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The Arc Announces New Chapter in Montana to Serve People With Disabilities and Their Families

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Washington, DC – This month, The Arc officially announced the affiliation of AWARE, Inc. in Montana as a state chapter. The affiliation of AWARE will mark the first time in over a decade that The Arc will have a statewide presence in Montana.

“We are very excited to have such a strong partner in Montana and look forward to working with AWARE. Together, The Arc and AWARE will help provide individuals with intellectual and developmental disabilities throughout Montana a powerful voice,” said Peter V. Berns, CEO of The Arc.

Founded in 1976 as a non-profit corporation, AWARE delivers services for people with challenging mental health, emotional, and in some instances, physical disabilities, who otherwise would be served in a more restricted setting or perhaps would not be served at all.

With more than 900 employees in 26 communities across Montana, AWARE has been providing homes and training for adults with developmental disabilities and services for adults and children with mental illness for more than 30 years. Among AWARE’s services are group home living, supported independent living, supported employment and center-based employment.

AWARE provides:

  • case management for adults with developmental disabilities;
  • group homes for children needing personal attention and individual treatment for serious emotional disturbances;
  • case management for children and adults needing mental health treatment;
  • other youth treatment support services — family support, transitional living and treatment foster homes;
  • employment services for the chronically unemployed; and
  • transportation tailored to people with disabilities and special needs.

During their first week as a chapter of The Arc, AWARE participated in an invitation-only event at the White House. In February, 150 leaders of The Arc from across the country met with a variety of senior White House officials at a Community Leaders Briefing to ask questions and discuss issues facing people with intellectual and developmental disabilities (IDD). The session, held just for The Arc, included an unannounced visit from President Barack Obama and White House Chief of Staff Jack Lew. Many of the speakers, including President Obama, referenced the impact advocates from The Arc made during budget negotiations to protect Medicaid.

In becoming a state chapter, AWARE will be able to tap into the many resources The Arc’s National Office can provide. Larry Noonan, CEO of AWARE has expressed his interest in expanding the policy work that is being done in Montana. Noonan and his team are already very active with Montana’s Congressional delegation and in local politics throughout the state. The Arc will serve as an additional resource to them with support from our National Office’s experienced federal public policy team, a number of publications, newsletters and alerts about disability policy, and important updates straight from Washington, DC.

“Like The Arc, AWARE believes in promoting and protecting the human rights of people with intellectual and developmental disabilities and supporting their full inclusion and participation in the community,” said Noonan. “We share The Arc’s core values of people first, equity, community, self-determination and diversity.”

“Our affiliation with The Arc gives us the opportunity to be involved with folks from all over the country who are dealing with the same issues and problems we deal with in Montana. And the relationship helps with efforts to put AWARE’s Apostrophe magazine, a publication for, by and about people with developmental disabilities, into the hands of people across the country,” added Noonan.

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The Arc Announces the National Council of Self Advocates

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Washington, DC – Today, The Arc is officially launching the National Council of Self Advocates of The Arc (NCSA), and inviting individuals with intellectual and developmental disabilities (IDD) across the country to join. The first national council of its kind, the NCSA will allow individuals with IDD to join a network of leaders representing the full spectrum of ages and abilities across The Arc’s national chapter network. While promoting the active involvement of individuals with IDD in the work of The Arc, this Council will give self-advocates the chance to support each other and provide learning opportunities as they grow as advocates in their community.

“This Council allows self-advocates to share their unique perspective and truly make an impact in their communities. While we work nationally on behalf of people with IDD and their families, nothing is quite as powerful as hearing directly from self-advocates about what is important to them. They can be our movement’s strongest messengers, and this council will harness that power,” said Peter V. Berns, Chief Executive Officer of The Arc.

The NCSA was developed to foster the active involvement of individuals with IDD in the work of The Arc. Its primary purpose is to empower persons with IDD to voice their opinions about what is important to them and to ensure that they are afforded the same opportunities as everyone else to have a meaningful life in the community. In joining the Council, members will be able to network with others who are involved in advocacy work, educate the public about the issues that are important to people with IDD, and become active leaders in their communities. In addition, the Council will also be promoting leadership roles for individuals with IDD in local chapters of The Arc and supporting The Arc’s commitment to employing individuals with IDD. Learn more about the focus areas of the Council and how to join.

The NCSA is being co-convened by Barbara Coppens, Joe Meadours, and Kurt Rutzen who are all members of The Arc’s National Board of Directors. They each have a deep personal interest in this Council and are looking forward to creating a strong network of self-advocates across the country.

“I am working to educate self-advocates like myself, siblings, and family members to be more involved in advocating for our rights,” said Barbara Coppens, who has a long history of fighting for people with IDD in New Jersey. She works tirelessly, educating legislators in New Jersey about why it is so important to remove the “r-word” from state statutes and writing articles on self-advocacy to inspire others like her to join in the movement.

“This is an opportunity for us to voice our opinions and show what self-advocates across the country care about,” Joe Meadours said. “If we don’t have the proper services we won’t have a quality life.” Joe has been an advocate for many years and wants to use his story to encourage individuals with IDD to be advocates for themselves and others. He has worked in five states supporting the self advocacy movement; most recently he served as Executive Director for People First of California.

“I believe that The Arc’s National Council of Self Advocates gives the opportunity for people with disabilities to really say what they feel and to get their voices out there in a way they haven’t before,” said Kurt Rutzen, who lives in Minneapolis, Minnesota and works for the University of Minnesota’s Institute on Community Integration. Kurt began his career by conducting interviews for Quality Assurance Region 10, an organization that creates and implements person-centered interviews that enhance the quality of life for persons with developmental disabilities in Minnesota. Through this job, he was introduced to The Arc of Southeast Minnesota.

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The Arc Brings Issues Facing People With Disabilities to the White House, President Obama Tells Disability Community “I’ve Got Your Back”

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Washington, DC – Today, 150 leaders of The Arc from across the country met with a variety of senior White House officials at a Community Leaders Briefing to ask questions and discuss issues facing people with intellectual and developmental disabilities (IDD). The session, held just for The Arc, included an unannounced visit from President Barack Obama. The President spoke of his commitment to people with disabilities saying, “I’ve got your back.”

This surprise appearance by the President of the United States was the highlight of the day for many attendees, along with the opportunity to interact with high level government officials about how they can support people with IDD to live in the community. Over the course of the day, leaders of chapters of The Arc were briefed on topics ranging from Medicaid to education to community living and employment for people with IDD. Many of the speakers, including President Obama, referenced the impact advocates made during budget negotiations to protect Medicaid, and encouraged The Arc and others to continue these efforts.

Another unannounced speaker was White House Chief of Staff Jack Lew, who reiterated the President’s opposition to turning Medicaid into a block grant. He also took questions from the audience, including Barbara Coppens, a member of the national board of directors of The Arc and a self-advocate who took the opportunity to speak about the importance of self-advocacy by people with disabilities.

“I tell other self-advocates – you’ve got to get out there and advocate for yourself because you can’t rely on other people to make change for you,” said Coppens to Chief of Staff Jack Lew.

The day was organized by Kareem Dale, Special Assistant to the President for Disability Policy, who kicked off the agenda by welcoming guests and speaking about employment issues. The Arc heard from Cecilia Muñoz, Director of the White House Domestic Policy Council, who spoke of their commitment to providing services and supports to all in need. Other speakers included Carol Galante, Acting Assistant Secretary – Federal Housing Administration Commissioner, Department of Housing and Urban Development; Cindy Mann, Deputy Administrator, Centers for Medicare and Medicaid Services; Robert Gordon, Executive Associate Director, Office of Management and Budget; and Tom Perez, Assistant Attorney General for Civil Rights, Department of Justice.

Assistant Attorney General Perez discussed the recent Department of Justice settlement with the Commonwealth of Virginia regarding people with IDD who live in any of its five institutions who could live in the community. He spoke about the bipartisan work going on across the country to implement the Olmstead decision, which states that under the Americans with Disabilities Act (ADA), unnecessarily institutionalizing a person with a disability who, with proper support, is capable of and who wants to live in the community can amount to discrimination.

After a tour of the East Wing of the White House, advocates from The Arc took part in policy breakout sessions that allowed for more detailed discussions on certain issue areas, like community living, family caregiving, education, and Medicaid. The purpose of these briefings was to allow White House and administration officials to engage in a dialogue with leaders of The Arc about how government policies affect the lives of people with IDD and impact their ability to live full, independent lives. Given the Department of Education’s announcement yesterday to allow ten states waivers from some of the No Child Left Behind law requirements, the education session with Alexa Posny, Assistant Secretary, Office of Special Education and Rehabilitation Services, was incredibly timely, as were meetings with representatives from the Department of Health and Human Services, Department of Justice, Administration on Aging, and the White House Domestic Policy Council.

“This unique, face-to-face opportunity to speak directly to people in positions to make change from within the government allowed leaders of The Arc to make the voices of the millions of people with IDD heard at the White House. Our network seized on this opportunity, and we left the White House feeling a sense of accomplishment and inspiration for continued advocacy that we will take back to our communities to help grow our movement,” said Peter V. Berns, CEO of The Arc.

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The Arc’s Leaders Invited to the White House for High Level Briefings and to Advocate for People With Disabilities

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Washington, DC – Tomorrow, 150 leaders of The Arc from across the country will attend a White House Community Leaders Briefing. Over the course of the day, leaders of chapters of The Arc, including people with intellectual and developmental disabilities (IDD), will be briefed by high level White House and Administration officials on topics ranging from Medicaid to education to community living and employment for people with IDD, and have the chance to engage with and ask questions of these officials.

“This opportunity comes at a pivotal time for The Arc in our work to advocate for people with intellectual and developmental disabilities. Our chapter leaders will add an invaluable perspective, from the front lines of our movement, in our ongoing conversations with senior officials at the White House. I’m looking forward to The Arc’s network flooding the halls of the White House and listening to advocates from across the country tell their stories,” said Peter V. Berns, CEO of The Arc.

During the day-long event, participants will hear from senior White House and administration officials. Additionally, there will be a series of policy breakout sessions that will allow for more detailed discussions on certain issue areas, like community living, education, and Medicaid. The purpose of these briefings is to allow White House and administration officials to hear from leaders of The Arc about how government policies affect the lives of people with IDD and impact their ability to live full, independent lives. This unique, face-to-face opportunity to speak directly to people in positions to make change from within the government will allow leaders of The Arc to make the voices of the millions of people with IDD heard at the White House. As The Arc gears up to raise awareness of IDD during Developmental Disabilities Awareness Month in March , chapter leaders can take home new tools to help individuals in their communities utilize programs of the federal government.

“The Arc, as one of the largest organizations working with people with intellectual and developmental disabilities, brings a wealth of experience and insight to discuss today’s most important concerns facing persons with intellectual and developmental disabilities. We’re looking forward to having them here at the White House to deepen our partnership, and to discuss the issues we care about most,” Jon Carson, the Director of the Office of Public Engagement at the White House.

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

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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.

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

/in /by The Arc

Washington, DC – The Arc, the nation’s largest and oldest human rights organization for people with intellectual and developmental disabilities (IDD) 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 IDD.

“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 IDD 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.

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The Arc Responds to Potential Change in Definition of Autism

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Washington, DC – The Arc is the nation’s largest and oldest human rights organization for the people with intellectual and developmental disabilities (IDD), 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.

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The Arc Joins in Filing Supreme Court Amicus Brief on Affordable Care Act

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WASHINGTON, D.C. – The Arc released the following statement upon joining other organizations in filing an amicus brief to the Supreme Court in advance of consideration of certain provisions of the Affordable Care Act. This particular effort focuses on the individual mandate to obtain health insurance, with the overarching goal of coverage for all Americans, including people with intellectual and developmental disabilities.

“Without a doubt, the Affordable Care Act is the most significant law for people with disabilities in over twenty years. The threats to the individual mandate to obtain health insurance are too dangerous for us to sit on the sidelines. Without an obligation to buy health insurance, our country won’t be able to make significant strides toward covering everyone, including people with pre-existing conditions. The individual mandate will reduce costs in the entire health care system. The Arc won’t waiver in our commitment to this law and the real changes and cost savings to our system that will undoubtedly benefit people with disabilities, their families, the workers that support them, and our entire nation,” said Peter V. Berns, CEO of The Arc.

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

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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 (IDD) 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 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’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.

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

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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 (IDD) – 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 IDD. 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 IDD, as a force for change. Siblings are a critical part of the movement to protect the rights of people with IDD 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 IDD 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.

“Being a sibling of a person with IDD 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 IDD.