JFActivist

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

Genetic Discrimination Ban Gains Ground

From the Washington Post (Feb. 26, 2009):

Rules Target Genetic Bias
By Steve Vogel

The federal government took a big step yesterday toward implementing a ban on genetic discrimination in hiring and promoting workers, a move that will expand the bounds of anti-discrimination law beyond the traditional realms of age, race, religion, sex and disability.

The new law, which bars discrimination by insurers and employers based on genetic test results, represents the first legislative expansion of employment discrimination law since the 1990 Americans With Disabilities Act.

At a hearing yesterday at its headquarters, the Equal Employment Opportunity Commission presented proposed rules for enforcing the Genetic Information Nondiscrimination Act, signed into law last year after a legislative struggle that lasted more than a decade...

...Andrew J. Imparato, president of the American Association of People With Disabilities, told the commission that the new law must be publicized. "We want to be able to tell people who are thinking about having a test that the results will not be used in a way that harms them in their current job or future jobs," he said...

>>> For the Whole Article

Top 10 Disability Events of 2008

Contributed by Day Al-Mohamed via her blog Day in Washington (Feb. 11, 2009):

Top Ten Disability Events of 2008

This episode is a restrospective of the top ten disability events of 2008.  Listed in order of importance, this podcast asks listeners/readers to respond to the question:  What is YOUR #1 Disability Event for 2008?

2008 was a pretty busy year for the disability community. There were many policy issues and disability events that took place, that will have an impact for a long time to come. Today’s podcast is my list of the Top Ten Disability Events of 2008.

So let’s get started – the Top Ten Disability Events for 2008

Number 10. Students with Disabilities in Advanced Coursework

Number 9. The Medicaid Moratorium.

Number 8. The PreNatally and Postnatally Diagnosed Conditions Awareness Act.

Number 7. U.S. Treasury Lawsuit (ACB demands accessible currency)

Number 6. Ratification of the Convention on the Rights of People with Disabilities or CRPD.

Number 5. Mental Health Parity.

Number 4. Importance and Emphasis on Media and Disability: Tropic Thunder, Blindness and SNL

Number 3. ADA Amendments Act

Number 2. The Genetic Information Non-Discrimination Act.

Number 1. Presidential Campaigns and the Courting of the Disability Vote.

That’s my list. What do YOU think was the Number 1 Disability Event of 2008? This is Day Al-Mohamed with your Day in Washington Disability Policy Podcast hoping that you stay well and stay informed. For more information on each of these events and on disability policy please check: DayInWashington.com

Comment Below: Should the medicaid moratorium be higher on the list? The UN convention lower?  Is there something missing from this list altogether?  Post your top 10 most important disability events of 2008 below.

Disability Groups Send Recommendations to Obama

December 22, 2008

 

President-Elect Barack Obama

Presidential Transition Team

Washington DC

 

Dear President-Elect Obama:

 

I write on behalf of a coalition of national consumer-led disability organizations to share some of our collective policy priorities for your new Administration.  Many disability organizations have been and will be sharing more specific recommendations that reflect their organizational priorities, but we wanted to work together on a joint document to highlight the areas that are of common interest and concern.  The process that led to the development of this document began with an advanced leadership forum in October in Boston (organized by the Boston Center for Independent Living) that brought together disability leaders from around the country to explore together how to strengthen our movement and cultivate new leaders.  The individuals who participated in that Fred Fay Advanced Leadership Forum then reached out to the leaders of national disability consumer organizations, and we decided collectively to work on this joint letter.

 

We stand committed to working with your Administration and an even larger coalition of disability and civil rights organizations to move forward on our common policy agenda.  As you work to fine-tune and implement your Plan to Empower Americans with Disabilities, we urge you to do so in partnership with organizations that are run by people with disabilities and that have strong grassroots constituencies like the groups that have come together to produce this letter.   In our experience, disability policy and public policy more generally works better when it comes from the constituencies that are its intended beneficiaries.

 

Thank you for your leadership on disability issues, and thank you for the opportunity to share our agenda as we enter into a period of extraordinary opportunities and challenges.

 

Sincerely,

 

Andrew J. Imparato

President and CEO

American Association of People with Disabilities

Dear President-elect Obama,

Congratulations on capturing the hearts, minds, and hopes of our nation! As grassroots, community-based, consumer-controlled disability organizations, which collectively represent over 50 million Americans with the full spectrum of disabilities, we look forward to working with you and your administration to make cost-effective policy changes to enhance the lives of and restore the civil liberties Americans with disabilities. 

 

Attached you will find nine summaries of the top policy issues facing Americans with disabilities. Taking action on your commitment and these policy measures will not only benefit citizens with disabilities, our nation’s wounded warriors, and the ever-growing aging population, it will benefit all Americans and save our government millions of dollars as individuals with disabilities become full participants in society.  

 

They include:

·         Employment: Reversing the persistently high percentages of people with disabilities who are not working but are ready, willing and able to work;

·         Education: Increasing access and opportunities for physical activity, and improving quality;

·         Health Care: Improving access and decreasing disparities and inequities;

·         Home and Community-based Services (HCBS): Promoting effective community-based services as alternatives to costly nursing homes and other institutions and increase the FMAP to states;

·         Disability Research: Promoting a quality of life and participation-based research agenda;

·         Civil Rights: Reinvigorating civil rights enforcement, extending access requirements to new technologies, and continuing to restore protections stripped away by hostile courts;

·         Human Rights: Protecting human rights of individuals with disabilities at home and abroad;

·         Emergency Preparedness, Response and Recovery Needs: Planning, coordinating, and providing resources to support people with disabilities before, during, and after a crisis; and

·         Genetic Science and Technology: Promoting ethical use of new technologies.

Like you, we stand and sit on the shoulders of so many who have come before us. As our nation approaches the 20^th anniversary of the Americans with Disabilities Act in 2010, we embrace the disability rights principle, “Nothing About Us, Without Us.” For too long others claimed the need to speak for us, but no other group -  professionals or relatives - speak for us.

Additionally, we urge you to embrace the fundamental principles for sustainable change, which are essential elements to building healthy, resilient, empowered communities.  As you move forward with deliberate speed and consideration, we urge your administration to:

·         Provide oversight of federal agency public policy, regulatory, and enforcement actions, and collaborate with consumer and community-based disability organizations as partners to better serve the ever-expanding population of more than 50 million Americans with disabilities;

·         Hire qualified professionals with disabilities, who have expertise in policy areas, throughout the administration, including a Special Assistant to the President on Disability Policy;

·         Include individuals with disabilities in policy formation in all areas addressed by the administration, and integrate representatives of our community on all advisory boards of all major agencies;

·         Provide services that serve people with disabilities across the life span, from cradle to grave, and all those with increased needs for health care, health promotion, and long-term services and community-based supports;

·         Incorporate consumer-directed services and include consumers in policy development;

·         Embrace the disability experience as part of culturally competent policy and diversity at all levels of planning, policy formulation, implementation, and evaluation; and

·         Focus on “universal design” as a cost-effective innovative way to enhance the quality of life and level of participation of all Americans in community life and incorporate it into infrastructure changes in the economic stimulus package so we upgrade the infrastructure for all to use; 

 

Thank you for your support of the need for the federal government to be “diligent about making sure the states enforce the rights affirmed by the Olmstead decision.” Enabling people with disabilities to live independently in their own homes and communities, rather than being forced into costly Medicaid-funded nursing homes and other institutions will ensure civil liberties, enhance the quality of life and full participation of all Americans by creating stronger, sustainable communities of inclusion and acceptance to honor the 10^th Anniversary of the Olmstead decision.

As a community of individuals with disabilities, we ask for nothing more than what other Americans expect and already have. We seek inclusion. We seek a voice for the disability rights message in the change you create. As you create more jobs for Americans, include jobs for Americans with disabilities. As you improve education for America’s students, include students with disabilities. As you improve the healthcare system, include the healthcare needs of individuals with disabilities. As you restore civil rights to Americans, include the civil rights of individuals with disabilities. To paraphrase your now immortal words, - We are not a nation of disabled and non-disabled Americans. We are the United States of America.

We stand ready to work with you and look forward to an opportunity to discuss our priorities with you personally in the coming months.

 

Sincerely,

American Association of People with Disabilities (AAPD)

Access Living

American Disabled for Attendant Programs Today (ADAPT)

Autistic Self Advocacy Network

Boston Center for Independent Living (BCIL)

California Foundation for Independent Living Centers (CFILC)

Disability Rights Education and Defense Fund (DREDF)

Generations Ahead

Little People of America

Metro-West Center for Independent Living (MWCIL)

National Association of the Deaf (NAD)

National Coalition for Disability Rights (NCDR)

National Coalition of Mental Health Consumer Survivor Organizations

National Council on Independent Living (NCIL)

National Empowerment Center

National Federation of the Blind (NFB)

Self Advocates Becoming Empowered (SABE)

Special Olympics

Texas State Independent Living Council (TX SILC)

World Institute on Disability (WID)

Attachments

For Policy Recommendations on each policy issue click links above

Disability Groups Send Transition Team Genetic Science and Technology Policy Recommendations

From Transition Letter Attachment Sent by AAPD and a Coalition of Consumer Controlled Organizations (12/22/08):

Genetic Science and Technology

 

Background:

 

·         Society is rapidly increasing its use of genetic technologies, including prenatal genetic testing and screening, trait selection, stem cell therapy, and personalized medicine. Individuals increasingly face complex decisions about how to use genetic technologies.

·         The general public’s understanding of what it means to have a disability or raise a child with a disability is limited. Physicians, genetic counselors, personalized genomics companies, friends, family, and the media may offer limited information which often provides a medical prognosis without the context of life experiences of people with disabilities.

·         Income, geography, and language often limit access to genetic technologies, leading to disparities in the use of genetic testing, therapies, and other treatments.

·         Genetic technology policy discussions often assume the need to prevent or cure disability without contextualizing the issue in a broader discussion of funding priorities for supports and services.

Long Term Goals:

 

·         Convene a national summit to develop a consensus protocol for assessing the impact of genetic technology policy on people with disabilities, considering the impact - not simply the intent - of policy, practice, and regulation and include leaders of the disability community.

·         Assure all administration policies affirm the rights and values of people with disabilities, support the autonomy of women and families, and promote an ongoing dialogue.

Short Term Goals:

 

·         Hire and appoint people with disabilities who have worked with prominent consumer-controlled disability organizations and have expertise in genetic and related ethical issues, to the Office of Science and Technology Policy and the President’s Council on Bioethics.

·         Ensure active participation of people with disabilities as leaders in the debates surrounding genetic technologies, challenging assumptions about the need to prevent, cure, or eliminate disability by appointing them to decision-making agency and interagency bodies.

·         Seek appropriate funding to implement the Prenatally and Postnatally Diagnosed Conditions Awareness Act, with leadership from national consumer-controlled disability organizations to gather information about living with intellectual, developmental, physical, visual, auditory, sensory, and mental health disabilities, and distribute in accessible formats and multiple languages.

·         Implement the Genetic Information Nondiscrimination Act (GINA) with leadership from consumer-controlled disability organizations that have expertise in living with genetic conditions.

·         Ensure that all genetic research goes forward with a proper understanding of the ethical issues involved and sufficient support to positively affect the quality of life of people with disabilities.

·         Fund research to explore the social and demographic consequences of genetic testing and selective abortion/implantation on disability populations and the general population.