruzinsky PhD
Body Image Therapy for Persons with Facial Disfigurement:
A Cognitive Behavioral Approach 25
Thomas F Cash PhD
Beauty
of
Disfigurement. 34
lan Jeffry Breslau
The Impact
of
Hospitalization on the Pediatric Craniofacial
Patient and Family
4 )
Patricia Chibbaro
RN
Discussion 5]
SESSION
INSURANCE ISSUES WITH FACIAL ISFIGUREMENT
New
York State Insurance Department. 55
Thomas Zyra Esq.
Patient Experiences with Medical Insurance 58
David Attenberg
Craig Robertson
Blue Cross/Blue Shield 63
Thomas Blumenfeld
MD
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Medicaid
67
Joseph Guy PhD
Major Medical Casualty Programs 70
Katharine Worthington
Health Maintenance Organizatons 77
Gordon M Koota M
Discussiol1 8
SESSION IV
VOCATIONAL
PROBLEMS
OF
FACIAL
DISFIGUREMENT
A Rehabilitation Perspective
90
Orin Lehman
Patient Experience 95
Caroline Rubino
State Vocational Services 98
John Bertrand
Job Placenlent 1
()
1
Prince Attoh
Role of Employers 105
Elisa G. Lederer
Discussion
1 9
SESSION V - PUBLIC POLICY ISSUES
Americans With Disabilities Act. 114
Allen I?agin Esq.
Getting Action - President's Committee 118
Dick Sheppard
A California Experience 1.24
Michael Cedars M
The
Role
of Support
Groups
128
Elisabeth Bednar
Betsy Old
Discussion 137
Appendix 142
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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
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Session
PSYCHOSOCIAL ASPECTS
Thomas Pruzinsky, Chairman
Social
nd
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 ofDisfigurement
Alan Jeffry Breslau
The Impact ofHospitalization on the Pediatric
Craniofacial Patient and Family
Patricia Chibbaro RN
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Social and Psychological Challenges for
Individuals with Facial Disfigurement
Thomas Pruzinsky, PhD
Assistant Professor, Quinnipiac College
Hamden, CT
Consultant, Institute ofReconstructive Plastic Surgery
NYU Medical Center
New York, NY
The primary challenge encountered by individuals with
a facial disfigurement s 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 s 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.
SOCI L
CH LLENGES
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
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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 individu
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
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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
contac t (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
contac t. Ancl this
is
what
is
important
-- that true emotional
contact be
Inade
so that
the
social strain be reduced.
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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
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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
n dults
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
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8/9/2019 SPECIAL FACES-Session II Psychological-Session IV-Vocational
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p e 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.
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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
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of
facial attractiveness
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Cleft Palate J. 1989;26:207-208.
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Session IV
VOCATIONAL PROBLEMS
O
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 Employers
Elisa G Lederer
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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 5 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.
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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,
T OSt
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.
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.
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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.
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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 992 166
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VOCATIONAL
REHABILITATION
PROGRAM RESOURCES
FOR PERSONS WITH FACIAL
DISFIGUREMENT
Description of services:
State Vocational Rehabilitation
Services
Progranl
Rehabi i 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
individu als 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
52
Services Administration (operating vocation
l 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 employnlen t. n 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). Counselo rs 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.
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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 ability
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
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
accomplished.
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. Regulations
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
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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 condition s 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 habilitative
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.
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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
le d 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 received 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.
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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
inp tient care
even though treatment could be done equally
well and with less expense on an outp tient
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
s r v i s ~ 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 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. Consul t
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
6
8/9/2019 SPECIAL FACES-Session II Psychological-Session IV-Vocational
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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
district s 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
individu l 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
8/9/2019 SPECIAL FACES-Session II Psychological-Session IV-Vocational
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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
sonletiInes 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 thi s 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
1
e
1
e g i s
1
a
to r
s
to
In
ake a
fa
r
nd
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.
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8/9/2019 SPECIAL FACES-Session II Psychological-Session IV-Vocational
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4. Finding
other
support and/or
advocacy
groups and community agencies
that might
help
to lobby or testify during future legisla
tive efforts.
GRASSROOTS LOBBYING
TECHNIQUES
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.) Legislati ve
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
64
friends
or
relatives. Don't forget to
contact wives of key individuals who
may
be
willing to work on
your
behalf.
ESTABLISHING CONTACT WITH
LEGISLATORS
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. Petitio ns, 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 n 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
n
office and that it is spelled correctly.
8/9/2019 SPECIAL FACES-Session II Psychological-Session IV-Vocational
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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
Senator
Doe: Dear Congressman/woman
Doe
Governor
The
Honorable John Doe
Governor
of
(Your
State)
State House
(or
State Capitol)
(CapiLol City), (StaLe), (Zip)
Dear
Governor
Doe:
StaLe SenaLor State Representative
The Honorable John Doe
The
Honorable John Doe
(Your SLate) Sen ate
(Your
State) House of
Representatives
State House
(or
State Cap.) State House (or State Capitol)
(Capitol City), (State) (Zip) (Capitol City), (State) (Zip)
Dear Senato r Doe: Dear Representativ e 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 give
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.
(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.