Tuesday, December 11, 2012

A Small Request

Please consider sending the following letter to both your state senators and the chairman of the Senate Committee on Health, Education, Labor, and Pensions.  You can find the contact info for your senators here

A list of the committee members and the contact info for the chairman are at the end of this post.

Dear Senator ________________________________

As a parent/grandparent/relative/foster parent/ caregiver/ friend of a child with Fetal Alcohol Spectrum Disorder (FASD), I was so pleased to learn about the bill S2262: Advancing FASD Research, Prevention, and Services Act introduced 03/29/2012 by Senator Tim Johnson.  The bill, aimed at amending the Public Health Service Act to revise and extend the Fetal Alcohol Spectrum Disorders programs is sorely needed.  The bill was referred to the Committee on Health, Education, Labor, and Pensions the same day and has had no further action since.   Although FASD has been recognized as the “number one cause of preventable birth defects,” for well over 20 years it is much more than that. Our elected officials not only need to understand how to improve the Federal Government’s public health response aimed at prevention, but also how to improve its response as it relates to the education, housing, employment, public safety, criminal justice, and financial issues facing persons with FASD and their families. There are so many more things we can and should do to help our children and their families.  Things that will in the end help our entire society.

A great number of children and adults with FASD have significant behavioral, communication, and social impairments that preclude them from effectively participating in school or work and general social activities. FASD affects their ability to concentrate, focus, and perform many activities of daily living which neuro-typical people take for granted.  The families and caregivers of people with FASD are often overwhelmed with the financial implications of having both, more expenses for treatments and less time to work. They are provided little guidance, and there is a lack of “best practices” on how to help individuals with FASD become functioning members of society.  Parents (and FASD affected individuals’) dreams of college, grandchildren (a spouse / children), and retirement (career) are pushed aside to focus on mastering a variety of daily concerns like impulse control, understanding the abstract concepts of money or time, and social skills.   43% of individuals affected by FASD will not finish school.  About 50% of them will think about or try to commit suicide.  70% will be institutionalized in their life for alcohol and drug problems, mental health reasons, or crimes committed due to their impulsivity and vulnerability.  80% will not be able keep a job increasing their risk for homelessness, depression, substance abuse, etc. It becomes a vicious circle and it doesn’t have to be that way.  With the right interventions and support most people with FASD can learn and they can be gainfully employed.  They have so much that they can give to our society.

How can the Senate address these issues more effectively, so that we can achieve a quantifiable difference in the lives of so many? Clearly, we need action on S2262.  Introduction of the bill was an important first step in working to ensure the human rights that children and adults with FASD deserve but now we must move forward with it. I am looking forward to seeing more attention and action on S2262  by the Committee on Health, Education, Labor, and Pensions  and the senate as a whole in the coming year.

Thank you very much for your time and consideration.



Committee on Health, Education, Labor, and Pensions Members
Harkin, Tom (IA) , Chairman            
(202) 224-3254


Mikulski, Barbara A. (MD)
Bingaman, Jeff (NM)
Murray, Patty (WA)
Sanders, Bernard (VT)
Casey, Robert P. (PA)
Hagan, Kay R. (NC)
Merkley, Jeff (OR)
Franken, Al (MN)
Bennet, Michael F. (CO)
Whitehouse, Sheldon (RI)
Blumenthal, Richard (CT)
Enzi, Michael B. (WY), Ranking Member
Alexander, Lamar (TN)
Burr, Richard (NC)
Isakson, Johnny (GA)
Paul, Rand (KY)
Hatch, Orrin G. (UT)
McCain, John (AZ)
Roberts, Pat (KS)
Murkowski, Lisa (AK)
Kirk, Mark (IL)

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