Love is in the Air – Media Profiles People with Disabilities in Marriage and Parenting

Washington, DC – As we approach Valentine’s Day, today two major media outlets released heartwarming profiles of people with intellectual and developmental disabilities (I/DD) achieving their dreams – falling in love, getting married, and being a parent.

Today, the Washington Post released a lengthy profile of Bill Ott and Shelley Belgard, a couple from Maryland who were married in September after a long courtship.  Bill and Shelley met as teenagers, dated, and re-connected later in life.  Bill has Down syndrome and Shelley has hydrocephalus.  But no disability could keep them apart, and today, Bill and Shelley are married, living independently with supports, working in the community, and enjoying their lives together.

“Bill’s and Shelley’s path to marriage is not unlike many others who fall in love, lose touch as life takes its turns, and reconnect later in life when the time is right.  They have a love that is as true as anyone else’s, and with support from family and the community, they are living their dream.  The reality is not everyone has access to all the support and resources that Shelley and Bill have had, but when people with disabilities are given the tools they need to succeed, look at what is possible – a life like yours and mine,” said Peter Berns, CEO of The Arc.

NPR also ran an interview this morning with Bonnie and Myra Brown, a mother and daughter from Lansdowne, Pennsylvania.  Bonnie is a single mother raising 15 year old Myra, and Bonnie has an intellectual disability.  Myra is grateful for her mother’s love and guidance, and the interview with them is so moving that the radio host is heard choking up.

“Raising a child is a wonderful experience that comes with challenges for any parent.  Bonnie and Myra’s touching story is proof that people with intellectual and developmental disabilities can be successful parents when provided proper supports, and they should have the same right to parent as others do,” said Berns.

Unfortunately, there is a dark history of discrimination toward individuals with I/DD in our nation and around the world.  This includes the denial of rights and opportunities to have relationships, get married and have their own children.  Earlier this year, The National Council on Disability released a very telling report on the rights of parents who have disabilities.  Four million parents—6 percent of American mothers and fathers—have a disability.  The rate at which children are taken from parents who have intellectual and developmental disabilities is between 40% and 80%.  This report uncovers the heartbreaking reality for too many families across the country – parents with disabilities are treated unjustly when it comes to their rights as parents, and far too many families are broken apart by outdated and discriminatory practices.

The Arc on the Front Lines of Defending Social Security

The Arc’s Peter Berns speaks out in Washington to protect Social Security from harmful cuts in budget negotiations. (at left is Senator Sheldon Whitehouse of Rhode Island)

The Arc’s Peter Berns speaks out in Washington to protect Social Security from harmful cuts in budget negotiations. (at left is Senator Sheldon Whitehouse of Rhode Island)

Many programs vital to people with intellectual and developmental disabilities (I/DD) have been at risk over the last few rounds of budget negotiations.  Right now, Social Security is in danger of cuts because of talk to change the benefit calculation.  This shift to what is called the “chained CPI” would have horrible consequences for people with I/DD, forcing them to make life and death choices.  The Arc’s CEO Peter Berns was invited to speak at a press conference in the U.S. Capitol today, organized by Senator Bernie Sanders of Vermont.  Berns was joined by representatives from other organizations whose constituencies would be impacted by this benefit cut, including AARP, NOW, the AFL-CIO, and Iraq and Afghanistan Veterans of America.

Good morning. I’m Peter Berns, the Chief Executive Officer for The Arc. We are the largest national community-based organization advocating for and serving people with intellectual and developmental disabilities and their families. We have over 175,000 members, and we serve more than 1 million people through our 700 state and local chapters nationwide.

Our nation’s Social Security system is a lifeline for over 56 million Americans including more than 10 million people who qualify because of a disability.

It’s a system that was built up over decades based on our shared commitment to each other. Changing the benefit calculation through the chained CPI isn’t just shaving a few dollars off here and there. We have a moral obligation to make sure that Social Security is there for all Americans in their time of need.

For people with disabilities, the monthly Social Security check can mean the difference between a home in the community, or life on the streets or in an institution.

It can mean the difference between food on the table, or hunger.

It can mean the difference between access to essential medicines and health care, or tempting illness or death.

Many beneficiaries with disabilities rely on Social Security for most or all of their income. With benefits only about $1,100 a month, every cent counts, and over the years the impact of the chained CPI would be real and painful.

Cuts from the chained CPI could also lead to terrible life and death choices for over 8 million very-low income seniors and people with disabilities who rely on Supplemental Security Income. SSI benefits are just over $500 a month.

Sen. Bernie Sanders of Vermont, who organized the press conference, issued a strong defense of Social Security.

Sen. Bernie Sanders of Vermont, who organized the press conference, issued a strong defense of Social Security.

Think about that – $500 a month is just pocket change for many affluent Americans.

It’s a monthly payment for a high-end car, or a plane ticket for a vacation.

But it’s all that many SSI beneficiaries have to exist on, month after month. The chained CPI would cut SSI benefits not once, but twice: first, before the person ever applies for benefits, by lowering the initial payment level, and second, through lower annual cost-of-living adjustments.

With SSI benefits already extremely low, it’s hard to imagine how beneficiaries would get by after cuts from the chained CPI.

In closing, thank you to Senator Sanders, Senator Whitehouse, and Senator Merkley and to our colleagues for bringing us together today to highlight how the chained CPI would hurt working Americans, seniors, veterans, women, and people with disabilities. We stand united against this harmful benefit cut.

The Arc Reacts to Baltimore Ravens Quarterback Using R-Word in Super Bowl Press Conference

Washington, DC – Baltimore Ravens quarterback Joe Flacco, who will play in the Super Bowl this Sunday, used the “r-word” in a press conference last night.  In response to a question unrelated to people with disabilities, Flacco used the offensive term and followed by acknowledging that he shouldn’t use the word.  While The Arc appreciates Mr. Flacco’s quick acknowledgment of his mistake, The Arc invites him to get involved in the national dialogue on why this language is offensive and provide leadership on this issue after the Super Bowl.

“All eyes are on the players competing in this weekend’s Super Bowl, and unfortunately, while under this media microscope, Joe Flacco used a hurtful word to people with disabilities.  After Super Bowl XLVII is in the history books, The Arc would welcome Mr. Flacco in the national dialogue about why this word is offensive to people with disabilities and what fans can do to help us remove the word from our society,” said Peter Berns, CEO of The Arc.

The Arc is a part of the “Spread the Word to End the Word” campaign along with other organizations to raise awareness of the effects of the “r-word”.  The Arc has also been involved in efforts to remove the word from federal health, education and labor statutes, supporting Rosa’s Law in 2010.  And just this week, the Social Security Administration announced its intent to remove the word from its work.

The Arc Applauds Social Security Administration’s Ending the Use of the “R-word”

Washington, DC – In an historic change for people with intellectual disabilities (ID), the Social Security Administration (SSA) announced its intent to stop using the phrase “mental retardation” and start using “intellectual disability” in its official Listing of Impairments.

This change, which The Arc and many other organizations advocated for, comes a little over two years after President Barack Obama signed Rosa’s Law.  In 2010, The Arc was very involved in efforts to end the use of the “r-word” and worked to enact Rosa’s Law, which substituted the stigmatizing word with the terms “intellectual disability” and “individual with an intellectual disability” in federal health, education, and labor policy statutes.  While the legislation did not cover programs such as Medicare, Medicaid, and Social Security, it was an important stepping stone for shaping future legislation and efforts that will transform these outdated terms in all federal laws.  The Social Security Administration’s actions are a welcome result of the success of Rosa’s Law.

“Changing how we talk about people with disabilities is a critical step in promoting and protecting their basic civil and human rights.  This is an important moment for people with disabilities because Social Security is a lifeline to so many – it allows people with ID to live in their communities and be as independent as possible.  And now, the language the agency uses will reflect the respect people with ID deserve,” said Peter Berns, CEO of The Arc.

The proposed regulation published today has a 30 day comment period, and we encourage people to submit comments in support of the proposed regulation online by February 27, 2013.

The Arc Reacts to Approval of Deal to Avert “Fiscal Cliff”

Washington, DC – The Arc released the following statement as the Congress approved a deal to avert going over the “fiscal cliff” – the series of harmful tax increases and spending cuts which Congress and the White House have been seeking to avoid for several weeks.  With time running out, The Arc’s advocates had encouraged Congress to act before the deadline to protect disability related programs and extend tax cuts for the middle class.

“The Arc appreciates the Administration’s outreach to Congress to get this legislation passed so that middle class families with people with disabilities don’t see their income taxes rise in the New Year.  Most people with intellectual and developmental disabilities and their families cannot afford a tax increase and this deal protects them.  They also cannot afford cuts to critical programs and this legislation does not include such cuts.

“Throughout these tense weeks of negotiation, there were proposals on the table that would have greatly harmed people with intellectual and developmental disabilities (I/DD), including a new way of calculating Social Security benefits known as the ‘chained CPI’ that would have impacted the ability of millions of people with I/DD and other disabilities to be as independent as possible.  This threat was excluded in this piece of legislation, as were harmful changes to Medicaid, a lifeline to people with I/DD.

“Going into 2013, there will continue to be mounting pressure to generate additional revenue and to find additional cuts in the federal budget to reduce the deficit further, including the Medicaid, Medicare, and Social Security programs.  The Arc’s advocates will be vigilant, putting pressure on Congress to protect these lifeline programs.

“The final legislation does include a repeal of the CLASS Act, a part of the Affordable Care Act to address access to costly long term services and supports in our society.  We are deeply disappointed that this framework for solving a critical problem was repealed.  However, we look to the Commission created in the legislation to work expeditiously to determine next steps to address this problem, including consideration of the needs of people with I/DD,” said Peter Berns, CEO of The Arc.

Additional legislation will be necessary to address other aspects of the nation’s fiscal situation in the next three months, including an increase in the debt ceiling, the end of the 2-month extension included in this legislation of the sequester (automatic cuts), and appropriations for the remainder of Fiscal Year 2013.  These deadlines will set the stage for additional negotiations between the Congress and the White House.  The Arc will be working hard during these negotiations to preserve programs that are vital to people with I/DD.

The Arc’s Statement on the Military’s Pilot Program for Extending Behavioral Health Therapy for Autism Spectrum Disorders

Washington, DC – The Arc released the following statement after the passage of the 2013 National Defense Reauthorization Act in the House and Senate.  The reauthorization will create a one year pilot program to expand the treatment of autism spectrum disorders (ASD) by TRICARE, the health care program for our nation’s military.

“We appreciate this step forward for military families that have children with ASD.  We are hopeful that the pilot program will lay the foundation for making critical behavioral health therapies available to military dependents with a range of developmental disabilities that can greatly benefit from the services.

“We regret that language developed by Senators Kirsten Gillibrand and Patty Murray extending coverage to dependents with other developmental disabilities was not included in the final bill.  There is considerable research proving applied behavioral analysis (ABA) to be an effective intervention for a number of developmental disabilities, including ASD.  ABA is particularly effective in reducing self-injurious behaviors in people with the most significant disabilities.

“The inclusion of other developmental disabilities would also have greatly benefitted military families who have children with ASD since many of these children only receive their diagnosis after many years.   Limiting the covered services to those with an ASD diagnosis will result in children not being treated at the earliest age possible, which is shown to have lifelong, cost effective benefits.

“We look forward to the Secretary of Defense’s report on the feasibility and advisability of establishing a beneficiary cost share for the treatment of ASD under TRICARE and its Extended Care Health Option (ECHO) Program for dependents with disabilities,” stated Peter V. Berns, the Chief Executive Officer of The Arc.

The Arc Responds to New York Times Column on Children’s SSI Program

Washington, DC – In response to The New York Times’ Nicholas Kristof’s December 7 op-ed, “Profiting from a Child’s Illiteracy”, The Arc released the following statement:

“Mr. Kristof’s take on how to break the cycle of poverty completely misses the mark.  Our nation doesn’t have to choose between providing two essential supports for low-income children with significant disabilities:  early childhood programs and Supplemental Security Income, a lifeline. We must do both.  Children with severe disabilities must have access to robust, timely supports to help make the most of their early development, while at the same time, many who are low-income also need Supplemental Security Income to ensure a quality of life that isn’t crushed by economic circumstances. If the Supplemental Security Income lifeline is slashed thanks to articles like this one, it’s those most in need – the children with significant disabilities and their families, who face unimaginable day in and day out financial and personal struggles – who will suffer,” said Peter V. Berns, CEO of The Arc.

Disability Advocates from Across the Globe Share the Stage at The Arc’s National Convention and International Forum

Washington, DC – Next week, The Arc will play host to nearly a thousand disability advocates from across the globe during The 2012 National Convention and International Forum.  The theme, “Achieving Inclusion Across the Globe,” reflects The Arc’s partnership with Inclusion International for this year’s convention.  This four day event will allow world renowned advocates, self-advocates, experts in the disability field, and family members of individuals with intellectual and developmental disabilities (I/DD) to come together and discuss shared experiences, policy, and advocacy techniques.

“We look forward to addressing issues facing individuals with intellectual and developmental disabilities not only domestically but internationally during this year’s convention.  I hope each attendee can leave with the knowledge that their advocacy work, research, and experiences are shared with millions across the globe who are also working to promote inclusion for individuals with disabilities,” said Peter Berns, CEO of The Arc.

Professional race car driver and Istook Motorsports owner Don Istook and his wife Laurie are being honored with The Arc’s Image and Inclusion Award this year. This award recognizes a person or group who has had an impact on accurate and positive portrayals of individuals with I/DD.  In 2012, The Arc launched The Arc Audi Rac­ing Program in partnership with Is­took’s Motorsports. The program allowed individuals with I/DD the chance to be part of a fast-paced professional race crew as Honorary Crew Members at select races in the Pirelli World Challenge.

The Arc will also be presenting the 2012 Advocacy Matters! Award to The Arc of Virginia. Earlier this year, The Arc of Virginia’s advocacy efforts were rewarded when the Commonwealth of Virginia and the U.S. Department of Justice (DOJ) announced a settlement requiring the state to move people with I/DD out of institutions and provide community-based services through Medicaid waivers and family supports for thousands of individuals with I/DD.

Some of the featured speakers include: Rosangela Berman-Bieler, Chief of the UNICEF Disability Section, Vivian Fernández de Torrijos, former First Lady of the Republic of Panama,  Eve Hill, Senior Counselor to the Assistant Attorney General, U.S. Department of Justice, and Ricardo Thornton, an inspiring self-advocate who speaks publicly about his life in the community with his family.

The Arc Reacts to The National Council on Disability’s Disturbing Report on the Rights of Parents with Disabilities

Washington, DC – The National Council on Disability’s new comprehensive report on the rights of parents who have disabilities reveals startling statistics showing how vulnerable these parents are to losing their children via the court system.  According to their research, more than 4 million parents—6 percent of American mothers and fathers—have a disability.  Yet their rights are often in jeopardy – the rate at which children are taken from parents who have intellectual and developmental disabilities (I/DD) is between 40% and 80%.

“This report uncovers the heartbreaking reality for too many families across the country – parents with disabilities are treated unjustly when it comes to their rights as parents, and far too many families are broken apart by outdated and discriminatory practices,” said Peter V. Berns, CEO of The Arc.

The National Council on Disability’s report provides a comprehensive review of the barriers and discrimination people with disabilities – including I/DD, psychiatric disabilities, sensory disabilities, and physical disabilities – experience when they are creating and maintaining families.  Two-thirds of dependency statutes allow the court to reach the determination that a parent is unfit on the basis of the parent’s disability. In every state, disability may be considered when determining the best interest of a child for purposes of a custody determination in family or dependency court.  The National Council on Disability wrote:  “People with disabilities are the only distinct group that struggles to maintain custody of its children.”

In positive news, a chapter of The Arc was particularly highlighted by the National Council on Disability for their good work in this area.  The United Arc of Franklin and Hampshire Counties in Greenfield, Massachusetts runs a program called The Positive Parenting Resource Center which provides services and support to families headed by parents with I/DD, including one-on-one support, education groups, mentoring, and more.

The report highlights twenty findings, makes numerous recommendations, and provides examples of how laws in Kansas and Idaho have been changed to protect the rights of parents with disabilities.

“The good news is that there are plenty of ways that we can improve the lives of parents with disabilities, illustrated by The United Arc of Franklin and Hampshire Counties and other organizations across the country.  Now we must put pressure on decision makers to enact the changes necessary that protect parental rights, before more families are impacted by decisions that discriminate against disability,” said Berns.

Turbulence for People with Disabilities – What The Arc is Doing to Make Air Travel More Accessible to People with Disabilities

Cameron and Nancy

Cameron is on the autism spectrum and was completely non-verbal until a Wings for Autism event at Logan Airport where he said “airplane” while sitting on the plane. That was the first word that he had ever spoken at 5 years old. His mother Nancy reassured him with “yes Cameron, you are on an airplane.” Nancy says: “It is a moment I will never forget and I will always be grateful to the Wings for Autism program for that.”

Recent headlines about people with disabilities facing difficulties while traveling are troubling – just this week, the Vanderhorst family from Bakersfield, CA was not allowed to board an American Airlines flight home from visiting family on the East Coast, after they claim a pilot discriminated against their son Bede, who has Down syndrome. Stories like this one demonstrate the need for the airline industry to work with families to learn what to expect when people with intellectual and developmental disabilities (I/DD) travel.

One chapter of The Arc, The Charles River Center in Massachusetts, is leading the way in this type of education.  Working with Massachusetts Port Authority, JetBlue, and the Transportation Security Administration (TSA), The Charles River Center has created a new program called Wings for Autism.

Parents of children on the autism spectrum have a lot to take into consideration before making travel arrangements, from how their loved one will respond to the lights at the airport, their comfort level with airport security talking to or touching them, and how the noise on the plane will affect their child.

Wings for Autism sets up simulations of airport travel and security at airports across the country, giving families and airport and airline personnel an opportunity to do a test run for air travel.

At a recent simulation at Logan Airport in Boston, volunteers from JetBlue including flight attendants and pilots, staff from United Airlines, TSA officials, and ticket counter agents practiced the routine of air travel to prepare parents and children for what to expect when traveling.  The simulation required families to clear security, board the plane, fasten their seatbelts, and prepare for take-off.   For children who had issues with the various steps of the simulation, behavioral specialists were on hand to help parents and children work through the exercise.

While the program’s primary goal is to help children and parents, there is also an orientation process for TSA and airline staff.  This is the kind of education that appears to be desperately needed across airlines.  And The Arc is looking to expand this program, so that more families and airline and airport personnel can make flying a little smoother.