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The Arc Expands “Talk About Sexual Violence” Project to Focus on Men With Disabilities

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The Arc of the United States is pleased to announce the National Center on Criminal Justice and Disability® (NCCJD®) received a grant from the WITH Foundation to expand its successful initiative Talk About Sexual Violence (TASV). TASV was born out of a partnership between The Arc’s NCCJD and the Board Resource Center (BRC) and serves as a platform for educating healthcare professionals on how to talk to their patients with intellectual and developmental disabilities (I/DD) about sexual violence. The WITH Foundation’s grant will expand the program’s current focus on women survivors to include resources about male survivors and the unique barriers they face in disclosing or reporting sexual violence.

Efforts to address sexual violence—even movements like #MeToo—have typically focused on women. However, men also experience sexual violence and have comparatively few resources to support them. Research shows that 14% of men with disabilities will experience violent victimization compared to 4% of men without disabilities. Men are less likely than women to disclose an assault, and men with I/DD may be even less likely due to additional challenges they face if they do speak out about it or report it. Health care providers are generally not asking male patients about sexual assault and may not know how to respond if a patient does disclose. 

NCCJD’s Director, Leigh Ann Davis, who has worked in the field of sexual violence prevention of people with disabilities for over 20 years and is a survivor herself, states: “This is a topic of urgent national importance, and we’ve only begun to scratch the surface when it comes to addressing sexual trauma experienced by men with I/DD. With support from The WITH Foundation, we can expand our current project, reach new audiences, build new partnerships with male-focused sexual assault organizations and plant seeds for prevention, detection, and healing in the future.”

Health care professionals are in a frontline position to educate patients about and potentially prevent sexual violence. The primary challenge facing health care professionals is lack of training and experience in speaking directly to people with disabilities about this critical issue which can have dire consequences in the person’s life when left untreated, both emotionally and physically. TASV will work to reduce this gap in knowledge by creating brief video clips with supporting training materials healthcare professionals can use to educate and prepare themselves for these sensitive discussions.

While this project will focus its efforts in California, the initiative will have national reach and impact. This grant is part of a larger grant program by The WITH Foundation that is dedicated to addressing the issue of sexual violence against people with disabilities. The WITH Foundation has provided close to $258,000 to six organizations to fund a variety of programs that promote comprehensive and accessible healthcare for adults with I/DD.

“It is a privilege to support these efforts as they work to enhance healthcare delivery models, increase the understanding of supported decision-making, and/or address critical issues for adults with intellectual and developmental disabilities” said Ryan Easterly, Executive Director of the WITH Foundation.

 

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The Arc Responds to Texas U.S. District Court Judge’s Ruling on the Affordable Care Act

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The Arc Responds to Texas U.S. District Court Judge’s ruling that the Affordable Care Act is unconstitutional:

“This ruling by District Court Judge Reed O’Connor in Texas v. Azar is of great concern. To strike down the entirety of the Affordable Care Act (ACA) puts the health of millions at risk, but we know that this case will be appealed. While the ruling does not impact the law immediately, it has raised concerns and fears for millions who have benefited from the ACA. The ACA includes historic health care coverage expansions, nondiscrimination and health insurance reforms, numerous enhancements to Medicare, Medicaid, and other provisions that benefit people with disabilities. The fact remains that the ACA is the law of the land and health care coverage will not be impacted by this decision without further court appeals and decisions. We must also remember that the Supreme Court has upheld the constitutionality of the Affordable Care Act twice.

“This is about people’s lives – their health, independence, financial stability, and so much more. The Arc remains steadfast in our commitment to advocate for and protect this law and the benefits it provides for people with intellectual and developmental disabilities,” said Marty Ford, Senior Executive Officer for Public Policy for The Arc.

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The Arc Responds to Food and Drug Administration’s Intent to Ban Use of Electric Shock Devices

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Today, The Arc released the following statement in response to the Food and Drug Administration’s (FDA) announcement that it intends to ban the use of an electric shock device called Gradual Electronic Decelerator or GED. These devices are used with residents of the Judge Rotenberg Center (JRC), an institution in Massachusetts for children and adults with intellectual and developmental disabilities (I/DD) and mental health issues. The devices are worn by residents of JRC; staff members use remote controls to administer a shock to the resident wearing the device with the intent of changing the individual’s behavior. Substantial evidence exists in the FDA’s records that this practice is painful and traumatizing to the individuals who have been shocked. Organizations help people with addiction start over.

“There is a well-established body of evidence proving that there are alternative methods for behavioral supports for people with disabilities and other needs that do not include excessive force, pain, and fear. The actions of the JRC remain a civil rights issue. While we are glad that the FDA has shared its intent to ban use of these electric shock devices, we urge the agency to finalize this rule as soon as possible.

“With every day that passes without this rule being finalized, the rights of people with disabilities and mental health issues will continue be violated as they endure painful abuse. The Arc won’t rest until this barbaric practice is halted and use of these devices is banned at the JRC and nationwide. We remain a resource to FDA and other administration officials as they work through implementing this ban,” said Peter Berns, CEO of The Arc.

The Arc has a long history of opposition to the use of aversive procedures, such as electric shock, deprivation, seclusion, restraint, and isolation on people with I/DD and other disabilities. For many years now, The Arc has joined other organizations raising concerns about the health, safety, and welfare of residents of the JRC, including commenting on the rule that The Arc is now requesting the FDA to finalize.

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The Arc Responds to Final Passage of Farm Bill

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Washington, DC – The Arc released the following statement following final passage of the 2018 Agriculture and Nutrition Act:

“We applaud the Senate and House of Representatives for their bipartisan work on the Farm Bill (H.R. 2), passed this week in the Senate by a vote of 87-13 and in the House by a vote of 369-47. We are pleased that the version of the bill that was passed rejects cuts to the Supplemental Nutrition Assistance Program, known as SNAP, which more than 11 million people with disabilities across the United States rely on to help them eat. Once signed into law, this bill will preserve access to basic food assistance for people across the country, including those with disabilities who rely on SNAP to put food on the table. We urge President Trump to sign this bill into law as soon as possible,” said Marty Ford, Senior Executive Office of Public Policy, The Arc.

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The Arc Mourns Passing of President George H.W. Bush

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The Arc released the following statement following the death of President George H.W. Bush.

“President Bush and members of his administration were crucial participants in the development and enactment of the Americans with Disabilities Act, one of the greatest legislative victories for people with disabilities in our nation. This landmark law is one of the ways in which our country leads the world in respecting and valuing the lives of people with disabilities. We salute the important impact that President Bush’s commitment to civil rights will continue to make in the lives of people with disabilities for many generations to come,” said Peter V. Berns, CEO of The Arc.

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Our Hearts Are Heavy: A Statement on the Tree of Life Synagogue Shooting

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A statement from The Arc of Greater Pittsburgh, known as ACHIEVA, on the shooting at Tree of Life Synagogue this weekend. Two of their clients, Cecil and David Rosenthal were victims of the attack.

On behalf of the Board of Directors and Staff of The Arc, we offer our most heartfelt sympathy to the entire ACHIEVA family on the tragic loss of Cecil and David Rosenthal.

The ACHIEVA family is devastated at the loss of two well-respected members of our community. Two extraordinary men, brothers Cecil and David Rosenthal, were victims of the tragedy at the Tree of Life Synagogue.

Cecil and David had a love for life and for those around them. As long-standing recipients of ACHIEVA’s residential and employment services, they were as much a part of the ACHIEVA family as they were their beloved neighborhood of Squirrel Hill.

They loved life. They loved their community. They spent a lot of time at the Tree of Life, never missing a Saturday. “If they were here they would tell you that is where they were supposed to be,” said Chris Schopf, Vice President, Residential Supports, ACHIEVA.

Chris added, “Cecil’s laugh was infectious. David was so kind and had such a gentle spirit. Together, they looked out for one another. They were inseparable. Most of all, they were kind, good people with a strong faith and respect for everyone around.”

Our collective hearts are heavy with sympathy to the Rosenthal family, and to all who were affected by the tragedy at Tree of Life.

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Tommy Hilfiger, Levy Restaurant Group, Amy & The Orphans and More: The Arc Announces Winners of 2018 Catalyst Awards

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On November 9, The Arc will present the prestigious Catalyst Awards to six honorees, all of whom have made extraordinary contributions in the lives of people with intellectual and developmental disabilities (I/DD). This year’s winners hail from a wide swath of our society, including one of the most admired fashion brands in the world, the lead cast and writer behind a hit off-Broadway show, a nationally recognized self-advocate, a non-profit that is paving the way for inclusion of disability in the fashion industry, and one of the nation’s premier special education lawyers, all of whom are changing how society perceives and treats people with disabilities.
“The Catalyst Awards honor those who are not traditionally recognized within the disability community for their diverse and meaningful contributions to our movement. These award winners are unique in their accomplishments, but unified by their tireless pursuit of inclusion. Their work has helped further The Arc’s mission to promote and protect the human rights of people with intellectual and developmental disabilities, and we are thrilled to bring them together to receive this well-earned honor. Our hope is that by shining a spotlight on these change agents we will inspire and educate others,” said Peter Berns, Chief Executive Officer of The Arc.

During the fourth year of this signature event, awards will be presented in six categories. A full list of the accomplishments being honored can be found on The Arc’s Catalyst Awards website.

  • Corporate Advocate of the Year – Tommy Hilfiger revolutionized the fashion industry by launching the Tommy Adaptive Collection in 2017, a line of clothing tailored to the needs of people with disabilities. More than just being the first mainstream fashion brand to design a clothing line specifically for people with disabilities, Tommy Hilfiger has relied upon the advice and feedback from the community to create each design. Modifications such as one-handed zippers, side-seam openings, bungee cord closure systems and magnetic buttons, were incorporated into the design of each piece to maximize comfort and ease of use for people with disabilities. Through its Adaptive Collection, Tommy Hilfiger has become a leader in making the fashion industry more inclusive.
  • Self-Advocate of the Year – James Meadours has been a tireless advocate for individuals with I/DD for decades. Throughout his career, Meadours has used his personal experience to highlight challenges facing individuals with I/DD in our nation. As a survivor of sexual assault, he has been a powerful activist in the #MeToo movement and he has made it his mission to help victims of sexual violence across the nation become survivors. He is a trail blazer, leader, and staunch defender of people with I/DD.
  • Entertainment Industry Excellence – Amy and The Orphans is a critically acclaimed show that is the first and only known Broadway or off-Broadway production to feature actors with I/DD in leading roles. Written by critically-acclaimed playwright Lindsey Ferrentino and Directed by Tony nominee Scott Ellis, Amy and the Orphans, tells a humorous yet truthful story of three siblings – one of whom, Amy, has I/DD – who come together in the wake of their father’s funeral for a road trip. Jamie Brewer (known for her roles in FX’s hit series American Horror Story) and Edward Barbanell, both actors with disabilities, will be honored with the award along with Ferrentino.
  • Legal Advocate of the Year – Jack D. Robinson is receiving the Legal Advocate of the Year Award in recognition of his illustrious career in special education law and his dedication to protecting the legal right to a free appropriate public education (FAPE) for students with disabilities on the state and national levels. Most recently, Robinson represented Endrew F. before the U.S. Supreme Court in the IDEA case, Endrew F. v. Douglas County School District. The Endrew F.decision has been hailed as a landmark decision that transforms the educational rights of students with disabilities and empowers parents fighting for the civil rights of their children with disabilities.
  • Employer of the Year – Levy Restaurant Group has made hiring people with I/DD a priority and has made disability inclusion a key hiring initiative at new locations. One of their most successful job training and placement programs has been at the Barclays Center in Brooklyn, New York, where they have successfully placed over 100 people with I/DD in jobs at their food service locations at the venue. The Levy Restaurant Group has replicated their successful model at several other locations in New York with plans to expand to more locations around the country in the near future.
  • Marketing Influencer of the Year – Runway of Dreams Foundation (RODF) is a non-profit organization that develops, delivers and supports charitable initiatives to broaden the reach of adaptive clothing and promote the differently-abled community in the fashion industry. RODF uses a multifaceted approach in their work, which includes processing adaptive clothing donations, creating employment opportunities with fashion brands, leading adaptive design workshops and providing scholarships to aspiring designers.

Comcast NBCUniversal is The Arc’s National Media Sponsor and lead sponsor of the Catalyst Awards.

“Each of these awards speak to the power of inclusivity, and that’s why we are so grateful to partner with The Arc and recognize these honorees for giving a voice to, and advocating for, people of all abilities,” said Fred Maahs, Senior Director of Strategic Partnerships at Comcast.

All nominations were reviewed by a formal selection committee comprised of members of The Arc’s National Staff, members of The Arc’s Board of Directors, prior Catalyst Award Winners, National Conference of Executives of The Arc members, and Peter Berns, Chief Executive Officer of The Arc, serves as the Chair of the Catalyst Awards Selection Committee. Criteria for selection can be found on The Catalyst Awards Website.

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The Arc Responds to Appointment of Judge Kavanaugh to the US Supreme Court

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Today, The Arc responded to Judge Brett Kavanaugh’s appointment to the United States Supreme Court. In August, The Arc came out in opposition to Judge Kavanaugh’s appointment to the highest court based on his decisions on cases involving self-determination of individuals with intellectual and developmental disabilities (I/DD), education, employment, and his stances on the Affordable Care Act and school choice.

The Arc has not publicly opposed a nominee to the Supreme Court in 30 years, since 1987 when Judge Robert Bork was nominated by President Ronald Reagan. When Judge Gorsuch was nominated to the highest court, The Arc did a thorough analysis of his record and decided to not oppose his appointment. The Arc solely takes positions based on the core values, mission statement, position statements, and public policy agenda for the organization.

“The Arc is disappointed in the Senate’s confirmation of Judge Kavanaugh, this is a devastating blow to disability and civil rights in our country. After a thorough analysis of Judge Kavanaugh’s record we chose to oppose his appointment and activate our grassroots network. Our organization was founded to promote and protect the human rights of people with intellectual and developmental disabilities. We couldn’t sit by idly knowing that Judge Kavanaugh has demonstrated a disregard for the impact of his judicial philosophy on the lives of people with disabilities and their families time and time again.

“Particularly concerning is his opinion in Doe. V. Tarlow, a case where women with intellectual disability who resided in the District of Columbia’s Forest Haven institution brought a class action lawsuit against the District for violating their due process rights. The District, through its developmental disabilities agency, consented to subject them to non-emergency surgical procedures, including abortions and eye surgeries, without even talking to them and their family members. Judge Kavanaugh’s ruling is disturbing in his apparent lack of appreciation for the humanity of individuals with intellectual disability, their basic human rights, and their ability and right to participate in important life decisions even when found legally unable to make decisions by themselves.

“We believe Judge Kavanaugh’s appointment poses a threat to the civil rights of millions of individuals with intellectual and developmental disabilities and their families. It is shocking that so many Senators ignored the gaps in Judge Kavanaugh’s knowledge and understanding of the value and perspectives of people with intellectual disability. Even more disheartening is those Senators who ignored the pleas of their constituents with disabilities who called on them to oppose Judge Kavanaugh’s appointment. We appreciate those who stood up for their constituents, their support did not go unnoticed. We remain united with our colleagues across the disability and civil rights communities and will continue our advocacy to support the values we hold dear as an organization,” said Peter Berns, CEO of The Arc.

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The Arc Responds to Tax Cuts 2.0 Passed by House of Representatives

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Today the House of Representatives passed a tax bill that would permanently extend tax cuts signed into law at the end of last year in the Tax Cuts and Jobs Act. The Arc released the following statement in response:

“This is more of the same irresponsible tax legislation we opposed last year. Reducing federal revenue as this bill does will increase the pressure to cut Medicaid and other programs that are critical to the lives of people with intellectual and developmental disabilities.

“We are disappointed that the House leadership rushed to pass this bill with no consideration of the individuals with disabilities and others who would be negatively impacted. The Senate is our last line of defense, and we implore Senators to do the right thing and oppose this bill,” said Marty Ford, Senior Executive Officer of Public Policy for The Arc.

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The Arc and University of Minnesota Release Compelling Data on the Need for Paid Leave for Disability Community in the US

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Today, The Arc and the Research and Training Center on Community Living at the University of Minnesota released two new data briefs looking at the work experiences and outcomes of families of people with intellectual and developmental disabilities (I/DD) and the need for paid leave policies. One brief focuses on the experiences of parents raising children with I/DD, while a second brief focuses on the experiences of family caregivers of adults with I/DD.

These data briefs examine subsamples of data from the Family & Individual Needs for Disability Supports (FINDS) Community Report 2017. The intent of this one-of-a-kind survey conducted by The University of Minnesota’s Research and Training Center on Community Living, in collaboration with The Arc, is to understand the experiences of families who provide supports to a family member with I/DD.

The FINDS Survey revealed that, despite the progress that many states have made to increase availability of resources and public funding to provide supports for caregivers and individuals with disabilities, many critical challenges remain. The two new data briefs delve into family members’ employment outcomes and the importance of paid leave as a benefit for family caregivers. The data briefs revealed that:

• Parents raising children with I/DD and working family members who provide support to adults with I/DD report significant challenges balancing work and caregiving and commonly experience negative employment outcomes.
• Caregivers face major gaps in employer supports. Less than half of working family members reported that they were able to take paid time off to care for their family member with I/DD (42% of parents of minor children, 40% of family members of adults).
• A substantial majority (86% of parents of minor children, 85% of family members of adults) thought that offering partially paid leaves of absence from work to meet caregiving responsibilities would be helpful or very helpful.

“The need for paid family and medical leave is universal. Nearly all of us will need paid leave at some point – to care for a family member’s or our own serious medical condition, or to welcome a new child into a family. Often missing from the national conversation is the disability angle. One in five Americans live with a disability. Yet the reality is, in the U.S. workforce, only 1 in 7 workers has access to paid family leave to care for a family member with a serious health condition. Roughly 2 in 5 workers report they lack access to any paid leave.

“This report paints a picture of the day-to-day needs of caregivers and should ignite action by employers, legislators, and advocates to work together to address the gap in support for employees who require paid leave to support their loved one with a disability. This data brief highlights the importance of paid leave for caregivers in our nation and our hope is that by sharing it we will raise awareness around this issue of national importance,” said Peter Berns, CEO of The Arc.

In tandem with the release of these data briefs, The Arc is releasing a new video which shares the personal story of a family that benefited from unpaid family leave. In the first year of his life, Josh had 10 surgeries and many Pediatric Intensive Care Unit (PICU) hospitalizations for respiratory and shunt infections. His parents, Victor and Debbi, did their best to juggle their professional obligations with raising their two older children and Victor’s duties in the U.S. Marine Corps Reserve, all while navigating Josh’s complex medical needs and disabilities.

The Family and Medical Leave Act (FMLA) provided salvation for Josh and his family. With the pressures at work mounting, and the need to focus on Josh’s day to day care, FMLA was their family’s last recourse to getting the time they needed to support Josh. Debbie was able to take unpaid leave while protecting her job and health insurance benefits. Most importantly, she was able to spend time with Josh during his time of need. While the FMLA was invaluable, Debbie discusses how paid leave would have helped even more. She invites others to join her in advocating for paid leave.

About the FINDS Survey
The FINDS survey was implemented primarily using an on-line survey between January and March of 2017. The survey was also made available in English and Spanish paper versions. Caregivers who were family members or friends of people with I/DD and who provided support were invited to participate in this survey. Direct support professionals or other caregivers whose primary relationship with individuals with I/DD was in a paid role were not included in the sample.

More than 3,000 people (3,398) met the criteria to be included in the survey and consented to partici¬pate. Caregivers surveyed included respondents from all 50 states, DC, Puerto Rico, and Guam. The number of people responding was large and provides important information about the experiences and outcomes of family caregivers of individuals with I/DD in the United States. However, the sample is not reflective of the racial and economic diversity of the United States.