The Arc Responds to the U.S. House of Representatives Vote to Repeal the CLASS Program

Washington, DC – The Arc of the United States, released the following statement in response to the U.S. House of Representatives vote to repeal the Community Living Assistance Services and Supports (CLASS) Program.

“Repealing the CLASS Program could force Americans to wait another generation for a solution to the need for long term services.  This bill doesn’t change the fact that many Americans require these services, and it certainly doesn’t relieve the pressure off of Medicaid so that Medicaid can better serve the needs of low income communities.  This vote won’t be the last say on this issue, and The Arc stands ready to work with Congress and the Administration to find a workable solution,” said Peter V. Berns, CEO of The Arc.

The Community Living Assistance Services and Supports (CLASS) Program was created by the Affordable Care Act to help working adults prepare for their future in the event they need help maintaining independence in the community. If CLASS is not implemented, the Medicaid program will continue to take on the load of long term service needs for many individuals. Average home and community-based care now costs over $21,000 per year.  Few Americans have insurance to cover these costs.  Only 3% have private long term care insurance and the majority are forced to impoverish themselves to qualify for Medicaid.

The Arc’s Reaction to the Department of Justice and Commonwealth of Virginia Settlement Regarding Institutions

Washington, DC – The Arc, the nation’s largest and oldest human rights organization for people with intellectual and developmental disabilities (I/DD) serving more than a million individuals and their families, issued the following statement on the news that the Commonwealth of Virginia has reached a deal with the U.S. Department of Justice regarding four of its institutions for people with I/DD.

“This settlement is a big step forward in bringing people with intellectual and developmental disabilities out of the shadows and into communities across Virginia, where they belong.  The Department of Justice’s commitment to monitoring and oversight of the implementation of this agreement will be key to ensuring that the shift to community based services away from institutions will be successful for people with I/DD in Virginia.

“The Arc of Virginia and the network of chapters across the state have been instrumental in putting this agreement in place.  They will continue their work at the state capitol to advocate for additional resources for people with disabilities so that they can move off of waiting lists and begin receiving the supports they need to live independent lives in the community,” said Peter V. Berns, CEO of The Arc.

The Arc Responds to Potential Change in Definition of Autism

Washington, DC – The Arc is the nation’s largest and oldest human rights organization for the people with intellectual and developmental disabilities (I/DD), serving more than a million individuals and their families including people with autism, Asperger’s syndrome, and pervasive developmental disorder, not otherwise specified (P.D.D.-N.O.S).  In response to the news that the American Psychiatric Association is working on revisions to the definition of autism, The Arc issued the following reaction:

“Over the last decade, we have made major strides in ensuring that people diagnosed with autism, Asperger’s syndrome, and P.D.D.-N.O.S. have access to the services that advance their health, education, independent living skills, and work skills.  These efforts have increased inclusion in educational settings, and, in society, young adults with disabilities are gaining life skills that can lead to jobs and independence.  The unintended consequences of a diagnostic definition change could potentially limit access to the services that children and adults with autism and P.D.D.-N.O.S. need, potentially putting at risk their education, and the health and economic stability of their own lives and the lives of their families,” said Peter V. Berns, CEO of The Arc.

The Arc Announces New Office in Nevada to Serve People with Disabilities and their Families

Washington, DC – This month, The Arc of the United States announced the launch of the “Growing a Grassroots Advocacy Movement” project in Nevada. This program, funded by the Nevada Governor’s Council on Developmental Disabilities and The Arc of the United States, will work to develop long-term capacity for advocates to have input and impact on issues of importance to people with intellectual and developmental disabilities (I/DD) and their families.

The launch of this project will mark the first time The Arc will have a statewide presence in Nevada since the mid-nineties. Specifically this project will train individuals with developmental disabilities and members of their families 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.

“The Arc is very excited about this opportunity to serve Nevada on a statewide level for the first time in over a decade. This is a wonderful chance to empower individuals with intellectual and developmental disabilities, as well as their family members, to be advocates and influence disability policy right in their own backyard,” said Peter V. Berns, CEO of The Arc.

In addition to the Partners Plus program, The Arc in Nevada will expand efforts to support individuals with I/DD 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’s team, Nicole Schomberg. Nicole is a parent of a child with developmental disabilities, and has extensive experience working with families and self-advocates in Nevada. To learn more about this program visit The Arc in Nevada website.

The Arc Announces Major Initiatives for Siblings of People with Intellectual and Developmental Disabilities

Washington, DC – The Arc of the United States is building on the foundation of the organization, founded by families over 60 years ago, by announcing two major initiatives for siblings of people with intellectual and developmental disabilities (I/DD) – a new partnership with the national Sibling Leadership Network (SLN), and the formation of The Arc’s National Sibling Council.

The leadership and active involvement of siblings is critical to ensuring the full inclusion and participation of their loved ones in all aspects of community life.  These exciting new initiatives seek to connect siblings as an important segment of the disability movement to impact policy, service delivery, and the quality of life for the millions of Americans with I/DD.  The Arc’s new sibling initiatives will also provide the necessary support to siblings who are looking for resources and answers to questions unique to them and their family’s future.

“Families, including siblings, built The Arc into what it is today, and these initiatives build upon their decades-long work in the disability movement.  Siblings don’t always recognize their own unique ability to impact their loved one’s life, and the lives of millions of other siblings just like them across the country, just by banding together, supporting each other, and speaking up,” said Peter V. Berns, Chief Executive Officer of The Arc.

Berns added: “There is a tremendous opportunity in communities throughout the country to harness the power of siblings as advocates, working hand-in-hand with their brothers and sisters with I/DD, as a force for change.  Siblings are a critical part of the movement to protect the rights of people with I/DD to be included in society.”

Founded in 2007, the mission of the SLN is to provide siblings of individuals with disabilities the information, support and tools to advocate with their brothers and sisters and to promote the issues important to them and their entire families.  Under this new partnership, the two organizations will develop and offer dedicated programming for siblings at The Arc’s National Convention and other events, including distance learning based programs on topics of interest to siblings, volunteers and professionals of The Arc on sibling issues.  They will also create networking opportunities for siblings using social media tools, support the development of sibling services at state and local chapters of The Arc, and work to establish state and local chapters of the SLN.

“Siblings represent the longest lasting relationship many experience.  As we age, siblings who were once rivals grow closer and we come to rely on each other for essential support, particularly as parents age. Through our partnership with The Arc, we believe that we can make a difference in the long term natural supports of people with disabilities by providing their brothers and sisters the information they need through welcoming communities. By getting siblings involved in the game earlier and more often, we think it can allow siblings and people with disabilities to have more control over the involvement of family in support across the lifespan,” said John Kramer, Sibling and Chair of The Sibling Leadership Network.

Born out of this partnership will be the creation of The Arc’s National Sibling Council.  This new initiative of The Arc will offer opportunities for networking and support to siblings and their families, build a broad network of siblings that support the advocacy and programmatic efforts of The Arc at all levels, offer leadership development and training through involvement in standing and ad hoc committees and task forces of The Arc, and provide face-to-face and online networking and social opportunities.  In addition, The Council will be a place that siblings of individuals with I/DD that may be new to or overwhelmed by their role can turn to when they need guidance or support in situations unique to their family.

The Arc’s National Sibling Council welcomes all siblings and those who support siblings who are members of The Arc either at the local, state or national level.  Those interested in becoming Contributors to the Council, by donating additional funds, will ensure the establishment and sustainability of this essential new program.  Go to our website to learn more about and join the National Sibling Council and take the opportunity to become a Contributor.

“Being a sibling of a person with I/DD is interesting, funny, frustrating, proud, challenging, loving and respectful.  Growing up with my sister Martha, I could usually convince my parents to let her try something they were worried that she could not do by telling them that I would do it with her.  How amazing it would have been to hear another sibling’s stories – to learn how to manage something differently, to share anger, to boast of an achievement that to my friends might seem trivial, but another sibling ‘knows’ the triumph.  The Sibling Leadership Network and The Arc’s National Sibling Council are welcoming networks that identify with siblings, help them connect with information and with other siblings, and learn how to partner and to advocate,” said Nancy Webster, Vice President of the National Board of The Arc of the United States and a sibling of a sister with I/DD.

The Arc Welcomes Iowa’s Tyler Smothers, “Achieve with us” Contest Winner, to Washington, DC to Advocate on Capitol Hill

Tyler SmothersWashington, DC – This week, The Arc of the United States will welcome Tyler Smothers, from Cedar Rapids, Iowa to Washington, DC to meet with members of the Iowa Congressional delegation.

In August, The Arc announced that Tyler was the winner of the first ever “Achieve with us” social media contest. The contest invited individuals with intellectual and developmental disabilities (I/DD) to share their stories of achievement. Out of 119 contestants garnering more than 25,000 votes, Tyler was selected for his impressive achievements in his community, which had been devastated by floods in 2008.

Tyler was very involved with his local chapter, The Arc of East Central Iowa, where he participated in day programs, social events, and interacted in his community.  As downtown Cedar Rapids succumbed to flood waters, and the chapter’s office sustained major damage, Tyler saw the need to help his community get back on its feet.  So he became the driving force behind The Arc of East Central Iowa’s annual bike riding fundraiser “Tour de Flood.” Putting aside his wheelchair and using an adaptive bike, Tyler leads the ride, and every year since, has raised an impressive amount of funds for his chapter.  In fact, in the first year of the ride, Tyler set a goal of raising $2,000 – he far exceeded that amount, bringing in $18,000.  The 4th annual “Tour de Flood” took place on September 18.

As the winner of the contest, Tyler and his mother received a two day trip to Washington, DC. Tyler will be in Washington, DC from November 1-3, meeting with The Arc’s National staff in addition to members of his Congressional delegation. He is scheduled to meet with Senator Tom Harkin, Senator Chuck Grassley, and Congressman Dave Loebsack (IA-2) to share his story of achievement. When asked what he will discuss when he comes to Washington, Tyler said, “I am going to tell them living with a disability is challenging.”

Tyler’s meetings on Capitol Hill come at a critical juncture in budget negotiations, where programs that people with I/DD rely on could be on the table for cuts.  The Arc is in the midst of an advocacy campaign, called “Don’t Cut Our Lifeline,” to protect Medicaid.

“Tyler exemplifies what The Arc stands for and we are honored to host him and his family during their trip to Washington, DC. Tyler is an inspiration to his friends and neighbors in Iowa, and this week, he will take his message to leaders in Washington to demonstrate why in particular the Medicaid lifeline is so important,” said Peter V. Berns, CEO of The Arc.

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.

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.”

The Arc Announces “Achieve with us” Social Media Contest Winner

Washington, DC – In June, The Arc announced the first ever “Achieve with us” social media contest, inviting individuals with intellectual and developmental disabilities (I/DD) to share their stories of achievement.  All entries were submitted through The Arc’s Facebook fan page, and today, The Arc is announcing the winner of this nationwide contest – Tyler Smothers from Cedar Rapids, Iowa.

Out of 119 contestants garnering more than 25,000 votes, Tyler was the top vote getter in the contest and was selected for his impressive fundraising work for a local chapter of The Arc. Tyler is the driving force behind The Arc of East Central Iowa’s annual bike riding fundraiser “Tour de Flood.”  Tyler helped create this event in 2008 to help raise money for flood relief. The goal was to raise $2,000, but by the end of the event, over $18,000 was donated.  Using an adaptive bike, Tyler leads the ride, in spite of the challenges presented by Occipital Encephelocele, which causes Arnold Chiari Malformation type III. This fundraiser has become a celebrated annual event that continues to raise tens of thousands of dollars every year for The Arc of East Central Iowa’s enrichment programs for all ages, greatly due to Tyler’s passion and dedication. This year’s race will be on September 18th.

Tyler and his mother will receive a trip for two for two days to Washington, DC, to share his story of achievement with The Arc’s National Office.  He will also have an opportunity to meet with members of his Congressional delegation or their staff to discuss his work on behalf of the people of Cedar Rapids.

Tyler was thrilled to hear he was the winner of the contest and said, “This is so exciting and awesome, I am going to love going to Washington, DC.” He is very enthusiastic about his trip to DC and looks forward to potentially meeting members of the Iowa delegation and said he hopes to meet President Obama and the First Lady as well. When asked what he will say when he comes to Washington, he said, “I am going to tell them living with a disability is challenging.”

“Tyler Smothers embodies The Arc’s belief that for all people with intellectual and developmental disabilities, achieving your goals and dreams is possible with drive, determination, and support from family and friends.  This social media contest was successful beyond our expectations, and shows the power of people with intellectual and developmental disabilities in their communities,” said Peter V. Berns, CEO of The Arc.

The Arc advocates for and serves people with I/DD, 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 I/DD and actively supporting their full inclusion and participation in the community throughout their lifetimes and without regard to diagnosis.

The Arc Selected as a Top Nonprofit Working for People with Disabilities

WASHINGTON, DC – The Arc has been chosen as one of the top nonprofits working for people with disabilities by Philanthropedia, a subsidiary of GuideStar, which is a nonprofit organization working to help make the public, including donors, aware of the highest impact nonprofits in a cause.  The Arc was selected as one of eleven high-impact nonprofits in the disability field by a group of 79 experts, including foundation professionals, nonprofit senior staff, academics, and researchers.

The experts evaluated each nonprofit based on their ability to carry out their mission, their organizational strengths and, most importantly, evidence of the impact they are achieving on behalf of the people and communities the nonprofit serves. According to one expert who reviewed The Arc’s submission, “The Arc is the nation’s touchstone for individuals with intellectual disabilities and their families. The Arc has become the national center for information dissemination. In addition, its leadership has committed itself to ensuring that Washington keeps people with disabilities in the forefront when making important employment, health care and related decisions.”

Philanthropedia, which was acquired by GuideStar in April 2011, is unique from other online rating sites or donation sites because they use experts to identify high-impact nonprofits.  GuideStar is the industry leader in nonprofit data with information on more than 1.8 million nonprofits. And, as an industry leader, GuideStar has a national audience of millions of professionals, funders, advisors, individuals, and others.

“We are honored to have received this distinction from Philanthropedia and GuideStar.  For the last 60 years, The Arc has led the movement for improving the lives of individuals with intellectual and developmental disabilities.  In order to continue our mission, we need the support of donors, advocates, and dedicated professionals in the disability field, and this acknowledgement can only help us grow at all levels, nationally and in local communities across the country,” said Peter V. Berns, The Arc’s CEO.

To read more about experts in the field have to say about The Arc, click on the Expert Reviews section on The Arc’s organization profile.  All the information collected from the research is available on Philanthropedia’s website and will shortly be available on GuideStar Take Action’s website.

The Arc has also been honored by BBB/Wise Giving Alliance and American Institute on Philanthropy and the recently released Charting Impact initiative as it works alongside its network of over 700 chapters to implement is high impact practices in its own governance and management.