This is an action alert from the NDSS, but anyone can call in…it is not just for people w/down syndrome..this bill has huge implications for individuals with disabilities and their families…it was just introduced last week. Please call your members of Congress..pass the message on to family, friends, neighbors, your church, etc..anyone can call in.
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Call Your Members of Congress Today! Take Action!

Ask Them to Cosponsor the Achieving a Better Life Experience Act (ABLE) of 2009 (S 493/HR 1205)

The Achieving a Better Life Experience Act (ABLE) of 2009 (S 493/HR 1205) was introduced last week in both the Senate and House. The ABLE Act will give individuals with Down syndrome and their families the ability to save for their child's future just like every other American family, and help people with disabilities live full, productive lives in their communities.

The ABLE Act will allow individuals with Down syndrome to create a disability savings account that would accrue interest tax-free. The account could fund a variety of essential expenses for the individual, including medical and dental care, education, community based supports, employment training, assistive technology, housing, and transportation. The legislation prohibits amounts held by, or paid or distributed from any ABLE accounts from being treated as income or assets when determining eligibility for benefits provide by any Federal benefits program.

Asset development is one step towards improved economic self-sufficiency, and the legislation's focus on encouraging asset development will greatly incentivize people with disabilities to live more productive lives through earning and saving assets.

Talking Points to Call Your Senators and Representative:

I am calling to ask my [Senator/Representative] to cosponsor the Achieving a Better Life Experience Act (ABLE) of 2009 (S 493/HR 1205) led by Senators Casey (D-PA), Hatch (R-UT), Dodd (D-CT), Kennedy (D-MA), Brownback (R-KS), and Burr (R-NC) and Representatives Crenshaw (R-FL), Meek (D-FL), Kennedy (D-RI), and McMorris Rodgers (R-WA).

The legislation encourages persons with disabilities to save in order to live an independent and meaningful life while reducing their dependency on public benefits.

This legislation allows for the establishment of tax-exempt financial security accounts for individuals with disabilities to pay certain expenses, including: medical and dental care, education, community based supports, employment training, assistive technology, housing, and transportation.

The legislation prohibits amounts held by, or paid or distributed from any ABLE accounts from being treated as income or assets when determining eligibility for benefits provide by any Federal benefits program.

If your boss is interested in signing on as a cosponsor, please contact:
• o Bryn McDonough (202-224-6324) in Senator Robert Casey's office
• o Dustin Krasny (202-225-2501) in Representative Ander Crenshaw's office



If you are not on the NDSS action alert email list and would like to receive these alerts and information bulletins, please subscribe at: http://capwiz.com/ndss/mlm/signup/
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National Down Syndrome Society
666 Broadway, New York, NY 10012
Phone: (800) 221-4602; Fax: (212) 979-2873
Web site: http://www.ndss.org

NDSS National Policy Center
5505 Connecticut Avenue, N.W. # 239
Washington, DC 20015-2601
Phone: (800) 743-5657
e-mail: advocacy@ndss.org
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A friend or acquaintance tells you that their new baby has down syndrome and you are stunned and at a lost for words. Your first instinct will be to offer your sympathy and feel sorry for the new parents, but please don't!

I would encourage you to say the very same things that all parents want to hear- CONGRATULATIONS! Boy or girl? How much did he weigh? Does he look more like mom or dad? Is he healthy? If not, then you could safely say, " I am sorry to hear that, how can I help you?"
Then be willing to volunteer to bring a meal to two, offer to take other children for day or even an afternoon. If the other siblings are older, offer to take them with your family on outings.

This is not to say that you should ignore the DS or the fact that the mother is most likely struggling with all kinds of mixed emotions at this point! Be ready to listen with an open mind. If you are a close friend, be ready to offer support and also hope. The internet is a wonderful place to find all kinds of stories about families who want you to know that this child is a huge blessing.

Here are some things parents on the DSIE list serv have heard from others over the years:

"I know people don't mean it wrong or hurtful when they say it, but... I am just so tired of hearing, "God knew what he was doing when he gave you Hunter, because I just couldn't handle it". Like he SUCH a burden and we are just so good at carrying that burden... Sometimes when I've had a trying day and feel mean, LOL, I just look at them and don't say a word."
Patty

I don't know why, but I am still taken by surprise when people reveal their prejudice regarding Christine.

Maybe it's because it's so far away from my thinking now. When she was first born all I could see in her face was the DS. I would have been hard pressed to identify her as one of my own children, even though she is number 7. Now, 8 years later, I have a hard time seeing the DS, not only in her, but others with DS as well. It has disappeared into the back ground of my day to day living.

So when we were shopping for a birthday gift for an upcoming party she was invited to, I was caught off guard, not just once, but twice!

It happened to be Homecoming week in our schools and Christine is on the junior Cheer Squad. As is the custom, the girls all wear their uniforms to school to show team spirit. Not taking time to change, that is what she wore shopping as well.

One very nice lady, wanting to offer her public support to us, commented on the uniform. But instead of assuming she was actually a cheerleader, she assumed ( despite the very official look of the uniform with our school logo etc) that Christine was pretending to be a cheerleader.

Now I know she didn't mean any harm and I am sure she was trying to be nice. But I was offended and since it surprised me, mama bear took over and I blame her for the sarcastic response I lobbed at the unsuspecting woman. She felt the sting and immediately started to justify her comments by saying it's October and with Halloween being so close she just assumed Christine was pretending to be a cheerleader... blah blah blah......I had stopped listening.

I was still pondering this interaction as we were walking out of the store when yet another well meaning woman made the SAME assumption!

I don't mean to be cold or cruel, but I fail to see how placing people with a disability into a little box is supportive? They had already decided she was not capable of being a cheerleader and was merely living out her dreams within the realm of her own private world,when nothing could be further from the truth.

Carol

Did you just receive a prenatal diagnosis for Down Syndrome? Are you searching the internet for answers and a glimpse down the new path you are on? Here is a great web site dedicated just to you! http://www.prenatalpartnersforlife.org/.

We would also encourage you to join our list serv, ask questions, lurk and hear what life is really like with Down Syndrome.

Carol