On Mother’s Day – A Conversation with Mom and Board Member of The Arc, Kelly Piacenti

Kelly Piacenti with son and daughterKelly Piacenti is a mom to four – Allie, Olivia, Nick, and Frankie. Kelly is the Assistant Vice President, MetLife Center for Special Needs Planning, and a member of The Arc’s national board of directors. This Mother’s Day, we caught up with Kelly about what being a mom of a child with significant disabilities means to her, and how The Arc is a part of her life.

How did you and your family get to know The Arc?

Back in college, I worked in a group home in Massachusetts. I was going to school to become a social worker, and for four years I worked with people with intellectual and developmental disabilities. I used to take those individuals to activities run by The Arc. So I knew about The Arc long before I had Nick.

When Nick was born, they told us to expect him to live a few months. Then they said to set our sights on 2. On January 7th, my Nick turned 14. He has defied the experts.

In my line of work, I travel all over the country and I get to see what chapters of The Arc are doing. Most recently, I visited The Arc of Hawaii and The Arc of Anchorage.

What does it mean to be a mom of a child with very significant disability?

I thought I had it all before Nick – two kids, a house, both my husband and I had great careers – but Nick really put life into perspective. For a while, you feel like everything is falling apart – but then we woke up, and realized what Nick gives us.

Nick’s smile means a whole lot more than many people’s words. He gives us the ability to focus in on what’s important. I just want all my kids to be happy and I want to provide them a good quality of life. The things I worried about before – spills on the rug, getting someone to soccer on time – I don’t worry about now. Nick has taught me more than I’ve taught anyone else as a mom.

As a member of The Arc’s national board, I’m all about the people with I/DD and the families that don’t feel like they have a voice. There’s a core group that just need support – information, a way to talk to each other, a connection.

My family is very fortunate. I’m there on the board to advocate for people like Nick that don’t have the resources, time, or energy to fight for what they need. Before Nick came into our lives, I didn’t have this in me – Nick gave me this ability, this drive.

What type of support do you receive from The Arc and from others in your family and community?

I’m a member of my local chapter, The Arc Morris in Morris Plains, New Jersey. I’m involved because I get so much information from The Arc locally and nationally. Nick doesn’t get services from my chapter – he may never – but it’s valuable to my family because of the depth and breadth of knowledge within The Arc’s network. I read The Arc’s website because I know it’s a fantastic source of information on all kinds of topics out there. I respond to their Action Alerts because while Nick may not be receiving the services in jeopardy now, he may down the line.

When families of children with significant disabilities call me, they crave information. I tell them The Arc’s website is the place to go.

What support would you like to receive that you aren’t receiving — how can we at The Arc do better to include people with the most significant disabilities and their moms and families in our work and our lives?

I talk to a lot of families with family members with significant disabilities in my role with The Arc and my career at MetLife. Many of them discount organizations like The Arc because they don’t utilize the services they provide. But they also need information, and a connection – and The Arc provides that.

I think we need an online place to communicate – a blog or forum where families can talk to each other. For those of us who are parents of children with significant disabilities, it’s all about the quality of life and seeing what’s out there. We need to connect and we can lean on The Arc’s expertise. From The Arc, I follow what’s going on with states setting up ABLE accounts, where there could be sibling group opportunities for my other kids – it’s about seeing what’s out there for us.

The Arc can and should capture the interest and engagement of all families. Do we know who is on our site at 2am looking for information, but may not be connected to a chapter? We don’t – and we should be reaching those people and engaging them.

I think all families can get involved with our advocacy work. Our Action Center is full of information to educate yourself about the policy issues that impact all people with I/DD. It’s just a matter of making those connections to these silent families.

The Arc Responds to Warren Hill’s Appeal Denial by the Supreme Court

The Arc released the following statement following news that the United States Supreme Court declined to consider Warren Hill’s appeal to halt his execution because he has intellectual disability (ID). Hill’s lawyers filed the petition directly to the Supreme Court, stating that they had evidence proving Hill has ID. In 2002, the Supreme Court ruled in the Atkins v. Virginia case that executing inmates with ID is unconstitutional. However, in Georgia (where Hill is on trial), ID must be proven by the defendant “beyond a reasonable doubt,” the strictest standard in the country.

“We are extremely disappointed that the Supreme Court has chosen not to accept Warren Hill’s appeal. The high court was the last chance for a man unjustly sentenced to death, and their inaction will cost Mr. Hill his life.  They failed to order a halt to the execution despite their prior ruling in Atkins v. Virginia that established that it is unconstitutional to execute an inmate with intellectual disability,” said Peter V. Berns, CEO of The Arc.

The Arc, the nation’s largest civil rights organization for people with intellectual and developmental disabilities (I/DD), has been involved in this case through 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.

 

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

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 (I/DD), 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.

Supreme Court Must Act to Save Georgia Man with Disability from Imminent Execution

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.

Fact Checking NPR: The Real Story about Social Security & People with Disabilities

National Public Radio logoA 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.

What Did Obama Say About the Budget Battle?

You may have read our CEO Peter V. Berns’ reaction to President Obama’s speech on Wednesday about the budget battle being waged at the Federal level. You know that we at The Arc are unwavering in our conviction that we must preserve the social safety net for the most vulnerable Americans, including people with intellectual and developmental disabilities. We simply can’t balance the budget on the backs of individuals and families who need our support to meet the most basic needs of medical care, housing, employment and education opportunities, much less to meet their expectations that they be fully included and able to participate in their communities and in society. Now, you might want to read the full text of the President’s speech on the matter and judge for yourself where he falls on the subject. Tell us what you think. Is the President pursing the right path? Will he succeed against the opposition he faces in Congress?

When the White House Calls…

The White House imageWhitehouse.gov asked us to give you a heads up on a series of teleconference you might find interesting or useful. When the White House calls…we answer – so here’s your heads up.

Starting this Friday, December 3, the White House will begin hosting monthly teleconferences with updates on various disability issues. Also, these calls will be an opportunity for the Obama Administration to introduce people who work on disability policy in the federal government. We’d love to get comments from any of you who join in on the calls to find out what the hot button topics are and if they address concerns that are important to you.

Just for fun, you might also check out whitehouse.gov to see what’s going on. There is a treasure trove of information about the administration, our government and current issues ranging from civil rights to education to healthcare. You can tune into presidential addresses and even follow the Presidential blog, which recently posted an informative analysis on Medicare from the Wall Street Journal.

Call Information

Dial into the teleconference Friday, December 3 at 11:00 a.m. Eastern

(800) 230-1092

Title: Disability Call (use instead of code)

For live captioning, at time of call, log this website.

Image by Davidlat.