• TABLE OF CONTENTS
HIDE
 Front Cover
 Title Page
 Foreword
 Acknowledgement
 Table of Contents
 A beginning
 Accepting your child
 What you can do as a parent
 The family
 Getting started with professional...
 Florida services
 Facing your futures together
 Appendices
 Back Cover














Group Title: Report - Florida Developmental Disabilities Planning Council
Title: First steps
CITATION THUMBNAILS PAGE IMAGE ZOOMABLE
Full Citation
STANDARD VIEW MARC VIEW
Permanent Link: http://ufdc.ufl.edu/UF00075020/00001
 Material Information
Title: First steps a guide for parents of children with developmental disabilities
Physical Description: 39 p. : ill. ; 28 cm.
Language: English
Creator: Florida Developmental Disabilities Planning Council
Publisher: Florida Developmental Disabilities Planning Council
Place of Publication: Tallahassee Fla.
Publication Date: 1985
Edition: "7/85 First edition" P. 4 of cover.
 Subjects
Subject: Developmentally disabled children -- Florida   ( lcsh )
Children with disabilities -- Florida   ( lcsh )
Genre: government publication (state, provincial, terriorial, dependent)   ( marcgt )
non-fiction   ( marcgt )
 Notes
General Note: "HRS/PI 160-20."
General Note: "...project was funded in part by the Dept. of Health and Human Services, Office of Developmental Disabilities..."
 Record Information
Bibliographic ID: UF00075020
Volume ID: VID00001
Source Institution: University of Florida
Rights Management: All rights reserved by the source institution and holding location.
Resource Identifier: aleph - 000986696
oclc - 14702153
notis - AEW3204

Table of Contents
    Front Cover
        Front cover
    Title Page
        Title page
    Foreword
        Page i
        Page ii
    Acknowledgement
        Page iii
        Page iv
    Table of Contents
        Page v
        Page vi
    A beginning
        Page 1
        Page 2
    Accepting your child
        Page 3
        Page 4
        Page 5
        Page 6
        Page 7
        Page 8
        Page 9
        Page 10
        Page 11
    What you can do as a parent
        Page 12
        Page 13
        Page 14
        Page 15
        Page 16
        Page 17
    The family
        Page 18
        Page 19
    Getting started with professional help
        Page 20
        Page 21
        Page 22
        Page 23
        Page 24
    Florida services
        Page 25
        Page 26
        Page 27
        Page 28
        Page 29
        Page 30
    Facing your futures together
        Page 31
        Page 32
        Page 33
    Appendices
        Page 34
        Page 35
        Page 36
        Page 37
        Page 38
        Page 39
        Page 40
        Page 41
    Back Cover
        Page 42
Full Text




4


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A Guide
for Parents
of Children with
Developmental
Disabilities









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FLORIDA
DEVELOPMENTAL
DISABILITIES
PLANNING COUNCIL


A Guide
for Parents
of Children with
Developmental
Disabilities



















FOREWORD

The painful reality of having a child who will be permanently disabled is not an easy thing to accept. The feelings of
fear, grief, guilt, anxiety, anger and pain which accompany this realization are appropriate, and few people are able to, at
once and without question, accept such a child. After all, no one has prepared you for this shock, for your dreams of a
perfect child to be permanently shattered.
You may wonder if you will be able to meet the demands you see stretching for years before you. You may worry about
the increased financial burden on your family. You may even doubt whether you will ever be able to sleep through the
night again. You may ask, "Why did this happen to me?"
Yet your child is like any other child you love. And the sooner you are able to pick up the pieces of your life and get on
with the care and nurturing of your child, the more both of you will accomplish.
Your job in the years ahead will not be easy. Coping with a disability is not fun, or simple. Yet it can be tremendously
rewarding and filled with joy, as many parents of children with disabilities so willingly share.
This guide is designed to help you face the reality of a child with a disability. Hopefully, it will give you some very real
ways to begin to sort through your pain and confusion so that you can start to help your child, yourself, and your family.
As you read through this guide, don't think of what could have been. Instead, put your attention on how you will re-
pond and what you intend to do now that "this" has happened. Think of what you have, and what can be done today,
tomorrow, and next year. Your reward will be your child's enriched life.
Please use this guide often. It will keep you from wasting valuable time during your child's growing years. It will tell you
who, where, and how to find help when you need it.
A long and often hard road lies in front of you. We hope that this guide will get you started, will help you to take those
" first critical steps. We also hope that after reading this guide, you will know that you will not have to walk alone.

K. Joseph Krieger, Executive Director
Florida Developmental Disabilities
Planning Council
July 1985




















































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ACKNOWLEDGEMENTS

This guide was produced by the Florida Developmental Disabilities Planning Council. For additional copies call or
write:
Florida Developmental Disabilities Planning Council
1317 Winewood Boulevard
Building 1, Room 309
Tallahassee, Florida 32301
(904) 488-4180 / SunCom 278-4180
The members of the Florida Developmental Disabilities Planning Council wish to thank the many individuals who made
this guide possible. Particular thanks go to the Programs and Services Committee who first suggested the concept and the
Evaluation Committee of the Council who previewed the first and subsequent drafts of this publication. We also
acknowledge the Maryland Developmental Disabilities Council for their generous permission to use information pub-
lished in Looking Forward: A Guide for Parents of Children with Disabilities. This publication served as both inspiration and
guide as we developed our own Florida-specific publication.
We would also like to thank the staff of the Public Information Office of the Department of Health and Rehabilitative
Services for their able assistance in developing, illustrating and producing this guide. The creativity and professionalism of
all persons involved is deeply and sincerely appreciated.

PLEASE NOTE: The material found in this publication may be copied without permission unless it is identified as taken
from another source. In these instances, permission must be requested from the appropriate publisher/ source.





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TABLE OF CONTENTS

Foreword ....................................................... ........... page i
A know led gem ents .......... ................................................ .......................................................................... .................. page iii
Section O ne: A Beginning .............................. ................................................................................ page 1
Section Tw o: A accepting Your Child ....................... ........................................................ ........................................... page 3
Your Child's Needs .................................. .............................................................................. page 3
Yo ur C hild's R rights ............................. ........................ .......... ........ ..................... page 3
Your Child's Disability ........................ ................. ............... ... ....... ....................... page 3
Types of Developm mental Disabilities .... ........ ............................................................................................ page 5
C hart: G row ing Signs .................................. ............................................................... ............................. ..... page 6
Section Three: W hat You C an D o A s A Parent............................................................................. ........................... page 12
Parent Needs .. .......................................................................... page 12
Parent R rights ......................................................................................................... ....... page 14
Parent Role: Taking A action .......................................... ..................... .................... .................................. ... page 16
Section Four: The Fam ily .................................... ................................................................... ............................ ... page 18
Fam ily Needs ................................. ................................. ................................. ................... page 18
Fam ily R rights ....................... .. ......... ...................................................................................... page 18
Fam ily Role: Support for the Developmentally Disabled Child ........................ ... ..................... ................. page 18
Section Five: G getting Started W ith Professional Help ................................................................................................... page 20
M ak ing D ec isio ns ............................. .................................................................................................... ................... p a ge 20
C hart: Service Spectrum ...................... ...................................................... ....................................... ....... page 22
Diagnosis, Evaluation and Referral ........ ....... ............................. .................................... ...... page 20
The Team Approach .... ..................................................... ............................... .............. page 21
Sectio n Six: Flo rid a Se rv ices ................................................................................................ .......................... . ........ ... page 25
M medical Health Related Services................... ....................................................................... ................ page 25
Education and Related Services ...................... ...................................................... ....................................... ...... page 26
Family Support ............................................................................................. page 26
Community Assistance ........................................................................ .............. ................ page 27
Legal A id ............................. .................... ............................................. .. ............................... .... ... ........ page 28
H RS D district O offices ................................ ............................ ............................................................ ............... page 29
Section Seven: Facing Your Futures Together .................................................................................. ................. page 31
A adolescence and Sexuality ........................ ................................................................ .................................... ...... page 31
A dult Relationships .......................................... ..................................................................... ....................... ...... page 31
Employment / Financial Independence .................................................................................. ................ page 31
Building A Life For Yourself ............................ ................................................................. .............................. page 32
Sectio n Eight: A p pendices .................................................................................................. ....................................... ....... page 34
A. Department of Health and Rehabilitative Services / Program Areas .......................................... ................... page 34
B R e fe re n ce L ist ............................................................................................................................... .......................... . p a g e 3 5
C. Florida Statutes Relating to Rights of Persons With Disabilities ................ ....................................... page 35
D Relevant Federal Statutes ..................... ............................................................... .................................... ....... page 37
E. Resources ........................ .......................................... ..................... ....... ..................................... ....... ...... page 38















"There is no such thing as a
problem without a gift for
you in its hands."
Richard Bach in Illusions






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SECTION 1: A BEGINNING


This publication is about your child,
your family and developmental disabil-
ities. It was written to give you informa-
tion about your child's special needs,
rights and possibilities. It will raise ques-
tions and, it is hoped, answer some ques-
tions that you now have. Other answers
may take longer to find. This guide is in-
tended to help you make a beginning, to
take those first needed steps.
There are eight sections in this guide.
Each is included for a particular reason
and to provide you with specific infor-
mation relating to your child and his or
her disability. Overall, the purpose of
this guide is to:
Assure you that help is available for
your child and your family. Services
that may be useful to you are iden-
tified throughout.
Remind you that a child with a
disability is more like other children
than different from them. And first
of all, he or she has all the same
needs and rights as any child.
Define disabilities, tell you some-
thing about what you can expect,
and help you find other sources of
information.
Explain some of you and your
child's legal rights and tell how you
can get legal advice at reduced or
no cost.
Show how parents can and must
take the lead in finding and obtain-
ing needed services for their child.
We ask that you save the guide and
keep it with other papers important to
your child's well-being. Perhaps you may
not be able to use this information at
this time. If you feel that way, put the
guide aside for a while and come back
to it later. Remember that there is no
need to rush things right now. Take your
time to think, get information, and settle
down with your child and his or her
needs.
It is perfectly "normal" to grieve for
the child who could have been. In a


sense, the child you had hoped for,
planned on, and anticipated with much
love, is gone forever. Now, faced with
this unexpected loss, it is natural for you
and your family to experience feelings
of denial, anger, hurt and, eventually,
acceptance. Once you have reached the
stage of being able to accept your child,
great reward and satisfaction await you,
for your child is special in many ways
besides his or her disability.
If nothing else, it is hoped that this
guide may offer a glimpse of light on the
challenge which lies ahead of you and
your family. No matter how dark your
situation or your child's condition may
seem, there is truly a way that will
enable you to do what will be needed.
This guide will show you the many
hands that are willing to help you
manage. The only thing required of you
is that you take the first step.


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"Be proud of your child, accept
him as he is and do not heed the
words and stories of those who
do not know better. The child
has a meaning for you and for
all children. You will find a joy
you cannot now suspect in
fulfilling his life for and with
him. Lift up your head and go
your appointed way."
Pearl S. Buck, in
The Child That Never Grew


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SECTION 2: ACCEPTING
YOUR CHILD

Many parents have written about the
anguish they felt when they first learned
that their child had a developmental dis-
ability. They talk of the unsteady path
that their feelings followed for days,
weeks, even months after they knew
their much-loved child would live his or
her life with a handicapping condition.
In the beginning many parents are
shocked. They can hardly believe that
such a thing could happen to them and
their child. Many parents refuse at first
even to believe that the information
could be true. Gradually, as they accept
the information and go beyond their
shock and dismay, parents frequently
become depressed and angry. But these
feelings pass, and parents usually are
able to accept their child with his or
her special limitations. They recognize
that each of us is handicapped or lim-
ited in some way. In fact, no one is really
perfect.
Somewhere, somehow, most parents
manage to get over the questions that
focus on the past and the pain "Why
did this happen to me?" and turn in-
stead to the question that will open the
door to the future: "Now that this has
happened, what will I do about it?"
(Kushner, 1983). Once this important
transition is made, the parents of a child
with a developmental disability can
tackle the important business of life,
planning for a future that may well be as
bright as that of any child's.

Your Child's Needs

In fact, once you can accept your spe-
cial child and his or her limitations, you
will quickly realize that your child's
needs are more like other children's
needs than not like them. Your child will
go through the same social experiences,
the same developmental processes, the
same psychological learning as other
children. The disability may cause prob-
lems which may interfere with your


child's growth or experiences, causing
some delay in developing certain skills.
But, if your child is allowed to be a child
- experience, learn, feel and think as a
child and if he or she is treated with
all the love and attention all children de-
serve, he or she will continue on to more
mature growth and development.
Perhaps this can be better understood
if you can see that your child is first of
all a child, and only secondly a child
with a disability. It really is up to you to
determine how much of his or her poten-
tial your child can reach, given the par-
ticular disabling condition.
Your child's needs include the need
for:
physical and emotional care
stimulation of body and senses
education
recreation, sports and play
medical care
social opportunities
legal resources and protection
independence and self-sufficiency
and especially, love, affection and
acceptance as a real person.

Your Child's Rights

Once you understand that your child
has the same needs as any child (in addi-
tion to whatever special needs he or she
may have because of the particular
disability) you may also be interested to
discover that your child's rights are the
same as the rights of all people.
Your child has the right to live his or
her life in the most comfortable,
creative and fulfilling manner possible,
in freedom, with joy and with the oppor-
tunity for continuing growth. Your child
has the right to a job matched to his or
her abilities and limitations. He or she
needs equal treatment and equal oppor-
tunity and the certainty of living with
dignity.
Your child, like all children, has many
other rights as well. Some of these in-
clude:
The right to be part of a family.
The right to religious freedom and
practice.


The right to speak openly without
fear of punishment.
The right to protection against
abuse or demeaning treatment.
The right to privacy.
The right to suitable social and
recreational activity.
The right to appropriate and
humane medical care.
The right to education and training
services.
The right to live in the least restric-
tive environment possible.
The right to a responsible, impartial
guardian or advocate to protect
and ensure the exercise of these
rights.
In Florida, these rights are protected
by Florida Statute, Chapter 393.

Your Child's Disability

If you have just learned of your
child's disability, you are probably at a
loss about what you need to do first. You
may be near panic, or close to despair,
or very angry. Many parents report these
as well as other intense feelings. All are
hard to deal with, but they can and do
change. Parents need to remind them-
selves that their child's disability is not
their fault. And, once these painful and
negative feelings are recognized, you
can take deliberate steps to handle your
feelings. Only then will you be able to
deal with your child in a truly positive
way.

Discovery
In the meantime, while you are still
struggling to come to terms with your
child's disability, there is much you can
do.
1. If you have just learned of your
child's disabling condition, no matter
what your child's age and level of handi-
cap, now is not the time to make a deci-
sion to send your child to an institution
or other situation where others would
provide the care. Later on, that may be a
choice you will make, but it requires
clear thinking and careful consideration
of all your options. You need to know



















much more about your child, his or her
special disability, potential and limita-
tions. You even may be counseled now
- by doctors, grandparents or well-
meaning friends that sending your
child "away" will be best for your entire
family. Resist these pressures, at least
for now, until you can get the informa-
tion you need.
Right now, all your child really needs
is to be loved and treated like every
other child. You will want to explore all
possibilities at this stage, not settle on a
quick solution. Your child's life deserves
this careful thought.
2. Begin talking with other parents.
One of the best ways to get information
about your child's disability is to ask the
parents of a child with the same condi-
tion. Talking with someone who has
"been there" will give you a great deal
of information on what you can expect
as your child grows. Other parents also
can offer the understanding, support
and encouragement that comes from ac-
tual experience. In this difficult time,
other parents can do much to help and
often are delighted to do so.
If you do not know how to find these
other parents, you can start by contacting
the organizations working with the ma-
jor disabilities listed in Section 6 of this
guide. Remember that it is important for
both you and your child to ask for help
and information.
3. Find out where your child is today,
and start there. Nothing you read or hear
about your child is final or exact. Each
child is different, and the degree or
severity of the disability may differ in
many ways. Also, if your child is very
young, detailed testing may be impossi-
ble. Some developmental disabilities,
like autism, are very difficult to diag-
nose. Others, like Down Syndrome, al-
though easy to identify, can vary greatly
from child to child. Finally, with con-
stant changes in research, service and
legislation, there is much more that can
be done today, regardless of the disabil-
ity. These changes may help your child's
future.


4. Take that first step. It is important to
get started, to take the first step, no mat-
ter how much you, your doctor or other
professionals know about the disability.
Even if your.child is only a tiny baby, he
or she can begin immediately in an in-
fant stimulation program. If your child is
older, it is even more important to start
immediately on a program that will help
the child andi reduce the negative ef-
fects of his or her disabling condition.
Many parents also have found that to
begin a program of positive action
brings relief to them as well as to the
child. It gives a sense of moving forward,
of helping their child and themselves.
Even if an exact diagnosis is not com-
plete, children who are delayed in their
development heed not wait to get help.
Starting treatment early has the added
benefit of reducing later problems.
5. Get as much information as you can
about your child's disability. The more
you know about your child's problem,
the better. This guide includes brief de-
scriptions of some disabilities, but there
is much more to know. Much of the in-
formation you will find may not agree.
Neither will the opinions offered by peo-
ple you and 'our child meet. You will
more than likely read and hear different
points of view and will need to make up
your own mind.
When you are gathering information,
be aware that much has changed in the
past ten years in the field of helping chil-
dren with disabilities. Try to get recent
information. Even then, it may be that
no one knows exactly what your child's
problem is. Luckily, you can still get in-
formation on how to treat your child, no
matter what the diagnosis.
Early Intervention
The reasons for seeking immediate
help for a child with a developmental
disability are many. Perhaps most impor-
tant, by providing training and care for
your child at an early age, you actually
may reduce!the limitations your child
may face in later life. An effective
educational program can give your child
every opportunity to develop to the


fullest the capacities and potential he or
she may have.
The chart which follows shows some
steps in a child's normal development. It
shows at about what age children do cer-
tain things. Some children do these
things earlier or later, but most follow
the steps in order.









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What is a developmental disability? A
developmental disability is a mental,
physical or emotional condition which
affects the normal development of an
individual. A person with a develop-
mental disability is someone who is
limited physically and/or mentally in
his or her ability to perform the activ-
ities of daily living (taking care of per-
sonal needs, graduating from high
school, getting a job, raising children,
etc.). A person who has a developmental
disability has a need for a combination
of special care and treatment. He or she
may require extended or lifelong ser-
vices that are individually planned to
meet special needs.
Federal legislation* defining develop-
mental disabilities states that the per-
son's ability to carry out certain major
life activities must be affected. These
life activities are defined as:
self care
learning
mobility

*Public Law 95-602, the "Rehabilitation, Com-
prehensive Services, and Developmental Disabil-
ities Amendments of 1978" which was passed
November 6, 1978.

















self-direction
o economic sufficiency
use of receptive and expressive
language
capacity for independent living.
In order to be considered develop-
mentally disabled under the federal
definition, a person must be affected in
three of the areas listed.
Florida legislation defines "develop-
mental disability" as a disorder or
syndrome which may be the result of
retardation, cerebral palsy, autism, or
epilepsy and which constitutes a sub-
stantial handicap that can reasonably be
expected to continue indefinitely.
In the "Retardation Prevention and
Community Services Act" passed by the
Florida legislature in 1977, state treat-
ment programs for the developmentally
disabled were directed to emphasize
those programs that have the potential
to prevent or reduce the severity of re-
tardation and other developmental dis-
abilities.
The legislature also insisted that first
priority be given to developing and us-
ing those services and programs which
will allow persons with developmental
disabilities to "achieve their greatest po-
tential for independence and productive
living, which will enable them to live in
their own homes or in facilities located
in their own communities .."

Types of Developmental
Disabilities

There are many problems which are
considered to be developmental disabil-
ities. These problems can be physical,
mental or emotional. Sometimes a child
has more than one handicapping condi-
tion. For example, he or she may have a
physical disability in addition to a men-
tal disability. Children with mental retar-
dation may develop some emotional
problems as they begin to socialize with
other children and adults. A child with
cerebral palsy may need special help in
learning to communicate. A child who is
blind or deaf may be frustrated by his or


her limitations. A child with Down Syn-
drome may have heart or respiratory
problems. And so on.
Often both the child and the family
need some sort of counseling to learn
ways of handling their special problems.
It is also important to keep in mind
that no two children with a disabling
condition are alike. In the same ways
that non-handicapped children are dif-
ferent from each other, so each han-
dicapped child is special or unique.
Each child deserves and needs an assess-
ment and treatment program which will
help him or her to develop to the limits
of his or her own abilities.
So you can see how very important it
is to know something about the many
possible disabilities. The following de-
scriptions will tell you briefly about the
kinds of disabilities your child might
have. Remember that these are very
general descriptions and are offered
here as a start to an indepth look at in-
formation which will be important to
you. There are many excellent sources
of information. Some are listed in Sec-
tion 6 of this guide.

Physical Impairments
This type of developmental disability
includes many physical problems which
may put severe limitations on a child's
participation in school, family and
social life. It can be the result of an in-
jury at birth, or something caused by a
disease or accident, like poliomyelitis. It
may be inherited, as, for example, with
osteogenesis imperfecta, or brittle bone
disease. Other physical impairments
might include cleft palate, club foot,
lack of upper or lower extremities and
other conditions usually apparent at
birth.
Blindness and deafness are consid-
ered physical disabilities as are such
chronic health conditions as hemophilia,
leukemia, asthma and heart conditions
which limit a child's strength and alert-
ness, and, as a result, affect ability to
perform at school, at home or in the
family setting.


Other diseases such as juvenile arth-
ritis, muscular dystrophy and multiple
sclerosis may fall into this category.
Handicaps caused by physical impair-
ments vary considerably. They also re-
quire different methods of treatment,
depending on the severity of the
physical impairment.

Cerebral Palsy
Cerebral palsy refers to a group of
neuromotor disorders caused by dam-
age to the brain, usually at the time of
birth. These disorders involve the brain
(cerebral) and muscle control (palsy).
Typically, some damage has occurred to
the part of the brain which controls the
muscles and, as a result, they do not
work properly.
Children and adults with cerebral
palsy may move and speak awkwardly.
They may have uncontrollable jerking
movements, a poor sense of balance,
speech and hearing problems, and some-
times, mental retardation.

There are about 750,000 known cases
of persons with cerebral palsy, and some
25,000 babies are born with this disabil-
ity each year. In one state survey, as
many as 6 out of 1,000 babies born had
cerebral palsy.

Doctors do not always know what
causes cerebral palsy. There are, how-
ever, a number of factors that can inter-
fere with the development of the brain:
infections during pregnancy
Rh factor incompatibility
complications during delivery
lack of oxygen at birth
injury or infection
Three common types of cerebral palsy
include:
Spastic characterized by tense, stiff,
contracted muscles
Athetoid characterized by involun-
tary, uncontrolled motion
Atatic characterized by a disturbed
sense of balance and depth
perception
(continued on page 8)
5



















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Age i


3 months


Language

A. Does he laugh or make happy noises?
B. Does he turn his head to sounds?


-6 A. Does he "babble", repeat sounds together
months (i.e., mum-mum-mum)?
B. Is he frightened by angry noise?


9 A. Does he understand "no-no", "bye-bye"?
months B. Will he imitate any sounds or words if you
make them first?

1 2 A. Does he have at least one meaningful word
1 2 months other than "mama", "dada"?
B. Does he shake his head for "no"?

18 n o A. Does he have at least 6 real words besides
8 months his "jargon"?
B. Does he point at what he wants?



A. Does he talk in short (2-3 word) sentences?
years B. Does he use pronouns ("me", "you",
"mine")?

S1A. Does he use plurals or past tense?
years B. Does he use the word "I" correctly most of
Sthe time?


3 A. Does he tell little stories about his experi-
years ences
B. Does he know his sex?



SA. Does he say a song or a poem from
years memory?
B. Does he know all his colors?


5 years


A. Can he print his first name?
B. Does he ever ask what a word means?


This chart was adapted from the Developmental Attainment Form for Children 0-5 Years, The John F. Kennedy Institute for Handicapped Children, and
prepared in this form by David M. O'Hara, D.A.S.S. and Barbara Mosher, M.S.W., from an earlier version by Arnold J. Capute, M.D., M.P.H., and Robert F.
Biehl, M.D., M.P.H.

6
























A. Does he smile at you? A. Does he support himself on forearms when A. Are his hands usually open at rest?
B. Does he reach for familiar people or lying? B. Does he pull at his clothing?
objects? B. Does he hold his head up steadily while on
his stomach? .


A. Does he stretch his arms out to be picked A. Does he lift his head when lying on his A. Does he transfer a toy from one hand to the
up? back? other?
B. Does he show his likes and dislikes? B. Does he roll from back to front? B. Does he pick up small objects? .


A. Does he hold his own bottle? A. Does he sit for long periods without A. Does he pick up objects with his thumb and
B. Does he play any nursery games ("peek-a- support? one finger?
boo", "bye-bye")? B. Does he pull up on furniture? B. Does he finger-feed any foods?

A. Does he cooperate in dressing? A. Is he walking (alone or with hand held?) A. Does he throw toys (objects)?
B. Does he come when you call him? B. Does he pivot when sitting? B. Does he give you toys (let go) easily?



A. Does he copy you in routine tasks A. Does he walk upstairs with help? A. Does he turn book pages (2 or 3 at a time)?
(sweeping, dusting, etc.)? B. Can he throw a toy while standing without B. Does he fill spoon and feed self?
B. Does he play in the company of other falling?
children


A. Does he ask to be taken to the toilet? A. Does he run well without falling? A. Does he turn book pages one at a time?
B. Does he play in company of other B. Does he walk up and down stairs alone? B. Does he remove his own shoes, pants?,
children? -

A. Does he tell his first and last name if A. Does he jump, getting both feet off the A. Does he unbutton any buttons?.
asked? floor? B. Does he hold a pencil or crayon adult:
B. Does he get himself a drink without help? B. Does he throw a ball overhand? fashion?


A. Does he share his toys? A. Does he pedal a tricycle? A. Does he dry his hands (if reminded)?
B. Does he play well with another child? B. Does he alternate feet (one stair per step) B. Does he dress and undress fully including
Take turns? going upstairs? front buttons?


A. Does he tell "tall tales" or "show off"? A. Does he attempt to hop or skip? A. Does he button clothes fully? '
B. Does he alternate feet going downstairs? B. Does he catch a ball?
B. Does he play cooperatively with a small
group of children?


A. Is he a "mother's helper", likes to dco
things for you?
B. Does he play competitive games and
abide by the rules?


A Does he skip alternating teet?
B Does he lump rope or lump over low
obstacles?


A Does he tie his own shoes?
B Does he spread with a knife?


Movement


Social Skills


Body Use

















Surgery can correct some of the prob-
lems caused by cerebral palsy. One re-
cent development in medical research is
a delicate but often effective operation
on the brain which has been performed
with success in a limited number of
cases. Many new medicines are now
available. Speech, occupational and
physical therapy, among other special-
ized services, can help to improve mus-
cle control and enable children with
cerebral palsy to develop to their full
potential.

Epilepsy
Epilepsy is a disorder of the central
nervous system. Brain cells create ab-
normal electrical discharges that cause
seizures. There are many types of epilep-
sy and a variety of symptoms: muscle
spasms, mental confusion, loss of con-
sciousness.

There are about two million persons
with epilepsy in the United States, or 1
percent of the population. This means
that about one in every 100 persons in
this country has epilepsy.

Not all people who have epilepsy
have seizures. The seizures themselves
vary considerably but are grouped into
three main types:
1. Grand Mal characterized by fall-
ing, loss of consciousness, stiffen-
ing and shaking of entire body,
irregular breathing. This type of
seizure may last for several min-
utes and occur frequently or hard-
ly ever.
2. Petit Mal characterized by "blank
spells," losing awareness, slight
twitching, staring, blinking. This
type of seizure is most common in
children 6-14 years of age. A seiz-
ure may last only a few seconds
and may occur dozens or even
hundreds of times a day.
3. Psycho Motor characterized by a
period of mental confusion fol-
lowed by pointless or repetitive
movements, pain or dizziness. This


type of seizure can occur at any
age and may last up to 20 minutes.
In many instances, doctors never real-
ly discover what causes epilepsy. It can
be related to:
brain injury before, during or after
birth
head injuries
poisons (including lead, alcohol)
diseases (such as measles, en-
cephalitis)
disorders of the circulatory system
traumas
nutritional disorders
Anyone could have an injury or illness
that could lead to epilepsy, although
most epilepsy appears early in life. Thir-
ty percent of all epilepsy shows up be-
fore a child is 5 years old; 34 percent of
cases become evident in early adoles-
cence; and 23 percent of epilepsy ap-
pears in adults. More males than fe-
males are likely to have epilepsy.
Encouragingly, epilepsy need not be a
handicap. Some 80 percent of people
with epilepsy can be totally or almost
totally free of symptoms through contin-
uing treatment. Epilepsy can be con-
trolled partially or completely through
anticonvulsant drugs, or in some cases,
by special diets or surgery.

Autism
Autism is a neurological condition
characterized by severe problems in
communication and behavior. Children
with autism are unable to relate to peo-
ple in a normal manner.
Although autism typically appears
during the first three years of life, it can
be suspected as early as a few weeks or
months after birth. It can occur by itself
or in association with other disorders
which affect brain function. About half
of all autistic children also develop
epilepsy.

About 4 in every 10,000 children have
autism, which is four times more likely
to occur in males than in females.

No one knows exactly what part of
the nervous system is affected in autism.


Some research points to damage in the
part of the brain which controls lan-
guage and information gathered from
the outside world. Other research points
to a chemical imbalance as at least part
of the cause of autism. No known fac-
tors in the psychological environment of
the child have been proved to cause
autism. (This also means that parents
cannot, under any circumstances, cause
autism.)
Some of the characteristics of autism
are:
disturbances in the development of
physical, social and language skills
abnormal responses to sensations
speech and language difficulties
abnormal ways of relating to peo-
ple, objects and events:
-may be withdrawn, apathetic,
unresponsive
-may be resistant to change in the
environment
-may be disinterested in people
and surroundings
-may show unusual interest in in-
animate objects
may exhibit behavioral problems
which may include self-injury,
repetitive or aggressive be-
haviors.
There is no known cure for autism, but
there are different treatment programs
which can help the child with autism.
Special education programs using new
techniques can teach the child to speak,
to take care of personal needs and to act
in ways which are socially acceptable.
There is also a growing body of research
in biochemical, sensory stimulation and
behavioral intervention that will help to
make the future even brighter for a child
with this developmental disability.

Mental Retardation
Mental retardation is not a disease or
an illness; it is a disabling condition, in
much the same way as blindness or deaf-
ness is a disabling condition. It is true
that mental retardation may be caused
by an illness or infection, but it is the
result and not the process. It cannot be
















"cured" and is likely to be a life-long
condition. It is not the same thing as
mental illness.
The child who is mentally retarded
will develop more slowly than other
children. He or she may have unusual
difficulty in learning, social adjustment
and in working. A child with mental re-
tardation may have poor judgment, be
unable to reason successfully, have dif-
ficulty deciding how to act in new situa-
tions, and sometimes be unable to learn
completely from past experiences.
Just as every child is an individual, so
every child with mental retardation is an
individual. There are many differences
in personality, behavior and in the abil-
ity to learn.

There are more than six million per-
sons in the United States who have some
form of mental retardation. One in every
10 Americans (or 10%) has a mentally re-
tarded person in his or her family. There
are over 100,000 people with mental re-
tardation identified each year. In
Florida, an estimated 3 percent of the
population have some degree of mental
retardation.

Mental retardation can be caused by
any condition which impairs develop-
ment of the brain before, during or after
birth. More than 350 causes have been
identified, although in over three quar-
ters (or 75%) of all persons with some
form of mental retardation, the specific
cause is not known.
Sometimes the child is injured at
birth. Sometimes the mother becomes ill
during pregnancy, for example, with the
German measles. Sometimes something
happens to the genes or the material in
the cell which directs the growth of a
child. Often no simple cause can be
found.
Children with mental retardation are
found among every race, religion and
nationality. The condition occurs in
every educational, social and economic
background. Any person could become
functionally retarded due to brain dam-
age from an illness or injury.


Down Syndrome is one kind of mental
retardation that is caused by a change in
body cells before birth. It used to be
called "Mongolism" because of the
slight oriental shape of the eyes and the
usually dark, straight hair of persons
who have this form of mental retarda-
tion. Often there will be other medical
problems as well.
Children with Down Syndrome are
often described as warm, happy and
willing to learn. But they learn very
slowly and are likely to reach their limits
early. If your child has Down Syndrome
you will want to take advantage of spe-
cial programs as early as possible. This
will help your child to reach the highest
level of his or her ability.
All children with mental retardation
can be helped by education and train-
ing, and most will be able to live produc-
tive and meaningful lives. In fact, al-
most 90 percent of people with mental
retardation are only mildly retarded,
while about 6 percent are moderately
retarded, 3.5 percent severely retarded
and only 1.5 percent profoundly re-
tarded.
All children and adults with mental
retardation need the same basic services
as everyone else education, health,
vocational, recreation, religious and
social services. It is important to keep in
mind that with early identification, diag-
nosis and educational programs, these
children can lead useful adult lives.

Spina Bifida
Spina bifida is often called open
spine. (The scientific name is myelomen-
ingocele.) It is a problem of the central
nervous system that can be identified
easily at birth. The bones in the spine do
not close or are only partially closed. In
the opening that is left, some of the
membranes, nerves, or even part of the
spinal cord come out and form a type of
sac, usually near the lower back. This
can cause fluid to collect in the brain,
causing great pressure that may result in
brain damage and mental retardation. It
also can cause other deformities of the


feet, legs or hips. Your child may lack
sensation in the lower body. There may
be limited or no bladder or bowel con-
trol.
Doctors do not know why spina bifida
occurs. Surgery is needed to close the
open area in the spine, and is done as
early as possible, usually within the first
day of life. This surgery provides protec-
tion from infection. It is also a first step
in the process of repairing defects.
Children with spina bifida may be se-
verely physically impaired. Many learn
to walk with braces. The degree of dis-
ability will vary from child to child, as
with all developmental disabilities.
Years ago, 80 percent of babies born
with spina bifida died in infancy. Today,
95 percent will live, have normal intelli-
gence, and most will be able to walk to
the school bus and between classrooms.

Learning Disabilities
A learning disability is a problem with
understanding and using written or
spoken language. It is often difficult to
diagnose and is sometimes called the in-
visible handicap. It is sometimes confus-
ing because a child with a learning
disability most often has average or
above average intelligence. Many chil-
dren with these hard-to-define problems
develop behavioral problems as well,
becoming disruptive at home or school.
While a learning disability is hard to
diagnose, there are many signs which
warn a parent to look for help. Perhaps
your child has one of these signs.
Your child is failing in reading,
spelling, writing or arithmetic while
teachers insist the child could do
better if he or she tried.
Your child is poorly coordinated,
clumsy, awkward, has difficulty in
writing, tying shoes or catching
balls.
Your child is confused in language,
speech, or following directions.
Your child is usually forgetful or in-
attentive.
Your child is easily distracted, im-
pulsive, over-active or overly quiet.
















There is no one known cause for a
learning disability, just as there may be
more than one effective way to deal
with the disability once you are aware of
it. But it is important to discover the
disability as early as possible to allow
the child to learn ways of getting around
any problems it may cause. A correct
diagnosis, followed by special educa-
tional, medical, psychological and so-
cial services will help most children with
a learning disability lead normal, pro-
ductive lives.

Emotional Disturbances
A child who is emotionally disturbed
experiences emotional problems to the
extent that his or her ability to get along
at school and at home is seriously af-
fected. The child may be extremely de-
pressed or be terrified of school. Some
children become overly aggressive or
even abusive. Or a child may become
withdrawn and unable to relate or be
with family or peers.
The exact causes of emotional dis-
turbances are not completely known.
However, treatment can be successful.
Psychiatric therapy, counseling, and in
some cases, medicines can make posi-
tive improvements in a child's behavior.
The child may or may not be develop-
mentally disabled, depending on
whether his or her learning, self direc-
tion, self-care or capacity for indepen-
dent living also is affected.

Developmentally Delayed
"Developmentally delayed" is a term
often used to describe a child who does
not seem to be growing and changing ac-
cording to expected steps. A child can
be delayed in one or several, often over-
lapping, areas. These areas are body
movements, speech and hearing, self-
care, response to other people, ability to
behave, and ability to follow directions.
Often both the cause and the extent of
delay are difficult to diagnose.
There are many stages in a child's
growth. (These were described earlier in
this section on the "Growing Signs"


chart.) These stages are predictable and
happen at about the same age in most
children. When these actions and skills
do not seem to happen at the expected
age, parents will want to start asking
questions. j
There may be nothing wrong or there
may be a reason to be concerned and to
get help in infancy or early childhood.
Programs which stimulate a child to
develop new skills and abilities are of-
fered by the Florida public school sys-
tem. These programs rely on people in
schools, health centers, and at home to
encourage and Support a child's growth
and progress.
The term "'developmental delay"
most often simply alerts parents to
watch closely as a child grows. Since
parents usually know their child best,
they are often the first to recognize a po-
tential problem and get help. Fortun-
ately, in today's world, the child with a
developmental delay need not be handi-
capped or heldjback in any way.
In fact, a child with a physical or
mental disability is not, at birth, handi-
capped, but instead is simply disabled.
Doctors, parents, teachers, therapists,


relatives and friends will be the ones
who may convince a child with a devel-
opmental disability that he or she is han-
dicapped.
For all who work with these children it
may be hard to avoid doing this, for our
own fears, misunderstandings and pre-
judices will come out in many different
ways. Often, a person may not even be
aware that this is happening.
It is especially important that you, as
a parent who cares for a child with a
developmental disability, treat your
child as if he or she will succeed. There
may be unusually difficult obstacles in
the way, but your child can still reach
some level of success if he or she is sup-
ported, encouraged, loved and allowed
to succeed as well as fail.


N


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:., *. ,
/l *r

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"You can rebel, resent,
resist the situation,
constantly question why
it happened, play the
martyr, mope, and be
S defeated. Or you can
S accept the challenge,
take up the gauntlet
and find the blessing
and victory in it,
building on and
appreciating the
positive points, looking
for and appreciating the
S opportunities to grow in
depth and sensitivity as
a person, finding deep
I joy in all evidence of
overcoming limitation,
no matter how small."
Judith L. Jogis, mother
S of a disabled child in
"To Be Spoken Sadly,"
The Disabled and Their Parents:
A Counseling Challenge.


~_ I


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SECTION 3: WHAT YOU
CAN DO AS A PARENT


You may have just been told your
child has a developmental disability. Or
you may have known for some time that
your child is "different" and needs
special care. Whatever the situation,
you are probably learning how to handle
your own fears and disappointments,
anger or hurt, shock and dismay.
Sometimes, parents of children with
disabilities get so involved with this new
and often frightening situation that they
forget that they are people too. In your
trips to medical doctors, hospitals, ther-
apists, psychologists, social services, eye
doctors, etc., it becomes very easy to
put yourself far down the list of things
requiring special attention. But parents
are people too. In fact, one of the best
things you can do for your child is to
take care of yourself. Then you will be
able to do the many things he or she will
need, you will be able to do these things
without resentment, and perhaps most
important of all, you will be able to love
your child more freely.

Parent Needs

One of the first things you may dis-
cover as the parent of a child with a dis-
ability is that you never seem to have
enough energy. But stop for a moment
and think about it. Your sleep may be in-
terrupted by a child who is in pain or
who just can't sleep. You may be carry-
ing your child and his or her special
equipment for hours at a time. You may
be worried about what you can do or
what must be done next. You may be
working at a full-time job or doing all
those things needed to keep your home
and family "normal." You may be doing
everything alone or with only occasional
help. When you stop and think about it,
there are many new demands on you
and your energy. No wonder you may be
tired or lack the energy to do your usual
daily activities!


Many parents of children with disabil-
ities don't ask for or accept help for
themselves. Please don't make this mis-
take. You deservejan occasional break
from your child, like every other parent.
You need uninterrupted sleep, just like
most people. And while it may not al-
ways be possible to do either, it will cer-
tainly help both you and your child if
you take good care of yourself phys-
ically.
Whether you have come to accept
your child and his or her disability may
depend on the support, acceptance and
encouragement of friends, family and
other people. Unfortunately, many of
those closest to you will not know how
to do this. They, too, may be afraid. Or
they may worry about saying or doing
the wrong thing. Often family and
friends must handle their own feelings
before they are capable of offering their
help and support to you.
Other parents of disabled children
have faced these same problems and
frustrations. Many have joined to share
their experiences and offer support to
one another by forming parents' organi-
zations. These parents can understand
what you may be going through, the
doubt and uncertainty you face, the
courage and endurance that will be
needed.
Many of these parents are willing to
help you and you child. They are eager
to share their personal stories and to
help you as you begin your own journey.
Even if your child's diagnosis is not yet
known, some of these parents may be
able to help you find information and
services for your child.
In Florida a statewide Parent-to-Par-
ent organization ls now being formed.
There already mry be a group in your
immediate area. To find out, call or
write the Florida Developmental Dis-
abilities Planning Council, 1317 Wine-
wood Boulevard, Building 1, Suite 309,
Tallahassee, Florida 32301, (904)
488-4180, or contact the disability group
listed in your local telephone book.
Finally, the health care of a child with
a developmental disability can place a


serious financial burden on the entire
family. There may be special medical
treatment, braces, hearing aids, glasses,
tutors, wheelchairs, learning materials,
communication devices, special classes,

homemaking help. There may also be
necessary hospitalization, transporta-
tion costs and lost income from work.
Not many families can pay for these
things from their own incomes. Luckily,
there are many ways for families of chil-
dren with disabilities to get help in meet-
ing their expenses.

I


Finding out where to get financial
help and actually getting it will take
time. It may be a difficult and time con-
suming job. But if your family meets the
requirements for financial help you
should claim it. Most important of all,
no child or adult with a developmental
disability should go without needed
help.

Social Security
Social Security is the largest govern-
ment support program. It is not welfare.
Most people who work for any length of
time have had Social Security deducted
from their paycheck. A part of the
money collected in this way is set aside
for families with a disabled member.
Monthly Social Security benefits are
available to:
e workers who were severely disabled
before the age of 65;


L *^


U. '"



















retired workers over 62 years of age
and their dependents; and
children of retired, disabled or de-
ceased workers, provided that the
children are either under 18 years
of age, or were severely disabled
before the age of 22 and continue
to be disabled.
Supplemental Security Income (SSI)
for Aged, Blind, and Disabled is another
Social Security program. If a person is 65
years of age or older, or if the person is
any age, including children, and also
blind or disabled, he or she may receive
monthly payments from the Social
Security Administration.
To find out if the disabled child or
adult in your family is eligible for these
payments, a parent, guardian or other re-
sponsible adult can apply to the Social
Security Office.
For information and application
forms for Social Security programs, call
your local Social Security Office. Local
telephone numbers are listed in the tele-
phone book under Social Security Ad-
ministration.

Veteran's Administration
The Veteran's Administration is
another government agency which may
be able to help. CHAMPVA, the Civilian
Health and Medical Program of the Vet-
eran's Administration is a health and
medical care plan. Financial aid for
medical care is provided to a spouse or
child of a veteran (living or deceased)
who has a permanent, total disability.
This disability must be the result of an
injury that happened while the person
was in military service. Benefits usually
end when the dependent child turns 18
years of age, unless that child is not able
to support him/herself because of a
mental or physical disability that was
obvious before the age of 18. In this
case, the child can continue to receive
benefits.
For more information about this pro-
gram, call toll free or write:
Veteran's Administration Regional
Office
Benefits Information and Assistance


Post Office Box 1437
St. Petersburg, Florida 33731
1-800-282-8821

Veteran's Benefits for Families
Another program from the Veteran's
Administration provides for the educa-
tion of wives, widows, or children of vet-
erans who are 100 percent permanently
disabled. The disability must have come
from an injury during the time the per-
son was in military service. The selection
of training programs for children with
disabilities is given special attention.
For more information contact:
Education Assistance Department
Veteran's Administration Regional
Office
Post Office Box 1437
St. Petersburg, Florida 33731
1-800-282-8821

Medicare
Medicare is another federal program
that is financed through Social Security
taxes paid by employers and employees.
Medicare covers all people over 65 who
are eligible for Social Security as well as
younger people who are disabled. Dis-
abled adult children who receive Social
Security benefits from their parents' em-
ployment can receive Medicare bene-
fits. Any child under age 18, disabled or
not, may receive Children's Benefits if
the parent is retired, disabled, or de-
ceased.
There are two parts to Medicare. Part
A is hospital insurance and does not
cover doctor bills or custodial nursing
home care. This part is free. Part B helps
to pay doctor bills, outpatient hospital
services and the cost of medical services
and supplies. Part B costs people who
use it a small monthly fee. Some items,
like eyeglasses and hearing aids, are not
covered by Medicare. Both Parts A and
B have deductibles or an amount that
must be paid by the user before addi-
tional expenses are covered.
For more information call toll free or
write:
Medicare
Post Office Box 2360


Jacksonville, Florida 32231
1-800-342-7586

Medicaid
Medicaid or Medical Assistance is ad-
ministered by the Department of Health
and Rehabilitative Services and is fi-
nanced by federal, state and county
funds. It provides services for persons in
financial need who are unable to pay for
needed medical and health care ser-
vices.


-^ ri, .. .


7/








Anyone who receives public assist-
ance, or welfare, or Supplemental Secur-
ity Income (SSI) may receive a Medicaid
card. A family may be eligible for Medi-
caid if it earns a minimum monthly in-
come, or none at all, and owns little or
no property. Or, a family may have a
higher income, receive no public as-
sistance or SSI benefits, yet have very
high medical bills because of a child
with disabilities. This family might also
be eligible for a Medicaid card if they
meet some other financial requirements.
Once a person has a Medicaid card,
he or she may choose to use the services
of a private doctor who accepts Medi-
caid or to go to public clinics. The pro-
gram also allows your child to receive
hospital care, nursing home care, labora-
tory services, dental care, and many
other related services.
To find out more about Medicaid pro-

















;rams, contact the local district
viedicaid Office nearest you. (See Sec-
:ion 6.)

Hill-Burton
Persons who do not qualify for Medi-
caid or other public plans and do not
have adequate health insurance cover-
age, but need medical care, may be able
to receive free care or below-cost hos-
pital or other medical facility services
under the Hill-Burton Act. Hospitals or
medical facilities that receive federal
funds for construction and moderniza-
tion under the Public Health Services
Act (Titles VI and XVI) are required to
make available a reasonable volume of
free services for people who are unable
to pay for these services.
For information and assistance con-
tact your hospital admitting department
or social services department to see if
funds are available. Since not all hos-
pitals offer this program, you may also
want to write or call for a list of Florida
facilities in your area which have funds
available.
Office of Community Medical
Facilities
1323 Winewood Boulevard
Building 1, Room 256
Tallahassee, Florida 32301
(904) 488-8672

Insurance Benefits
Many families with a child who has a
developmental disability may have a
personal medical insurance policy. If
you have medical insurance, one of your
first steps might be finding out exactly
what benefits or services are covered.
To do this, you will need to start first
with your child's physician and find out
what care your child needs, why, and if
other options are available. Once you
have this information, your next step is
to contact the benefits department of
your health insurer or your own em-
ployer. When you reach the benefits
department, find out which services are
covered or not covered. Be sure to
record all information you receive, in-
cluding the name of the person who is


giving the information to you. It is usual-
ly helpful to follow up on your tele-
phone conversation with a letter to this
person stating what you understand the
insurance benefits to be. Keep a copy
for your files.
When you file a claim, fill out all
forms carefully an completely. Provide
as much information as possible, for ex-
ample, photographs, detailed explana-
tions, daily routines, background med-
ical data. Keep copies of all information
sent. Always talk to the person handling
your claim rather than talking with a dif-
ferent person each time.
This will help to keep information
together and will shorten the time it
takes to process a claim.

Other Programs
There are a number of other income
support programs. Most have income
level requirements and sometimes other
requirements as well. These programs in-
clude:
Aid to Families with Dependent
Children (AFDC)
Food Stamps!
Vocational Rehabilitation Services
Emergency Assistance Grants
Private Voluntary Agencies
Local fraternal organizations, ser-
vice groups and foundations
The local organization that pro-
vides services to people with dis-
abilities like Oour child's (for exam-
ple, United Cerebral Palsy, the As-
sociation for Retarded Citizens,
etc.)
To find out more about these and
other resources, call your Department
of Health and Rehabilitative Services
District Office or your local human re-
sources department or department of
social services listed in the telephone
book under you county government.
Ask the person who answers to explain
who qualifies for each program.

Tax Deductions and Tax Credits
There are a sizeable number of in-
come tax deductions and credits avail-


able to parents of children with develop-
mental disabilities. Every parent can
benefit by using these deductions and
credits.
Every year the Internal Revenue Ser-
vice publishes up-to-date tax informa-
tion. This information is available from
your nearest tax office or by mail from
your closest IRS regional office. Check
your telephone book under Internal Rev-
enue Services for the telephone number.

Medical Assistance Options
Besides the programs already listed,
you may want to:
1. Talk with your doctor. He or she
may be a participating member of
programs which provide free care
to unemployed persons and their
families.
2. Contact your county medical as-
sociation and ask if they can refer
you to any special programs or
care givers.
3. Check with any area HMO (Health
Maintenance Organization). Some
of these groups are providing free
medical care at after-hours clinics.
4. Contact your union or the AFL-CIO
and see if they are participating in
any free health care programs.
5. Call your local dental association
to see if assistance for dental care
is available.

Parent Rights

Many parents of children with dtS
abilities find that society as a whole is
quite unprepared to accept their child.
They, as well as the child, frequently are
avoided by strangers, treated poorly by
doctors, teachers and other profession-
als, and patronized or pitied by friends
and relatives. Some of these parents
simply accept the reactions of others
and believe that, as parents of a child
with a disability, they no longer have the
same position in life as a "normal" fam-
ily. This is simply not true.
As parents, you have some very basic
rights, rights you should know and insist
















on. These include*, as a start, the follow-
ing:
The right to sound medical informa-
tion, explained in terms and ways
that can be understood clearly.
The right to regular re-evaluation of
your child and his or her progress.
The right to information that will
help you meet your child's special
needs.
The right to information about your
child's future.
The right to know about available
community resources including re-
habilitative services.
The right to hope, encouragement
and consideration.
The right to meet and talk with
other parents who have children
with disabilities.
The right to a personal life apart
from your child, including the right
for recreation, for time alone, for
time with each other, for time to
read, paint, write poetry, visit with
friends, exercise, or whatever.
The right to complain, to cry, to
feel sorry for yourself, to be angry;
in short, the right to be as human as
you were before your child was
born.
Along with these basic rights, parents
will want to be aware of the legal rights
of any child with a disability. These
rights are identified by both the Florida
Legislature and the United States Con-
gress.
The most current federal law is the
Developmental Disabilities Act and it
was passed in 1984. It is known as Public
Law (P.L.) 98-527, and it updates earlier
laws to include a wider range of disabil-
ities and to provide more services to
people who have them.
In this law support is given to moving
people now in large institutions and to
keeping others from entering them. Spe-

*This list was adapted from The Disabled and
Their Parents: A Counseling Challenge by Leo
Buscaglia, an excellent and moving book that will
be most helpful to anyone who cares about a child
with a disability or his or her family.


cial effort is encouraged to keep people
with disabilities in their own homes and
communities, to learn, work and live as
normally as possible. Most of these peo-
ple will require special services. Others
may need total care. The law makes
clear that such services must be given.


; '
I ***






Before this law there were several
others. You will want to become familiar
with them. They affect all parts of the
lives of people with disabilities.
Public Law 91-517 The Develop-
mental Disabilities Services and
Facilities Construction Act of 1970.
Public Law 93-112, Title 5, Section
504 The Rehabilitation Act of
1973, usually known as the DD Act
or just Section 504.
The DD Act and its amendments
define developmental disabilities
and the services required for them.
One requirement of the DD act is
that every state have a protection
and advocacy system. (See page
28.)
This system must deal with many
problems: employment discrimina-
tion, rights to education, trans-
portation and building accessibil-
ity, guardianship, adult protective
services, relocation of people from
institutions, and rights of people in
institutions. The DD act also gives
support and technical aid to indi-
viduals and groups that work with
handicapped people and their
needs.
This aid can include discussion of
issues, legal action to enforce laws,


public hearings, and coordination
of services. It can mean helping
people learn to be their own advo-
cates or spokespeople or serve as
advocates for someone else. These
services are given free of charge.
Under Section 504 any public or
private building or service which
uses public tax dollars must be ac-
cessible to people with disabilities.
Services must be available and
physical barriers (for example, no
wheelchair ramps or too-narrow
doorways) must be eliminated. All
public transportation must be
usable by people with disabilities.
* Public Law 94-142 Education for
All Handicapped. This guarantees a
public education for children with
handicaps from age 0-21 (effective
October 1, 1980). This law
-requires states to provide special
education and related services to
children with special needs.
-provides financial assistance to
states and local school districts
to provide needed programs and
services.
-establishes and protects due pro-
cess or the right to legal action
for parents and other advocates.
* Chapter 393, Florida Statutes Re-
tardation Prevention or Community
Services Act. This law
redirects Florida treatment pro-
grams for the retarded and other
developmentally delayed in-
dividuals to emphasize programs
to prevent or reduce the severity
of the disability.
gives priority to developing and
using community-based place-
ments, services and treatment
programs.
provides for the operation of ser-
vices by private businesses, not-
for-profit corporations, units of
local government, and other or-
ganizations instead of exclus-
ively by state agencies.
creates the Florida Develop-
mental Disabilities Planning
Council as an advisory body for
15
















programs and services affecting
persons with developmental dis-
abilities.
There are numerous other Florida and
federall statutes which concern people
Nith disabilities and handicaps. These
aws affect the everyday lives of each of
is. A brief overview of these laws can be
foundd in Section 8, page 35.

Parent Role: Taking Action

If your child is to be helped, you, as a
aren't must be willing to move past ac-
:epting your child's disability, past
understanding of his or her special
ieeds, and into the new role of taking
action to develop a total life plan for
your child. Action is any planned activ-
ty that leads to change. Now and as
/our child grows, you may see much
Lhat needs to be changed. As the person
Nho cares the most about your child,
you are also the one who can see what
ieeds to be done. Or what must be
:one.
You are your child's most important
advocate. You will need courage and
;tamina to take on this task, but the
benefitss for your child will be worth it.
rhe sooner you are able to begin, the
-nore you will be able to do. The follow-
ng steps will get you started.
1. Get information. You and your
child need to know as much as pos-
sible about his or her specific dis-
ability. Ask your doctor for pos-
sible sources of information. Use
your public library. Make sure you
understand any scientific or tech-
nical terms. If you do not, ask your
doctor or another professional to
explain in terms you can under-
stand. Write to the organizations
listed in this guide in Section 8.
Check any other possible sources
for information. Read. Ask. Dis-
cuss.
2. Learn. Become an expert on your
child's disability, treatment pro-
gram and probable progress. If
your child needs or can benefit


from some activity or exercise, find
out how you can help. Observe
carefully any procedures that your
child's doctor, therapist or other
professional performs on your
child. Notice how your child re-
sponds to certain people, the en-
vironment, and other objects, toys,
animals. Be a detective: the more
you learn the more you may be
able to help.
3. Record. Keep copies of the infor-
mation you find about your child's
disability. Make and keep a written
log of his or her appointments,
evaluations and referrals. Note the
treatment given. Keep copies of all
letters about your child. Ask for
and obtain in writing the diagnosis
and comments of professionals in-
volved in your child's program of
care. Take notes on your telephone
conversations about your child. In-
clude the date, reason for calling,
what was said, any outcome ex-
pected. Save any scrap of informa-
tion that may be useful later. Keep
this guide with your other informa-
tion in a file, notebook or other
safe place.
4. Believe. Bot lyou and your child
are lucky to be alive now instead
of even 10 years ago. Today, peo-
ple with disabilities are encour-
aged and helped to lead their lives
in the fullest way possible. Know
that your child can benefit from
the best possible care. Have faith
in yourself as you struggle to cope
with your ov n feelings while you
go on to he p and care for your
child.
5. Act. Although many people will be
involved in the care of your child,
only one person may be aware of
everyone else: you. Some of the
other people will be helpful, and
others will not. Often the quantity
and quality of help and support
your child gets will depend on how
well you arid these people get
along. But it is the parent who must
guide the child through the ser-


vices needed. To be an effective
guide, the parent must do more
than get information and make ap-
pointments. In all cases the parent
must actively work to get what is
deserved and needed for the child.
As your child's case manager
you will be doing a difficult job.
You will be putting or pulling -
the pieces of care together. As
your child's advocate, you will
speak for your child's legal and
human rights and work to get
changes that may be needed to
protect them.
Finally, as your child's mother,
father or legal guardian, you will
need to make plans for your child
and his or her care in the event that
you die or are yourself disabled.


























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"Joy can be real only if people
\Leo N. Tolstoy
\ \ / '. '.- 1 "," T ; '











"Joy can be real only if people
look upon their life as a service
and have a definite object in life
outside of themselves and their
personal happiness."
Leo N. Tolstoy


















SECTION 4: THE FAMILY

The challenge of raising a child with a
disability is great. It may not be all sad
or dreary, but it can be a difficult and
time-consuming job. All family members
will be affected. Each family member
will in some way also affect the child
with a disability.

Family Needs

As a family member, you may want to
meet other families who have children
with disabilities. You may discover that
the problems you thought were yours
alone are shared by many. You may find
that the needs of your child can quickly
overshadow the needs of other family
members. This will be harmful to all, in-
cluding the child with a disability, if feel-
ings of resentment build up. It is a hard
job for any family to learn to balance
everyone's skills and needs. It is also a
job that will require shared information,
careful thought and planning together.
Coping with other relatives may seem
impossible, particularly if you have just
learned of your child's disability. You
may need to "bend over backwards" to
help grandparents, aunts, and uncles at
a time when you are yourself troubled.
Some relatives may never accept your
child. On the other hand, given a chance
to adjust, your relatives can be a
valuable support system.

Family Rights

A family also needs to know what its
individual members' rights are. Each per-
son must understand that living with a
child with disabilities doesn't take away
the basic rights of other family mem-
bers. Each person has the right to go on
living his or her own life, to work and
play, to laugh, love and be loved -
apart from the child with disabilities.
It is especially important that the care
of the child with a disability be shared
among all family members, not just one.
Your child will learn much from the
variety of interactions that come from


being cared for by different people
Other family members will benefit, too
The direct, personal contact with the
child's care will help each family
member to better understand the prob-
lems caused by the disability and to ac-
cept the child with his or her limitations.


-


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1, 1
-'



Together, a family can create the kind
of home that will allow the child with a
disability to learn and grow in comfort
and security. In such a home, each fam-
ily member will share in the joy of daily
successes and triumphs as well as the
pain of failure and unmet hopes.
I

Family Role: Support for the
Developmentally Disabled Child

For the most part, your child will learn
about the world outside from each per-
son in the family. If they are afraid, your
child will learn fear. If they are embar-


rassed, your child will learn that he or
she is an embarrassment. If they are
patronizing, your child will learn that le
or she is to be pitied.
On the other hand, if they are cheer-
ful, he or she will learn to be cheerful
too. If they encourage, your child will
learn hope. If they love, so will your
child.
This may seem overly simple but, we
do learn to be human, and our family
members are our first teachers.
(Buscaglia, 1975) And, as the child learns
what it is to be human, the rest of the
family learns what it is to be mdre
humane.
Basically, the family is a training
ground for your child. Your safe hone,
where your child's basic needs are met,
is also the place where he or she will ex-
periment with behavior and feelings.
What your child learns at home from all
family members will be the foundation
for how he or she will behave and feel in
the outside world.
Because of this, the family plays a
vital role in your child's development
and growth. The family, as a unit, will be
the first to teach your child to 'be
human, to build his or her unique per-
sonality, to develop a positive self im-
age, to love, and to face the ever chang-
ing outside world. It is from the family
that your child will learn and experience
that, even with severe disabilities, it is
okay to be exactly like he or she is.



19





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"Hope is the beginning of
plans.. ."
Norman Cousins


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SECTION 5: GETTING
STARTED WITH
PROFESSIONAL HELP

As you read this guide, your child will
probably be in one of these stages along
the way to getting help:
1. Newborn Physical problems are
already present: open spine, arm or
leg malformation, cleft palate,
Down Syndrome, or other prob-
lems.
2. One three years You may no-
tice signs that your child is de-
veloping more slowly than other
children the same age. (See Grow-
ing Chart, p. 6.)
3. At or near school age Many
small or large signs may signal a
problem to parents or teachers: dif-
ficulty in getting along with other
children; inability to follow direc-
tions or pay attention; inability to
tell the difference between certain
shapes and sounds.
It's not easy to accept that your child
may be different from other children at
any age. Getting started may be easier,
however, if your child is at the first or
second stage.
A physical problem may need im-
mediate attention. Decisions about what
to do may need to be made quickly,
sometimes without much information.
Sometimes, doctors or other profession-
als may even suggest that you not allow
treatment for your child.

Making Decisions

Some hard questions which might
help parents who must make decisions
about whether to treat a child with a ser-
ious disability might be:
What are the chances my child will
die without treatment? Who will be
responsible?
Can treatment be given with equal
benefit at some other time?
Will my child suffer? How will I feel
about that?
What will cause the least harm and
20


the most benefit to my child? To
myself? To our family?
Fortunately, in nearly every case now
there is hope for the child's life. New
parents may want to ask the hospital
staff to put them in touch with other
parents of children with birth defects.
Those parents can help you think
through the earliest questions.
If your child is slightly older, you may
not know what the extent of the disabil-
ity may be. You may even be afraid to
find out. Remember that a child's hand-
icap actually jay be reduced if the
child gets the right treatment or training.
Stage three is usually the hardest
point to enter a service system of places
and people that may include schools,
teachers, tests, psychologists, counsel-
ors, therapists and medical services.
Often these people and their services
will disagree op their assessments of
what your child's needs are. They may
suggest different programs for his or her
care. This can be very confusing.
There are some basic steps to expect
and to plan. These steps may be differ-
ent for every family. They will usually
include medical care, education and
training programs, and support for the
family. Some of these basic steps are
listed below.
If your child is very young:
Get any medical care needed for
your child. |
Learn all you can about your child's
disability.
Make appointments with a clinic or
doctor to find out more about your
child. Ask your doctor to help.
Begin asking questions; find parents
of children with the same disabil-
ities.
Set your bwn limits to safeguard
your health.
If your child is older:
-Get an evaluation or screening.
Health departments may refer you
to the special education department
of your school system.
Keep in touch and follow up on any
program that is planned for your
child.


Seek out an advocate or contact
person on whom you can rely.
Recognize your importance to your
child's progress. You are parent,
care coordinator, and spokesperson.
Your continued involvement is vital.
In Section 3 of the guide there are
more suggestions on how to get started.
These first steps can be difficult and
even painful. Yet they can lead to a
richer and more satisfying life than you
ever dreamed was possible.
As a parent, you face what may seem
like a maze of services and people. IThis
is one reason why it is so necessary that
you take seriously your role in secu ing,
coordinating and monitoring your
child's care. I
On pages 22 and 23 is a chart de-
veloped by the Maryland State Planning
Council on Developmental Disabilities,
which shows some of the many services
and where they may fit into the life of
your child and your family. Mary of
these services will be repeated at differ-
ent times and places; many will be used
continuously.
The chart is intended to give you a
broad overview of what you can expect.
Some definitions and more detail will
follow in Section 6 of this guide.

Diagnosis, Evaluation and
Referral

Getting help starts when you find out
what the problem is. This is called a
diagnosis. Specialists from different
fields will want to test and examine your
child. When they have done this they
will make their diagnosis and talk with
you about what can be done.
There are several ways you can get an
evaluation and diagnosis of your child
and his or her disability. You may want
to start by seeing your own doctor or
asking for a referral to another
specialist. You also can contaLt the
local developmental services office of
the Department of Health and Rehabil-
itative Services (HRS) for referral to their
Diagnostic and Evaluation Unit.
















You also can find out about the ser- IA Word of Caution .


vices in your area by calling the local of-
fice of your:
County School Board
Association for Retarded Citizens /
Florida
Florida Epilepsy Foundation
United Cerebral Palsy
Florida Society for Autistic Citizens
County Head Start Program
o Spina Bifida Coalition of Florida
Easter Seal Society
Once you and the professionals know
what your child's disability is, a plan for
care and treatment can be developed.
This plan will include the physical,
social and emotional health of your
child. Since you are the one who will
choose the plan that best meets your
child's needs, be sure that you under-
stand exactly what is planned. If you are
not comfortable or do not understand
some of the technical words used, be
sure to ask questions.
Below are some of the words which
you may hear when discussing services
for your child.
Audiology Special training for hear-
ing problems.
General Practice Traditionally, the
services of a "family doctor" refers to
the private offices of a doctor trained in
general medicine, or sometimes internal
medicine. Sometimes, this doctor will
help the patient or family manage
health problems. This doctor will call in
specialists as necessary.
Habilitation A combination of treat-
ment and therapy required to help a
child or young person acquire skills
necessary to grow up to be as indepen-
dent as possible.
Internal Medicine Special training
which covers most medical problems ex-
cept surgery.
Neurology Special training which
studies problems and diseases of the
nervous system.
Nutrition Science dealing with diet
and proper foods to eat for health and
for special medical conditions.
Obstetrics Special training in preg-
nancy and childbirth.


No matter how many so-called ex-
perts see your child, none will ever be as
familiar with him or her as you are. You
will be able to recall and relate your
child's growth and development pattern.
You will know his or her present per-
formance better than anyone. You will
know how your child eats, sleeps, plays
and works. Many children with disabil-
ities have been able to learn and live full
lives only because a parent refused to
accept a wrong diagnosis for the child
and continued to seek help.
If something about a diagnosis or
treatment program strikes you as not
right for your child, discuss it with your
doctor or other professional. Tell why
you believe there is a problem. (Doctors
are people too, and anyone can make a
mistake!) If you still have doubts, ask for
a second opinion or a third. Trust
yourself and what you know to be true
about your child. A life may be at risk.
A most compelling example of a
parent's unwillingness to give up her
Occupational Therapy Special
therapy to help people with a disability
develop skills necessary to their work
and every day life.
Ophthalmology Special training for
problems with eyes. This doctor may
operate on the eyes.
Optometry Special training for test-
ing eyes and writing orders for glasses or
contact lenses.
Orthopedics Special training which
focuses on the skeletal system.
Otolaryngology Special training for
problems of ear, nose and throat.
Pediatrics Special training in the
medical problems of children from birth
to teenage years.
Pedodontics Special training in chil-
dren's dentistry.
Physical Medicine and Rehabilitation -
Special training for doctors in the treat-
ment of physical disabilities.
Physical Therapy Special training to
use heat, massage and exercise to im-
prove muscles in the body and improve
coordination.


child is the story of Christy Brown, a
severely disabled man with cerebral
palsy. Because he could not com-
municate in any way as a child, doctor
after doctor insisted he was mentally
retarded as well as physically disabled.
His mother refused to accept this diag-
nosis and continued to look for ways to
help her son. Today, writing with his left
foot, he is the successful author of
several books, including one titled My
Left Foot.

The Team Approach

When you first begin to look for help
for your child, the team that provides
services or treatment may be just you,
your child and your medical doctor.
Eventually, depending on the specific
needs of your child, the team may grow
to include a medical social worker, an
occupational and physical therapist, a
psychologist, teachers, a speech and
language pathologist and a number of
medical specialists. Each of these pro-
fessionals will be more or less helpful to
Podiatry Special training for prob-
lems of the feet.
Psychiatry Special training to treat
mental and emotional problems. Doctor
can prescribe drugs and medical treat-
ment.
Psychology Special training for
mental and emotional problems. Does
not include prescribing drugs or medical
treatment.
Rehabilitation A combination of all
kinds of treatment and therapy required
to assist the person with disabilities to
get or regain skills necessary to be as in-
dependent as possible.
Speech Therapy Special therapy for
speech problems or learning problems.
Urology Special training in problems
of the urinary system.
Vocational Rehabilitation Special
therapy to help the person with disabil-
ities select an occupation or career and
learn the tasks necessary to perform in a
job. Includes counseling on how to find
a job.
















your child, depending on the services he
or she needs. For example, for a child
who is missing a leg, emphasis would be
placed on medical, psychological and
rehabilitative educational programs.
The best way to provide these services
is through a team approach, coordinat-
ing efforts and working together. Unfor-
tunately, this doesn't always happen.
The medical doctor may not know what
the speech therapist is doing. The
speech therapist may not know what the
classroom teacher is doing. And so on.
No wonder close cooperation is fre-
quently hard to come by!
This situation may be made worse by
the doctor or specialist who believes
that what he or she is doing is the most
important part of your child's treatment
program. One of your many tasks will be
to make sure that your child is viewed as
a person and not as a limb, a reading
level, or a task.
As soon as possible, the treatment
team should also include your child. He
or she deserves to be a part of the
decision-making process. It may be nec-
essary to translate or explain what is go-
ing on in terms your child can easily
understand, but it will be well worth the
effort to allow your child some control
over his or her life. As he or she matures,
and if he or she is capable of doing so,
your child may well take over the coor-
dination and management of treatment
and care. For right now though, you will
be the one who makes decisions as you
seek and then follow a prescribed treat-
ment program.
A System of Services and Support*
This chart gives an overview of services
and support needed through several stages
of a child's life. Most of them are services
provided by agencies and organizations.
You will find more information about these
on the following pages.
Some of this support is more personal. It
has been discussed earlier in this guide.
Both kinds of service and support are im-
portant to your child. They often work
together and are necessary at the same
time. As you will see, most extend over a
lifetime.


EDUCATION U Infant stimulation
Early intervention
Programs from local education
i agency, voluntary associations,
or health centers







HEALTH CARE Your doctor
Your health department
jWell baby clinic
Early medical treatment
First diagnosis / evaluation
Genetic counseling


FAMILY SUPPORT U Extended family and friends
Parents of other children with
disabilities
j Respite care
Baby sitters
Day care


OTHER COMMUNITY
SERVICES
!


* Parent organizations
* Financial aid


*Developed by the Maryland State Planning Council on Developmental Disabilities.


Type of Services


Infant (0-3)

















Early Childhood (3-5)


* Pre-School
Public
Private centers with compre-
hensive early training
programs
* Day care
* Early screening for school place-
ment


* Comprehensive diagnosis / eval-
uation
Clinic or private doctors
* Continued treatment




* Continued family / friend support
* Respite care
* Family counseling


* Continued parent organization
support
* Continued financial aid
* Day care
* Foster care
* Adoption services



















A -, I '--


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i ~


7- ,'


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-#, \





* I










II


"Courage is not the absence of
fear; it is the making of action in
spite of fear."
M. Scott Peck, in
The Road Less Traveled











24


I I


















SECTION 6: FLORIDA
SERVICES

In Florida, the Department of Health
and Rehabilitative Services (HRS) is the
state agency primarily responsible for
the evaluation and treatment of persons
with developmental disabilities. HRS
meets this responsibility by providing
services locally through its regional of-
fices. Because of the size of our state
and the number of services needed, HRS
divides the state into 11 districts. Each
district may serve one or more counties.
A directory of these districts and the
counties included in each can be found
on page 29 of this section.
HRS provides services grouped into
specific program areas. These areas are:
o Aging and Adult Services
Alcohol, Drug Abuse and Mental
Health
Children's Medical Services
o Children, Youth and Family Ser-
vices
Developmental Services
o Economic Services
Health
o Health Planning and Development
o Medicaid
Vocational Rehabilitation
A complete list of specific services of-
fered within each program is included
for your information in Section 8, page
34, of this guide. It is not necessary for
you to contact a specific program office
or to know exactly what services your
child may need. Simply call or write the
District Administrator of the district
office nearest you and you will be re-
ferred to the appropriate program
office. Or, you may call the Develop-
mental Disabilities Planning Council at
(904) 4884180 to ask for assistance.
Other services and treatment pro-
grams are provided by not-for-profit
agencies, county public health units,
voluntary agencies, associations, local
school districts, and other state agen-
cies. The names and addresses of some
of these are included in the next few
pages.


Medical I Health Related Services

The associations and corporations
listed below offer a wide variety of pro-
grams and services, from advocacy as-
sistance to treatment programs. Some
are related to a specific disability, others
are more general. Most offer informa-
tion and referral services as part of their
programs and can direct you to other
agencies in your immediate location.
American Diabetes Association
Florida Affiliate, Inc.
3101 Maguire Boulevard, Suite 288
Post Office Box 19745
(305) 894-6664
American Heart Association, Inc.
Florida Affiliate Office
810 63rd Avenue North
Post Office Box 42150
St. Petersburg, Florida 33742
(813) 522-9477
American Red Cross
National Headquarters
17th and D Street, N.W.
Washington, D.C. 20006
(202) 737-8300


1.

i -,
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\i


/?
;


I


(Also, you may want to check your
local phone directory under Ameri-
can Red Cross.)
Arthritis Foundation
Florida Chapter
3205 Manatee Avenue West
Bradenton, Florida 33505
(800) 282-9487
Association for Retarded Citizens/
Florida
106 North Bronough, Suite M1-7
Tallahassee, Florida 32301
(904) 681-1931
Florida Association of Rehabilitation
Facilities
124 West Jefferson Street
Tallahassee, Florida 32301
(904) 224-3660
Florida Easter Seal Society
1010 Executive Center Drive,
Suite 101
Orlando, Florida 32803
(305) 896-7881
Florida Epilepsy Foundation
Post Office Box 6059C
Orlando, Florida 32853
(305) 422-1439
Florida Society for Autistic Citizens
1523 Julie Tonia Drive
West Palm Beach, Florida 33406
(305) 965-0409
Leukemia Society of America, Inc.
National Headquarters
800 2nd Avenue
New York, New York 10017
(212) 573-8484
March of Dimes Birth Defects
Foundation
Regional Office
12550 Biscayne Boulevard
North Miami, Florida 33181
(305) 895-2856
Mental Health Association of Florida
Post Office Box 11068
Tallahassee, Florida 32302-3068
(904) 877-4707
Muscular Dystrophy Association
1301 Seminole Boulevard, Suite 105
Largo, Florida 33540
(813) 585-5446
National Kidney Foundation of
Florida, Inc.


















1 Davis Boulevard, Suite 304
Tampa, Florida 33606
(813) 251-3627
National Multiple Sclerosis Society
Area Office
1522 Roswell Road, Suite C
Marietta, Georgia 30062
(404) 977-1002
Spina Bifida Coalition of Florida
996 Florida Town Road
Pace, Florida 32570
(904) 994-4001
United Cerebral Palsy of Florida, Inc.
Post Office Box 6476
Tallahassee, Florida 32301
(904) 878-2141
Upjohn Healthcare Services
Florida Region Administration
Post Office Box 2607
Winter Park, Florida 32790
(305) 629-0636

Education and Related Services

Many children with disabilities will
spend their educational lives in special
programs or classes. These programs fall
into five basic types.
1. State schools for the disabled for
those children who are blind, deaf,
have cerebral palsy or other severe
disabilities.
2. Segregated schools in which chil-
dren with all types of physical and
mental disabilities within a given
area in a community are bused to
and educated in a single segre-
gated facility.
3. Segregated classrooms are located
within a regular elementary or sec-
ondary school and made up of chil-
dren who have the same or similar
defects. For example, all children
with mental retardation will be
taught together in a regular school
but in a "special" class with a spe-
cialist teacher for the full school
day.
4. Integrated classrooms usually offer
a special class for a particular
problem in a regular school. The
children are in this class for only


part of the school day, joining
other students for some school
subjects. For example, a child who
has mental retardation may have
an academic: class in a special
classroom but join students with-
out disabilities for art, physical
education, shop subjects or music.
5. Itinerant programs will serve a
child who has acquired special
skills which :allow him or her to
handle a regular school program.
For examplO a child who is blind
will need toread, write and type in
Braille before being placed in a
regular class at the appropriate
grade level. An itinerant teacher,
trained in Braille, will visit the
child regularly to locate books in
Braille, to transcribe special mater-
ials, or to help with any problems
between the child and the regular
teacher. Otherwise, the child func-
tions in the same way as other stu-
dents. Children with specific learn-
ing disabilities and who have no
other obvious physical impair-
ments are often placed in pro-
grams of this type.
All of these programs are offered at
different levels, depending on the ability
of the individual student. Placement and
follow-up service es (which "follow" a
child to be sure a placement is right for
that child) are offered through the
public school system in Florida. For in-
formation on education and related ser-
vices you may wish to contact:
The Bureau of Education for
Exceptional Students
Florida Department of Education
Knott Building
Tallahassee, Florida 32301
(904) 488-1570
Florida Instructional Materials
Center for the Visually
Handicapped (FIMC)
5002 North Lois Avenue
Tampa, Florida 33614
(800) 282-9193
Captioned Videotape Project for the
Hearing Impaired


Florida School for the Deaf and
Blind
Post Office Box 1209
St. Augustine, Florida 32084
(904) 824-1654
FSDB Outreach Project
Child Study Center
Florida School for the Deaf and
Blind
Post Office Box 1209
St. Augustine, Florida 32084
(904) 824-1654
Division of Blind Services
Florida Department of Educati n
Knott Building
Tallahassee, Florida 32301
(800) 342-1828
Division of Blind Services Library for
the Blind and Physically
Handicapped
Post Office Box 2299
Daytona Beach, Florida 32015
(800) 342-5627
Manderfield Industrial Training
Laboratory
401 Platt Street
Daytona Beach, Florida 32014
(904) 252-4722

Family Support

Many of the agencies already listed in
the guide offer support services to ?am-
ilies with children who have disabili ies.
You also can find out about other ro-
grams and services by contacting the
agencies and organizations below.
Florida Council of Handicapped
Organizations
Post Office Box 2027
Satellite Beach, Florida 32937
(305) 777-2964
Head Start
Humanics Associates
Florida Office
255 Whooping Loop, Suite 255
Altamonte Springs, Florida 327 1
(305) 834-6538
Parents Anonymous of North Florida
Mt. Vernon Square, Suite M
1106 Thomasville Road
Tallahassee, Florida 32303
(904) 224-8481
or



















Parents Anonymous of Gulf Coast
Post Office Box 10087
Bradenton, Florida 34282
(813) 746-1904
National Hotline (800) 421-0353
Also, check the list of HRS services in
Section 8 to see if a specific HRS pro-
gram area may be helpful.

Economic Services

Earlier in this guide you found a
number of possible sources of financial
assistance to help with meeting your
child's medical treatment expenses.
Often the financial burden of a child
with disabilities creates a drain on other
areas of your budget as well. If you need
help in meeting your everyday expenses,
the Department of Health and Rehab-
ilitative Services (HRS) may be able to
help.
Some of the economic services ad-
ministered by the HRS District Office
which serves your county include:
Aid to Families with Dependent
Children
Food Stamps
Refugee Assistance Program
Low-Income Energy Assistance
Program and
Work Incentive Program
If you need assistance, contact your
HRS District Office (see page 29).

Community Assistance

For several years now both state and
federal efforts at serving persons with
disabilities and their families have been
directed at helping the disabled to re-
main in the community. To do this, both
the federal and state governments have
developed and continue to support a
number of community-oriented services.
These services help to make it possible
for a person with disabilities to live,
work and play in a community setting.

Transportation

Getting places is a problem often
brought up by parents and individuals


with disabilities. Sometimes, even when
services are available in a particular
area, they are of no use to a person with
disabilities because he or she is unable
to get to them.


i f
.. .


I Z- l 'I "



p -


In many communities, both public
and private organizations provide trans-
portation to schools, workshops, recrea-
tion and medical facilities. Sometimes
agencies arrange for buses or car pools
using specially designed vans. If public
transportation can be used, some agen-
cies may provide the fare. There may
even be a business in your area that will
provide transportation for your child for
a fee.
All public school systems must pro-
vide free transportation, to and from
school, to children with disabilities
which limit free physical movement.
Some Florida counties have special
transportation services. For information
call your local school system transporta-
tion department or your county social
services unit.

Recreation

Recreation includes many different
activities that will greatly benefit your
child: physical exercise, socializing,
playing, and generally having fun. Your
child is entitled to recreation programs
and the use of public recreational
facilities just as other children are.


Remember that these programs and
facilities are paid for by your taxes or
organizations that are bound by non-
discrimination laws and practices. You
may have to insist that your child be in-
cluded, but to do so is certainly your
right and is in the best interest of your
child.
Many groups already have special
programs to meet the needs of children
with disabilities. Others have programs
which group children with similar dis-
abilities together. For example, your
local YMCA may sponsor a summer day
camp for children who are deaf. Or your
area may have a Scout troop for those
children who are confined to wheel-
chairs. Check with your local groups or
clubs to see what is being done. If no
programs are under way, ask the group
to start one.
You may also want to contact your
county recreation department for in-
formation about any special programs
they may sponsor. Phone numbers may
be found in the telephone book under
your local government listing.
Some programs are just for those chil-
dren who have disabilities. The Florida
Special Olympics is one of these pro-
grams. Held throughout the year, the
Special Olympics gives children who are
mentally retarded a chance to compete
for awards in physical events such as
swimming, basketball, volleyball, track
and field events in county, district and
state games.
For information, contact the physical
education teachers in local special
education schools or write to:
State Special Olympics Headquarters
2639 N. Monroe Street, Suite 151-A
Tallahassee, FL 32303
(904) 385-8178
Summer camp programs, both day
and overnight, are designed for children
with disabilities and give children a
chance to explore a new environment -
and to get along without a parent. They
also allow the parents) a chance to have
a vacation.
Persons with disabilities may form
their own group or club for the purpose

















of socializing, eating out, dancing, going
on trips, etc. Some private companies
specialize in arranging trips for people
with disabilities.
All of these possibilities may require
some extra effort on your part. But play-
ing and being with friends is an impor-
tant part of being a child. Other parents
may be a good place to start your search
to find recreational activities suitable
for your child. Some of the sources al-
ready listed may be helpful, too.

Religious Training

Both children and adults with disabil-
ities will benefit from religious educa-
tion and participation in religious ser-
vices. People with disabilities have the
same feelings, values and spiritual needs
as anyone else. Growing spiritually is a
vital part of every person's development
and is no different in a person with a
disability.
Hopefully, your minister, priest or
rabbi is already familiar with meeting
the spiritual needs of people with dis-
abilities. If not, perhaps he or she will be
willing to learn more about disabling
conditions to be better able to serve
your child.
Some Associations for Retarded Citi-
zens have sponsored special programs
to involve both clergy and congregation
with people with disabilities. Your local
association may be able to provide in-
formation, guidelines and materials for
training members of your church to pro-
vide religious education and services to
your child.

Employment Options

Today, more than ever before, your
child can look forward to several op-
tions for both finding and keeping a job.
Depending on your child's specific dis-
ability, these options range from
sheltered workshops to modified or
adapted work stations in a regular em-
ployment situation. In fact, your child
may well be able to assume financial re-
sponsibility for part or all of his or her


care. Your child will have the opportun-
ity to lead a productive, full and satisfy-
ing life including having a paying job
- if special care and training begin at
an early age and are continued as long
as necessary.
Job specific training is available
through your public school system and
through vocational rehabilitation pro-
grams offered Jy the state or private
agencies.
Goodwill Industries of America is an
example of an agency that may both
train and employ people with disabil-
ities. For information on the agency
nearest you call or write:
Goodwill Industries of America
9200 Wisconsin Avenue
Washington, DC. 20014
(301) 530-6500
For assistance: in exploring employ-
ment options for your child contact your
local school system or the HRS District
Office serving your area.

Alternative Living Arrangements
Keeping your child at home or in a
home-like envirdi ment while he or she is
very young is thought by many parents
and professionals to be best for the
child. During this period when your child
is growing and learning so much, you
and your family can provide for most of
your child's needs. Many agencies also
provide services in the community to
help in your effort to keep your child at
home. These community services in-
clude day car, respite care, infant
stimulation and school programs.
Yet even with these services, some
parents cannot manage at home. You
may need some other alternative. You
might consider placing your child in
foster care or in an adoptive home.
Or you may consider placing your
child in a community-based residential
program or group home for children or
adults who arejjphysically or mentally
handicapped. Here young people can be
with friends their own age, maintain a
normal daily routine, and still get the
supervision and care they need.


Voluntary agencies may be able to
provide assistance in finding a group
home. So will your HRS District Off ce.
Finally, an institutional residential
program may be necessary. You may
want to consider both private and public
facilities. In general, very young
children are accepted into public f cil-
ities only if they have very serious
medical or behavioral problems. PriJate
facilities may be able to accept your
child, but they are usually very expen-
sive. The current trend in Florida land
other states is away from large institu-
tions. In fact, two of Florida's six institu-
tions already have been closed and
residents moved to smaller comm nity
facilities.
For information on state reside tial
facilities contact the HRS District Office
serving your area.

Legal Aid

Sometimes, even with the number of
state and federal laws, people vith
disabilities and their families need t9 de-
fend their rights to receive needed ser-
vices.
If you feel that your child is not being
treated equally, there are many steps
you can take. These steps may include
complaints to appropriate boards ap-
peals and grievance procedures. If you
still are not satisfied with your child's
treatment program, you may re uire
legal assistance.
In Florida if you need legal help you
can contact the Statewide H man
Rights Advocacy Committee (ad ress
and phone number below) for hel or
you can call or write one of the tate-
wide legal services listed below.
Statewide Legal Assistance or Refe ral
Services
Statewide Human Rights Advocacy
Committee
1317 Winewood Boulevard
Building 1, Room 310
Tallahassee, Florida 32301
(904) 488-4180
Florida Bar Lawyer Referral Service


















The Florida Bar
Tallahassee, Florida 32301-8226
(800) 342-8012
Florida Commission on Human
Relations
325 John Knox Road, Suite F-240
Tallahassee, Florida 32303
(800) 342-8170
Florida Justice Institute, Inc.
1401 Amerifirst
One S.E. 3rd Avenue
Miami, Florida 33131
(305) 358-2081
Florida Legal Services, Inc.
226 West Pensacola, Room 216-218
Tallahassee, Florida 32301
(904) 222-2151
Governor's Commission on Advocacy
for Persons with Developmental
Disabilities
Office of the Governor
The Capitol
Tallahassee, Florida 32301
(800) 342-0823
Southern Legal Counsel, Inc.
115 N.E. 7th Avenue
Gainesville, Florida 32601
(904) 377-8288
You may also want to get a copy of
The Pro Bono Directory from The Florida
Bar. The directory is a complete listing
of low cost and free legal assistance.
Send your request to:
Legal Assistance Project
Department of Public Interest
Programs
The Pro Bono Directory
The Florida Bar
Tallahassee, Florida 32301
(904) 222-5286


HRS District One (includes Escambia,
Okaloosa, Santa Rosa, Walton)
P.O. Box 12836
160 Governmental Center
Pensacola, Florida 32576
(904) 436-8200
HRS District Two (includes Bay, Cal-
houn, Franklin, Gadsden, Gulf, Holmes,
Jackson, Jefferson, Leon, Liberty, Mad-
ison, Taylor, Wakulla, Washington)
2639 N. Monroe, Suite 200-A
Tallahassee, Florida 32303
(904) 488-0567
HRS District Three (includes Alachua,
Bradford, Citrus, Columbia, Dixie, Gil-
christ, Hamilton, Hernando, Lafayette,
Lake, Levy, Marion, Putnam, Sumter,
Suwannee, Union)
1000 N.E. 16th Avenue, Building G
Gainesville, Florida 32601
(904) 395-1005
HRS District Four (includes Baker, Clay,
Duval, Flagler, Nassau, St. Johns,
Volusia)
5920 Arlington Expressway
P.O. Box 2417F
Jacksonville, Florida 32231
(904) 723-2050
HRS District Five (includes Pasco, Pin-
ellas)
2255 East Bay Drive
Clearwater, Florida 33516
(813) 536-5911


HRS District Six (includes Hardee, High-
lands, Hillsborough, Manatee, Polk)
400 W. Buffalo Avenue
Tampa, Florida 33614
(813) 272-2540
HRS District Seven (includes Brevard,
Orange, Osceola, Seminole)
400 W. Robinson, Suite 801
Orlando, Florida 32801
(305) 423-6208
HRS District Eight (includes Charlotte,
Collier, DeSoto, Glades, Hendry, Lee,
Sarasota)
12381 Cleveland Avenue S.
Ft. Myers, Florida 33907
(813) 936-2211
HRS District Nine(includes Indian River,
Martin, Okeechobee, Palm Beach, St.
Lucie)
111 Georgia Avenue
West Palm Beach, Florida 33401
(305) 837-5078
HRS District Ten (includes Broward)
201 W. Broward Boulevard
Ft. Lauderdale, Florida 33301
(305) 467-4298
HRS District Eleven (includes Dade,
Monroe)
401 N.W. 2nd Avenue
Miami, Florida 33128
(305) 377-5058


HRS District Offices



















"The real meaning of life is
to give oneself to a cause
that will outlast it."
William James






1







/ i f """"


















SECTION 7: FACING YOUR
FUTURES TOGETHER

Thanks to recent changes in laws and
the availability of more information,
society is now more willing to accept
children with disabilities and their
families for what they are: people with
hopes and needs much like everyone
else. And, as more and more emphasis is
placed on community services instead
of state schools or residential facilities,
the child or adult with disabilities is able
to function more successfully in a "nor-
mal" environment.
Throughout this guide you have read
about what kinds of events you can ex-
pect for your child and what services
you can find to help deal with your
child's special needs. It may be easy to
get so involved with day-to-day care that
you forget that there really is a "bigger
picture," a life for you and your child
apart as well as together. This section
will explore a few of these future areas
for you and your child.

Adolescence and Sexuality

Even if your child is very young, you
can see frequent signs that he or she is
growing and changing. You may notice
the increases in weight, or mobility, or
efforts to talk. You may observe your
child developing a unique personality.
Or you may be aware that clothes are
outgrown more quickly. At any rate,
your infant will one day be a child, who
will one day soon be a teenager
and young adult.
What can you expect as your child
matures? To begin with, a child with a
disability follows the same development
schedule as any other child, except that
it may take more time to advance from
one stage to another. During
adolescence, the developmental tasks
for all young people include strengthen-
ing a sense of identity, assuming the ap-
propriate male or female sexual role,
and achieving some measure of in-


dependence (de la Cruz and LaVeck,
1973).
Many people have great difficulty
with the behavior of their children dur-
ing adolescence, particularly with the
area of a child's developing sexuality.
When the child is mentally or physically
disabled, dealing with sexual feelings
and behavior may be even more dif-
ficult. It helps to remember that sexual-
ity is a part of all human development
and should be considered a normal part
of growth.
Sometimes a conflict develops be-
tween the rights and needs of parents
and the rights and needs of children. As
a parent you may be afraid of your
child's sexual interest or activity. Yet
your child has a right and need to ex-
press sexual feelings, in both physical
and emotional ways. You may want to
protect your child from harm or
criticism by the community. You may be
afraid of pregnancy, abuse or exploita-
tion of your child. Or you may believe
that your child may simply not be cap-
able of managing a relationship that
might possibly include sex.
Your child may share your fears, but
learning to cope with his or her own sex-
uality is an important step in the learn-
ing process. Obviously, there are real
issues to be faced as your child matures.
Yet there are no easy solutions.
Happily, there is much more openness
today about these issues. Some organi-
zations that work with children and
adults with disabilities offer workshops
and discussion sessions about sexuality,
birth control, rights and privacy, instruc-
tion about sex, marriage, having children
and parenting. Your child's educational
program also may cover some of these
topics.
Or, once again, as a parent you may
need to find new sources of information
that will help you and your child
through this time.

Adult Relationships

The problems of day-to-day living
which come with a disability are often


time-consuming, frustrating and com-
plex. In spite of these daily challenges,
there are many people with serious dis-
abilities who not only manage to survive
but do so as capable, proud and happy
individuals.
The world of a person with disabilities
is made up of people family, friends,
teachers, therapists, doctors and brief
encounters with strangers. Sometimes it
may seem tempting for both the person
with a disability and the parents) to
keep other people out, but no person,
disabled or not, can live alone. The inter-
action of people is important to your
child's eventual acceptance as a part of
your community.
Once your child reaches adulthood,
he or she may want to live apart from
you and other family members. There
are many safe ways for him or her to do
this and the rewards in self-esteem and
independence are usually large.
As an adult, the person with a disabil-
ity will continue to need people, includ-
ing a supportive family, as well as
friends. His or her adult relationships
may even include marriage and a family.
While it is true that limitations may
come from disabilities, it is not true that
a person with a disability must be a
limited person. This is particularly mean-
ingful when it comes to the relationship
of one adult to another.

Employment I Financial
Independence
An adult with a disability may have
some difficulty in finding or keeping a
job, but this is mostly due to the pre-
judice of employees and/or co-workers.
This, too, is changing as more in-
dividuals with disabilities enter the work
force and function successfully on their
jobs.
As mentioned earlier in this guide,
your son or daughter has the right to
work at a job of his or her choice accord-
ing to ability. There are many opportun-
ities for employment, many jobs that
can be performed easily by a person
with a disability. As a parent, you can

















look forward to a time when your child
will be at least partially self-supporting.

Building a Life For Yourself

One of the best things you can do for
your child is also the best thing to do for
yourself: get on with life. Certainly, you
will have to adapt to the demands and
needs of a child with disabilities. But
that doesn't mean that you must aban-
don your life as you knew it before you
were aware of your child's disability. By
making use of the many services
available to you, your child and other
family members, each person in your
family will be better able to lead his or
her own life.

Genetic Counseling

If you are thinking about having
another child, you may be worried about
your chances of having another child
with a disability. This is a natural con-
cern that may be removed through
"genetic" counseling. A genetic clinic
studies the genes in the body's cells.
Often a disability is passed from parent
to child by a certain gene or found in
misformed cells. A genetic study can
help parents understand the risks they
may take if they decide to have another
child. It is then up to the parents them-
selves whether to have another baby.
There are several genetic counseling
centers in Florida. Appointments usually
are made by referral from your personal
doctor. Or you can make the appoint-
ment yourself. Call the HRS District Of-
fice serving your county for the name of
the center nearest you.
Many parents find that the birth of
another child does much to ease the
pain and dismay felt when their
"special" child was born.

Potential Growth

Not everyone faced with the difficult
task of raising a child with a disability is
able to manage it. But those parents
who continue to work at providing care


and affection to their child may receive
many rewards for their effort. Perhaps it
is not surprising that these rewards are in
personal growth and development.




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Many parents report the satisfaction
they feel when their child succeeds at
even a minor task. They tell of their
renewed appreciation of the little things
in life. Or are reminded of how impor-
tant their own relationships are. Many
parents build warm friendships with
other parents of children with disabil-
ities. Many feel that their lives were
drastically changed for the better -
by having a child who helped them learn
patience, tolerance, acceptance, as well
as joy in day-to-day accomplishments.
Pleasure in your child's growth and pride
in your personal ability to meet the
sometimes painful demands of your
child's development or health are two
more of the rewards you may discover.
The list might well be endless but a
final point might be the joy and satisfac-
tion of those parents who, through love
and hard work, help their children to
adapt and adjust to live happy, fulfilled
lives in a difficult world.

Your Contribution to Society

Mr. Don Boyd, the parent of a child
who has mental retardation, has de-
scribed three stages of thinking through
which every parent goes: (1) Why did this
happen to me? (the stage of self-pity and
selfishness); (2) What can I do for my
own child and my family? (the stage of
facing one's own problem); and (3) What


can I do for others? (the stage of wor ing
to help others) (French and Scott, 1967).
Most parents arrive at this third or
"community consciousness" stage when
they realize that they are concerned not
only about their own child but Iso
about others who are similarly disabled.
These parents believe that their
child's life could be more usefu if,
because of his or her disability, one
small step could be taken to meet the
overall problem. This would be the
lasting good that comes from and be-
cause of their own efforts to help heir
child.
Many of the books written abou dis-
abilities are authored by a parent of a
child who is disabled. Much of the legis-
lation which protects the rights of the
disabled was written and lobbied fcr by
their parents. Special programs ar6 de-
veloped and run by these parents! Or-
ganizations are formed, agencies sup-
ported, and research is funded by par-
ents of children with disabilities. And
there is more, much more.
You, too, may have an important con-
tribution to make. Perhaps that is! why
you have been entrusted with a child
who needs so much. Through this guide
you have found many ways to get
started on the path to well-being for
your child. Remember that all journeys
begin with a single step. We hop that
this guide will encourage you to take
that first step toward your child's f ture
as well as your own.























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as limitations qualities that are
actually the other person's
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You Learn By Living


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SECTION 8: APPENDICES

A. Department of Health and Rehabilitative
Services I Program Areas


Aging and Adult Services
Information & Referral
Abuse Prevention Services
Senior Activity Centers
Meals Programs
Home Health Care and Other in-Home Services
Placement Services
Community Care for the Elderly
Displaced Homemaker Services
Transportation
Adult Day Care
Counseling and Other Support Services

Alcohol, Drug Abuse and Mental Health
Emergency Counseling
Inpatient
Hospitals Long- and Short-Term Care
Outpatient
Counseling
Partial Hospitalization
Day / Night Care
Consultation and Education
Screening Assistance to Courts
Halfway Houses
Follow-up Care for Discharged Mental Patients
Specialized Services for Children and Elderly
Alcohol Abuse
Detoxification
Evaluation
Residential Services
Day / Night Care and Treatment
Outpatient Services
Treatment
Counseling
Rehabilitation
Halfway Houses
Court and Law Enforcement Liaison Services
Employee Assistance Programs
Community Consultation, Education and Prevention Programs

Children's Medical Services
Clinics
Pediatric
Specialty
Referral Centers
Regional Centers
Renal
Diabetes
Genetics
Perinatal
Spinal Cord Injury
Special Statewide Programs
Infant Screening
Child Abuse
Rheumatic Fever
Children, Youth and Families
Dependency/ Delinquency Intake


Prevention and Diversion Services
Specialized Family Services
Protective Services for Children
Crisis Homes and Emergency Shelter Care
Child Day Care Services
Detention (secure and non-secure)
Commitment Programs for Delinquent Youth
Residential Centers and Programs
Non-residential Programs
Community Control and Furlough
Mental Health Services
Adoption and Related Services
Foster Care

Developmental Services
Evaluation of persons with -
Retardation
Epilepsy
Cerebral Palsy
Autism
Other Developmental Disabilities
Family Counseling and Assistance
Home Care/ Equipment Assistance
Group and Foster Homes
Community Facilities
Intermediate Care Facilities for Mentally Retarded
Cluster Facilities
Residential Care Sunland Centers
Training and Education Programs
Vocational Training
Medical Care
Transportation
Counseling
Day Care
Economic Services
Aid to Families with Dependent Children
Food Stamps
Refugee Assistance Program
Low-Income Energy Assistance Program
Disaster Relief
Supported Work Assistance Program and Work Incentive Program

Health
Personal Health
Non-Communicable Disease Services
Cardiovascular Disease Services
Hypertension Services
Diabetes Services
Cancer Services
Anticonvulsant Medication Services
Nursing Care at Home Services
Surveillance/ Investigations
Socio-Behavioral Services
Health-Risk Reduction Services
Nutrition Health Services
Women/ Infant /Children Supplemental Food Program
Family Planning Services
Maternal Health Services
MIC Projects: Maternal Lay Midwives
Infrant / Child / Adolescent Health Services
Children and Youth Project
MIC Project: Infants
EPSDT Services
School Health Services





















Special Surveillance
Adult Health Services
Dental Health Services
General Personal Health Services
Communicable Disease
Control Services
Immunization
Venereal Disease Services
Surveillance/ Investigations
General Public Health
Vital Statistics Services
Vital Records Disposition, Certification and Compliance Services
Environmental Health
Consumer Safety
Occupational Health Services
Consumer Product Safety
Emergency Medical Services
Food Hygiene Services
Housing Public Facilities and Conveyance Services
Group Care Facilities Services
Housing and Public Building Safety and Sanitation Services
Trailer Park and Camps Services
Water and Waste Services
Private Water System Services
Public Drinking Water Services
Bottled Water Services
Swimming Pool and Bathing Places Services
Individual Sewage Disposal Services
Public Sewage Services
Solid Waste Disposal Services
Environmental Surveillance/ Control Services
Sanitary Nuisance Services
Rabies Surveillance / Control Services
Arbovirus Surveillance Services
Rodent Control Services
Arthropod Control Services
Water Pollution Services
Air Pollution Services
Radiological Health Services
Toxic Substance Hazardous Materials Services
General Environmental Health Services

Health Planning and Development
Comprehensive Health Planning
Statewide Health Planning Coordination
Planning, Research and Development
Community Medical Facilities
Architectural and Engineering
Developmental and Monitoring
Regulatory Review and Planning
Cooperative Health Statistics

Medicaid
Nursing Home Care
Pharmaceutical Support
Medical Care
Inpatient
Outpatient

Vocational Rehabilitation
Medical Evaluation
Vocational Adjustment
Treatment
Hospitalization


Counseling and Guidance
Artificial Limbs and Appliances
Equipment for Jobs
Financial Assistance while in Rehabilitation Program
Job Placement
Transportation
Post Employment Services


B. Reference List

Biklen, Douglas. Let Our Children Go: An Organizing Manual for Advo-
cates and Parents. Human Policy Press, Syracuse, 1974..

Buscaglia, Leo. The Disabled and Their Parents: A Counseling Challenge.
Charles B. Slack, Inc., New Jersey, 1975.

de la Cruz, Felix F., and LaVeck, Gerald. Human Sexuality and the Mentally
Retarded. Brunner Mazel, Inc., New York, 1973.

French, Edward L., and Scott, J. Clifford. How You Can Help Your Retarded
Child. J. P. Lippencott Company, Philadelphia and New York, 1967.

Kushner, Harold S. When Bad Things Happen to Good People. Avon Books,
February, 1973.

C. Florida Statutes Relating to the Rights of Per-
sons with Disabilities

This overview of relevant Florida and federal statutes is designed to pro-
vide quick information about the legislatively expressed interest of our
government in its citizens with handicapping conditions.

ACCESSIBILITY

Florida Statute 193.623
Provides that any renovation to existing buildings in order to provide ac-
cess to persons with handicaps shall not increase the property value of that
building for ad valorem tax purposes.

Florida Statute 255.21
Provides for all buildings to be used by the general public to be made ac-
cessible to persons with handicaps. Prescribes standards for building and
remodeling such facilities.

Florida Statute 255.211
Provides that all state-owned buildings be accessible (see 255.21) and
display internationally recognized symbol for wheelchair users.

Florida Statute 163.3177(f)4
Provides sites for specialized housing, including group homes, in a com-
prehensive land use act.

TRANSPORTATION

Florida Statute 234.211
Provides for the use of public school buses to be used by non-profit agen-
cies for the transportation of specified groups.

Florida Statute 236.083(1)
Mandates the transportation of students with physical handicaps to and
from school, irrespective of where they live.






















Florida Statute 316.1955 [
Provides for special parking places for certain disabled persons to be pro-
vided by governmental agencies.

Florida Statute 316.1956
Provides for parking spaces designated for disabled persons by nongovern-
mental agencies.

Florida Statute 316.1964
Exempts certain persons with handicaps from parking fees

Florida Statute 320.0842
Provides free motor vehicle plates to be issued to veterans confined to
wheelchairs.

Florida Statute 320.0843
Allows for distribution of motor vehicle license plates stamped with the in-
ternational wheelchair user symbol.

Florida Statute 335.075
Provides minimum standards for design and construction of streets, side-
walks, curb ramps, etc.

Florida Statute 399.035
Provides for accessibility to passenger elevators to be made for persons'
with physical handicaps, and for the design of such elevators.

Florida Statute 553.45 553.49
Defines "physically handicapped person" and provides for accessibility of
entrances and exits to certain types of public buildings; defines types of ac-
cessibility (ramps, paths, restrooms, etc.) and lists modifications and
waivers to these requirements.

ELECTIONS

Florida Statute 97.061
Provides for special voter registration for persons with disabilities I

Florida Statute 97.063(1)(e)(2)(3)(4)(5)(6)(7)
Allows persons with physical disabilities to vote by absentee ballot and
gives provisions for such participation.

Florida Statute 101.051
Provides for special assistance in voting to certain persons with physical
disabilities and specifies procedures for such.

Florida Statute 101.715
Provides that all polling and election sites be made accessible to persons
with handicaps.

Florida Statute 320.0848
Provides for special parking permits for persons with handicaps.

Florida Statute 413.07
Requires traffic to stop for individuals using a white cane or guide dog.

Florida Statute 427.011 .018
Establishes the Florida Coordinating Council on the Transportation Disad-
vantaged and provides funds to purchase services.

EDUCATION
Florida Statute 228.2001
Prohibits discrimination against students and employees in the state system
of public education; provides for equality of access to programs and

36


courses; requires the development and implementation of programs to
meet special needs and to encourage participation of handicapped in-
dividuals.
Florida Statute 229.832
Directs the Department of Education to establish regional diagnostic le rn-
ing resource centers for exceptional students.

Florida Statute 229.834
Directs regional learning resource centers to provide services to th
public and non-public school students.

Florida Statute 229.8361
Establishes the Florida Council for the Hearing Impaired.

Florida Statute 230.23
Directs local school boards to provide appropriate special instruction for
exceptional students, for exceptional student placement programs, an for
parent notification of such placements.

Florida Statute 230.2317
Establishes a multi-agency network to provide education, treatment, and
residential services to emotionally disturbed students.

Florida Statute 230.33
Directs local district superintendents to recommend plans for special du-
cation classes, instructors, equipment, and facilities for exceptional
students.

Florida Statute 232.13
Directs HRS to report to all district superintendents the names and p rtin-
ent information for all exceptional children in each district who re luire
special services or programs.

Florida Statute 233.056
Provides coordinating unit and instructional materials for hearing and
visually impaired students in Florida public schools.

Florida Statute 242.331
Establishes the Florida School for the Deaf and the Blind

Florida Statute 959.25
Establishes the Exceptional Child Education Program for youthful ofend-
ers and wards of HRS and mandates meaningful compensatory educa-
tional programs for them.

INSURANCE
Florida Statute 440.49
Establishes a fund to reimburse insurers of employers who hire the andi-
capped if a handicapped employee sustains an on-the-job injury which is
made worse by the existence of a handicap.

Florida Statute 626.9541(1)(g)1,2
Prohibits discrimination between individuals of the same actuarial c ass in
t h .... 4 for lif- incurinrce nnuities accident disability and health


a es c argeIII II, llllUll .
policies.

Florida Statute 626.95419(1)(o)5
Prohibits additional charges for and policy cancellation of automo
surance to those persons with handicaps who have the ability to d


)ile in-
ive.


Florida Statute 626.9705
Prohibits insurers from discriminating against those with severe disa ilities.
Requires that insurers sell life and / or disability insurance, regardless of
severe disability.






















Florida Statute 627.644
Provides that insurance companies cannot unfairly refuse health insurance
or charge unfair premiums to individuals with handicaps.

Florida Statute 627.6486
Provides for the State Comprehensive Health Association to insure all resi-
dents, regardless of pre-existing health conditions.

Florida Statute 627.6576
Prohibits discrimination against handicapped individuals joining group
policies.


EMPLOYMENT

Florida Statute 23.161 23.167
The Human Rights Act forbids discrimination because of any handicap-
ping condition, establishes the Human Relations Commission and defines
membership, powers, and functions; provides that discrimination in em-
ployment is illegal.

Florida Statute 110.105
Provides that the employment policy of the State of Florida shall be non-
discriminatory.

Florida Statute 110.215
Modifies requirements for examinations conducted by state agencies for
visually and hearing impaired citizens.

Florida Statute 205.162
Allows exemptions from business licensing requirements for certain per-
sons with disabilities.

Florida Statute 205.171
Allows exemptions for business and occupational licensing requirements
for certain disabled veterans.

Florida Statute 212.08(7)(h)(2)
Exempts sale or rental of guide dogs and food for such dogs from sales tax
in certain circumstances.

Florida Statute 240.335
Provides for non-discrimination on the basis of handicapping condition for
the granting of salaries to employees of Florida community colleges.

Florida Statute 295.07
Provides for preference to be given to disabled veterans for employment.

Florida Statute 760.10
Lists all unlawful employment practices, including provisions for hiring and
dismissal, compensation, terms and privileges of employment.


ACCOMMODATIONS

Florida Statute 196.101; 196.031; 196.202; 295.16
Allows for homestead exemptions for persons who are totally disabled at
certain rates established in the statute; exempts certain property of persons
with handicaps from taxation; exempts disabled veterans from certain fees
relating to their homes.

Florida Statute 286.26
Provides that all public meetings be made accessible to persons with handi-
caps.


Florida Statute 413.08
Provides for equal accommodations to all persons with physical handicaps
in housing and employment.

Florida Statute 413.08(4)(a)(b)(c)
Provides the right to equal housing accommodations to persons with visual
or hearing impairments. Also provides that these persons have the right to
house guide dogs within their property at no extra expense.

Florida Statute 413.08(1)(2)
Provides equal privileges and accessibility to any visually or hearing im-
paired persons to be accompanied by a guide dog on all common carriers,
places of public accommodations, or public facilities.

GENERAL LEGISLATION

Florida Statute 393
The Florida Retardation Prevention and Community Services Act in-
cludes prevention plans, community care facilities, legal definitions; estab-
lishes the Group Living Home Trust Fund.

Florida Statute 394
The Florida Mental Health Act provides definitions and objectives for
HRS Mental Health Services; establishes patient rights, facilities, and
residential care for disturbed children.

Florida Statute 413.011 .08
Blind Services Program establishes the Division of Blind Services, pro-
vides for records, services, products, and purchases of the division; pro-
vides legislative intent, traffic exemptions, equal accommodations, guide
dogs, and identification cards for persons with visual handicaps.

Florida Statute 413.20 .504
Establishes the Vocational Rehabilitation Program and provides regula-
tions, administration, benefits and duties and responsibilities of the De-
partment of Health and Rehabilitative Services.

Florida Statute 413.601 -.605
Establishes general rehabilitation programs, programs for persons with
spinal cord injuries, nursing home programs, and the Council on Spinal
Cord Injuries.

IDENTIFICATION

Florida Statute 322.051
Provides that identification cards be issued to persons who are not licensed
to drive a vehicle.

Florida Statute 413.091
Provides for identification cards to be issued to persons with visual impair-
ments.

D. RELEVANT FEDERAL STATUTES

TITLE XVI of the Social Security Act of 1935. Provides supplemental
financial assistance for persons who are elderly or handicapped.

TITLE XIX of the Social Secuity Act of 1935. Establishes Medicaid assis-
tance for the care and treatment of persons with low income and serious
medical problems.

TITLE XX of the Social Act of 1935. Provides federal funding of such ser-
vices as day care, special living arrangements, employment programs,
counseling, information and referral when no other forms of funding are
appropriate.




















PL 95-602 Federal Disabilities Services and Facilities Construction Act.
Provides funding for services, facilities construction, protection, and ad-
vocacy for persons with severe and chronic disabilities whose needs cannot
be met by generic community services.

PL 94-142 Federal Education for All Handicapped Children Act. Provides
funds for states to obtain or provide a free, appropriate education for all
handicapped children.

SECTION 504 Federal Vocational Rehabilitation Act (PL-103). Prohibits
discrimination against disabled persons in programs receiving federal
assistance, including education, housing, employment, and access to pub-
lic services.

SECTION 202 U.S. Housing Act of 1959. Provides direct loans for the
construction or renovation of housing facilities to serve elderly and dis-
abled citizens.

SECTION 8 U.S. Housing Act of 1959. Provides rent subsidies for low in-
come, handicapped and elderly persons.

PL 98-527 The Developmental Disability Act of 1984 which extends
language under PL 95-602.


E. RESOURCES

AUTISM
National Society for Autistic Children
1234 Massachusetts Avenue, N.W., Suite 1017
Washington, D.C. 20005

CEREBRAL PALSY
National Easter Seal Society
2023 W. Ogden Avenue
Chicago, Illinois 60612

United Cerebral Palsy Association
66 East 34th Street
New York, New York 10016

EPILEPSY
Epilepsy Foundation of America
4351 Garden City Drive
Landover, Maryland 20785

GENERAL
The Florida Developmental Disabilities Planning Council
1317 Winewood Boulevard, Building 1, Suite 309
Tallahassee, Florida 32301
(904) 488-4180

National Easter Seal Society for Crippled Children and Adults
2023 W. Ogden Avenue
Chicago, Illinois 60612

March of Dimes Birth Defects Foundation
1275 Mamaroneck Avenue
White Plains, New York 10605

The Association for the Severely Handicapped
7010 Roosevelt Way, N.E.
Seattle, Washington 98115


Council for Exceptional Children
1920 Association Drive
Reston, Virginia 22091

American Coalition of Citizens with Disabilities
1200 15th Street N.W.
Washington, D.C. 20005

National Center for Law and the Handicapped, Inc.
1235 North Eddy Street
South Bend, Indiana 46617

LEARNING DISABILITIES
Association for Children with Learning Disabilities
4156 Library Road
Pittsburgh, Pennsylvania 15234

Orton Society
8415 Bellona Lane
Towson, Maryland 21204

MENTAL RETARDATION
National Association for Retarded Citizens
2501 Avenue J
Post Office Box 6109
Arlington, Texas 76011
(817) 261-4961

American Association on Mental Deficiency
5101 Wisconsin Avenue, N.W.
Washington, D.C. 20016

President's Committee on Mental Retardation
Department of Health and Human Services
Office of Human Development Services
Washington, D.C. 20201

Down Syndrome Congress
1640 Roosevelt Road
Chicago, Illinois 60608

PHYSICAL IMPAIRMENTS
American Foundation for the Blind
15 West 16th Street
New York, New York 10011

National Association for the Visually Handicapped
305 East 24th Street
New York, New York 10010

National Association for Parents of the Visually Impaired
2011 Hardy Circle
Austin, Texas 78757

American Speech and Hearing Association
10801 Rockville Pike
Rockville, Maryland 20852

Helen Keller National Center for Deaf-Blind Youth and Adults
111 Middle Neck Road
Sand Point, New York 11050

Gallaudet College for the Deaf
Kendall Green
Washington, D.C. 20002






















National Association of the Deaf
814 Thayer Avenue
Silver Spring, Maryland 20910

American Cleft Palate Education Association
331 Salk Hall
University of Pittsburgh
Pittsburgh, Pennsylvania 15261

SPINA BIFIDA
Spina Bifida Association of America
343 South Dearborn Street, Suite 317
Chicago, Illinois 60604
(800) 621-3141

For a current list of addresses of organizations that deal with your child's
particular disability, write to:
National Institute of Neurological and Communicative Disorders
and Stroke (NINCOS)
Office of Scientific and Health Reports
Building 31, Room 8A-06
Bethesda, Maryland 20205
























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HRS/PI 160-20, 7/85 FIRST EDITION

This project was funded in part by the Department of Health and Human Services, Office of Developmental Disa ilities,
and the Florida Developmental Disabilities Planning Council. This publication was promulgated at a cost of $8,745 95, or
$4.37 per copy, to inform the public about services available to people with Developmental Disabilities, in accordance
with Chapter 393, F.S. HRS complies with the nondiscrimination provisions of Title VI, Section 504, and Title IX, and all re-
quirements pursuant thereto.




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