Supported families

              Centterr fforr Learrniing and Leaderrsshiip//UCEDD
Okllahoma Famiilly Supporrtt Parrttnerrsshiip Prrojjectt
Judy O. Berry Ed.D.
Supported Families
Recommended citation for this publication:
Berry, J. (2003). Supported Families. Oklahoma City: Center
for Learning and Leadership (Oklahoma's Federally desig-nated
University Center for Excellence in Developmental
Disabilities Education, Research and Service), College of
Medicine, University of Oklahoma Health Sciences Center.
The stories in this booklet were printed with the permission
of the family members under IRB #09697.
This publication was funded by a grant from the U.S. Admini-stration
on Developmental Disabilities (Grant #90DF0032)
with matching contributions from the Oklahoma Depart-ment
of Human Services, Developmental Disabilities Services
Division, and the University of Oklahoma Health Sciences
Center. 1000 copies of this publication have been printed
and distributed at no cost to the taxpayers of Oklahoma.
Copyright 2003. Center for Learning and Leadership. Okla-homa’s
University Center for Excellence in Developmental
Disabilities Education, Research and Service. College of
Medicine, University of Oklahoma Health Sciences Center.
The University of Oklahoma is an equal opportunity
institution.
Center for Learning and Leadership/UCEDD
24 Supported Families Center for Learning and Leadership/UCEDD
i
Judy O. Berry Ed.D.
Supported Families ii Center for Learning and Leadership/UCEDD
23
Endorsement
I/we endorse the Oklahoma Individual and Family Support Princi-ples.
I/we agree with the principles and want to share information
about the principles with others. Please count on me/us to:
(Check all that apply):
___Distribute copies of the principles to others
___Use the principles in training/education of others
___Use the principles to describe how I/we want services delivered
Signature Date
Name
Agency/Organization/University (If applicable)
Mailing Address
City
State and ZIP Code
E-mail Address
Telephone:
I am: __Individual with a Disability __Family Member
22 Supported Families
To order copies of
Supported Families
or the
Oklahoma Individual and Family Support Principles
contact;
Center for Learning and Leadership
A University Center for Excellence in
Developmental Disabilities
University of Oklahoma Health Sciences Center
College of Medicine
P.O. Box 26901 ROB 342
Oklahoma City, OK 73190-3048
Phone: (405) 271-4500
Fax: (405) 271-1459
Toll Free: (800) 627-6827
E-mail: vyonda-martin@ouhsc.edu
or ronda-madole@ouhsc.edu
Web site: http://w3.ouhsc.edu/thecenter/
Endorse the Oklahoma Individual
and Family Support Principles
The Center for Learning and Leadership invites you to endorse
the Oklahoma Individual and Family Support Principles. If you agree
with the principles and want to join others in distributing or sharing
them, complete and sign the form on the next page. If you are
signing on behalf of an agency or organization, please provide a letter
of endorsement on letterhead. Send or fax the form and/or letter to
the attention of Vyonda G. Martin at the above address. We will
add yours to the list of endorsements and send you copies of the
principles to share with other individuals, families, faculty and
representatives of agencies and organizations.
Center for Learning and Leadership/UCEDD
edication
A few days after I completed work on this booklet, my
son, Doug, became seriously ill; a few days after that he
died. I want to dedicate Supported Families to Doug in the
hope that his bravery, his sweet personality and his zest
for life will inspire people with disabilities, their families
and their communities to strive for success and to help
each other along the way. — Judy O. Berry
Doug Berry shows off his medal
from Special Olympics.
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Supported Families
Thanks to:
The families who were interviewed for this publication for
the time and thought that went into telling their stories.
The 2002-2003 Leadership Interns from the Oklahoma
LEND (Leadership Education in Neurodevelopmental Disabili-ties)
Program who assisted with the interviews.
The members of the Oklahoma Family Support Partner-ship
Council who developed the Oklahoma Individual and
Family Support Principles that are the heart of this publication.
Ronda Madole Weaver for creating the design of this
book.
cknowledgements
iv
Judy O. Berry, Ed.D., is a professor of psychology at the
University of Tulsa specializing in developmental and family
psychology. She is the author (with Michael Hardman) of Life-span
Perspectives on the Family and Disability. Her research cen-ters
on parental stress in dual-earner families and in families
that include a child with disabilities or chronic illness, and she
developed (with Warren Jones) the Parental Stress Scale. She
has received a number of advocacy awards for her work in the
field of disabilities, including the Tarbel Achievement Award
and the Medicine Wheel Award.
bout the author
Center for Learning and Leadership/UCEDD
Those first tears opened the floodgates of my piled-up
stress, and soon I was sobbing. Again, Doug joined right in.
The officer was astonished and very concerned. He said,
"I don't think you are in a condition to continue driving.
Where are you going?” I answered, "I'm taking my son to a
therapy program for deaf-blind and multihandicapped babies
at the medical center," and continued to sob. He said, "Can
I call someone? Where is your husband?" I answered, "He is
in the hospital." He stood there stunned for a moment and
then ripped the ticket into little pieces.
I told him that he didn't need to do that, that I was sure
I deserved the ticket and was, in fact, grateful to have a long
over-due cry.
He stayed with us until Doug and I both calmed down.
Then I carefully drove on to the medical center for Doug's
therapy program.
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Supported Families
ecognize the importance of the community
I am concluding with a story from my personal past that
demonstrates, from a broad perspective, both the stress that
often punctuates the lives of families that include a child with a
disability and the kindness of strangers.
I lived in Oklahoma City and was driving with Doug (age
2) in the car seat beside me on one of the highways that cut
across and connect various parts of the city. I was startled
to hear a loud voice coming from somewhere outside the
car, command: PULL OVER TO THE SIDE AND
STOP!
I drove on, convinced that whatever that voice was, it
had nothing to do with me. Two more repetitions of PULL
OVER TO THE SIDE AND STOP!, and the sighting of
a highway patrol car in my rear view mirror made me
realize that the message was, indeed, for me. I pulled over
and stopped and fumbled for my driver's license. The officer
appeared at my window and asked me if I knew what I had
done wrong. I said I had no idea. I think he told me, but to
this day, I don't know what it was. I knew, however, that I
was distracted and that he was probably right and I was
probably wrong. I apologized and promised to never do it
again. He said, “Fine,” but he had to give me a ticket. As he
started to write the ticket I started to cry. Doug, sensitive
to my moods, joined in.
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Center for Learning and Leadership/UCEDD
Dedication iii
Acknowledgements iv
Introduction 2
Oklahoma Individual and Family Support Principles 4
Honor Their Expertise 6
Respect and Accept Their Values 7
Support Individual and Family Relationships 9
Focus on the Entire Family 10
Promote Flexible Service and Funding 12
Affirm Lifespan Planning and Self-determination 14
Assure Partnerships That Actively Include Individuals and Families 16
Practice Open Communication 18
Recognize the Importance of the Community 20
able of contents
1
Supported Families
ntroduction
Three decades ago, a small group of parents in Pennsylvania
joined a group of professional advocates to ask the state to allow
their children with disabilities to go to school. It may seem
incredible now that it took the court system to grant this very
basic right to some of America's children. In fact, these were the
children who needed most of all to be in school, both for an
education and to be a part of the community. Other court cases
and federal legislation followed and today it is a given that all
children are a part of our schools.
Being a part of the community is more complicated. The
community is where we live and the people who surround us. For
children, it is, of course, their parents, siblings, babysitters,
teachers and friends. Community also means children's doctors,
little league coaches, camp counselor and people who sell shoes
and cut hair. Legislation that brought school services for children
with disabilities also brought training for teachers and others
providing direct services for children, but gaps remain. Some
service providers are skilled with children and the families in
which they reside; some are less so. Some people in the
community, not likely to have received training, seem intuitively
attuned to the needs and feelings of children and families; some do
not. And yet, families with children with disabilities need; in fact
crave, the embrace of the whole community for their sons and
daughters. It is our last frontier. When I use the word “our”, I am
speaking for all Oklahoma families that include a member with a
disability. My family includes my son, Doug, now a young adult
who was born with multiple developmental disabilities. I also am a
2 Center for Learning and Leadership/UCEDD
She was right. This little district used what it had to
provide what Jenny needed. It wasn't elaborate or expensive.
It was an honest commitment to providing all it’s students a
good education. Jenny was one of it’s students.
More than that, she was a student who had an
opportunity to participate in extracurricular activities for the
first time in her life. Jenny's teacher aide had an obligation to
be at cheerleading practice after school, but it conflicted with
her supervision of Jenny waiting to get on the bus. She asked
if Jenny could accompany her to cheerleading practice. The
cheerleading team took it from there. They wanted Jenny to
be a part of the team and wrote a cheer just for her. Jenny
always threw everything that was placed in her hands, usually
within seconds. Jenny's team members saw that as an asset
instead of a deficit. They wrote a cheer that passed the
pompoms to Jenny just seconds before it was time to throw
them. Jenny cooperated, and the cheer was a success. We
spent lots of money on special red and white sneakers,
sweaters, skirts and tights – an opportunity that we would
never have had anywhere else and an opportunity that Jenny
would never have had anywhere else.
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Supported Families
ractice open communication
This school system had doubts about its ability to meet the needs
of this new student, but its administrators successfully
communicated how hard they would try and how much they
wanted it to work. And it did!
As Jenny entered middle school in a new, much smaller
community, we were anxious about the change to mid-school
with new teachers, classes and friends. Our anxiety
was compounded by Jenny's need for significant special
education support across all areas of learning and life. As it
turned out, the school’s staff was more anxious than we
were because they had heard of us. My wife was a health
systems administrator in services for children with
disabilities and I was a state-level administrator for the early
intervention program.
We also were active in disability advocacy groups. We
must have looked like formidable parents to that little
school district. The special education administrator, in an
apologetic tone, told us that they had never had any
experience with a student having the extensive needs that
Jenny appeared to have. However, she said that everyone
would work on figuring out the best way for Jenny to be a
part of their school and that they had never had a student
that they couldn't serve.
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Center for Learning and Leadership/UCEDD
psychology professor specializing in developmental and family
psychology. In this role, I have worked for several years as a
consultant to an amazing group of professionals at the Center for
Learning and Leadership, a part of the University of Oklahoma
Health Sciences Center. One project of the Center is the
Oklahoma Family Support Partnership.
The Oklahoma Family Support Partnership grew out of the
need to enhance the system of family support for families of
children, youth and adults with disabilities by making positive
changes in both policy and practice related to family support. An
integral part of the project has been the development of the
Oklahoma Individual and Family Support Principles and
endorsement of these principles by programs and agencies
serving families. In addition, this project provides training and
technical assistance to service providers and families in the use of
these principles as the scaffolding on which services are built.
The purpose of this booklet is to present the Oklahoma
Individual and Family Support Principles, illustrated by success
stories. As a bonus, the reader will get to meet several
Oklahomans who are doing a good job in their everyday lives.
The people featured here responded to the needs that they
encountered, not because Oklahomans with disabilities have legal
rights, but because it was the right thing to do.
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Supported Families
… are guiding truths that shape the way individuals, families
and service providers interact.
… establish common ground upon which individuals, families,
advocates and service providers operate.
… form the basis for program policy and practice.
WHEN WE ENGAGE WIITH IINDIIVIIDUALS AND FAMIILIIES
WE WIILL …
HONOR THEIR EXPERTISE and right to make choices that they
know to be in their own best interest.
RESPECT AND ACCEPT THEIR VALUES that are based in per-sonal
preferences, cultural beliefs and life-ways.
SUPPORT INDIVIDUAL AND FAMILY RELATIONSHIPS that are
safe, stable and long lasting.
FOCUS ON THE ENTIRE FAMILY as it is defined by the family.
PROMOTE FLEXIBLE SERVICE AND FUNDING supporting indi-vidual
and family control over who, what, when, where and how
supports are provided.
4
Okllahoma IIndiiviiduall and
Center for Learning and Leadership/UCEDD
After the first hour, I put away my pride and began to
actually listen. I was like these women and they were like me.
They were scared, concerned, caring and often funny. Their
children may have problems different from my child, but the
process, the parent-child dynamic, the advocating for the best
interest of the child, all that was the same. The more I listened,
the more I realized their children shared common symptoms
with my child. I wasn't alone in the world where a child never
sleeps or cannot stand to have certain foods and textures
touch him. Instead of trying to declare myself as different, I
looked for things we had in common and I asked questions and
searched for answers.
I was so lucky to have a room full of wise and experienced
mothers to help me. If one didn't know the answer, surely the
next mother would. I don’t believe I have ever gone to a
meeting and left without learning something that could help my
child. It may be advice on how to help with education. It may
be a solution to our sleep issues. It may be new and different
drugs and treatments others have success with. If nothing else,
it might be a hug or a simple word of support.
Soon, other new members were joining the group. I could
see the anxiety and concern on their faces and I remembered
how I felt. Now I am one of those women who are sought out
for advice and wisdom. I could never have endured my "trial by
fire" without the support of the mother's group. We are all
teachers/learners and we are all there for each other. Most
importantly, we are not crazy!
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Supported Families
ssure partnerships that actively
include individuals and families
Partnering with one another and with a professional leader gives
families needed support and empowers them.
When my son was 18 months old, he was being
diagnosed in many different ways to try to label his various
idiosyncrasies. Nothing felt quite right and my son didn't fit
the rigid molds of these "labels." I was going out of my mind.
I went through many emotions. First, I thought, “What have
I done to cause this?” Then I immediately went into my I-can-
fix-this mode. I searched the Internet. I read books.
Finally, I was referred to the coordinator of a support group
for mothers of children with special needs. I didn't realize it
at the time, but this unsuspecting group of mothers would
literally change the way I perceived my life, and more
importantly, children with disabilities, including my son.
Nervous and extremely self-conscious, I attended my
first meeting. When the mothers introduced themselves and
the diagnoses of their children, I was convinced I had taken
a wrong turn. Autism? Cerebral palsy? Down syndrome?
Other names were so long and obscure even the acronyms
sounded like I fell head first into my alphabet soup. Mental
retardation? My child is NOT retarded! He's smart, very
smart, gifted in fact! I was NOT like these other women,
and they couldn't possibly help me. At least that is what I
thought.
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Center for Learning and Leadership/UCEDD
5
AFFIRM LIFESPAN PLANNING AND SELF-DETERMINATION that
encourages decision-making and planning for independence begin-ning
within the family when children are young, following the indi-vidual
throughout his or her life and including aging issues.
ASSURE PARTNERSHIPS THAT ACTIVELY INCLUDE INDIVIDU-ALS
AND FAMILIES in planning, development, implementation and
evaluation of policies, practices and personal programs.
PRACTICE OPEN COMMUNICATION promoting a clear under-standing
of all aspects of systems policy, procedure, practice and
all other information regarding them.
RECOGNIZE THE IMPORTANCE OF THE COMMUNITY, where
individuals and their families belong and realize their full potential.
All people need enduring, stable family and community relationships. All
families need support at times in their lives to maintain these lasting
relationships. Individual and family support must assist across the
lifespan, supporting the child within the family and the individual
reaching independence. This assistance builds on natural sources of
support, including extended families, friends, neighbors and community
associations. The way support is provided is a reflection of what we
believe about individuals and families, a way of thinking about individuals
and families, and a way of engaging with individuals and families.
Famiilly Supportt Priinciiplles
Supported Families
WHEN WE ENGAGE WITH INDIVIDUALS AND FAMILIES WE WILL ...
onor their expertise
When professional experience joins the expertise of parents, the
ones who know the child the best, results can be awesome.
Nathan, my only child, was born with Down syndrome.
He received early intervention services from the time of his
birth, and the therapists were great with him. When Nathan
was 9 months old, I decided that I would try weaning him
from his bottle. So, one week when his therapist came I asked
her how you teach a child to drink from a straw. I had no
idea how this occurred or even when it should occur. She
described the procedures to me and the next week when she
came, I was proud to show off Nathan's new skill – he was
drinking from a straw.
The therapist was shocked. She told me that she had
almost not told me how to teach Nathan since this was an
early age even for a typically developing child. Lucky for us,
she assumed Nathan could do it and didn't assume he
couldn't do it. Furthermore, she respected my ability to teach
him.
Nathan has many strengths and surprises many people
(including me!) with what he does and what he knows. Even
now, five years later, when I see him drink with a straw it
brings a grin to my face.
6 Center for Learning and Leadership/UCEDD
doctor. He read Jennifer's file and asked what had been
successful in the past. Naturally, as the record-keeping
mom, I related our best efforts, positions and squirts. "Not
good enough," he declared. I was so flabbergasted I
sputtered. He went on to explain, "I mean Jennifer could
benefit from a long-acting antibiotic injection and save you
and her from a complicated medication regimen. We'll
know she got the exact amount prescribed and eliminate
those complications. How's that sound?"
I was so stunned that there was an alternative to our
years of strangling efforts, I could hardly speak. Jennifer got
well easily, and I am eternally grateful.
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Supported Families
ffirm lifespan planning
and self-determination
Families particularly value professionals who look at the big picture
and take into account lifelong needs. Jennifer's family found such a
person.
Gulp! Gag! Spew! Taking oral medication has always been
so difficult for Jennifer. This has posed as many problems as
any illness. Jennifer has no suck, blow or swallow response.
Mild upper respiratory irritations have always been a health
issue for her. A cold could prove to be a major illness,
complicated always by aspiration of medications and fluids.
We tried everything. We tried different positions (glad we
don't have photos); we tried different consistencies; we tried
droppers and even a squirt gun. We looked at the time of
day; we looked at the size of dosage. Nothing helped.
Jennifer dreaded the efforts to self-medicate and dreaded
all attempts to assist. Being assisted meant that someone
would have to schedule visits to Jennifer at medication times,
no matter what, determine if she was getting enough
medicine to be therapeutic, adjust dosage and call a physician
if all positions, mixtures, drops and squirts failed. Medications
have truly been a lifespan issue for Jennifer, her family and
staff.
On one of those torturous occasions, Jennifer's regular
physician was unavailable, and she was referred to a new
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Center for Learning and Leadership/UCEDD
This family valued inclusion, being a part of the school and the
community. It was not easy to achieve, but worth all efforts.
My brother was diagnosed with mental retardation 47
years ago. But I always thought my brother was smart!
Different, yes, but smart, very smart! When he was 15 and I
was 18, I took it upon myself to get him into regular high
school classes. I pitched most of the school districts in the
large urban area where we resided, trying to sell them on the
idea of having my brother included in typical high school
classes. Each of these attempts met with instantaneous
failure! Worse yet, though reluctant at first, my brother had
decided he wanted to be in regular classes too.
Discouraged, I convinced myself to try once more, in
what I thought was the worst school district in the area. Just
like the other times, I made an appointment with the principal
and told my brother's story. I was passionate that my brother
was capable of learning in typical classes even though he did
not know the alphabet and could not read. I promised to
tutor him with all my might. I even offered to move and drop
out of college to push my dream into reality.
I got the shock of my life! She agreed to try it! In the
most unexpected place, I found a principal with the grit to
leap beyond my brother's label. She changed the course of my
brother's life forever. This memorable woman respected our
espect and accept their values
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Supported Families
values, dreamed a dream with me, and had the vision and
authority to shift my brother's educational prospects to a
richer and more promising future. She allowed him to discard
his label – designed to limit – and transcend it for a life of
self-determination and hope.
My brother learned to read and write. He blossomed in
math and science. He graduated from high school with As, Bs
and a few Cs. After high school and still determined, he took
flying lessons and received the highest score on both the
written and flight portions of the pilot's exam in the history
of the flight school. Because that principal believed in my
brother and the values of our family, my brother continues to
soar.
8 Center for Learning and Leadership/UCEDD
physical therapy sessions, her strength and agility greatly
improved and walking became her preferred way of getting
around. Bridget is now 32 years old and the ability to walk
independently has made all the difference in her quality of
life. Since Bridget has a severe vision loss and is deaf, the
ability to experience the world and interact with people
from an upright position has been a key to her relationships
with people and her pleasure in life.
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romote flexible service and funding
Helping a child get needed services is only half the battle for
families; getting the services funded is the other half. Families win
when informed and determined professionals join their ranks.
When my daughter, Bridget, was 3 years old, she hit a
"stuck point" in her progress with occupational therapy.
Among her multiple disabilities was cerebral palsy, and she
had so much spasticity in her right leg that it prevented her
from walking. However, the orthopedist and physical
therapist who evaluated her did not think she could benefit
from either tendon release surgery or physical therapy due
to her multiple disabilities, and I was unable to change their
minds.
Bridget's occupational therapist gathered information
about the benefits of both the surgery and the physical
therapy, documented Bridget's remarkable successes with
occupational therapy and was able to persuade the physician
and therapist to be flexible and approach their interventions
with Bridget in a way that would succeed. Also, the
occupational therapist researched available funding for both
services and was able to assure that the cost would be
covered.
Following the surgery, Bridget walked independently
before the cast was removed from her leg! After a few
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Center for Learning and Leadership/UCEDD
upport individual and family relationships
A sister can be a little girl's best friend during tough times. A
caring teacher helped these girls stay connected for their mutual
benefit and enriched their friendship network.
Nicole was always in tow at her sister's multiple doctors'
appointments and hospital stays. You see, her little sister,
Katie, had a very rare, undiagnosed mitochondrial disorder
with an underlying genetic syndrome.
Katie's gastrointestinal tube needed to be replaced
because multiple seizures made normal feeding impossible.
Nicole had started kindergarten so this would be the first
time she would not be near Katie while she was in the
hospital. I wasn't sure how Nicole would react, or if she
would be able to function in school that day. I was very open
with Nicole's teacher and told her what she might expect and
to call me if Nicole became too upset. I did not receive a call.
Nicole had a good day because her teacher used this as an
opportunity to teach the children about nutrition and various
ways that people can eat.
When Katie was well enough to visit the school, I took
her and "fed" her in front of all the children and let them ask
as many questions as they could think of. This class of 20
kindergarteners became Katie's new best friends. They loved
Katie, like Nicole did.
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Supported Families
ocus on the entire family
Being a sibling, in any family, involves both joy and woe. But having
a brother or sister with a disability can be particularly challenging
and particularly rewarding. A sensitive teacher supported my family
and guided the entire first grade in a positive direction.
My son, Ryan, became an advocate for his big brother,
Doug, at an early age, in a way that helped Ryan directly while
increasing positive attitudes toward people with disabilities in
a broader sense. As a first grader, Ryan came to me dismayed.
Classmates on the playground were calling each other
"retard." We had previously discussed diagnostic labels, and
he knew that mental retardation was part of his brother's
diagnosis. He knew as well that "retard" was an unacceptable
and hurtful term. He did not know why his friends were
saying it or what he should say to them. I explained to him
that his classmates probably had not had the chance to get to
know someone with disabilities as a person and as a friend. I
asked him if he would like to tell his classmates about Doug.
He said that he would. The next step was to talk with his
teacher. She was concerned by the report of the playground
conversation and said that she would address that directly.
She agreed, however, that a personal touch would probably
do much more to solve the problem.
Special Olympics gave us the perfect opportunity. Doug
had gone to the state games in Stillwater and returned with a
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WHEN WE ENGAGE WITH INDIVIDUALS AND FAMILIES WE WILL ...
Center for Learning and Leadership/UCEDD
gold medal. Ryan thought it was awesome, saying with
wonder, “Doug got the gold." He decided to take the medal
to show the first graders when he told them about Doug. I
asked him what he planned to say. He said he would show
the medal and tell how Doug won it. Then he was going to
tell them not to say words like “retard” because ... He
stopped then and asked, "Can you go to jail for that?" I told
him that you could not (although maybe it's not such a bad
idea), but that words like that hurt people with disabilities
and their families. He said, "Then that's what I'll say." And he
did. His teacher said he was wonderful, and his classmates
dropped that word from their vocabularies.
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