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The Arc Reacts to New Book on Pregnancy Risks, Including Drinking Alcohol: “Why Risk It?”

/in /by The Arc

The news media is paying attention to a soon-to-be released book, “Expecting Better: Why the Conventional Pregnancy Wisdom is Wrong—and What You Really Need to Know,” by Emily Oster, an associate professor of economics at the Booth School of Business at the University of Chicago. As the leading organization supporting people with Fetal Alcohol Spectrum Disorder (FASD), The Arc is pushing back on the claims put forward in this book that could lead women to believe that light drinking during pregnancy is statistically safe. Oster is not a medical professional, and the medical community has a clear position on this issue – there is no safe amount of alcohol that can be consumed while pregnant.

“Why risk it? That’s the question we should be encouraging women to ask themselves when they consider drinking alcohol while pregnant. According to the U.S. Surgeon General, the nation’s top doctor, there is no absolute safe amount of alcohol that a woman can drink during pregnancy without risk of harming her unborn baby. FASD is 100% preventable, yet books like this one give the irresponsible impression that the odds of a drink here or there affecting your child aren’t high enough for women to choose to abstain from drinking alcohol while pregnant,” said Peter Berns, CEO of The Arc.

What is FASD?

FASD is an umbrella term describing the range of effects that can occur in an individual whose mother drank alcohol during pregnancy. These effects can include physical, behavioral, mental and/or learning disabilities with possible lifelong implications. It is identified by abnormal facial features, central nervous system problems and slowness of growth, and occurs when pregnant women drink alcohol and pass the alcohol along to their unborn babies through the blood stream. FASD can cause physical and mental disabilities of varying levels of severity, including intellectual disability. It is often a “hidden disability” that is not easily recognizable, making it difficult to provide affected individuals and their families the supports they desperately need.

What are other disorders linked to drinking while pregnant?

FASD covers other terms such as: FAS (Fetal Alcohol Syndrome), ARND (Alcohol-Related Neurodevelopmental Disorder), ARBD (Alcohol-Related Birth Defects) and FAE (Fetal Alcohol Effects). FAS is the most identifiable and serious disability under the FASD umbrella, although it only accounts for approximately 25% of all alcohol-related effects. FAE is a term often used to describe someone whose condition does not meet the full criteria for an FAS diagnosis.

The data affirms the national recommendation to not drink while pregnant

The CDC doesn’t know exactly how many people are affected, however their studies have shown that between 0.2 to 2.0 cases of FAS occur for every 1,000 live births in the U.S. (this statistic focuses on FAS only, not FASD).

When the number of people with FASD are included in that data, the National Organization on Fetal Alcohol Syndrome states that approximately one in 100 children are affected by FAS or FASD. This is based on a study from the University of Washington that refer to this as a conservative rate, affirming the belief of many health professionals that fetal alcohol exposure is a serious problem in the United States.

According to the federal Substance Abuse and Mental Health Administration, for one individual with FAS, the most severe form of FASD, the lifetime cost of care is estimated at $2 million. For our nation as a whole, the cost may be as high as $6 billion each year.

While there is no safe time period in a pregnancy to drink, recent research shows that between weeks six and twelve of a pregnancy, a baby is particularly susceptible to harm from drinking alcohol, showing an increase in certain facial features of FAS, in addition to lower birth weight and length.

“What you don’t know can, in fact, hurt you and your baby – for a lifetime. There is no safe amount you can drink and still protect your child’s health, and dissecting data to prove otherwise will only increase the number of kids affected. This is a societal problem that is within our power to tackle, as long as we carefully listen to all the facts,” said Berns.

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The Arc Applauds National Governors Association for Work to Promote Employing People With Disabilities

/in /by The Arc

At the recent National Governors Association (NGA) meeting, outgoing NGA Chair Governor Jack Markell (DE) wrapped up his year-long Chair’s Initiative, “A Better Bottom Line: Employing People with Disabilities.” The initiative focused on the employment challenges that affect individuals with intellectual and other significant disabilities and the role that both state government and business can play in facilitating and advancing opportunities for employment. At the NGA meeting, Governor Markell released a final Blueprint for Governors summarizing the initiative’s activities, findings, and recommendations.

“Governor Markell’s initiative has brought attention to an issue that is too often ignored in our society – what people with disabilities can do in the workplace. People with disabilities, including people with intellectual and developmental disabilities, are an integral part of our economy. The Arc is thrilled with Governor Markell’s leadership to raise the profile of this important issue to the governors across the country. Chapters of The Arc, found in 700 communities across the country, are ready to support states that make employment for people with disabilities a priority,” said Peter Berns, CEO of The Arc.

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Disability Advocates and Professionals to Descend on Bellevue for The Arc’s Annual Convention

/in /by The Arc

Next week, The Arc’s National Convention will kick off in Bellevue, Washington with more than 500 disability advocates, professionals, and people with intellectual and developmental disabilities (IDD) coming together to learn, forge connections, and energize the disability movement. The theme, Achieving Momentum, captures what The Arc is all about – empowering people with IDD to achieve their dreams by continuously moving forward on issues that help them achieve independence and be included in society.

“The Arc’s convention is a once a year chance to bring our network of 700 chapters and their members and professionals together for a unique experience. This year, we have a wonderful array of sessions focused on family relationships, technology, and advocacy, and plenty of opportunities for attendees to learn from each other and have some fun,” said Peter Berns, CEO of The Arc.

This three day event, which will take place from August 3-5, will include:

  • a keynote address by award-winning author Buzz Bissinger, whose recent book Father’s Day chronicles his relationship with son Zach, who has multiple disabilities;
  • honoring Illinois Governor Pat Quinn with our Advocacy Matters award for his work to offer people with IDD the opportunity to live in a community of their choice;
  • a special visit via video by Andrew Jenks, creator of MTV’s World of Jenks, a documentary style show that features a young man with autism as he transitions from high school to the world of work, dating, and being an adult. Jenks is this year’s recipient of The Arc’s Image and Inclusion Award for positive portrayal of people with IDD in the media;
  • a technology emphasis with guest speakers from Verizon, a sponsor of this year’s convention, and Microsoft, and the opportunity for attendees to have a hands-on technology experience at the Microsoft store, in Bellevue Square Mall, during a private class just for attendees ; and
  • Red Hot on the Red Carpet and The Arc & Sprout National Film Festival. We’re rolling out the red carpet again as a lead-in to our always popular film festival featuring shorts for, by and about people with IDD.

“We are excited to serve as the local host committee for The Arc’s national convention. This marks the first time this national event has returned to our state since 1956. The Arc of Washington State is proud to have been instrumental in establishing the national organization over 60 years ago, and we look forward to many more years of growth and positive change that such a strong national partnership brings,” said Sue Elliott, Executive Director of The Arc of Washington State.

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The Arc Applauds Stay of Execution of Warren Hill, Vows to Continue Legal Advocacy Efforts

/in , /by The Arc

Washington, DC – This evening, the state of Georgia was scheduled to execute Warren Hill, a man who experts unanimously determined has an intellectual disability, which should have ruled out the death penalty per a 2002 Supreme Court ruling, Atkins v. Virginia. But this afternoon, a Fulton County, Georgia judge stayed the execution and scheduled a hearing for this Thursday to hear the defense team’s challenge of the constitutionality of a new state law that shields the identities of the lethal injection drug’s manufacturer and physician who prescribes it.

“Today, Georgia came too close to ignoring experts and crossing the line drawn by a more than decade-old Supreme Court ruling protecting people with intellectual disability in our justice system. While we breathe a sigh of relief for now, this battle is far from over for Mr. Hill and many more people with disabilities who may be at risk of unjust punishment. This stay of execution was granted on another state legal matter in the case, not Mr. Hill’s disability. The Arc is committed to fighting for the rights of people with intellectual and developmental disabilities, and we will continue our legal advocacy work to make sure that the U.S. Supreme Court ruling on this issue is followed in jurisdictions across the country,” said Peter Berns, CEO of The Arc.

Hill’s legal team had also appealed to the U.S. Supreme Court to step in to stop the execution on the grounds of the Atkins v. Virginia decision, while simultaneously pursuing the state law issue. The U.S. Supreme Court has not responded to this request yet.

The Arc, the nation’s largest civil rights organization for people with intellectual and developmental disabilities (IDD), has been involved in this case filing an amicus brief before the Supreme Court in earlier proceedings, and supporting Hill’s defense team through letters to the Georgia Board of Pardons and Paroles and the District Attorney urging his sentence be commuted to life without parole. In this most recent effort, The Arc called for the Supreme Court to step in and issue a stay to prevent the state of Georgia from executing Hill.

In 2002, the Supreme Court ruled in the Atkins v. Virginia case that executing inmates with intellectual disability (ID) is unconstitutional. But in Georgia, ID must be proven “beyond a reasonable doubt” by the defendant, the strictest standard in the country.

 

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Governor Quinn Earns Top National Honor as “Champion” for People With Disabilities

/in /by The Arc

Illinois’ Rebalancing of the Disability System Cited as a “Model for the Nation”

CHICAGO – Governor Pat Quinn is being recognized by The Arc of the United States for his work to offer people with intellectual and developmental disabilities the opportunity to live in a community of choice.  The Advocacy Matters! Award is The Arc’s most prestigious honor and presented to those who demonstrate the ability to promote and protect the civil and human rights of people with disabilities and increase resources, services and supports that promote their full inclusion and participation in the community. Governor Quinn has been a long time advocate for people with disabilities, and this award acknowledges his leadership in closing state institutions and shifting resources to offer people with disabilities the opportunity to live more independently and thrive in their communities.

The nominating petition further credited Governor Quinn for signing a Consent Decree that will move 3,000 individuals with disabilities off the state’s waiting list and provides the choice of small community living options to the 7,000 people who live in Intermediate Care Facilities for people with Developmental Disabilities (ICFDD’s).

“Everyone in Illinois – regardless of the challenges they face – deserves the opportunity to reach their full potential,” Governor Quinn said. “We are changing the status quo in our state from an over-reliance on outdated institutions to investing in community, in people and in their potential.

It is an honor to receive this recognition as we keep working on our mission of improving care for people with disabilities, so they can lead more independent and fulfilling lives.”

The Arc of Illinois nominated Governor Quinn in May citing his tireless efforts to “bring Illinois out of the dark ages” and set the tone for “best practices to make life better for people with intellectual and developmental disabilities.”

“This is a Governor that does things for the right reasons and is relentless in his determination to put people with disabilities before politics,” says Tony Paulauski, executive director of The Arc of Illinois. “Governor Quinn’s vision in rebalancing the disability system is a model for the nation and one that all Illinoisans can be proud of.”

In 2009, the Governor began collaborating with disability advocates throughout the state to develop a person-centered plan to help people with disabilities reach their full potential by providing funding and resources for them to live in the community with the proper supports and services. Two years later he announced his Rebalancing Initiative, including plans to close state institutions and provide community living options for more than 900 people. Two state institutions have been closed to date and Murray Developmental Center in Centralia is scheduled to close later this year.

In May, the General Assembly passed House Bill 2591, a bill that will make Illinois an Employment First state, a priority outlined in Governor Quinn’s 2013 State of the State Address. Governor Quinn will be signing the bill into law Tuesday at an event celebrating the 23rd anniversary of the Americans with Disabilities Act.

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Supreme Court Must Act to Save Georgia Man With Disability From Imminent Execution

/in , /by The Arc

Washington, DC – With just a few days before the scheduled execution of Warren Hill in Georgia, The Arc calls for the Supreme Court to step in and issue a stay to prevent the state of Georgia from executing Hill who experts have unanimously determined has an intellectual disability.

“Warren Hill is nearly out of time, and the Supreme Court has an obligation to act before his life is taken away from him unjustly. The facts speak for themselves – experts have unanimously agreed that he has an intellectual disability, and the Supreme Court has ruled that people with intellectual disability cannot be executed. There is no room for interpretation – the Supreme Court must act,” said Peter Berns, CEO of The Arc.

In 2002, the Supreme Court ruled in the Atkins v. Virginia case that executing inmates with intellectual disability (ID) is unconstitutional. But in Georgia, ID must be proven “beyond a reasonable doubt,” one of the strictest standards in the country. The Arc participated in an amicus brief before the Supreme Court in earlier proceedings in this case, and supported Hill’s defense team through letters to the Georgia Board of Pardons and Paroles and the District Attorney urging his sentence be commuted to life without parole.

“The entire disability community will be watching for the Supreme Court to issue a stay in this case. It’s the right thing to do, and it upholds the Court’s previous ruling that executing a person with an intellectual disability is unconstitutional,” said Berns.

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The Arc in Nevada’s Self-Advocacy Coordinator Honored for Impact on Disability Movement

/in /by The Arc

Yesterday, The Arc in Nevada’s Santa Perez was presented with The National Association of Councils on Developmental Disabilities’ (NACDD) Champions of Equal Opportunity (CEO) Award for 2013. Delaware Governor Jack Markell is NACDD’s other CEO Award recipient this year for his work as the Chair of the National Governors Association where he is promoting employment for people with disabilities nationwide.

Perez joined The Arc in Nevada as Self-Advocacy Coordinator in 2012. In her role, she focuses on ensuring self-advocates, or people with disabilities who advocate on their own behalf for their rights, in Nevada have the information and access they need to become engaged in advocacy activities through The Arc in Nevada’s “Growing a Grassroots Movement” project.

Originally from Southern California, Perez earned her Bachelor of Arts degree in Psychology at California State University, Northridge. She owns her own home and lives with her son Noah and companion Timothy Brown in Las Vegas, Nevada. A true champion of rights for Nevada’s citizens with intellectual and developmental disabilities (IDD), she leads various trainings and workshops and serves as a client advocate. In addition to her position with The Arc in Nevada, Perez currently serves as the Statewide President of People First of Nevada.

“I am so honored to be receiving this award along with Governor Jack Markell. I don’t do what I do for recognition like this – I do it because I love to empower self-advocates. This award inspires me to work harder than ever to help others ensure that their voices are heard in Nevada and across the country,” said Perez.

The Arc in Nevada’s “Growing a Grassroots Advocacy Movement” program is funded by the Nevada Governor’s Council on Developmental Disabilities. Through this program, The Arc of the United States is working to develop long-term capacity for advocates to have input and impact on issues of importance to people with IDD and their families. This project started in 2011, and marks the first time The Arc has had a statewide presence in Nevada since the mid-nineties.

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The Arc Responds to New Study That Highlights Housing Crisis for Individuals With Disabilities on Supplemental Security Income

/in /by The Arc

Washington, DC – This week, the Technical Assistance Collaborative (TAC) and the Consortium for Citizens with Disabilities (CCD) Housing Task Force released a study, “Priced Out in 2012.” This publication is released every two years. The 2012 results show that the national average rent for a modestly priced one-bedroom apartment is greater than the entire Supplemental Security Income (SSI) benefit for a person with a disability. The Arc’s 700 chapters have a long history of supporting community living for individuals with intellectual and developmental disabilities (IDD). Many chapters of The Arc provide programs and services to assist individuals with disabilities who are looking to rent or buy a home or find other community living opportunities.

“This study highlights a growing problem for individuals with disabilities – the lack of accessible and affordable housing. People with disabilities deserve the opportunity to live independently in the community with their peers, though as highlighted by Priced Out in 2012 SSI beneficiaries face severe obstacles to that opportunity. While progress has been made in the last year with the new Section 811 PRA Demonstration, we still have a long way to go. Having a safe place to call home is a basic human right and we have a responsibility to ensure individuals with disabilities are given the chance find a home in the community they choose. The Arc calls on Congress to adequately fund the Section 811 PRA Demonstration to help address the housing crisis for people with disabilities,” said Peter V. Berns, CEO of The Arc.

SSI is a federal program that provides income to people with significant and long-term disabilities who are unable to work and have no other source of income. According to Priced Out in 2012, a single person with a disability living in the community received an average monthly SSI payment of $726 in 2012 to cover all basic needs, including housing. The study also revealed that as a national average, people with disabilities receiving SSI needed to pay 104 percent of their income to rent a one-bedroom unit priced at the Fair Market Rent. The full results of the study can be viewed on the TAC website.

The Department of Housing and Urban Development (HUD) Section 811 Project Rental Assistance (PRA) Demonstration program is an innovative new model that allows states to effectively target rental assistance to enable people with significant disabilities to live in the community. Section 811 is the only HUD program dedicated to creating inclusive housing for extremely low-income people with severe disabilities, including SSI beneficiaries.

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The Arc Reacts to Historic Verdict on Behalf of Workers With Intellectual Disabilities

/in /by The Arc

Washington, DC – Earlier this week a Davenport, Iowa jury awarded damages totaling $240 million to 32 men with intellectual and developmental disabilities who worked for Henry’s Turkey Service in Atalissa for decades. It was the largest verdict in the history of the U.S. Equal Employment Opportunity Commission (EEOC), which filed the case, for disability discrimination and unlawful harassment. Just one day after hearing closing arguments, the jury agreed with the EEOC that Henry’s Turkey Service subjected the men to severe harassment and discrimination that warranted punitive and compensatory damages for each man.

“While this verdict is a victory for the workers who can feel triumph knowing that the abuse they faced did not go unpunished, it’s also a harsh reminder to the disability movement that we must continue to be vigilant in this modern era of progressive employment practices to guard against these kinds of atrocities. The abuse of these men didn’t end decades ago – it was still going on as recently as 2009, and that is unacceptable. I applaud the U.S. Equal Employment Opportunity Commission for their pursuit of justice for people with disabilities in the workplace and urge them to continue this important work. Individuals with disabilities have the right to work in a safe work environment free of exploitation, and this verdict sends a message that this kind of abuse will not be tolerated,” said Peter Berns, CEO of The Arc.

Last year, EEOC claimed that Henry’s Turkey Service violated the Americans with Disabilities Act (ADA) by paying 32 workers with intellectual disabilities severely substandard wages. The company denied the workers their full wages by claiming a “credit” for substandard living conditions. In September 2012, a district court judge ordered the company to pay its former employees a total of $1.3 million for jobs they performed at a turkey processing plant in West Liberty, Iowa between 2007 and 2009 for about 41 cents an hour. Combining last year’s ruling and this week’s verdict, the total judgment in this case is $241.3 million.

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Fact Checking NPR: The Real Story About Social Security and People With Disabilities

/in /by The Arc

A huge buzz has come out of a story called “Unfit for Work: The Startling Rise of Disability in America” that ran last week on This American Life and this week on National Public Radio (NPR). While this story about Social Security and people with disabilities raises interesting questions, it’s also very incomplete, and perpetuates negative stereotypes and misunderstandings about people with disabilities. The Arc’s network knows better!

Members of The Arc and families served by us know that Social Security disability programs provide an essential lifeline that keeps millions of Americans with severe disabilities from homelessness and deep poverty. About 1 in 5 Americans live with a disability, and this report failed to show the importance these programs play in many of their lives.

Additionally, “Unfit to Work” failed to mention many of the key facts about these programs. Many listeners were left with the impression that the disabilities that qualify people for Social Security and Supplemental Security Income (SSI) are “squishy,” and that the “federal disability programs have become an extremely expensive default plan” for low-income Americans.

In reality, Social Security and SSI disability benefits are only available to children and adults with the most severe disabilities – it’s hard to qualify, and it can often take years. The recent growth in the programs is largely explained by demographics, and program costs are manageable. The Arc does support many improvements to these programs to make them better for beneficiaries and to strengthen their financing – and we also know they are a lifeline that must be preserved.

To learn more about this report and the inaccuracies in it please read this letter from The Consortium for Citizens with Disabilities, which The Arc has signed, and other perspectives:

Also, if you want to take action and tell NPR the real story about Social Security and individuals with disabilities, visit our action center.