The Arc Reacts to New National Survey on Autism Prevalence

Peter Berns

Peter V. Berns, CEO of The Arc

Washington, DC – Today, the Health Resources and Services Administration and the Centers for Disease Control and Prevention (CDC) agencies within the U.S. Department of Health and Human Services released a report which estimated autism spectrum disorder (ASD) prevalence based on parental reporting using the National Survey of Children’s Health.   In the survey, the prevalence of parent-reported ASD among children was 2%, or 1 in 50, up from 1.2% in 2007.  According to the CDC, however, much of the increase in the prevalence estimates from 2007 to 2011-2012 was the result of diagnoses of children with previously unrecognized ASD.

Last year, the CDC released new in-depth research estimating that 1 in 88 children had been identified with ASD.  The CDC will release its next round of this kind of research in 2014.  While the new study is based on parent reporting, a different methodology than that used by CDC’s monitoring network, it has tremendous significance for our service systems.

“These statistics represent millions of families across the country that are looking for resources and answers to help their children.  But meanwhile, the across-the-board budget cuts in Washington are hampering the vital efforts of federal agencies like the CDC and the National Institutes of Health, which are working to find the underlying causes of autism, and could have real consequences in our society,” said Peter Berns, CEO of The Arc.

“And these are not the only threats – lifeline programs like Medicaid, Social Security, and Medicare are on the table for real cuts that may impact the ability of these families to get services in the near and distant future for their children, as well as hurting adults with ASD who depend on those programs today.  It is not enough to say we want a balanced approach to deficit reduction – we must stand together and say that we cannot simply cut our way out of this situation.  We need more revenue to pay for critical investments like prevention and treatment, as well as services and supports for people with autism,” added Berns.

Early identification and intervention can have a significant impact on a child’s ability to learn new skills.  CDC’s “Learn the Signs. Act Early.” health education campaign promotes awareness among parents, health professionals, and child care providers about healthy developmental milestones, the importance of tracking each child’s development, and acting early if there are concerns. CDC offers free online resources, including checklists of developmental milestones, at www.cdc.gov/ActEarly.

Autism NOW: The National Autism Resource and Information Center, a federally funded project of The Arc, is another resource for people with ASDs and their families.  The online center aims to help people searching the web separate fact from fiction when it comes to autism.  Learn more at www.autismnow.org.

The Arc Applauds Appointment of Disability Champion Tom Perez as U.S. Secretary of Labor

Washington, DC – The Arc, the largest civil rights organization for people with intellectual and developmental disabilities (I/DD), applauds President Obama’s nomination of Tom Perez, the current head of the U.S. Department of Justice’s Civil Rights Division, as the next U.S. Secretary of Labor.

“Tom Perez has been a champion for people with disabilities throughout his career, and we are pleased that he has been nominated for a post that plays a critical role in employment for people whom The Arc represents.  We are thrilled that he steps into this important position with a wide breadth of knowledge regarding people with I/DD, and we look forward to his confirmation and to working with him in his new role,” said Peter Berns, CEO of The Arc.

In 2012, The Arc and the five other disability organizations that host the annual Disability Policy Seminar in Washington, DC presented Perez with their prestigious Leadership in Disability Policy Award for his aggressive enforcement of the Americans with Disabilities Act’s “integration mandate” and the Olmstead decision.  Just since 2009, the U.S. Department of Justice (DOJ) has been involved in several cases that will result in major transformations of states’ delivery of long term services and supports to people with disabilities.  In each of these cases, people with disabilities were living in segregated settings or at risk of being institutionalized while they could be living in more integrated community settings.  Due to Perez’s tireless work, thousands of people with disabilities will be able to leave institutional settings or avoid ever having to enter an institution, and will be able to participate more fully in their communities.

“Tom Perez has set a high bar at the Department of Justice for the enforcement of the laws protecting the rights of people with disabilities to be a part of their community.  We appreciate his tremendous efforts and look forward to working with him at the Department of Labor to further the employment of people with disabilities,” said Berns.

Progress in Affordable Housing for People with Disabilities – The Arc Applauds New Grants in 13 States

Washington, DC – The Arc released the following statement in response to the U.S. Department of Housing and Urban Development’s (HUD) announcement of the FY 2012 awards for the new Section 811 Supportive Housing for Persons with Disabilities Project Rental Assistance (PRA) Demonstration. The new Section 811 PRA Demonstration is designed to assist state housing agencies to expand integrated supportive housing opportunities for people with the most significant and long term disabilities, and was the centerpiece of the Frank Melville Supportive Housing Investment Act of 2010. A total of 13 states will receive $98 million to produce 3,530 units of community-based supportive housing for people with disabilities.

“Like all Americans, individuals with intellectual and developmental disabilities deserve the opportunity to live independently in the community with their peers. Unfortunately, low-income people with disabilities face a severe shortage of accessible and affordable housing. The money being awarded by HUD will allow thousands of individuals to live in the community, where they belong. For many, this announcement is the difference between life in an institution and inclusion in their communities,” said Peter V. Berns, CEO of The Arc.

Section 811 is the only HUD program dedicated to producing affordable, accessible housing for non-elderly, very low-income people with significant disabilities. The Frank Melville Supportive Housing Investment Act of 2010 modernized Section 811 to make the program more efficient and effective. Today’s awards are the first ever under the new Section 811 PRA Demonstration model, which will create integrated housing linked with community-based services for low-income adults with significant disabilities.  States receiving awards are: California, Delaware, Georgia, Illinois, Louisiana, Maryland, Massachusetts, Minnesota, Montana, North Carolina, Pennsylvania, Texas, and Washington.

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.