JFActivist

CDC: Developmental Disabilities Affect 1 in 7 U.S. Kids

via NPR (5.23.11):

CDC: Developmental Disabilities Affect 1 in 7 U.S. Kids 

by Nancy Schute

Fifteen percent of American children have a developmental disability, including autism and ADHD, according to a new report from the federal Centers for Disease Control and Prevention.

That's an increase of almost 2 percentage points from 1997 to 2008, or almost 2 million kids. But that number may be squishier than it sounds.

The new figure comes from the National Health Interview Surveys, which ask parents if their children have ever been diagnosed with a variety of behavioral and developmental problems. That can include assessments by teachers or counselors, so the number is less than airtight. The number also could reflect increasing awareness of autism, and decreasing stigma.

The results were published online by the journal Pediatrics.

>>>For the Full Article...

Do you feel this number "reflects increasing awareness and decreasing stigmatization of autism"? Please share your thoughts in the comments below.

NH Representative Advocates Eugenics for "the Defective People"

Update from the Concord Monitor (3.15.11):

Eugenics lawmaker resigns
By Shira Schoenberg

State Rep. Martin Harty resigned yesterday, facing outrage from constituents, colleagues and strangers over comments he made endorsing eugenics for what he called "defective people."

Harty, a 91-year-old Republican from Barrington and first-term representative, submitted a hand-written letter of resignation to House Speaker William O'Brien.

"I was just getting the hang of it some, but with all the slightly unfavorable publicity I've been getting the last few days I'll never be an effective lawmaker," Harty wrote. "Sorry my big mouth caused this furor."

O'Brien said Harty came to his office to personally offer his resignation. The resignation will become official today, and a special election will be held to fill his seat...

...Party leaders from both sides of the aisle cheered the announcement...

>>> For the Full Article 

From the Concord Monitor (3.11.11):

Lawmaker advocates eugenics

By Shira Schoenberg

A 91-year-old state representative told a constituent that he believes in eugenics and that the world would be better off without "defective people."

Barrington Republican Martin Harty told Sharon Omand, a Strafford resident who manages a community mental health program, that "the world is too populated" and there are "too many defective people," according to an e-mail account of the conversation by Omand. Asked what he meant, she said Harty clarified, "You know the mentally ill, the r#t@rded, people with physical disabilities and drug addictions - the defective people society would be better off without."

Harty confirmed to the Monitor that he made the comments to Omand. Harty told the Monitor the world population has increased dramatically, and "it's a very dangerous situation if it doubles again." Asked about people who are mentally ill, he asked, apparently referring to a lack of financial resources, "Can we afford to bring them through?"

Harty said nature has a way of "getting rid of stupid people," and "now we're saving everyone who gets born."...

Omand says Harty then stated, "I wish we had a Siberia so we could ship them all off to freeze to death and die and clean up the population."

Omand said Harty appeared to be serious. After Omand responded that his idea sounded like what Adolf Hitler did in World War II, Omand said Harty responded, "Hitler did something right, and I agree with (it)."

Harty told the Monitor he was "just kidding" about Siberia. He denied making the comment about Hitler and said it was Omand who brought up Hitler...

>>> For the Full Article

From the JFA Moderator:

It takes a lot to shock me, but this article did.  To be fair, the rest of the article indicates that Harty may be developing age-related dementia or possibly alzheimer's disease, so most of my outrage is targeted toward the voters who gave him the power to decide to stop funding programs for PWDs and toward the other republican representatives who are more than willing to write off these horrifying statements. 

If he were just a wacky retiree I might be more forgiving, but the fact is that he is casting votes that will determine if mental health programs are closed or how much of the state budget is allocated toward services for PWDs.  I agree with Laura Brahlek who posted to the AAPD fan page, "Those committee members who work alongside this man should be embarrassed and urge him to quit his post for health reasons."

Call for his retirement:

Call Representative Harty at (603) 664-2620

Call Governor John Lynch at (603) 271-2121

Call the House Speaker William O'Brien at (603) 271-3661

Call the House Majority Leader at (603) 271-3665

Tell them "Representative Harty needs to retire."

Genetic Non-Discrimination Forum

From AAPD (1.24.11):

REGISTER NOW!

Implementing the Genetic Information Non-Discrimination Act
- Attend In-Person or Online    -

Register Now: http://www.ilr.cornell.edu/edi/register/policyforum.cfm

Date:  Tuesday, February 1, 2011
Time: 10:00 AM to 12:00 PM 
 
Location:  Cornell University Government Affairs Office
Hall of States, Room 383
444 North Capitol Street, Northwest
Washington, DC 20001

Introduction: Susanne Bruyère, Cornell University, Employment and Disability Institute
Facilitator: Robin L. Shaffert, Senior Director of Corporate Social Responsibility, AAPD

Speakers: 

• Chai Feldblum, Commissioner, EEOC
• Victoria A. Lipnic, Commissioner, EEOC
• Mike Aitken, Director of Government Affairs, SHRM
• Susannah Baruch, Policy Analyst and Consultant, Genetics and Public Policy Center, John Hopkins University

Contact:  Sara VanLooy, Cornell University Employment and Disability Institute
email: sav22@cornell.edu
telephone: (607) 254-6581

>>>Download Genetic Informtion Policy Forum Flier

We request that you register online to ensure adequate seating, security clearance and request any necessary accommodations. You can register at: http://www.ilr.cornell.edu/edi/register/policyforum.cfm. You can attend the Policy Forum in person or via webinar.

The content of this forum does not necessarily reflect the policies of the US Dept. of Education, and you should not assume endorsement by the Federal Government (EDGAR, 75.620 (b)). This project is funded by the US Department of Education, National Institute on Disability and Rehabilitation Research. Grant Number: H133B040013.

Genetic Privacy Manual Available

From The Council for Responsible Genetics (12.1.10):

The consumer is faced with almost daily risks to their genetic privacy from human health and reproductive technologies to the criminal justice system.  The consumer needs an understanding of the science, the privacy risks involved in releasing genetic information in various contexts and the degree of legal and regulatory protection available. The Council for Responsible Genetics’ Genetic Privacy Manual is  a comprehensive, electronic source of information for the consumer on these issues.  The manual can be accessed at the following url: www.councilforresponsiblegenetics.org/geneticprivacy

Just In: AAPD Joins Facebook Causes

From the JFA Moderator:

AAPD recently joined Facebook Causes as a way to get the word out about the disability rights movement and to make it easier for YOU, our dedicated activists, to contribute your support.

Take Action TODAY: Join or Donate to AAPD's Cause on Facebook and share these links with your friends.

>>> To Join the Movement

>>> To Support our Work

Down's Syndrome Fights Cancer

From Reuters (May 20, 2009):

Down's syndrome reveals one key to fighting cancer
By Maggie Fox, Health and Science Editor

People with Down's syndrome rarely get most kinds of cancer and U.S. researchers have nailed down one reason why -- they have extra copies of a gene that helps keep tumors from feeding themselves.

The findings could lead to new treatments for cancer, the researchers reported in the journal Nature on Wednesday, and further study of Down's patients might reveal more ways to fight tumors.

>>> For the Whole Article

Comment Below: I find this fascinating: yet another example of how the world would be less with out the diversity that comes with disability.  What are your reactions?

Paralyzed RI lawmaker hails stem cell decision

Paralyzed RI lawmaker hails stem cell decision
By ERIC TUCKER

PROVIDENCE, R.I. (AP) — Rep. Jim Langevin was 16 years old when a policeman's accidental gunshot severed his spinal cord and left him paralyzed. Though doctors told him he would never walk again, Langevin said he's remained optimistic for a scientific breakthrough that would make it possible.

That's why an executive order Monday lifting federal funding restrictions for embryonic stem cell research has personal meaning for the five-term Democrat. He hopes the science can one day help him ditch his motorized wheelchair and walk on the floor of the U.S. Capitol.

"I've always believed that in my lifetime, someday I would walk again," Langevin, 44, said in a telephone interview after watching President Barack Obama sign the executive order at a White House ceremony. "It just seemed counterintuitive that we wouldn't find a cure for spinal cord injuries."

Obama's announcement reverses Bush administration policy by lifting a 2001 ban on federal funding for new stem cell research. It's not clear how much more federal money will be spent on the research until grants are applied for and issued...

...Langevin said the research, which is still in its early stages, has produced promising results. Stem cells have helped paralyzed rodents move again by helping to regenerate destroyed spinal cord nerve cells and by successfully restoring a nerve fiber insulation that helps conduct electrical impulses along the spinal cord...

...Though hopeful he can walk again, his paralysis has not stopped him from visits to Iraq and Israel, meeting with foreign dignitaries or winning re-election to Congress.

"I think of my disability more as an inconvenience," Langevin said. "Sometimes it slows me down, but it will never stop me."

Comment Below: What do you think of this change in policy?  Is it a victory for science and a renewed hope for many?  or is it a tragedy which violates life? or neither? both?  What do you think its results will be?

Obama Reverses Stem Cell Restrictions: Debate Ensues

President Barack Obama signs an Executive Order on stem cells and a Presidential Memorandum on scientific integrity, Monday, March 9, 2009, in the East Room of the White House in Washington.

(AP Photo/Gerald Herbert)

From an AP article (March 9, 2009):

Obama opens up stem cell work, science inquiries
By SETH BORENSTEIN and BEN FELLER

WASHINGTON – From tiny embryonic cells to the large-scale physics of global warming, President Barack Obama urged researchers on Monday to follow science and not ideology as he abolished contentious Bush-era restraints on stem-cell research. "Our government has forced what I believe is a false choice between sound science and moral values," Obama declared as he signed documents changing U.S. science policy and removing what some researchers have said were shackles on their work...

...Researchers said the new president's message was clear: Science, which once propelled men to the moon, again matters in American life.

Opponents saw it differently: a defeat for morality in the most basic questions of life and death...

...The most immediate effect will allow federally funded researchers to use hundreds of new embryonic stem cell lines for promising, but still long-range research in hopes of creating better treatments, possibly even cures, for conditions ranging from diabetes to paralysis. Until now, those researchers had to limit themselves to just 21 stem cell lines created before August 2001, when President George W. Bush limited funding because of "fundamental questions about the beginnings of life and the ends of science."...

Comment Below: What do you think of this change in policy?  Is it a victory for science and a renewed hope for many?  or is it a tragedy which violates life? or neither? both?  What do you think its results will be? 

Take Action: End Involuntary Sterilization in Illinois

From F.R.I.D.A. (Feminist Response in Disability Activism) (Feb. 25, 2009):

>>> ACTION STEPS BELOW <<<

End Involuntary Sterilization in Illinois Now!
Fact Sheet on House Bill 2290 (Sterilization of Adults with Disabilities Under Guardianship)

Background

In Illinois, the Probate Act of 1975 outlines the general duties for guardianship of an adult with a disability (i.e., a ward).  However, currently there are no guidelines for when a guardian seeks to have the ward sterilized.  As a result, the involuntary sterilization of people with disabilities can be abused.  It is possible for a guardian to violate a person’s basic right to not be sterilized without knowledge and/or consent.  Most states in the U.S. have due process protections to prevent this extreme, irreversible and dehumanizing situation… but unfortunately Illinois is still one of 16 states lacking any protections against sterilization without consent.

What Has Been Happening without HB 2290

-    One guardian (the mother of the ward) did not seek the court’s authority to consent to her daughter’s involuntary sterilization. The intent of the guardian to have the woman sterilized was discovered when her father received notice that his insurance policy would not cover such a procedure. The father then interceded on his daughter’s behalf.

-    The guardian of a young woman with a traumatic brain injury filed a petition to have her involuntarily sterilized.  The woman had no knowledge of the pending petition, even though she had been using different kinds of contraception successfully for years, and expressed the desire to get married and raise a family one day.

Because Illinois law does not require a guardian to file a petition under these circumstances, many of these cases never come before the court.  Instead, the guardian and the physician make the decision for the ward, without any independent representation or protection of the ward’s interests.

Note: Many parents of adult children with disabilities are not the legal guardians of their children (although they may think that they are), and have NO legal authority to seek sterilization of their adult children.  However, physicians unaware of this fact may agree to do a sterilization based on the parent’s consent, without realizing what they are doing is illegal.

So How Does HB 2290 Address This Problem?

HB 2290 updates the Probate Act of 1975 by adding a new section which says that:
-    The guardian must file a motion requesting the court’s authority to consent to the sterilization procedure (except when a procedure is necessary to save the ward’s life or to prevent harm to the ward);
-    An independent counsel should be appointed if the court finds it best serves the ward’s interest or if requested by the ward, or if the ward objects to sterilization;
-    The court should seek a medical and psychological evaluation of the ward;
-    A determination by the court of the ward’s capacity to consent or not consent to the proposed sterilization:
-    If the ward has such capacity, there must be an entry of an order that respects the ward’s decision;
-    If the ward lacks such capacity, there must be a determination of the ward’s desire regarding the proposed sterilization.  If the ward has not clearly expressed a desire for sterilization, there must be proof of specific factors by clear and convincing evidence;
-    If the court determines the ward lacks such capacity, there must be a determination of the ward’s best interest in accordance with certain standards; and
-    The resulting court order will include written findings of fact and conclusions of law.

TAKE ACTION: So what can you do to help?              

We need this bill to pass the Illinois House of Representatives NOW!

1.  Look up your rep at
http://www.elections.il.gov/DistrictLocator/SelectSearchType.aspx?NavLink=1. 

Right now, we especially want to reach representatives who are on the Judiciary Civil Law Committee
(http://www.ilga.gov/house/committees/members.asp?committeeID=595). 

2. Contact your state representative and ask them to sponsor H.B. 2290 TODAY!

3. If you are with an organization, have your organization join our FRIDA website list to support H.B. 2290! 

Organizations Supporting H.B. 2290: FRIDA, Equip for Equality (special thanks to EFE for providing the information on this fact sheet), and the ACLU of Illinois.

For more information, or to sign onto our list of organizations supporting H.B. 2290, visit www.ourfrida.org, or contact FRIDA member Michelle Robbins at (915) 496-5468 or
free_our_people@yahoo.com. 

New Prenatal Downs Syndrome Tests Raise Concern

Excerpts from the Washington Post (Feb. 26, 2009):

New Safety, New Concerns In Tests for Down Syndrome
By Rob Stein

A handful of biotech companies are racing to market a new generation of tests for Down syndrome, a development that promises a safer way to spot the most common genetic cause of mental retardation early in pregnancy even as it weaves a thicket of moral, medical, political and regulatory concerns...

...With the first new approach due to become available this spring, the tests are renewing questions about why regulators do not require such innovations to be proved reliable before being offered to the public.

Abortion opponents, meanwhile, fear that the technology may prompt more couples to terminate pregnancies. And advocates for the disabled, noting that couples are often poorly informed about the syndrome, worry that more of them may feel pressured to abort. They also fear a dwindling number of those born with the condition, along with the prospect of increased discrimination against them and their families.

"We have a history in this country of a eugenics movement where people tried to eliminate certain people from the gene pool," said Andrew J. Imparato of the American Association of People With Disabilities. "People could start wondering, 'How did you get born?' " ...

...The new tests for Down syndrome come as advocates pressure Congress to fund a law passed last year aimed at ensuring that couples get accurate information about genetic conditions and at providing support for women who decide to keep their affected children or put them up for adoption.

"These tests make this all the more important," said Madeleine Will of the National Down Syndrome Society, which is seeking $25 million over five years to implement the legislation. Society members are gathering in Washington this week to lobby on this and related issues...

>>> For the Full Article