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The Arc’s Statement in Response to Congressional Hearing on Supplemental Security Income for Low Income Children

Washington, DC – Peter V. Berns, the CEO of The Arc of the United States, released the following statement about Supplemental Security Income (SSI) following today’s Ways and Means Committee hearing.

“The Arc hopes that Congress will continue to support and sustain SSI for children with significant disabilities. The children who depend on SSI have significant disabilities, live in low-income households, and rely on SSI for access to medications and to meet other essential needs – it is their lifeline. SSI enables families to access services that allow them to care for their child with a disability at home, as opposed to being placed in institutions.

We are so pleased to have a family from The Arc of Kentucky at the hearing today. Katie Bentley and her son Will are wonderful examples of what SSI does for families. Forced to quit her job to care for her son, Katie and her family are reliant on SSI benefits and the related medical supports available to him. As Katie said at today’s hearing, SSI allows Will to lead an active life in the community, while living at home. SSI means opportunities to families like the Bentleys, and we cannot afford to take these opportunities away from children with severe disabilities.

Any attempts to cut SSI for low-income children are unacceptable. We cannot allow children who are clearly in need to suffer.”

SSI is essential for low-income children with severe disabilities. This program was established to support and preserve the capacity of families to care for their children with disabilities in their own homes by easing the financial burden families of children with disabilities face. Last year alone, SSI provided benefits for more than 1 million children with severe disabilities. All children who receive SSI benefits live in low-income households. SSI benefits help struggling families afford medications and other essential services, and meet basic needs.

The Arc of the United States has joined with more than 80 national organizations to support the preservation of SSI for low-income children with disabilities.

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The Arc Speaks Out on Potential Closing Mabley and Jacksonville Developmental Centers in Illinois

The Arc of the United States fully supports the closure of the Mabley and Jacksonville Developmental Centers. With 2,027 individuals in institutions, Illinois now institutionalizes more people with intellectual and developmental disabilities (IDD) than 48 other states. Closing these facilities will start a new chapter in the state – one in which people with IDD can move on to a life that is more inclusive and allows for the opportunity to live in the community, rather than in isolation.

Institutions enforce an unnatural, isolated, and regimented lifestyle that is neither appropriate nor necessary. According to The Arc’s Families and Individuals Needs for Supports survey (FINDS), less than 1 percent of families thought institutions were the right place for their son or daughter with IDD – so more than 99 percent of respondents wanted their loved one to live elsewhere. We should be allocating resources to create new supports and services in our communities so that individuals have a choice in how and where they live, instead of simply placing them in facilities like the Mabley and Jacksonville Developmental Centers. Shifting the use of funds from institutions to individualized supports, including housing, will help make the transition easier for individuals who reside in these facilities and create a more inclusive society – which is win-win for people with disabilities and people without disabilities.

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Reaction From The Arc on House Energy and Commerce Committee Hearing on CLASS Act

Washington, DC – As the nation’s largest organization working on behalf of people with intellectual and developmental disabilities (IDD), The Arc released the following statement on today’s Congressional hearing on the CLASS Act.

“The reality is the long term services and supports needs of people with disabilities simply can’t be put on hold while Congress engages in partisan attacks. CLASS is make or break for millions of American families – Congress and HHS must find a path forward to keep this promise and take pressure off of Medicaid, or they will leave the American people with terrible choices to make that will affect their health and dignity,” said Marty Ford, Public Policy Director for The Arc.

The Arc is concerned about the tone of portions of today’s hearing and believes the issue of long term services and supports should not become a partisan football. The Arc is heartened by the commitments of some of the Committee members to find a solution to this long term care problem for millions of Americans, including people with IDD.

The Arc advocates for and serves people with IDD, including Down syndrome, autism, Fetal Alcohol Spectrum Disorders, cerebral palsy and other diagnoses. The Arc has a network of over 700 chapters across the country promoting and protecting the human rights of people with IDD and actively supporting their full inclusion and participation in the community throughout their lifetimes and without regard to diagnosis.

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Joey’s Story: King of “You Can Do Anything!”

This post was written by The Arc’s Sarah Bal, as told by Joey Ortiz.

My name is Joey Ortiz. Recently, I had the honor of being voted Homecoming King at Santa Maria High School. I want to share my story with you.

I have Down syndrome, which affects many individuals throughout the United States. I made the decision a long time ago not to let anything get in my way, not even Down syndrome. I work at a local supermarket everyday through a vocational education program and enjoy the opportunity to work in my community. Like my classmates I enjoy school and work hard to complete my assignments on time.

One day a few weeks ago I decided that I wanted to become Homecoming King. A teacher asked me a few days later if I was still interested and I registered to be one of the nominees. I rallied my friends together and we made posters and hats to promote me around school. I went around and spoke with other members of the student body, some that I had never met before, and told them that I was running for Homecoming King. A lot of people were surprised, but most people said, “Go for it Joey!” and that is exactly what I did. Their encouragement helped me feel more confident and ready to keep campaigning.

The Homecoming rally was an exciting event for everyone at school. When all of the candidates were presented everyone clapped. When my name was announced there was a ton of applause and people began to chant my name. I realized then that I had a chance at winning.

That night at the Homecoming game people began to chant my name again while they stamped their feet in the bleachers. Then to my surprise and delight, I was elected Homecoming King. All of my work had paid off, and everyone at the school chose me. All I can say is that it makes my heart glad to think that so many people like me.

I just want anyone with Down syndrome or another disability to know that you can do anything!

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Growing a Grassroots Advocacy Movement in Nevada

The Arc is happy to announce the launch of the “Growing a Grassroots Advocacy Movement” project in Nevada! This exciting new opportunity is being funded by the Nevada Governor’s Council on Developmental Disabilities. The Arc in Nevada will work to develop long-term capacity for advocates to have input and impact on issues of importance to people with developmental disabilities and their families.

With the launch of this new program, The Arc will have a statewide presence in Nevada for the first time since the mid-nineties. The project will train individuals with developmental disabilities and family members on how to impact disability policy at the local, regional and state levels, culminating in a grassroots campaign.

The training, called Partners Plus, will be conducted across the state, targeting graduates of previous Nevada Partners in Policymaking classes. This project will work to train people with disabilities and their families (parents, siblings, grandparents, other family members), primarily those who have previously completed the original Partner in Policymaking classes. Participants from The Arc in Nevada’s programs will develop a legislative advocacy platform with specific actions during the 2013 Nevada legislative session. In an effort to develop lasting impact of the trainings, some participants will work to train others in their local communities, involving advocates at all levels in the execution of the legislative platform and advocacy agenda.

In addition to the Partners Plus program, The Arc in Nevada will expand efforts to support individuals with IDD and their families through new chapter recruitment, grassroots advocacy development, and collaborative efforts with communities across Nevada.

This project will be staffed by a new member of The Arc team, Nicole Schomberg. Nicole has expertise in advocate engagement and community outreach. Most recently, Nicole worked to coordinate previous Partners in Policymaking programs in the state. Additionally, Nicole is a parent of a child with developmental disabilities, and has extensive experience working with families and self-advocates in Nevada.

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The Arc Reacts to Alleged Crimes against Four Individuals With Disabilities in Philadelphia

WASHINGTON, DC – Peter V. Berns, the CEO of The Arc of the United States, released the following statement regarding the alleged crimes committed against four individuals with disabilities in Philadelphia discovered over the weekend.

“The horrifying news out of Philadelphia about the four people with disabilities locked up in deplorable conditions is inexcusable and the justice system must get to the bottom of this case. People with disabilities are often the target of violent crime, in fact the 2008 National Crime Victim Survey found that violent crimes committed against people with disabilities is twice as high compared to those without disabilities. That’s why The Arc works with law enforcement and victim advocates to enhance their skills in reaching out to and supporting people with intellectual and developmental disabilities who are victims, to give them the tools they need to move from victim to survivor.”

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Family Served by The Arc of Jackson County Gets Extreme Home Makeover

The McPhail family from Medford in southern Oregon, are set to receive an Extreme Home Makeover from the popular ABC show of the same name to help their sons, Sawyer and Thatcher, who have autism. A third son, Crew, does not have autism. The family is served by the Families for Community program, a parent-driven group advocating for the full inclusion of all children, which is part of The Arc of Jackson County. The episode is currently scheduled to air Friday, October 28 (please check local listings).

Parents C.J. and Lindsay McPhail were interviewed on the building site by The Dove, a local Christian broadcaster, and thanked Emilie Sampson, the program director for Families for Community, along with her husband Matt, for nominating them for the show. Watch the full interview here.

Although they couldn’t reveal details of the special features built into the home until the program airs, Lindsey McPhail would say that “It’s set up to make our life easier in even the tiniest aspects. It’s going to make me a better mom.” In addition to the challenges of three growing boys, two with special needs, the McPhails contended with mold and asbestos problems along with old wiring and a lack of heat in part of their former home.

Of the new house, C.J. McPhail said “this home is a hug. It’s a home that when you walk into it just gives you a hug with all of the love that went into it.”

Along with praising all of the community volunteers and various nonprofit groups the family is involved in, the McPhails had high praise for the Extreme Makeover: Home Edition team. “They care about the cause and spreading awareness of autism. They’re truly amazing people, it’s not an act,” said C.J.

Once the episode airs and the family is authorized to share details about the house with the community, they plan on letting people tour their new home as a fundraising and awareness raising activity for the local nonprofits such as The Arc who they are associated with.

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The Arc Responds to Announcement on CLASS Program

Today, the Department of Health and Human Services announced that it doesn’t see a path forward for Community Living Assistance Services and Supports (CLASS) Program at this time.

The Community Living Assistance Services and Supports (CLASS) Program was created to help working adults prepare for their future in the event they need help maintaining independence in the community. It was also intended to take the pressure off Medicaid, so that Medicaid can better serve the needs of low income communities. If CLASS is not implemented, the Medicaid program will continue to take on the load of long term service needs for many Americans, who will be forced into a lifetime of poverty to qualify for this assistance.

The need for long term care remains a major issue facing millions of American families, and it will take real leadership in Washington to solve this problem so that families face a more certain economic future. Members of The Arc expect the Obama Administration to find a way to keep the promise they made to individuals who need the services CLASS would provide. We stand ready to help the White House and HHS find a solution to make the CLASS program viable.

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Cloud Computing and People with Cognitive Disabilities

I’m here at the University of Colorado in Boulder at a fascinating two-day conference on cloud computing for people with cognitive disabilities. Hosted by the Coleman Institute for Cognitive Disabilities and others, the conference focuses on envisioning a future in which people with intellectual and developmental disabilities (IDD) use cloud technology to support every day activities. “Cloud computing?” you may ask. What is cloud computing, and what is the relationship to supporting people with IDD?

Cloud computing is real and is already happening. According to Wikipedia, “Cloud computing is the delivery of computing as a service rather than a product, whereby shared resources, software, and information are provided to computers and other devices as a utility (like the electricity grid) over a network (typically the Internet).” Think of internet-based tools such as Google docs, Picasa photos, on-line education, or paying a speeding ticket online. Online banking. Applications on your cell phone. Remote supports in residential settings that use off-site monitoring. Smart homes. These are all examples of cloud technology.

Families connected to IDD need to be aware of the impending crisis: there are not enough personal support staff to go around for all of the estimated 8 million people with IDD, many of whom are living with aging parents. Add to that equation the rising aging population that will be competing for care attendants. The writing is on the wall – there are fewer government resources to pay for traditional support services for people with IDD as we know them today. As a result, we need to be looking at alternative solutions to support needs now. Developers of cloud technology are working on supports for people with IDD that include family involvement and partnerships, supported and customized employment, recreation and leisure, remote therapies and counseling, health promotion, fiscal management, and many other daily supports. While the research is largely catching up to this digital revolution, early indications are that cloud technology advances the independence and self determination of people with IDD. While this technology will never replace the one-on-one supports needed by those with significant support needs, for many others cloud technology represents a new way of achieving personal goals and moving through day to day activities, with less reliance on others.

The Arc’s Research and Innovations Department will be highlighting cloud technology on a regular basis. Good places to get information online are the Global Public Inclusive Infrastructure (GPII), Ablelink Technologies, and the Coleman Institute for Cognitive Disabilities.

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The Arc in the News!

The Arc has been getting great news coverage both nationally and locally in the last few weeks. We wanted to share with you some of the most exciting stories.

  • New York Daily News – The Arc responds to Congresswoman Bachmann’s comments about vaccinations causing “mental retardation”.
  • – CEO of the Arc Peter V. Berns discusses the use of the R-word, and why it is unacceptable. This is also in response to Congresswoman Bachmann’s comments, but focuses more on the use of derogatory language to people with intellectual and developmental disabilities as opposed to the lack of evidence for her claims about vaccinations.
  • NBC 9 News in Denver – A great piece about The Arc’s 60th Convention in Denver including an interview with CEO of The Arc, Peter V. Berns, footage of the convention, and an interview with an all-star volunteer and self-advocate Ann Rossart.