TAKE 3 MINUTES TODAY TO CONTACT YOUR SENATORS FOR THE CRPD!

Today is our Action Day for the Convention on the Rights of Persons with Disabilities. The opposition has stated that the disability community is uninformed and does not really support the disability rights treaty. We are being significantly outnumbered by the opposition on calls and contacts via social media. We need every U.S. Senate member to be contacted and to know that the disability community is leading the movement for U.S. ratification of this international disability treaty and our voice matters! Have your friends, family, and work colleagues make calls, Tweet and Twitpic, email, and Facebook today to show support.  CONTACTS: You can find phone and email contact information for your senator here and Twitter IDs for your senators here (Tweet using #CRPD #UNCRPD)   Tell your Senators: I am a person with a disability and I want to see the senator vote in support of the CRPD this year! The CRPD will not cost the Federal Government any additional funds. The CRPD has been reviewed by both Republican and Democratic Attorneys General and by past Counsel to Presidents. They confirm that it does not threaten the sovereignty of the U.S., nor does it require any new legislation to comply with the treaty.  This treaty is good for American business and for the world. It will allow us to bring our knowledge of making a society accessible to the whole world. MOST IMPORTANTLY - This treaty is very important to the U.S. disability community! Following U.S. ratification of the treaty, U.S. leadership will help raise accessibility around the world, directly helping Americans with disabilities who live, work, or travel abroad.   Sample Tweet : @(SenatorID) Support the #CRPD #UNCRPD in 2012! This is a #disability issue and we say vote YES! Sample Twitpic: Click here, or on the image below to see the sample Tweet.   Want more information about the treaty? CLICK HERE Interested in why the CRPD is important to parents of children with disabilities? LISTEN HERE Add your organization to a list of over 275 U.S. disability organizations that support the CRPD CLICK HERE

Medicaid in Post-Election Discussions of Deficit Reductions

by David Heymsfeld, AAPD Policy Advisor:
With the election over, and Congress scheduled to return next week, Washington’s attention will quickly shift to proposals to reduce the federal deficit.
It has been widely reported that during the last few months there have been extensive behind the scenes discussions, particularly by Senators, of “grand bargains” to reduce spending and increase revenues to make major reductions in the deficit.  Now these discussions will move to the public arena.   They will be dominated by a sense of urgency created by the so-called fiscal cliff across the board spending cuts and tax increases which will occur on January 1, unless Congress passes legislation to undo them.
Reports of the behind-the scenes discussions indicate that they include considering proposals to make significant reductions in the federal Medicaid program. This is an issue of great concern to people with disabilities; 8 million of whom rely on Medicaid for health care and long term supports which is critical to their ability to live healthy productive lives as independent members of their communities.
AAPD and other advocates have made it clear that we are willing to work with Congress and the Administration to develop proposals which reduce the costs of Medicaid, by reforms that will make the program more efficient without reducing the services provided.  We will oppose proposals that only reduce funding and lead to cuts in the number of beneficiaries or the services they receive.
Two general approaches for reducing annual spending for Medicaid have gained significant support.
The first, incorporated in the budget passed by the House earlier this year is known as the block grant approach.  It specifically sets funding levels for Medicaid for the next ten years.  The ten-year budget would reduce Medicaid spending by $800 billion compared to the current program.
The second approach, one that reportedly has been seriously considered in the recent behind the scenes discussions, is a “per capita” approach.  It would limit funding by establishing an allowable cost for each beneficiary under the program. This would permit increased funding if more persons were added to the program.
In evaluating any specific proposals to reduce funding with these approaches, it is important to bear in mind that there are two separate issues; how much is funding reduced, and what problems are created by the method used to set the caps.

Verinata Health's verifi® prenatal test Expanded To Include The Most Common Sex Chromosome Abnormalities

by Verinata Health from the Sacramento Bee:
Verinata Health, Inc., a privately-held company dedicated to maternal and fetal health, today announced that it is expanding the verifi® prenatal test capabilities to include detection of the most common sex chromosome abnormalities. Clinicians will now be able to select the sex chromosomes option on the verifi® test to access this addition.Beginning December 3, 2012, the verifi test will offer the most comprehensive non-invasive prenatal test detection menu available. The verifi test detects the most common chromosomal fetal abnormalities seen in pregnancy, including Down syndrome (trisomy 21 or T21), Edwards syndrome (trisomy 18 or T18) and Patau syndrome (trisomy 13 or T13). The optional test expansion now includes not only detection of Turner syndrome (Monosomy X), but also Trisomy X (XXX), Klinefelter syndrome (XXY) and XYY syndrome, the most common fetal sex chromosome abnormalities. The test can also aid in the diagnosis of X-linked disorders.
"The verifi® prenatal test has been expanded to include additional chromosomal findings that are medically important," said Dr. Jeffrey Bird, Executive Chairman and CEO of Verinata Health. "Verinata is committed to advancing safe, accurate, and more comprehensive tests for physicians and pregnant women. We continue to improve non-invasive prenatal testing to include early information that previously required amniocentesis."
The verifi® prenatal test leverages the power of massively parallel sequencing (MPS) with a highly-optimized algorithm to provide clear, informative results for chromosomes 21, 18, and 13 as well as the sex chromosomes. Also, the test may aid in the determination of X-linked disorders such as hemophilia, Duchenne muscular dystrophy or cases of ambiguous genitalia, such as congenital adrenal hyperplasia.
About Sex Chromosome Aneuploidies
According to recent scientific publications, sex chromosome aneuploidies represent approximately five percent of all reported fetal aneuploidies. The most common sex chromosome aneuploidies result from a deletion or addition of an X or a Y chromosome to the expected two sex chromosomes (XX or XY). Subtle neurodevelopmental, language and learning difficulties, as well as anatomical changes result from most forms of sex chromosome aneuploidies. Klinefelter syndrome (XXY) is the most common sex chromosome aneuploidy, affecting approximately one in 500 males. XYY syndrome affects approximately one in 1000 males, whereas trisomy X (XXX) affects approximately one in 1000 females. Turner syndrome (Monosomy X) occurs in one in 2000 female births.
About the verifi® prenatal testThe verifi® prenatal test is a blood test that analyzes genetic material (or DNA) naturally found in a pregnant woman's blood to detect the most common fetal chromosome abnormalities.  When directed by a physician, the verifi test can be offered to pregnant women of at least 10 weeks gestation at high risk of carrying a fetus with a genetic abnormality. A physician may classify a woman as "high-risk" if she is over 35 years of age, has a prior personal or family history of chromosome abnormalities, or has had a positive initial screening test indicating she is at increased risk for carrying a fetus with a genetic abnormality.
Verinata Health, Inc.Verinata is driven by a sole, extraordinary purpose – maternal and fetal health. Our initial focus is to develop and offer non-invasive tests for early identification of fetal chromosomal abnormalities using our proprietary technologies. We aim to reduce the anxiety associated with today's multi-step process, the unacceptable false-positive rates, the non-specific and sometimes confusing results of current prenatal screening methods, as well as the risk of current invasive procedures. In support of national guidelines recommending first trimester aneuploidy risk assessment, we believe women who desire such an assessment should be offered a single blood draw test with a definitive result. The verifi® prenatal test is available throughout the United States, with the exception of New York, through a physician. For more information about Verinata, please go to www.verinata.com.
SOURCE Verinata Health, Inc.
Read more here: http://www.sacbee.com/2012/11/06/4964181/verinata-healths-verifi-prenatal.html#storylink=cpy

Voting Resources for People with Disabilities

Voting with a Disability, resources from Nonprofit Vote .org:

Below you will find links to voting with disabilities from national organizations.

Disability Vote Project: American Association of People with Disabilities
The AAPD Disability Vote Project (DVP) addresses the fundamental inequalities faced by voters with disabilities, and works in a nonpartisan approach to ensure full accessibility to all polling places and voting equipment.
DVP’s work:

• Eliminating barriers to voting
• Promoting voter turnout in the disability community
• Ensuring that voting the voting machines in production are accurate, accessible, and secure
• Growing disability vote coalitions across the country
• Educating the disability community on the importance of voting
• Increasing the registration rate among voters with disabilities

Disability and Voter Turnout
Fact sheets and testimony:

•  “Fact sheet:  Disability and Voter Turnout in the 2010 Elections,” by Lisa Schur and Douglas Kruse, June 2011.
•  “Fact sheet:  Disability and Voter Turnout in the 2008 Elections,” by Lisa Schur and Douglas Kruse, July 2009.
• “Testimony before Election Assistance Commission,” October 8, 2009.  By Lisa Schur.  Webcast at http://www.yorkmedia.com/eac/webcasts2009.htm.
• Studies:
• “Sidelined or Mainstreamed?  Political Participation and Attitudes of People with Disabilities in the United States,” Presented at the American Political Science Association  conference, August 2008, and updated October 2009.  By Lisa Schur and Meera Adya.
• “Voting,” in Gary Albrecht, ed., Encyclopedia of Disability (Thousand Oaks, CA: Sage Publications, 2005).  By Lisa Schur, Todd Shields, and Kay Schriner.
• “Enabling Democracy: Disability and Voter Turnout,” Political Research Quarterly, Vol. 55, No. 1, March 2002, pp. 167-190.  By Lisa Schur, Todd Shields, Douglas Kruse, and Kay Schriner.
• “What Determines Voter Turnout?  Lessons from Citizens with Disabilities,” Social Science Quarterly, Vol. 81, No. 2, June 2000, pp. 571-587.   ByLisa Schur and Douglas Kruse.

The Arc: We've Got the Power Vote in 2012
Election Day 2012—it’s closer than you think! In this time of rapid change and challenges at all levels of government, the importance for action by people with intellectual & developmental disabilities (I/DD), their families, and everyone who cares about our issues, and to become engaged in the political process has never been more important.
The Arc is pleased to provide resources for advocates and community partners for the upcoming 2012 elections. As people who care about the dignity, civil rights and access for people with I/DD at all levels of society, it is our role to promote civic responsibility and participation in our democracy. The Arc is launching its “We’ve Got The Power!” campaign to amplify the voice of people with disabilities as active participants in the political process, and in their communities. Together with Nonprofit Vote, a nonpartisan organization focused on providing voter engagement tools and resources, The Arc is providing links to toolkits, checklists, and other important resources for those wishing to show our communities that “We’ve Got the Power!” It’s time to Make Our Mark in 2012!

Bazelon Center 2012 Voting Rights Guides

Highlighted Tools

• VOTE 2012—It’s Your Right! Addendum to the 2008 Voting Rights Guide for People with Mental Disabilities (8/30/12): Replaces the 2008 chart “State Laws Affecting the Voting Rights of People with Mental Disabilities” in
   
  • Guide to the Voting Rights of People with Mental Disabilities (73 pages; 5.5"x8.5" page size) (2008 with 2012 updated chart of state laws)
• Restoring the Voting Rights of People Under Guardianship (PDF) | Word Version (8/30/12): Includes model motions, affidavits and orders that people under guardianship—or their family members or advocates—can use to restore voting rights taken away because a person with a mental disability has a guardian.
• Model Letter to State Election Officials (PDF) | Word Version (8/30/12): Alerts state election officials to voting problems faced by people with mental disabilities, and describes federal laws that protect the voting rights of people with mental disabilities.
• Chart of State Laws Affecting the Voting Rights of People with Mental Disabilities (8/29/12)
• Chart of State Laws on Voter Challenges (8/29/12)
• Summary and Links to Guardianship and Conservatorship Forms Provided by State Courts (8/29/12)
• Absentee Ballot Requirements by State (8/29/12)

Handouts and Flyers for Posting in Facilities and at Polls

• For advocates, family members, poll workers and others, on providing help to voters with disabilities--who can, and how (2-page PDF)
• For voters with mental disabilities, explaining basic voting rights (1-page PDF)

Additional Resources

• Clearinghouse Review Article on Voting Rights of Older Adults with Cognitive Impairments (9/08)

  

Below you will find links to voting with disabilities information from each state.

Parents of kids with Down syndrome following US researcher’s ‘memory drug’

by Karl Stagno-Navarra from Malta Today:

Despite the still embryonic stages of the drug, a number of parents from all over the world – including Malta – have contacted this doctor asking whether they should give their children the drug.

A number of Maltese parents of children affected by Down Syndrome, have reportedly been in contact with Alberto Costa, a Brazilian-born associate professor of medicine and neuroscience at the University of Colorado-Denver Anschutz Medical Campus, who has recently discovered a drug might help the memory of people with the condition.

The breakthrough drug called 'memantine' has so far produced what has been described as "cautiously encouraging results".

Despite the still embryonic stages of the drug, a number of parents from all over the world - including Malta - have contacted Costa asking whether they should give their children the drug.

He says no. It's still an experimental drug whose long-term effects are unknown. "Hence, please don't try it," he tells them.

During Costa's clinical experiment, young men and women with Down Syndrome were administered for 16 weeks with memantine, which is normally used by Alzheimer patients to improve their memory.

The subjects showed statistically significant improvements in one of five key memory tests compared with others who took placebos.

Its outcome was not substantial, but enough to draw attention from the Down Syndrome community around the world, following the publication of a lengthy profile of Costa in The New York Times, who is now searching for funds in order for him to broaden his research.

Michelle Sie Whitten, executive director of the Global Down Syndrome Foundation, which has helped fund Costa's research for the past six years, said Costa made a crucial link between Alzheimer's and Down syndrome that will affect future research.

"No one, including Alberto, is jumping up and down" over the results of the clinical trial, she said, "but it showed us much more information than we had before".