Wednesday, December 17, 2014

The Achieving a Better Life Experience (ABLE) Act Passed in Senate Tuesday

The Achieving a Better Life Experience (ABLE) Act Passed in Senate Tuesday
After Eight Years, Congress’ Most Bipartisan Bill Passes Set for a Presidential Signing
Washington, DC, December 17- Following overwhelming passage in the House of Representatives (404-17) last week, the Achieving a Better Life Experience (ABLE) Act (H.R. 647/S. 313) passed the US Senate as part of the Tax Extenders Package last evening. The ABLE Act is the most bipartisan, bicameral bill before the 113th Congress. The President now has ten days to sign the bill for it to become law.
No other bill before the 113th Congress equals or surpasses the ABLE Act’s bipartisan and bicameral support - 77 United States Senators, including Majority Leader Harry Reid (D-NV) and Minority Leader Mitch McConnell (R-KY), and the bill’s Senate Champions Bob Casey (D-PA) and Richard Burr (R-NC). In the House, 381 Representatives, including a dedicated set of House Champions - Congressman Ander Crenshaw (R-FL), House Budget Committee Ranking Member Chris Van Hollen (D-MD), House Republican Conference Chair Cathy McMorris Rodgers (R-WA) and House Rules Committee Chairman Pete Sessions (R-TX).
“Passage of the ABLE Act is a major victory for those with disabilities and their families,” Casey said. “This bill reminds us all that those with disabilities have a lot of ability. Soon those with disabilities and their families will be able to better save for their long-term care.”
“Some have called the ABLE Act the most significant piece of legislation affecting the disabled since passage of the American Disabilities Act nearly 25 years ago.  I got involved in this effort nearly 8 years ago with Senator Casey.  Families of severely disabled children came to us expressing the critical need for an easy way to save for their child’s future expenses, especially since many Americans with Down syndrome and autism are now outliving their parents,” said Senator Burr. “Most middle-class families don’t have the money to spend on lawyers and financial planners to set up sophisticated trusts to make sure that their disabled child will be OK long after they are gone.  What’s worse current federal law actually discourages parents from putting any assets in the name of their disabled child in fear of disqualifying them from federal programs down the road. It’s utterly unacceptable that our current laws doom a child born with a disability to a lifetime of poverty and dependence.  This is especially unfortunate when a parent or other family member has the resources and the desire to save and plan for that child’s future expenses but are advised by lawyers and planners not to.  The ABLE Act will take the first critical step in ending this injustice.”
NDSS has been one of the leading advocacy organizations behind the ABLE Act for over eight years and four Congress. Last week, ABLE House Champions renamed the landmark legislation to honor NDSS’ late Vice Chairman and chief ABLE Act architect Stephen Beck Jr., who passed away suddenly just days after the House passage. “The ABLE Act’s initial concept grew out of an idea around Steve Beck’s kitchen table, and now will be forever marked with his legacy,” said NDSS Chairman Rob Taishoff.
“The ABLE Act proves that people with disabilities and their families can make a difference. We fought long and hard to make the ABLE Act a reality for all people with Down syndrome and their families in this country,” said Sara Weir, NDSS interim President. “This landmark legislation puts a stake in the ground that people with disabilities, for the first time ever, can work and save money for the future. For NDSS, this has been a civil rights issue, and we can’t wait for President Obama to sign this bill into law.”
Under current law, they cannot have more than $2,000 worth of assets before critical government support programs they need are cut off.  In the face of enormous medical, transportation, and education costs, that amount does not extend very far and certainly hinders independent living.
The National Down Syndrome Society (NDSS), Autism Speaks and more than 100 other national organizations have endorsed the bill, which will ease the financial strain on families who have loved ones with disabilities.

About NDSS
The National Down Syndrome Society is a nonprofit organization representing the more than 400,000 Americans with Down syndrome. The mission of NDSS is to be the national advocate for the value, acceptance and inclusion of people with Down syndrome. NDSS envisions a world in which all people with Down syndrome have the opportunity enhance their quality of life, realize their life aspirations, and become valued members of welcoming community.

Thursday, December 4, 2014

Members Offer Rare Display of Emotion With ABLE Act

by Matt Fuller from Roll Call:
There are many votes members of Congress cast that mean absolutely nothing. Procedural motions. Uncontroversial bills and amendments that are forgotten as soon as they are voted on.
Then there are other votes — those constituents may never notice but that are, for some lawmakers, unforgettable.
On Wednesday, the House passed a bill, 404-17, that would establish tax-exempt savings accounts for individuals with disabilities. The bill, which is expected to pass in the Senate, exempts savings, up to certain levels, and distributions from those savings for individuals and families applying for means-tested federal programs.
Currently, people with disabilities can lose access to federal programs such as Medicaid or Supplemental Security Income once they establish a certain level of savings.
For those eligible, the so-called Achieving a Better Life Experience Act could mean a more independent life, making it easier to prepare for future financial needs. For certain members of Congress, the bill means actually doing something.
For the bill’s sponsor, Florida Republican Ander Crenshaw, the measure is an emotional victory.
“It just means a lot,” Crenshaw told CQ Roll Call Tuesday, choking back tears. “Helpin’ a lot of people.”
“I just see their faces and it just …” he said, trailing off.

Tuesday, December 2, 2014

URGENT: Call Your Reps & Urge Them to VOTE YES to the ABLE Act Tomorrow!

Down Syndrome Advocates:

Thank you for all the calls, emails, tweets and facebook posts over the last few weeks. We are closer than ever to the passage of the Achieving a Better Life Experience (ABLE) Act (H.R. 647/S. 313). 

We still need your help!

Please contact your Members of Congress TODAY by clicking the TAKE ACTION button below, and calling your Representative asking them VOTE YES on the ABLE Act on Wednesday!

Thank you for helping to #passtheABLEact!


Ginny Sessions
Manager, Grassroots and Development Programming
National Down Syndrome Society

Friday, November 21, 2014

Pope’s call to help the vulnerable turns to the autistic at Vatican conference

by Michelle Boorstein from The Washington Post:
57 countries will update one another on such issues as genetic research, pain management and government policies toward people with autism.
It will also begin with a Mass and a monsignor preaching on suffering and will include presentations on how the church can better include autistic people in the core aspects of Catholic life, such as the sacraments of confession and Holy Communion. It will end with an audience Saturday with Francis, an event advocates hope will significantly move the needle on awareness, particularly in Spanish-speaking countries.
Bob and Suzanne Wright, Catholics and co-founders of the major U.S. advocacy group Autism Speaks, will give a presentation at the conference.
“We speak at colleges and places like that, but they don’t reach large audiences,” said Bob Wright, former chairman of NBC/Universal and grandfather of a teenage boy with autism. “Then we started with the religious aspect, but the problem is there aren’t any leaders who have large numbers. Most religions are split up. We zeroed in on the pope, and this pope in particular, because he has such a gift for reaching out to people, and he wants the church to be more inclusive.”
Organizing any conference on autism — which affects one in every 68 children, according to Autism Speaks — is challenging because of the range of opposing views on such issues as the role of vaccines in autism spectrum disorder. The conference doesn’t appear to touch on vaccines but includes a presentation on other potential environmental impacts.

Thursday, November 20, 2014

Carly Booth still aiming to be world number one

by Jonathan Sutherland from BBC Scotland:
If it came down to self-belief, Carly Booth would already be world number one.
But, after a tough couple of years, the global ranking of Scottish golf's child prodigy is a lowly 441.
Now aged 22, she's ready for a re-launch, determined to climb to the pinnacle of her sport and confound the sceptics.
However, she also has another mission - to help her brother compete at the Special Olympics  next year.
Booth burst on to the Scottish golfing scene in precocious fashion, becoming the youngest ladies' club champion in Britain at the age of 11.
Two years later, she was asked in a newspaper interview where she saw herself in 10 years' time.
Her answer? World number one.

Wednesday, November 19, 2014

let's #passtheABLEact this year!

from the NDSS:

Great news... House and Senate Leadership continue to hear from the disability community that the Achieving a Better Life Experience (ABLE) Act (S. 313/H.R. 647) must pass this year! Keep it up!

We need you to make four easy phone calls, tweets and posts to ensure ABLE gets scheduled for a vote!

Please contact the following Leadership offices (all templates are provided below):

Senate Majority Leader Harry Reid:
Leadership Office:
 (202) 224-2158
Talking Points & Sample Tweets

Minority Leader Mitch McConnell:
Leadership Office: (202) 224-3135
Talking Points & Sample Tweets

Majority Leader Kevin McCarthy:
Leadership Office: (202) 225-4000
Talking Points & Sample Tweets

Speaker John Boehner:
Leadership Office: (202) 225-0600
Talking Points and Sample Tweets

Thank you for all you do and let's #passtheABLEact this year!


Ginny Sessions Siller
Manager, Grassroots and Development Programming
National Down Syndrome Society

Friday, November 14, 2014

Disney’s next movie should have a princess with a disability

by Keston Ott-Dahl from The Washington Post:
As an adult on the rare occasions when I did encounter a person with Down syndrome or other disabilities, I chose to walk away for fear they might want to hug me or drool on me. In short, I was a despicable ableist and according to the International Journal of Humanities and Social Science and a study published by the Global Down syndrome Foundation, I was not alone. Discrimination against people with Down syndrome has been well known for centuries, and American history is full of horrid examples: the “ugly laws” barring disabled people who might be deemed “unsightly” from appearing in public; the story after story after story after story after story after galling story of abuse that still often goes punished.  
It never dawned on me that I was discriminating, and I never realized how awful I was or that I would someday be given a chance to be a better human being, which is a tale better left said in my memoir, “Saving Delaney, Saving Me.”
The Global Down Syndrome Foundation reports that it wasn’t until the 1980s that the vogue for institutionalizing Americans with Down syndrome began to fade and only today are researchers making more concerted efforts to unleash the amazing capabilities of people with Down syndrome.
Those researchers have made monumental strides. Today, with Early Intervention therapies and focused educational programs, it is common to read about people with Down syndrome  living on their own, getting married, and even owning businesses, driving cars, going to college, performing as actors, having careers, and working as activists for the Down syndrome community. Broadly speaking, people with intellectual and mental disabilities are increasingly joining the workforce.

Thursday, November 13, 2014

Boy with Down syndrome completes epic bike ride for charity

by Tyson Shine from Yahoo News:
A 12-year-old boy with Down syndrome has helped raised thousands of dollars for the Special Olympics riding from Tasmania's east coast to Hobart.

Sporting a flat tyre, Lucah Mathiassen and his mother Kristin were part of a team of four who completed the journey with a warm welcome in the capital.

The pair and a support crew took four days to ride the 280 kilometres from St Helens in the north-east.

"[We had] 35-kilometre winds straight in the face along the east coast, that was definitely a challenge," Ms Mathiassen said.

The ride raised more than $5,000 for the Special Olympics which offers an opportunity for people with a disability to try competitive sport.

"Lucah will be involved at some point, when he's a little bit older," Ms Mathiassen said.

"Here is a single mum with her son with Down Syndrome ... wanting to do a ride for her son to be able to compete in Special Olympics, but also raising funds for us as well," Special Olympics Tasmania manager Bernadette Black said.

Wednesday, November 12, 2014

Contact Majority Leader Kevin McCarthy to Bring the ABLE Act for a Vote!

Down Syndrome Advocates:

We need your help TODAY!

Please call and email Majority Leader Kevin McCarthy asking him to bring the Achieving a Better Life Experience (ABLE) Act (H.R. 647/S. 313) to a vote under suspension next week!

Contact Majority Leader Kevin McCarthy for his support! Call-in script and email template provided below.

Majority Leader Kevin McCarthy:
Leadership Office: (202) 255-4000

Email Template

TALKING points

-I'm calling to ask Majority Leader Kevin McCarthy to bring the Achieving a Better Life Experience (ABLE) Act (H.R. 647/S. 313) under suspension next week.

-As Majority Leader, we need his leadership to bring the MOST BIPARTISAN BILL up for a vote - the ABLE Act has 85% of the ENTIRE CONGRESS COSPONSORING IT - with 74 Senators and 381 Representatives cosponsoring.

-The House Ways and Means Committee already unanimously voted the ABLE Act out of committee.

-The Senate Finance Committee held a hearing on the bill and, in September, issued a press release outlining their intention to being the ABLE Act to a vote once Congress returns from recess and after the election.

Monday, November 10, 2014

Incredible dancer with Down syndrome pushes toward greatness

FOX 10 News |
from FOX 10 Phoenix:
MAHTOMEDI, Minn. (KMSP) - Mikayla Holmgren has been dancing since she was a little girl. When she's dancing, she's in her element. Just like any other dancer, she's pushed to be great, and her instructor says there's nothing she can't do. She has Down syndrome, and that's simply not a barrier in front of her path to success. Never nervous, the 19-year-old has her parents to thank for her confidence.

“The more knowledge you have about our children, you realize that what you believed 20 years ago that they weren't teachable was not true,” her mom Sandi Holmgren said.

"She knows a lot more than she can articulate sometimes, so that's part of it and I think that shows up in the physical things; she can just perform,” dad Craig Holmgren said.