The Arc Marks Senate Passage of ABLE Act

Washington, DC – Today, as the U.S. Senate passed the Achieving a Better Life Act (ABLE Act), The Arc, the nation’s largest organization for people with intellectual and developmental disabilities (I/DD), released the following statement:

“We are pleased that the Achieving a Better Life Experience Act has been approved by both the U.S. House of Representatives and now the U.S. Senate.  With the clock winding down on this session of Congress, now this important legislation can move to President Obama’s desk.  We appreciate the untiring work of the chief sponsors of the bill and the support of a large and broad representation in both chambers of Congress.

“While the legislation was narrowed due to the constraints from the cost analysis, the approved bill will provide a vehicle for some families and people with intellectual and developmental disabilities to save for the future, depending on their own circumstances.  Our efforts will not be finished if President Obama signs this bill – The Arc will continue to work with the leadership and chief sponsors in Congress to expand this program in the future to ensure that everyone in need can get the maximum benefit from this legislation.  We remain disappointed that certain pay-fors remain in the bill,” said Peter V. Berns, CEO of The Arc.

The ABLE Act aims to change the tax code to allow for tax advantaged savings accounts for individuals with disabilities for certain expenses, like education, housing, and transportation.  Similar to existing “Section 529” education savings accounts, ABLE accounts would let families save for disability-related expenses on behalf of qualified beneficiaries with disabilities that will supplement, but not replace, benefits provided through the Medicaid program, the Supplemental Security Income program, the beneficiary’s employment, and other sources.  If properly managed, funds in the ABLE accounts would not jeopardize eligibility for critical federal benefits.  With full understanding of its features, individuals and families could use the ABLE accounts as another tool in planning for the lifetime needs of an individual with long term disabilities.  The version of the bill that passed the U.S. House of Representatives includes age limitations and a cap on contributions, added in July by the Committee on Ways and Means to reduce the costs of the bill.  If the President signs the ABLE Act into law, The Arc will issue a fact sheet including the details on the bill as it has been revised through the legislative process.  Further details would come through the regulatory process.

Federal Hiring of People with Disabilities Continues to Disappoint

Washington, DC – The federal government’s Office of Personnel Management (OPM) recently released Fiscal Year 2013 data on the hiring of people with disabilities in the government’s workforce. Once again, the report demonstrates that hiring of people with targeted disabilities, including intellectual disability (ID), continues to lag, and the federal government is missing an opportunity to be a model employer of people with disabilities.

“While the last few years have seen some modest increases in the numbers of people with disabilities employed by the federal government, The Arc remains deeply concerned that many people with the most significant disabilities, including jobseekers with intellectual and developmental disabilities, are being left behind. The federal government should implement the strategies the Department of Labor has laid out to meet their goal, and that should involve working with organizations like The Arc, with our nearly 700 chapters across the country, to proactively fill job openings with people with disabilities qualified for a variety of positions open in our government,” said Peter V. Berns, Chief Executive Officer of The Arc.

The federal government, through the Department of Labor, has initiated a new effort to increase the number of people with disabilities employed by entities that contract with the government, asking contractors to aspire to a goal of 7 percent of their workforce with disabilities. In explaining why there is a need to step up hiring of people with disabilities, the Department of Labor has stated: “A substantial disparity in the employment rate of individuals with disabilities continues to persist despite years of technological advancements that have made it possible for people with disabilities to apply for and successfully perform a broad array of jobs.” Meanwhile, in Fiscal Year 2013, the federal government only hired 1,389 people with targeted disabilities, representing 1.32 percent of new hires overall. The category of targeted disabilities includes people with intellectual disability (ID).

One factor in the federal hiring picture is the congressionally mandated budget cuts known as sequestration. These cuts forced federal agencies to put in place furloughs, hiring freezes, and reduce overtime. These budget cuts have trickled down to impact hiring of all new employees, including people with disabilities. Several federal agencies, however, have used their Schedule A hiring authority to make hiring people with disabilities a priority. The Schedule A process is a non-competitive hiring method that provides people with disabilities a path to federal employment.

“The numbers demonstrate that successful employment for people with disabilities is doable with the Schedule A process. Agencies that haven’t used this tool in their toolbox should look to their peers for guidance on how to improve their outreach, in addition to utilizing the competitive process to reach people with disabilities that match the skill sets needed for job opportunities,” said Berns.

The agencies that have demonstrated willingness to hire via with Schedule A include the Equal Employment Opportunity Commission (EEOC), the Department of Health and Human Services, the Department of Labor, the Office of Personnel Management, and the Treasury Department. However, 14 agencies hired no people using this hiring authority in 2013, including the Federal Deposit Insurance Corporation, Federal Trade Commission, and Department of Housing and Urban Development, which each made over 100 new hires but none through Schedule A.

One federal agency that The Arc has recently partnered with to boost the number of people with intellectual disability employed is the Federal Communications Commission (FCC). They have hired five individuals at GS3 and GS4 levels with the opportunity to be promoted to a GS5.

In July, The Arc submitted comments to the EEOC calling on the federal government to become a model employer of people with disabilities, including individuals with intellectual and developmental disabilities (I/DD).

“While we are pleased that the EEOC is moving forward with strengthening federal regulations, the shockingly low rate of federal employment of people with intellectual disability persists. Agencies can act now to step up their efforts,” said Berns.

The U.S. Bureau of Labor Statistics regularly reports that the percentage of working-age people with disabilities in the labor force is about one-third that of persons with no disability. On average, workers with disabilities face significant gaps in pay and compensation, compared to workers with no disability. Additionally, about one in three employment discrimination charges filed with the EEOC allege discrimination on the basis of disability (often, in combination with charges of other types of discrimination).

The Arc’s own research suggests that the employment picture for people with I/DD may be even bleaker. In 2010, The Arc conducted a national online survey, called the FINDS Survey, to obtain perceptions of people with I/DD and their families on a range of life-span issues. Over 5,000 people participated. Only 15 percent of FINDS survey respondents reported that their family member with an intellectual and/or developmental disability was employed.

The Arc Raises Questions in Case of Shocking Abuse and Neglect against Teenager in Anderson, Indiana

Indianapolis, IN – Fifteen years old and weighing less than 40 pounds.  Covered in feces and locked in a room, alone and for an unknown amount of time, by her grandfather.  The police reports released in Anderson, Indiana about the shocking abuse against a teenager with a disability raise significant questions about how this situation could go unnoticed in the community and unmonitored by a litany of state agencies which allowed this child to fall off the radar.

It has been reported the girl was removed from school to be home schooled – Indiana law does not require ongoing involvement from public schools when a family removes a child to be home schooled. Indiana’s Department of Children’s Services (DCS) had contact with the family at one time, but the case was closed.  The police have learned that the child lost access to Medicaid which helped cover nutritional supplements, but as there is no requirement for Medicaid case workers to follow up in such cases, this loss of coverage went unnoticed.

“This is a tragic situation that should never have happened.  The question now is, what can we as a community of advocates, state agencies, and individuals do to learn what went so terribly wrong for this young girl, and how can we all seek and act on ways to keep others safe and free from harm,” said John Dickerson, Executive Director of The Arc of Indiana.

“This is a shameful case of abuse and neglect that should force the system and society to think about how this young girl was hidden in plain sight, starving and without access to medical care, and to force action to prevent something like this from ever happening again.  People with disabilities are far too often victimized, without regard for their basic human rights.  And now this teenager is fighting for her life,” said Peter Berns, CEO of The Arc.

The National Center on Criminal Justice and Disability (NCCJD) is operated by The Arc and is the first national effort of its kind to bring together both victim and suspect/offender issues involving people with I/DD under one roof.  NCCJD is a national clearinghouse for research, information, evaluation, training and technical assistance for criminal justice and disability professionals and other advocates that will build their capacity to better identify and meet the needs of people with I/DD, whose disability often goes unrecognized, and who are overrepresented in the nation’s criminal justice system.  Currently, NCCJD is developing training for law enforcement, victim service providers and legal professionals that will support police departments, prosecutor’s offices, and other professionals in the criminal justice system to effectively and fairly administer justice for people with disabilities.

NCCJD is a much needed resource for the Anderson, Indiana police force and local prosecutors as they pursue this case and will continue to be a resource for many other communities facing similar tragedies. Persons with disabilities are nearly three times more likely to be victimized – people with cognitive disabilities have the highest rate of victimization.  Children with intellectual disabilities are at twice the risk of physical and sexual abuse compared to children without disabilities.

The Arc Advocacy Network in Indiana can provide information, referral and advocacy to assist and guide individuals with intellectual and developmental disabilities and their families in understanding and applying for government programs, including Medicaid and home and community based services through the Medicaid Waiver program.  It can also serve as a resource to schools and local public and private agencies serving children and adults with disabilities.

Finally, The Arc has launched an online pledge to generate support to end acts of violence, abuse, and bullying of people I/DD.  The Arc and The Arc of Indiana encourage members of the public to sign this pledge to show their support.

Another Congressional Session Poised to End without Ratification of the Convention on the Rights of Persons of Persons with Disabilities

CRPDWashington, DC – As the clock winds down on the 114th Congress, U.S. Senate leaders have informed disability advocates that the Convention on the Rights of Persons of Persons with Disabilities will not be put to a vote because the treaty doesn’t have enough support in the chamber.

“It’s pitiful that once again, the U.S. Senate can’t come together and support a disability rights treaty that simply affirms our nation’s support for people across the globe who seek the same rights we enjoy here in the United States. Over 800 disability, civil rights, and faith groups support ratification of the treaty, representing countless people across the country. But this tidal wave of support has not swayed those in the Senate whose objections to this treaty have been proven false to support this cause. The Arc will continue our advocacy on this issue when Congress reconvenes in January,” said Peter Berns, CEO of The Arc.

The Arc has been working with numerous other disability advocacy groups and U.S. Senators to garner support for the ratification of this treaty, which will promote, protect, and ensure the full and equal enjoyment of all human rights and fundamental freedoms by all persons with disabilities. The treaty is modeled after the Americans with Disabilities Act, which affirms the rights of American citizens with disabilities by prohibiting discrimination in employment, public services, public accommodations and services operated by private entities. For years, The Arc’s Public Policy team and grassroots advocates across the country have been working to promote the CRPD and ensure ratification.

The United States signed the CRPD on July 30, 2009, joining the 141 other signing nations. Today, the Convention has 151 ratifications and 159 signatures. On May 17, 2012, following almost three years of thorough review, the Obama Administration submitted its treaty package to the U.S. Senate for its advice and consent for ratification. Senator Bob Dole, who was a champion of the Americans with Disabilities Act, was present for the last attempt to vote on the treaty in December 2012 and urged his fellow Republicans to support it. Unfortunately, his plea along with strong Congressional and disability community support was not enough to overcome the unfounded fears raised by the opposition.

The Arc Marks House Passage of ABLE Act

Washington, DC – Today, as the U.S. House of Representatives passed the Achieving a Better Life Experience Act (ABLE Act), The Arc, the nation’s largest organization for people with intellectual and developmental disabilities (I/DD), released the following statement:

“We are pleased that the Achieving a Better Life Experience Act, H.R. 647, has been approved by the U.S. House of Representatives, and is one step closer to reaching President Obama’s desk.  We appreciate the untiring work of the chief sponsors of the bill and the support of a large and broad representation in Congress.  The ABLE Act is a good example of how members of both political parties can work together to craft legislation that benefits people with disabilities, as disability knows no political, geographic, gender, or ethnic boundaries.

“While the legislation was narrowed due to the constraints from the cost analysis, the approved bill will provide a vehicle for some families and people with intellectual and developmental disabilities to save for the future.  The Arc will continue to work with the leadership and chief sponsors of this effort in Congress to expand this program in the future to ensure that everyone in need can get the maximum benefit from this legislation.  Our goal is to ensure that people with disabilities get the full use of the ABLE Act.   We still have concerns about certain pay-fors in the bill, and hope that the House and Senate can resolve these issues,” said Peter V. Berns, CEO of The Arc.

The ABLE Act aims to change the tax code to allow for tax advantaged savings accounts for individuals with disabilities for certain expenses, like education, housing, and transportation.  Similar to existing “Section 529” education savings accounts, ABLE accounts would let families save for disability-related expenses on behalf of qualified beneficiaries with disabilities that will supplement, but not replace, benefits provided through the Medicaid program, the Supplemental Security Income program, the beneficiary’s employment, and other sources.  If properly managed, funds in the ABLE accounts would not jeopardize eligibility for critical federal benefits.  With full understanding of its features, individuals and families could use the ABLE accounts as another tool in planning for the lifetime needs of an individual with long term disabilities.  The version of the bill that passed the U.S. House of Representatives includes age limitations and a cap on contributions, added in July by the Committee on Ways and Means to reduce the costs of the bill.

The Arc National Headquarters Announces New Strategic Alliance with District of Columbia Chapter

Mary Lou Meccariello

Mary Lou Meccariello

Washington, DC – The Arc of the District of Columbia (The Arc of DC), a mainstay in our nation’s capitol for nearly 65 years, has entered into a new strategic alliance with The Arc of the United States for management of the chapter that aims to enhance services for people with intellectual and developmental disabilities (I/DD) in the District and create an incubator to develop best practices that can be replicated at chapters across the country in the future.

As longtime executive director Mary Lou Meccariello retires this fall, The Arc of DC’s board of directors is drawing on the expertise of The Arc’s national headquarters, also located in DC, to reposition the organization so that it can continue to be a preeminent service provider in the District and a powerful advocate for people with I/DD and their families. The chapter will continue to provide services in the DC Public Schools and employ people with I/DD performing contract services for the Federal government, while looking for new opportunities to expand its reach into the community.

2015 will mark 65 years of The Arc in the District of Columbia providing advocacy, supports and services for District residents. In order for the chapter to thrive going forward, and to support The Arc’s nearly 700 other chapters across the country, the national office staff will support The Arc of DC and develop innovative programs, services and supports at this chapter that can then be replicated throughout the network.

“With The Arc of DC in our backyard, this alliance presents a unique opportunity to find ways to serve and collaborate with people with intellectual and developmental disabilities for the next 65 years of our existence. Working with the chapter’s board of directors and with current and potential partners, we are looking forward to our new partnership to continue The Arc of DC’s reputation as a stellar community organization in the District,” said Peter Berns, CEO of The Arc.

Meccariello, a native Washingtonian, is retiring with decades of professional experience in the field of disability, specializing in intellectual and developmental disabilities. She has played a key role in new program initiatives, service delivery, employer development and training, business development and legislative initiatives for people with I/DD in the city.

“I will miss The Arc and the people who embody our mission. I’m proud of the work we have done to support kids with I/DD in our schools and to employ people with disabilities in the community. We have served thousands and touched the lives of countless families. I look forward to watching the chapter thrive under this new strategic alliance with The Arc’s national office team,” said Meccariello.

“Mary Lou has been a tireless champion for people with intellectual and developmental disabilities in the District of Columbia, and she will be missed in her role within The Arc’s community, and in her capacity as a leader in the field in the District. I wish her the best in her retirement and thank her for her contributions to The Arc and the movement,” said Robert A. Andersen, Board President of The Arc of DC.

The Arc of DC can be reached at 202.636.2950 or on the web at http://www.arcdc.net.

Disability Advocates and Professionals Join in New Orleans for The Arc’s Annual Convention

2014 Convention ArtworkNew Orleans, LA  – Next week, The Arc’s National Convention will kick off in New Orleans, Louisiana with more than 800 disability advocates, professionals, and people with intellectual and developmental disabilities (I/DD) coming together to learn, forge connections, and energize the disability movement. This year’s theme focuses on three key goals– To Network, To Improve, and To Lead, three simple ideas that embody what The Arc stands for.  This year’s event will have a strong focus on criminal justice issues and the I/DD population.

“The Arc’s convention is a once a year chance to bring our network of nearly 700 chapters, their members and professionals, and people with disabilities together for a unique experience.  This year, in addition to our usual activities, we are turning a national spotlight to criminal justice and disability. The Arc has a long history of standing up for the rights of people with disabilities who find themselves involved in our legal system as victims, suspects, or offenders.

“We are thrilled to be honoring James Ellis, one of the leading lawyers in the disability community. Additionally, we are excited to have two award winning documentary film makers who will be exposing the difficulties facing children with intellectual disabilities involved in our criminal justice system,” said Peter Berns, CEO of The Arc.

This three day event, which will take place at the New Orleans Marriott from September 30 – October 2, will include:

  • a keynote address by award-winning author Ron Suskind, whose latest book, Life Animated, A Story of Sidekicks, Heroes and Autism shares his family’s 20 year journey with their youngest son Owen’s autism;
  • an exciting and inspirational presentation from Fred Maahs, Director of National Partnerships for Comcast Corporation and Vice President of Comcast Foundation, that touches on his personal story, his commitment to community service, and the benefits of corporate/nonprofit partnerships;
  • honoring Dr. David Braddock with The Arc’s President’s Award for his lifetime of work for individuals with disabilities including his invaluable research regarding long-term care, health promotion and disease prevention, and public policy toward disability;
  • a panel discussion with documentary film makers Karen Grau and Chip Warren of Calamari Productions, and a sneak peek at their latest film, Children of the Dumping Ground;
  • honoring James Ellis, one of the greatest legal minds in the disability community; and
  • an exciting event hosted by The Arc of Louisiana and The Arc Baton Rouge, which includes a second line parade down the Chartres Street to the Presbytere, and a scheduled guest appearance by Lt. Governor Jay Dardenne.

“We are excited to serve as the local host committee for The Arc’s national convention. With so many changes at the federal and state level including managed care, the CMS home and community based setting rule, and wage and hour issues; I think the timing of this event in New Orleans is ideal. My hope is with hundreds of advocates and the leading experts in the disability community in our backyard, we will push forward with the necessary conversations to continue to move our state in the right direction,” said Kelly Serrett, Executive Director of The Arc Louisiana.

“The Arc’s national convention is the premier event for disability advocates in our network, and we are thrilled to have everyone in New Orleans this year.  Our program covers a number of key issues facing communities in Louisiana as well as nationally, from public policy to early intervention services for families with a loved one who has a disability. We are so pleased with the line-up of speakers that will be joining us, and look forward to showing our colleagues from across the country what our great state and the city of New Orleans has to offer,” said Barry Meyer, Executive Director of The Arc Baton Rouge.

The Arc Weighs In on Dr. Phil Shows on the Case of Kelly Stapleton

Dr. Phil logoWashington, DC – Last week, Dr. Phil aired two shows about the case of Kelly Stapleton, a mother from Michigan who attempted to take the life of her daughter, Issy, who has autism, and herself last year. The Arc released the following statement in response to the reporting done by the Dr. Phil Show.

“Kelly Stapleton’s failed attempt to take the life of her daughter, Issy, must be understood for exactly what it is – a crime of the worst magnitude – and her attempt to take her own life illustrates that likely she was experiencing a significant crisis in her own mental health. The act of a parent to kill or attempt to kill her own child is not a rational act, regardless of whether the child has a disability or how challenging the circumstances, and is never acceptable and offends our deepest values and sensibilities.

“There are, though, other lessons to be learned here. Unfortunately, the horrific story of the Stapletons shows what too many families across the country are facing – a failing system of supports and services for people with intellectual and developmental disabilities. The Stapletons were in a challenging situation and seeking help for their daughter so that she could continue to be with her family, attend school, and be a part of her community. If the system – in the end, the school district that rejected Issy’s inclusion for the school year – had not failed them, this family’s reality could have turned out very differently.

“Kelly’s actions are indefensible, and sensationalizing this family’s tragic story only hurts the public’s perception of autism. Issy’s voice, or the voice of a peer on the autism spectrum, should have been heard by the millions who tune in to Dr. Phil. His audience should have had the opportunity to learn from an individual with autism what it’s like to live with autism, and how services and supports can make a huge difference in their daily life. America needs to be woken up to this national crisis – the lack of access to services and supports for people with disabilities is an unacceptable reality and Issy and millions like her deserve much, much better,” said Peter Berns, CEO of The Arc.

The Arc Commends Senator Tom Harkin’s 40 Years of Service

Senator Tom Harkin

Senator Tom Harkin

Washington, DC – The Arc released the following statement after Senator Tom Harkin’s (D-IA) final Senate Committee Hearing on disability issues entitled “Fulfilling the Promise: Overcoming Persistent Barriers to Economic Self-Sufficiency for People with Disabilities”. Senator Harkin has been a powerful advocate for individuals with intellectual and developmental disabilities for almost four decades, serving in both the House of Representatives and the Senate.

“Today a legend in the disability community held what is likely his final Senate Committee hearing on disability issues, advocating for individuals with disabilities until the very end of his final term in Congress. Senator Harkin has been a longtime advocate for individuals with disabilities, supporting or spearheading all major disability legislation in the last 40 years. His final hearing focused on poverty, a huge problem facing many individuals with disabilities. This hearing, like so many before, highlighted one of the key issues facing people with disabilities, and challenged legislators to look for solutions.

“Senator Harkin is a hero to The Arc and our advocates across the country, and his legacy will live on. We thank him for his years of service, and friendship to our community,” said Marty Ford, Senior Executive Officer of Public Policy for The Arc.

The Arc Calls on Cuyahoga County Prosecutor to Pursue Ice Bucket Challenge Assault Perpetrators to Fullest Extent of the Law

Washington, DC – As the nation has reacted with outrage to the incident in Bay Village, Ohio where a teenager with autism was doused with urine instead of ice water in a fake Ice Bucket Challenge, The Arc is calling on the Cuyahoga County prosecutor’s office to charge the five teenagers identified in the case to the fullest extent of the law.

“The perpetrators of this horrific act, who reportedly were neighborhood friends of the victim, need to be held accountable for their behavior.  While some seek to characterize what was done to this teen as an innocent prank, it is anything but.  Call it what it is – it was an assault and abuse.  These kinds of acts are an outright attack on the humanity of people with autism and other intellectual or developmental disabilities in Ohio and nationwide.  There is no possible excuse for this type of assault and the perpetrators should be prosecuted,” said Peter Berns, CEO of The Arc.

“Unfortunately, people with disabilities experience violence and abuse at high rates, often at the hands of abusers who are known to them.  Many have a strong need to feel accepted and fit in which can, at times, lead them into places and situations with people who they think are their friends, but who are anything but.  When abuse or other violent acts are committed, whether by friends or complete strangers, our legal system must respond.  In this case, the Cuyahoga County prosecutor’s office must send a message that will stop future perpetrators in their tracks – it is not okay to attack a person with a disability,” Berns added.

The Arc has a long history of standing up for the rights of people with intellectual and developmental disabilities (I/DD), and supporting them to do the same, when they find themselves in dangerous situations and in our legal system.  Most recently, last year, The Arc was awarded a two-year grant for $400,000 by the U.S. Department of Justice, Bureau of Justice Assistance (BJA) to develop the National Center on Criminal Justice and Disability (NCCJD).  This is the first national effort of its kind to bring together both victim and suspect/offender issues involving people with I/DD under one roof.  NCCJD is a national clearinghouse for research, information, evaluation, training and technical assistance for justice and disability professionals and other advocates that will build their capacity to better identify and meet the needs of people with I/DD, whose disability often goes unrecognized, and who are overrepresented in the nation’s criminal justice system.  Currently, NCCJD is developing training and technical assistance for law enforcement agencies that will support police departments like Bay Village’s force, as well as prosecutor’s offices,  such as the office in Cuyahoga County, to administer justice for people with disabilities.  And The Arc supports people with I/DD to be prepared for situations like these, connect them with other survivors of abuse and bullying, and find a collective voice to stand up against it.

The Arc also runs the Autism NOW Center, an online resource center that helps people weed through the volumes of information found online about autism spectrum disorders and provide high-quality, vetted resources and information to people with autism and other developmental disabilities, their family, friends, colleagues, teachers, employers and others.

“Never should a human have to endure such needless acts of abuse. It is never justified and it is never the victim’s fault for they may not even know why they were treated the way they were, but there are people who do. The ones who do know why this kind of abuse is so wrong are the ones who stand together, like The Arc and our chapters, which stand united to push for these random acts of abuse to be punished by law.   Random acts of kindness make a better person. Be good to those in need and one day the favor will be returned twofold,” Amy Goodman, Co-Director of the Autism NOW Center.

“We cannot stand by and accept this horrific act- the prosecutors know what they must do and they must do it swiftly to send the message that attacks on people with disabilities will not be tolerated and will be punished,” Cindy Norwood, Executive Director, The Arc of Greater Cleveland.