SPECIAL FACES-Session II Psychological-Session IV-Vocational

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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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

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, 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,

I988b;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

s e f ~ e s t e e m

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. Un 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. Un Ped, 9 7 2 ~ 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.

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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 malforma tion: 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. us 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 attract iveness 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, dev iance

and

change.

New

York: Guilford Press, 1 9 9 0 ~ 2 3 7 2 5 2

Pruzinsky, T. Social and psychological effects

of

major craniofacial deformity.

C:left Palate-Cranio.facial

J.

1 9 9 2 ~ 2 9 : 5 7 8 5 8 4

Pruzinsky, T. Collaboration of plastic surgeon and medical psychotherapist;

Reconstruct ive surgery for craniofacial defornlities. Medical Psychotherapy:

n

Inter J. 9 9 ~ 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 ofChild, 1961;16:523-537.

Tobiasen,1.M.

Commentary on Pillemer, F.G. Cook, K.V. (1989).

The

psychosocial adjustment of pediatric craniofacial patients after surgery.

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.

98


18/29

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.

99


19/29

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.

1


20/29

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


21/29

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.


22/29

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

158


23/29

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.

159


24/29

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.


25/29

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


26/29

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


27/29

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.

63


28/29

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.


29/29

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.

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SPECIAL FACES-Session II Psychological-Session IV-Vocational

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