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The |
e-AADDvocate |
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Newsletter of the Atlanta Alliance on Developmental Disabilities |
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Our mission
is to build
communities of
support, acceptance,
and opportunity for
children, adults,
and families living with developmental
disabilities
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Issue 47
September
2008 |
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(Click on title below to go directly to article.)
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1.
Vince Dooley says 'AADD is a
bulldog for Georgians with
developmental disabilities' |
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Legacy 2008 Co-Chairs Whitney &
Peter Moister (left) and
Honorary Chairs Barbara & Vince
Dooley (right). |
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Whitney and Peter Moister,
Legacy 2008 Co-Chairs, recently
entertained members of the
Legacy 2008 Host Committee at
their home for a kick-off party
leading up to the October 23rd
event. Barbara and Vince
Dooley, Honorary Chairs of
Legacy 2008, inspired guests to
work hard for AADD in the coming
weeks.
“AADD is a bulldog for Georgians
with developmental disabilities.
We need to support the work of
this organization,” Dooley said,
following remarks by Mary Yoder,
AADD executive director.
Mary spoke about the critical
leadership role AADD plays in
Georgia to help families and
individuals living with
developmental disabilities in
securing support, advocacy,
education, justice, employment,
protection, and more. “AADD is
all about developmental
disabilities in Georgia; we are
helping to make life better for
people living with developmental
disabilities and their
families,” Mary explained.
Barbara Dooley shared her
concerns with regard to some of
the challenges facing families
living with developmental
disabilities. Her son Daniel
and daughter-in-law Suzanne have
two children, Michael and
Matthew; Matthew, a
teenager, has cerebral palsy.
Barbara spoke about the
incredible expense of rearing a
child with a developmental
disability, and the fact that
“things for a child with a
developmental disability—just a
ball, for instance—cost four
times as much as things for a
child without disabilities.” She
also spoke about the strain
families face when caring for a
family member who needs
round-the-clock support, as well
as concerns families have about
“what happens after we're gone.”
“I have a cousin who is 70 years
old; she has Down syndrome. Her
sisters are getting older, and
we all wonder what happens when
her sisters are too old to care
for her,” said Barbara, giving
voice to yet another concern in
which AADD takes a leadership
role. Families living with
developmental disabilities
wonder who will care for their
loved ones when parents have
passed away, or other family
members are unable to care for
loved ones.
To see additional photos from
the kick-off party, follow
this link.
For more information about
Legacy 2008, please visit
this link, or contact Carey
Sipp at 404-881-9777 ext. 228,
or
carey@aadd.org.
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Coach Vince Dooley and
AADD Executive Director Mary
Yoder.
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2.
FASD Awareness Month: education
key to preventable birth defects |
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Donnie Kanter Winokur serves on
the board of the Atlanta
Alliance on Developmental
Disabilities and chairs the FASD
Advisory Committee. |
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Editor’s Note: September is
National Fetal Alcohol Spectrum
Disorders Awareness Month. AADD
serves people with Fetal Alcohol
Spectrum Disorder (FASD), a
prevalent developmental
disability.
We are living with a public
health crisis that demands our
attention. We must speak for
people who cannot necessarily
speak for themselves: infants,
children, and adults living with FASD, a neurological and
behavioral disorder caused by
women drinking alcohol while
pregnant.
The science says that no one
knows how little alcohol it
takes to affect the unborn
fetus; some women can drink
while pregnant and their baby
will not be affected; others can
drink very little and have
babies suffer major, life-long
neurological damage.
Most of the time, the effects of
FASDs are not readily
recognizable, physically. But
the inability to process
information, lifelong issues
with anger management, and a
multitude of behavioral
challenges caused by this
preventable brain damage, are
patently obvious to parents –
biological or adoptive – of
children with FASD, especially
if their child has the most
severe form of FASD, Fetal
Alcohol Syndrome (FAS). |
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The statistics are
staggering: The prevalence
of FASD is 1 out of 100 live
births in the U.S.
FASD is 50% more prevalent
than Autism; out of 300 live
births there are three
babies born with FASD; two
babies born with Autism. It
is estimated that 132,711
Georgians were born with
FASDs last year. In the
2008 report to the President
from the President’s
Committee for People with
Intellectual Disabilities,
FASD was one of only two
issues addressed and
states, “with regards to
prevention, the Committee
recognized the awesome
potential for improved life
and health outcomes by
defeating the single most
preventable cause of
intellectual disabilities:
fetal alcohol spectrum
disorders.”
But here’s the rub: very few
people know what FASD is,
how you “get it,” or why
they should care.
More often than not, people
with FASD are undiagnosed or
misdiagnosed; some
professionals will diagnose
a form of Autism or
Attention Deficit
Hyperactivity Disorder
(ADHD). Sadly, many in
the medical
community shrug off the
responsibility of a correct
diagnosis with an attitude
of, “If it can’t be cured,
why does the diagnosis
matter?“
We need to care: FASD takes
an enormous emotional and
financial toll on families
and society as a whole.
The United States spends
$6.4 billion annually in
direct and indirect costs to
help support, educate,
treat, and rehabilitate
people born with FASD. It is
estimated the annual costs
in Georgia to assist people
with FASD reached
$220,914,909 in 2007.
Further, this largely
misunderstood disability
significantly impacts our
correctional system, as 42%
-- almost half of those
affected -- will have
trouble with the law.
Equally as many people with
FASD will drop out of
school, either for a while,
or permanently.
I speak from experience
about wanting to prevent
FASD; it is child abuse to
the unborn.
Our son’s life-long
challenges began before he
was born, when his birth
mother drank alcohol during
her pregnancy. As a result
he was born with FAS,
leaving him with
significant neurological,
emotional, cognitive, and
behavioral damage. His
life-long disability was
100% preventable!
The emotional costs to those
who care for family members
with FASDs cannot begin to
be articulated. He will
essentially live in an
18-year-old body but will
function more like a 12-year-old. Our
son's challenges and our
challenges are likely to
become even more complicated
as research suggests that up
to 94% of individuals living
with FASDs must also fight
mental illness, and that
most adults with FASDs
cannot live independently.
The consequences of living
with FASDs are immeasurable.
FASDs are 100% preventable;
0% curable. Yet women still
continue to drink alcohol
during pregnancy!
National statistics from
2008 show that 55% of women
are drinking at the time
they become pregnant. Research
indicates that one out of
four women drink alcohol
during their first
trimester; one out of 14
women drinks during the
second; and one out of 20
during their third
trimester.
We must use education and
awareness to protect babies
not yet conceived, and work
for the day there will be no
babies born with FASD. At
the same time, we must offer
more understanding and
support for families living
with these disorders. The
bottom line? FASD awareness
and education are
imperatives.
Donnie Kanter Winokur
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3.
AADD provides housing and brings
stability to homeless families |
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By the end of September, AADD
will have secured housing for
twenty-four individuals with
developmental disabilities and
their families within the past
two years, for a total of 47
people served. Prior to our
help, each of these participants
was homeless or at serious risk
of becoming homeless.
Through AADD's efforts, each now
enjoys the stability of secure
housing and support services.
This number fulfills a goal
set by Lesa Hope,
Ph.D., AADD’s director
of community services.
For more information about how
AADD has brought greater
stability to individuals and
families with developmental
disabilities, contact Riki
Bolster, AADD's information,
referrals and resource
coordinator, at 404-881-9777 ext
223 or
riki@aadd.org
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AADD program participants
standing outside their
apartment, secured by AADD. |
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| 4.
AADD partners with DHR and the
DeKalb DD Council to conduct trainings across
Georgia |
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Caring for a family member with a
disability can mean a lifetime of financial,
emotional, and medical challenges.
Those challenges are magnified when
caregivers and their adult
children with disabilities grow older. Currently
in Georgia,
there are more than 17,000
caregivers over the age of 60
responsible for an adult loved-one with
a developmental disability.
As part of a collaborative effort,
AADD has partnered with the
Department of Human Resources’ (DHR)
Division of Aging Services, DHR’s
Division of Mental Health,
Developmental Disabilities and
Addictive Diseases (MHDDAD), and the
DeKalb Developmental Disabilities
Council (DD Council) to host ten
lunch and learn programs throughout
the state focusing on the complex
issues and challenges faced by adults
who are aging or have disabilities
and their caregivers.
This series of programs is a result
of AADD’s numerous efforts to
encourage aging and disability
service agencies to collaborate in
order to find
solutions for those who are
struggling to find support as they
age and care for aging children with
disabilities. “It is important to
build bridges between local agencies
and to foster community connections
to ensure support to entire
families,” says Dave Blanchard, AADD’s director of public policy.
Remaining Forum Dates and
Locations:
Sept 24 – McRae Little
Ocmulgee State Park
Sept 30 – Athens Clarke
County DFCS
Oct 15 – Waycross Southeast
Georgia Area Agency on Aging
For additional information about
these meetings, please follow
this link or contact Dave
Blanchard at 404-881-9777 ext 215 or
dave@aadd.org.
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5.
Activities Connection |
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For information on recreation or education events,
click here
to visit the “Events” section of our AADD Web site.
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Atlanta Alliance on Developmental Disabilities - (AADD)
1440 Dutch Valley Place - Suite 200 Atlanta, GA 30324-5371
Phone: 404-881-9777
Fax: 404-881-0094
Email, AADD newsletter ONLY: bradley@aadd.org
Email, AADD Information: info@aadd.org
AADD web site: AADD WEB SITE
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AADD is proud to receive support from the United Way of Metropolitan Atlanta and the Junior League of Atlanta

AADD WEB SITE Return to Top |
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