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The Arc Responds to Escalating Situation at US-Mexico Border: “Families Belong Together and the Act of Tearing Them Apart Is Inhumane and Cruel”

/in /by The Arc

Washington, DC – The Arc released the following statement in response to the forced immigrant family separations that are occurring at the U.S.-Mexico border and news of children with intellectual and developmental disabilities being amongst those taken from their parents.

“With each passing minute, we reach a new low as the civil rights and values upon which our nation was founded continue to be betrayed. News of a young girl with Down syndrome being torn from her family is heart wrenching, yet what is garnering headlines is the callous response from those who support the actions of the Trump Administration. As we have said before – family separations are extremely traumatizing and damaging to children. Children with disabilities rely on their loved ones for care, security, and support, particularly for their unique needs. Unfamiliar border agents and other authorities who collect little information about the needs of a child with disabilities risk exacerbating disabling conditions and causing serious harm, in addition to the severe trauma of separation.

“Families belong together and the act of tearing them apart is inhumane and cruel. The Administration’s barbaric choices will undoubtedly traumatize children with and without disabilities. As this situation escalates, we call upon Congress to take action to ensure that these administrative practices are permanently prohibited. The Arc remains aligned with the immigrant community and the many organizations and individuals that have come out in opposition to this abhorrent practice,” said Peter Berns, CEO of The Arc.

The practice of forcibly separating children from their parents can cause irreparable harm in a child’s development, resulting in disability. As noted by the American Academy of Pediatrics regarding these forced family separations, “In fact, highly stressful experiences, like family separation, can cause irreparable harm, disrupting a child’s brain architecture and affecting his or her short- and long-term health. This type of prolonged exposure to serious stress – known as toxic stress – can carry lifelong consequences for children.”

The Arc advocates for and serves people wit­­h intellectual and developmental disabilities (I/DD), including Down syndrome, autism, Fetal Alcohol Spectrum Disorders, cerebral palsy and other diagnoses. The Arc has a network of nearly 650 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.

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The Arc Condemns Family Separations at U.S.-Mexico Border; Calls on Congress to Act

/in , , , /by The Arc

Washington, DC – The Arc released the following statement in response to the forced immigrant family separations that are occurring at the U.S.-Mexico border.

“The Arc stands with the immigrant community and the many organizations and individuals that have come out in opposition to this abhorrent practice,” said Peter Berns, CEO of The Arc. “The notion of uniformed, federal border protection agents forcibly separating parents from their children is outrageous. Family separations are extremely traumatizing and damaging to children, and none are more affected than children with disabilities, who rely on their loved ones for care, security, and support.”

The practice of forcibly separating children from their parents can cause irreparable harm in a child’s development, resulting in disability. As noted by the American Academy of Pediatrics regarding these forced family separations, “In fact, highly stressful experiences, like family separation, can cause irreparable harm, disrupting a child’s brain architecture and affecting his or her short- and long-term health. This type of prolonged exposure to serious stress – known as toxic stress – can carry lifelong consequences for children.”

The Arc’s Berns further noted: “The Arc condemns the cruel and inhumane immigration practices which the Trump Administration has stated are being carried out in accordance with existing immigration policies and laws. However, this explanation rings hollow. Nothing in the law requires the children to be ripped away from their families. This is, quite simply, a choice that has been made by the Administration which is both punitive and contrary to basic human decency.

“How many children have already had the protection, security, and love of their parents stripped away, and how many more face the same fate? As a nation founded by immigrants, we and our elected representatives at the state and federal levels should be outraged by this practice. We call upon President Trump to immediately halt these cruel practices, and we call upon Congress to take action to ensure that such Administrative practices are permanently prohibited.”

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The Arc Recognizes Steven Drizin, One of Brendan Dassey’s Attorneys, for Championing Disability Rights Throughout Career

/in /by The Arc

Washington, D.C. – The Arc of the United States has recognized Steven Drizin, Clinical Professor of Law at Northwestern University Pritzker School of Law’s Center on Wrongful Convictions of Youth, with The Perske Award for championing the rights of people with intellectual and developmental disabilities (I/DD) in the criminal justice system.

Drizin was presented the award for a lifetime of work on justice reform for youth and people with disabilities and his representation of Brendan Dassey, a young man with learning and developmental disabilities, and a central figure in Netflix’s smash docuseries Making a Murderer. The award was presented to Drizin during an event celebrating the creation of The Arc’s Criminal Justice Advisory Panel, the latest addition to the organization’s National Center on Criminal Justice and Disability’s® (NCCJD®) ongoing work to protect the rights of people with intellectual and developmental disabilities involved in the criminal justice system.

Drizin’s law career spans more than 30 years, during which he has become a national expert on false confessions, wrongful convictions, and juvenile justice reform. Drizin and his colleague, Laura Nirider, have been working on the Brendan Dassey case since Dassey was sentenced to life in prison after conviction for first-degree intentional homicide, rape, and mutilation of a corpse at the age of 16. His conviction was overturned on grounds that his confession was involuntary but later reinstated after an en banc decision of the United States Court of Appeals for the Seventh Circuit. This month, the U.S. Supreme Court will consider whether to hear his case.

“Our justice system is flawed in many ways, but nothing is more cruel, inhumane, and tragic than the way people with intellectual and developmental disabilities can be treated in the process. Steve Drizin has made it his mission to take on many cases in which justice hasn’t been served. In Brendan Dassey’s case, the work he is doing will have a ripple effect for other people with intellectual and developmental disabilities caught up in a system that can stack the odds against them. For those of us who knew and worked with Bob Perske, giving Steve this award in Bob’s name is a natural fit, as Bob’s passion lives on in those who continue to work toward justice,” said Peter Berns, CEO, The Arc.

The Perske Award was established by The Arc in 2018 to further the legacy of Bob Perske by recognizing individuals who champion the rights of people with I/DD in the criminal justice system. As a former Executive Director of a chapter of The Arc, Perske’s legacy was in volunteering his time to assist defendants with I/DD who were unjustly accused and their defense attorneys. Perske famously fought for more than 25 years to win the freedom of Richard LaPointe, a man with Dandy Walker Syndrome, who was incarcerated for more than 26 years after falsely confessing to a murder he could not have committed. He also played a critical role in winning the posthumous pardon in 2011 of Joe Arridy, a 23-year-old man with an intellectual disability, executed in 1939 after falsely confessing to a rape and murder he did not commit.

“For more than a decade, Bob was a partner in a shared passion to shed light on the systemic problem of false and coerced confessions. Bob taught me that far too often, it’s people with intellectual and developmental disabilities who are placed in peril during interrogations and in court proceedings simply because actors in our criminal justice system ignore or don’t recognize their disabilities. Bob’s work, often accompanied by beautiful illustrations from his wife Martha, humanized those with disabilities and spotlighted the many ways in which they were abused. My respect and admiration for Bob and his work is boundless and difficult to put into words – receiving this award in his name is the greatest honor I could receive, and I thank The Arc for the work it does to fight for change in our criminal justice system for people with disabilities,” said Drizin.

Upon Perske’s passing in 2016, The Arc created The Robert Perske Fund for Criminal Justice to support carrying on his legacy through the work of The Arc and our National Center on Criminal Justice and Disability (NCCJD).

About The Arc

The Arc advocates for and serves people wit­­h I/DD, including Down syndrome, autism, Fetal Alcohol Spectrum Disorders, and cerebral palsy. The Arc has a network of over 650 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.

About The Arc’s Criminal Justice Advisory Panel

The Advisory Panel is the latest addition to NCCJD’s ongoing work to protect the rights of people with I/DD involved in the criminal justice system. It brings together legal professionals who share The Arc’s mission to protect and promote the civil rights of people with I/DD and will help expand NCCJD’s crucial advocacy. The Advisory Panel is led by Cliff Sloan, partner at Skadden Arps, whose pro bono litigation experience includes securing a victory for a death row inmate with intellectual disability before the U.S. Supreme Court, and Elizabeth Kelley, a solo practitioner specializing in defending individuals with I/DD and mental health disabilities, and The Arc’s CEO, Peter Berns.

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New Data Reveals Our Nation Is Failing to Support People With Intellectual and Developmental Disabilities

/in /by The Arc

Washington, DC – The Arc of the United States released the Family & Individual Needs for Disability Supports (FINDS) Community Report 2017 today. The intent of this one-of-a-kind survey, conducted by The University of Minnesota’s Institute on Community Integration in collaboration with The Arc, is to understand the experiences of families who provide supports to a family member with intellectual or other developmental disabilities (I/DD). This is the second FINDS Report that The Arc has released; the first was conducted in 2010, and released in 2011.

An estimated 7.3 million people with I/DD live in the United States, with the majority living in their family home and receiving support from a family member. The report includes survey responses from over 3,000 caregivers and provides information on the economic implications, logistical challenges, and major gaps that exist in caregiving infrastructure.

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 study revealed that:

  • 80% of individuals with I/DD live with a caregiver who is their family member. Alternatively, access to affordable and accessible housing outside a family home, in a setting with adequate supports, remains a challenge for people with I/DD.
  • Most caregivers (54%) reported that they did not have a plan for the future. Caregivers share a long list of concerns about what will happen to their loved one with disabilities when they are no longer able to support them. Planning ahead can help guide a person with I/DD to lead a good life as independently as possible. A plan is important throughout all stages of life and especially in the future after the parent or caregiver is no longer able to provide support.
  • 50% of individuals with I/DD leave high school without a high school diploma. This is concerning because having a high school diploma is crucial in being considered in a competitive job market.
  • Only a minority of individuals with I/DD are fortunate enough to be employed, and on average they work only 26 hours per two-week period. There is lack in diversity of the type of work being done; sixty percent (60%) of those employed work in retail, janitorial, landscaping, or food service jobs.
  • More than 3 out of 4 survey respondents described that since becoming a caregiver they are more aware of policy issues and more involved in advocacy, including calling their legislators. Ninety-five percent (95%) say that they vote, much higher than is typical for the voting age population as a whole.

The FINDS Survey results highlight the challenges faced by caregivers in our nation. With respondents reporting an average of 57 hours of support provided to their loved one each week, 95% of caregivers reported being stressed and nearly 50% reporting being very or extremely stressed. This affects the ability of caregivers to meet their own personal needs, balance family responsibilities, and fulfill professional obligations. Almost all survey respondents who were employed reported that caregiving had a negative impact on their work, whether it was cutting back their hours, turning down promotions, taking a leave of absence, or giving up work entirely to meet the needs of their loved one.

Caregivers also reported that they would like their employers to do more to help them be successful in balancing their work and family responsibilities, such as provide medical and dental insurance, flexible spending accounts, flexible scheduling, and supportive and understanding supervisors and co-workers.

“In every aspect of life – from education, to employment, to planning for a stable future – we as a society are failing in our support of caregivers of people with disabilities and falling short of our obligation to improve the quality of life of people with disabilities. This report paints a picture of the day-to-day needs of caregivers, and should ignite action to address the gaps that stop us from achieving full inclusion of people with disabilities in the community throughout their lifetime.

“People with disabilities have an undeniable and moral right to be fully included in all aspects of society. As the largest civil rights organization for people with intellectual and developmental disabilities nationwide, we will continue our advocacy to ensure that supports are in place to promote the human and civil rights of people with disabilities.

“Too often, we in the disability community preach to the choir. This report should raise awareness and help engage new activists to our cause from all walks of life. People with disabilities in our nation have faced decades of discrimination and overcome much adversity, but we still have a long way to go before we have a truly inclusive society. The FINDS Report highlights areas we need to focus on and should serve as a rallying cry to advocates nationwide who recognize people with disabilities and their families deserve better,” says Peter V. Berns, CEO of The Arc.

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 partici­pate. Caregivers were surveyed including 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.

The Arc advocates for and serves people wit­­h intellectual and developmental disabilities (I/DD), including Down syndrome, autism, Fetal Alcohol Spectrum Disorders, cerebral palsy and other diagnoses. The Arc has a network of over 650 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.

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The Arc Responds to Texas Court of Criminal Appeals Ruling in Bobby Moore Case

/in , , /by The Arc

Washington, DC – Earlier this week, the Texas Court of Criminal Appeals (CCA) ruled that Bobby Moore did not have intellectual disability and could, therefore, be executed in Texas. The 5-3 CCA decision ignored the request of State prosecutors who—in light of last year’s U.S. Supreme Court ruling in Moore v. Texas—urged the CCA to find that Mr. Moore did meet the criteria for intellectual disability and should therefore have his sentence commuted to life in prison rather than be subject to the death penalty in violation of the Eighth Amendment to the U.S. Constitution prohibiting cruel and unusual punishment. 

“The facts in this case are clear—so much so that prosecutors acknowledged that Mr. Moore met the criteria for intellectual disability following the Supreme Court’s decision—and Mr. Moore should therefore be protected by Supreme Court decisions that ban the execution of persons with intellectual disability as cruel and unusual punishment under the Eighth Amendment. The Arc will continue fighting for the rights of people with intellectual and developmental disabilities, and in the aftermath of this case we will only increase our legal advocacy efforts to ensure that the Supreme Court’s decisions are upheld and justice is appropriately served,” said Peter Berns, CEO of The Arc.

Last year, the U.S. Supreme Court vacated the CCA’s prior decision finding that Mr. Moore did not meet the criteria for intellectual disability and could be executed based on its use of stereotypical and outdated factors—instead of well-established clinical standards—to determine intellectual disability in death penalty cases. Judge Elsa Alcala who authored the CCA’s dissenting opinion this week, issued a strong rebuke to the majority: “this Court has set forth an unconstitutional standard for intellectual disability that continues to permit consideration of wholly subjective, non-clinical factors and stereotypes…This Court’s approach…is eerily reminiscent of the seven Briseno factors that were held to be unconstitutional by the Supreme Court.”

The Arc of the United States and The Arc of Texas filed an amicus brief with the CCA in support of Mr. Moore, joining a broad range of prominent entities and individuals with diverse perspectives and views on the death penalty who filed briefs urging the CCA to grant relief for Mr. Moore. The Arc’s amicus brief noted that the framework established by the Supreme Court requiring courts to consult clinical standards in making intellectual disability determinations in death penalty cases laid a sound foundation for the CCA to determine that Mr. Moore meets the criteria for intellectual disability and cannot be executed.

In her dissent, Judge Alcala cited The Arc’s amicus brief, noting that it “correctly observe[s] that ‘there is a wide gap between the clinical definition and expectations that many laypeople have about intellectual disability…these ‘common misimpressions include beliefs that people with intellectual disability are essentially identical to one another and that all are incapable of any but the most rudimentary tasks.’”

In its 2002 decision in Atkins v. Virginia, the U.S. Supreme Court recognized the special risk of wrongful execution faced by persons with ID and banned the execution of persons with ID as cruel and unusual punishment under the Eighth Amendment. Subsequently, in Hall v. Florida (2014), the Court rejected an arbitrary cutoff for IQ scores in making the intellectual disability determination and emphasized the importance of courts consulting clinical standards in their analysis. Most recently, in Moore v. Texas (2017), the Court rejected Texas’ use of stereotypical and outdated factors—rather than well-established clinical standards—to determine intellectual disability in death penalty cases on the grounds that they “create an unacceptable risk that persons with intellectual disability will be executed.”
The Arc has deep sympathy for the family and friends of the victim in this case, and we supported appropriate punishment of all responsible parties. The Arc did not seek to eliminate punishment of Mr. Moore or others with disabilities, but rather, to ensure that justice is served and the rights of all parties are protected. The Arc is committed to seeking lawful outcomes for people with ID and will continue working to ensure that the U.S. Supreme Court rulings on this issue are abided by in jurisdictions across the country.

The Arc advocates for and serves people with intellectual and developmental disabilities (I/DD), including Down syndrome, autism, Fetal Alcohol Spectrum Disorders, cerebral palsy and other diagnoses. The Arc has a network of nearly 650 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.

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The Arc Responds to Latest Attacks on Affordable Care Act

/in /by The Arc

“Another example of the Trump Administration’s intent to undermine access to health insurance for millions of people with disabilities”

Washington, DC – Yesterday, the U.S. Department of Justice announced that it will refuse to defend the Affordable Care Act (ACA) in a lawsuit brought challenging the constitutionality of the law by the state of Texas. In a legal filing, administration officials said that key parts of the Affordable Care Act should be invalidated. 

 “The actions of the Department of Justice are another example of the Trump Administration’s intent to undermine access to health insurance for millions of people with disabilities by dismantling the Affordable Care Act. It exposes the Administration’s intent to eliminate critical protections for people with pre-existing conditions who benefit from provisions in the law that assure access to affordable health insurance.

“The ongoing attempts to dismantle this law highlight a disturbing disregard, by the Trump Administration, for the needs of people with disabilities who rely on the Affordable Care Act for their health and wellbeing. The Arc remains steadfast in our commitment to advocate and protect this law and the benefits it provides for people with intellectual and developmental disabilities,” said Peter V. Berns, CEO of The Arc. 

The Department of Justice is responding to a lawsuit filed by the state of Texas and several other states in federal district court in February 2018 seeking to invalidate the ACA as unconstitutional in light of the passage of the Tax Cuts and Jobs Act of 2017. While the Administration’s response did not go as far as the claims in the Texas lawsuit, it is a rare response for the Department of Justice to not defend an existing law.

 The Arc submitted a declaration in support of a Motion to Intervene in Texas v. United States filed by California Attorney General Xavier Becerra and joined by 16 other attorneys general. The State of California and 16 other states seek to enter the lawsuit to defend the ACA. In its declaration, The Arc noted that it views the ACA “as critical for people with I/DD and their families in providing benefits, supports, and civil rights protections that help make community living possible.”

The Arc advocates for and serves people with intellectual and developmental disabilities (I/DD), including Down syndrome, autism, Fetal Alcohol Spectrum Disorders, cerebral palsy and other diagnoses. The Arc has a network of nearly 650 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.

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Take this Short Self-determination Survey!

/in /by The Arc

If you are 18 years and older, experience any disabilities (learning, physical, intellectual), and are curious about your self-determination status, take this short survey from the Kansas University Center on Developmental Disabilities! It only takes about 10 minutes to complete, and every participant who completes the survey will receive a $5 gift card for their time.

Take the survey at surveymonkey.com/r/a_report. 

If you are interested or have questions, contact Mayumi Hagiwara at mayuhagi@ku.edu. 

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Chapter Benefits Spotlight: Are your Fundraising Costs Reasonable?

/in /by The Arc

According to The Standards for Excellence Institute, a nonprofit’s fundraising costs should be reasonable over time. On average, over a five-year period, a nonprofit should realize revenues from fundraising that are at least three times the amount spent on conducting them. Organizations whose fundraising ratio is less than 3:1 should demonstrate that they are making steady progress toward achieving this goal, or should be able to justify why a 3:1 ratio is not appropriate for their organization. Contact Karen Wolf-Branigin for a copy of the Institute’s Fundraising Costs Educational Packet.

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We’re Hiring!

/in /by The Arc

Major Gifts Officer, Washington, DC – https://thearc.recruiterbox.com/jobs/fk01fl8/

The Major Gifts Officer is responsible for facilitating gifts of $10,000+ to further The Arc’s important mission of promoting and protecting the human rights of people with intellectual and developmental disabilities. 

The Major Gifts Officer will be a key member of the Individual Philanthropy team working closely with other members of this and the corporate/foundation team, program staff from The Arc’s national office, chapter leaders, The Arc leadership, the Board of Directors, and volunteer leaders as well as major donors. The focus of this position is to develop long-term relationships with major donors built on a firm understanding of donor interests and values and to engage donors more deeply in the work of The Arc. This is a newly created position at The Arc, and the Major Gifts Officer will be expected to lead The Arc in growing its philanthropic opportunities.

Director, The Arc Rhode Island Family Action Network (part-time) – https://thearc.recruiterbox.com/jobs/fk01q8a/ 

The Director of The Arc Rhode Island Family Advocacy Network (FAN), a new part-time position, will build and lead a vibrant grassroots and online movement of Self-Advocates and family members to advocate for, and support implementation of, public policies that promote the full inclusion of people with Intellectual/Developmental Disabilities (I/DD) in their communities.  A member of the national staff of The Arc of the United States, the Director will, at least initially, be the sole in-state employee leading the development of The Arc Rhode Island Family Advocacy Network.  The Director will monitor relevant public policy developments in the executive, legislative and judicial branches of Rhode Island government and will educate and mobilize people with I/DD and their families in support of favorable policy outcomes.  Additional staffing support will be provided by personnel in The Arc’s national headquarters in Washington DC.  Support, expertise and resources will also be provided by leaders in the Rhode Island disability community, including local chapters of The Arc and organization members of the Community Provider Network of Rhode Island.

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The Arc’s Annual Business Meeting – Data Submission Reminder

/in /by The Arc

As part of the Standard Terms and Conditions for Affiliation, chapters are required to submit, no less than once per year, a list of the names and contact information of officers, board members, and key management staff as well as a list of individual Members of the Chapter.  

Pursuant to the Bylaws, a Local Chapter may receive one additional vote for every 100 individuals it has enrolled as of June 30th of the membership year or as of 60 days in advance of the date the voting will take place, whichever is earlier.  

Login to the Membership Portal and update your membership lists before June 30th to secure your membership votes. Questions? Contact Solomon Lissanu at Lissanu@thearc.org.

The Arc’s Annual Business Meeting is scheduled to take place in conjunction with the National Convention Friday, November 9th from at the Gaylord Opryland Resort and Convention Center. If you have any questions regarding the meeting, please contact us at credential@thearc.org.