Delaware and Maryland join Massachusetts and Kentucky in enacting laws to provide information with a Down syndrome test result

by Mark Leach from Down Syndrome Prenatal Testing:

Last week, Governor O’Malley of Maryland and then Governor Markell of Delaware each signed laws requiring that their state agencies provide accurate, up-to-date information about Down syndrome for parents receiving a test result. They join Massachusetts (2012) and Kentucky (2013) in passing such legislation.

Delaware

Delaware joins Massachusetts and Kentucky exactly in what is required, passing in substance the exact same laws as passed in those states. So, now in Delaware, Massachusetts, and Kentucky anyone delivering a test result for Down syndrome to parents is required to provide accurate, up-to-date written information and contact information to local Down syndrome support organizations. Delaware hopefully will further join Massachusetts and Kentucky in identifying the same written information and resources to further standardize the way prenatal testing and postnatal diagnoses are administered.

Maryland

Maryland also passed a law providing information. Compelling testimony was taken during the hearings on the pending legislation:

When Heather Sachs’ daughter was born with Down Syndrome eight years ago, she wasn’t given helpful information or the names of parent groups offering advice and support.

Instead, Sachs tells Maryland lawmakers, she was simply handed a pamphlet, entitled “So You’ve Had a Mongoloid: Now What?”

On the audio of the Senate Finance Committee hearing where she testified, the gasps from lawmakers and attendees are audible.

Sign the ABLE Act Online Petition Today!

Many of you know about the Achieve A Better Life Experience (ABLE) Act. It's a bill in Congress that will allow people who receive Medicad the ability to save money beyond the current $2,000 cap on assests.

Many organizations in the disability community are asking members of Congress to agree to cosponsor this bill and the response is very positive with bipartisan support. 21 Senators and 160 Representatives have agreed to cosponsor the ABLE Act and that continues to grow.

There is a petition on change.org that will help show the tremendous support for the ABLE Act by people with disabilities, their families, and friends. Please click the link below and add your name to the list of ABLE Act advocates!


CLICK HERE TO SIGN THE PETITION
http://www.change.org/petitions/able-act



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ABLE Act details:

• The ABLE Act in the 112th Congress - One Page Summary Sheet (.doc)

ABLE Act status and list of current cosponsors:

• H.R. 3423: ABLE Act of 2011
• S. 1872: ABLE Act of 2011

from realeconomicimpact.org:

• The U.S. Congress took a historic step on Nov. 15, 2011 for Americans with disabilities by reintroducing the Achieve a Better Life Experience (ABLE) Act, legislation long championed by National Disability Institute and other disability organizations as a key to providing a pathway to a better economic future for persons with disabilities and their families.
• With bipartisan support, Rep. Ander Crenshaw (R-FL) in the U.S. House of Representatives and Sen. Robert Casey (D-PA) in the U.S. Senate reintroduced the the ABLE Act in 2012 (as H.R. 3423 and S. 1872, respectively) in an effort to encourage and assist individuals with disabilities and their families to set funds aside in a tax-advantaged savings account that allows the funds to be withdrawn to cover costs of health care, employment support, housing, transportation, the purchase of technology and lifelong education. The funds will supplement but not replace benefits provided through Medicaid, Social Security and private insurance, allowing families with sons or daughters with significant disabilities a means to provide for extra costs associated with every day activities and community participation. The income earned on amounts contributed to an ABLE Account would be tax exempt and not counted as part of any asset limits for eligibility to federal programs.

Everything You Need to Know About the ABLE Act

From the NDSS:

Dear Friends,
The December NDSS webinar will be “ABLE Act 101 – Everything You Need to Know About the ABLE Act” on December 7th at 1pm Eastern.

The Achieving a Better Life Experience (ABLE) Act of 2011 (S. 1872/H.R. 3423) was just introduced in the 112^th Congress in both the U.S. Senate and House of Representatives. When passed as a law, the ABLE Act will give individuals with disabilities 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 without losing benefits provided through private insurances, the Medicaid program, the supplemental security income program, the beneficiary’s employment, and other sources. The account could fund a variety of essential expenses for individuals, including medical and dental care, education, community based supports, employment training, assistive technology, housing, and transportation. During this webinar, you will learn the nuts and bolts about the ABLE Act and how you can take action to get the ABLE Act passed into law

Presenters:

• John Ariale, Chief of Staff, Representative Ander Crenshaw (R-Florida)
• Jennifer Debes, Legislative Assistant, Representative Ander Crenshaw (R-Florida)
• Steve Beck, Parent; Board Member, National Down Syndrome Society; Board Member, Down Syndrome Association of Northern Virginia
• Madeleine Will, Director, National Down Syndrome Society
• Sara Weir, Senior Policy Advisory,  National Down Syndrome Society

Slides from the presentation will be posted to www.ndss.org. During the webinar there will be time for Q and A. Please feel free to share this webinar and the login information with anyone you feel may be interested in the presentation.

Please register to attend this webinar.  Seats are limited: https://www2.gotomeeting.com/register/608740234

Warmly,

NDSS
National Down Syndrome Society
666 Broadway, Suite 810
New York, NY 10012
800-221-4602
www.ndss.org

Lawmakers Call For Increased Down Syndrome Research

from disability scoop:

A set of new bills introduced in Congress would establish first-ever centers for studying Down syndrome and boost research of the chromosomal disorder, a move supporters say will correct a funding inequity.

Since 2000, the Children’s Health Act has specifically authorized research for several conditions including autism, epilepsy, asthma and fragile X syndrome, but not Down syndrome.

Now, two bills introduced late last week by U.S. Rep. Cathy McMorris Rodgers, R-Wash., could change that.

The legislation would allocate $6 million annually for the National Institutes of Health to establish six centers of excellence for Down syndrome research.

Moreover, the federal agency would be required to create and update a Down syndrome research plan every five years and the bills call for the establishment of three research databases.

The move is an effort to help level the playing field when it comes to the allocation of research dollars. Historically, advocates say that funding for Down syndrome has lagged behind that of other conditions.

Last year, the National Institutes of Health tagged $28 million to study Down syndrome, $6 million of which came from economic stimulus efforts.

At the same time, more than three times as much money went toward cystic fibrosis research, even though that condition affects just 30,000 Americans compared to some 400,000 with Down syndrome.

For McMorris Rodgers, increasing the federal focus on Down syndrome has special meaning, as her son Cole, 4, has the developmental disorder.

“I’m quite concerned that so many of the researchers in the Down syndrome field have difficulty getting funded,” McMorris Rodgers told The New York Times in an article published just last week. “My fear is that for some, they believe that it’s been taken care of through prenatal diagnosis.”

It’s unclear when the legislation may be considered in Congress. But the bills do have bipartisan support — a key to getting legislation passed in recent times — with co-sponsors Rep. Chris Van Hollen, D-Md., and Rep. Pete Sessions, R-Texas, on board.

Those backing the measures say some senators have expressed interest in presenting similar legislation before that body, though nothing has been introduced yet.