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Our mission

 is to build

 communities of

 support, acceptance,

 and opportunity for

 children, adults,

 and families living  with developmental

 disabilities

    Issue 47                                                                                                         September 2008  

                     (Click on title below to go directly to article.) 

            

 

1. Vince Dooley says 'AADD is a bulldog for Georgians with developmental disabilities'

 
 
Legacy 2008 Co-Chairs Whitney & Peter Moister (left) and Honorary Chairs Barbara & Vince Dooley (right).
 

    
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.
  

 

 

   

Coach Vince Dooley and AADD Executive Director Mary Yoder.                                  Return to Top
 

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    2. FASD Awareness Month: education key to preventable birth defects

 
 
Donnie Kanter Winokur serves on the board of the Atlanta Alliance on Developmental Disabilities and chairs the FASD Advisory Committee.
 

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).

 
 

 
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

 
    
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.
 
                     
 4. AADD partners with DHR and the DeKalb DD Council to conduct trainings across Georgia  
 

   
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  
 

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)

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