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

/in , , , /by The Arc

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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MediSked and The Arc Release 2018 Disability Data Digest

/in /by The Arc

Building on the joint 2015 I/DD Data Digest, MediSked and The Arc of the United States are proud to announce the release of the 2018 Disability Data Digest, a compilation of the latest statistics from the disability field, displayed in an easy to read infographic format.

In the age of information, it can be difficult to discern what data is reliable, relevant, timely, and accurate. This resource provides a snapshot of today’s disability community and highlights the areas in which progress has been made toward achieving parity in access to opportunity and basic human rights, while also delineating the many challenges that still face individuals with I/DD in striving for inclusion and equality.

The report includes detailed statistics about the following topic areas:

  • Population and Demographics
  • Socio-Economic Profile
  • Employment
  • Health
  • Housing
  • Independence and Decision-Making
  • Living in the Community
  • Long Term Supports and Services
  • Direct Support Professional Crisis
  • Family Caregiving and Natural Supports
  • Disability and the Justice System

We’ve included a fillable State & Local Advocacy Data Toolkit that is linked to resources and databases which contain state-specific data to support local-level advocacy campaigns. Additionally, we have made each of the individual infographics from the Data Digest available for use, with proper citations. You can utilize these resources to identify vital statistics in your state and community to fuel advocacy efforts.

Click here to download the 2018 Disability Data Digest.

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The Arc Opposes Appointment of Judge Kavanaugh to US Supreme Court

/in , , /by The Arc

Today, The Arc came out in opposition to Judge Brett Kavanaugh’s appointment to the United States Supreme Court. This opposition is based on Judge Kavanaugh’s record on cases relating to disability and civil rights.

Of particular concern are 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.

“We did not take lightly the decision to oppose Judge Kavanaugh’s appointment to the US Supreme Court, but after a thorough analysis of his record, we cannot idly sit by knowing that he 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. Judge Kavanaugh has written several troubling opinions and dissents on cases related to disability rights and The Arc’s constituents, including those pertaining to education, affordable health care, and self-determination.

“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.

“The Arc urges Senators to not confirm Judge Kavanaugh’s nomination to our highest court. The Senate should not confirm a Justice to the Supreme Court whose judicial philosophy threatens the autonomy and well-being of people with intellectual and developmental disabilities,” said Peter V. Berns, Chief Executive Officer of The Arc.

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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 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 Stage Is Set for the Next Threats to the Civil Rights of People With Disabilities With President Trump’s Latest Executive Order

/in , , , , /by The Arc

Washington, DC – The Arc released the following statement in response to the Trump Administration’s “Executive Order on Economic Mobility”:

“Over the last year, people with disabilities, their families, and other advocates have fought again and again against overt attacks on access to health care and supports and services that make life in the community possible.

“After failing to decimate Medicaid, this Administration announced this week that it intends to open up a new front in this effort – one that aims right at those most in need, the poorest in our country, who have the most to lose.

“If you read between the lines of this executive order, it is a blueprint for sweeping changes that penalize people who are unemployed, across multiple programs. From Medicaid, to housing, to food assistance and other programs – this will result in new barriers to eligibility and denial of critical services. The call for increased economic opportunity is not backed up with provision of tools for individuals to succeed.

“We fundamentally disagree with the notion in here that some eligible people are more ‘deserving’ of benefits than others. This is also part of a pattern. From an Administration budget request that would have been devastating to people with disabilities, to a state by state effort to cut people off Medicaid, to a tax law that jeopardizes critical programs, we are still in the fight of our lives and remain ready to advocate for the civil rights of people with intellectual and developmental disabilities,” said Peter Berns, CEO of The Arc.
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 Joins Effort Calling on Department of Education to Keep Guidance on Treating All Students Fairly, Including Students With Disabilities

/in /by The Arc

The Arc has joined more than 140 national, state, and local organizations, led by The Leadership Conference on Civil and Human Rights, in a letter calling on the U.S. Department of Education (ED) to keep in place school discipline guidance. This guidance merely clarifies that the ED expects that schools and districts are treating all children fairly and provides practical tools and guidelines for educators to create safe, supportive, and welcoming environments for all students.

In 2014, the federal guidance was issued with documents that provide important information and support for educators who want to create safer and more welcoming schools and important cautions for schools where problems of unequal treatment are not being addressed. The Arc and the organizations signing this letter maintain that rescinding the guidance would send the opposite message: that the ED does not care that schools are discriminating against children of color by disproportionately removing them from school and that ED does not see itself as having a role in helping educators create and maintain safe schools that afford all students equal educational opportunities.

“We know that suspensions and expulsions have been used for far too long and too often in our schools and are used disproportionately against children of color and children with disabilities. This federal guidance helps to stop this trend, and rescinding it would harm the progress we have to make to live up to our commitment to a free and appropriate public education for minority students with disabilities,” said Peter Berns, CEO, The Arc.

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My evolving relationship with my sister with Angelman syndrome

/in /by The Arc

By Amberley Romo

It’s now been almost five years since I first wrote about future planning. I was 22, and living in Washington, DC — 1,300 miles away from my family in Dallas.

At the time, my sister Caroline was 18. We were both entering new phases of our lives. I was fresh out of college, and she had just reached legal adulthood. (Her birthday milestones honestly were always more striking to me than my own). Caroline was born with a rare neuro-genetic disorder called Angelman syndrome. The prevalence of AS is estimated to be somewhere between 1/12,000 and 1/24,000.

I was in third grade when we finally discovered my sister’s diagnosis. I know, because my mom tells the story of how I went to school, and told my third grade teacher that I was worried about how I would take care of Caroline when something happened to our parents.

Years later, when my parents took our family out to dinner to celebrate my high school graduation, I have a perfect memory of sitting at the table feeling deeply guilty, and near tears. I was soon to move to DC for college. At the table, my parents expressed how important they thought it was that I go. When I later moved away to college, it was deeply unsettling for about a semester. Everything I had to do every day suddenly only revolved around, well, me.

The years passed, and I thrived in DC. I love that city. It’s my home away from home. But I felt those tugs. Sometimes the feeling was quiet, sometimes it was loud; but it was there. Feeling too far away, feeling too selfish. Feeling the desire to be a present fixture in the lives of my family members — to be a more active part of Caroline’s care network.

I’m now almost 28; she is almost 24. I lived in DC for eight years. Two years ago, I moved back to Texas. For one of those years, I lived in Dallas. It’s hard to explain the internal battle between feelings of obligation and not knowing with any certainty what you really want, personally. But you know what I’m talking about. It’s part of the human experience. It has nothing specifically to do with having a sibling with disabilities. It’s a universal experience. This is just a particularly salient part of how I experience this struggle. None of us can know if we’re making the right choices; We just do what we can, and keep moving forward.

What I can say with certainty is that living in closer proximity to my sister deepened our connection considerably. When living further away, I could still say hi to her on the phone. (Or like when she somehow figured out how to FaceTime with me while I was at work and she was in class).

Amberley and Caroline

But living back home, she would spend the night over at my apartment. We’d make dinner, and watch The Great British Baking Show. She loves to watch my pet rabbits run around. I got back in sync with her nonverbal cues, and she got back in sync with my micro-movements. (I swear to you she can tell when you’ve had a thought, and haven’t even said anything yet — her emotional intelligence is through the roof). It’s these subtleties that were difficult — near impossible, even — to maintain, in a long-distance relationship with her.

Amberley and Caroline

There’s no right decision for me, or for other siblings. But I can say for certain that I don’t regret moving back to be closer.

I was reflecting on these past ten years just recently; I was doing some work in a coffee shop, and a family came in. A mom, dad, older sister and younger brother. The younger brother had Down syndrome. They were all hanging his art on the coffee shop wall. As I understand it, the sister had independently reached out to the coffee shop about featuring her brother’s work, and the other artist currently featured on the wall had volunteered to share space. As I chatted with them, and watched as they arranged his art, I had an odd sense of deja vu. Reflecting on being the sister’s age, and pondering college. (She appeared to perhaps be in high school). These thoughts can feel so isolating, but they are such a deeply shared experience. Meeting them by happenstance reminded me of that.

Growing up feels like continuously uncovering that behind the tapestry is a mess of loose ends. From chaos, comes order (or at least hindsight). When I was younger, I worried about Caroline’s future with a general sense of anxiety. Now that I’m older, I worry about increasingly complicated specifics. We have been having active planning conversations for years, and on some level, it grinds away in the back of my brain nonstop. Despite working so proactively, we still don’t feel close to having an answer, or feeling prepared.

I hope that for anyone reading this, these thoughts inspire thoughtfulness, not paralysis. I accept that we can’t ever know anything for certain. It can be overwhelming, but I fervently hope that other siblings and families don’t shy away from these conversations.

Amberley Romo is a software developer in Austin, Texas. She is part of a project to build a free, open-source, web-based communication app.

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The Arc on Bipartisan, Two-Year Budget Deal

/in /by The Arc

The Arc is pleased that Congress was able to negotiate a bipartisan budget deal last week. The deal provides welcome temporary relief for the non-defense discretionary part of the budget that funds a range of programs – such as education, housing, and employment – that help make community living possible for people with intellectual and developmental disabilities. Further, by raising the debt ceiling though March of 2019, it provides a measure of stability that will allow Congress time to continue to develop appropriations legislation to keep the federal government operating. However, despite these and many other beneficial provisions, The Arc remains concerned about future efforts to make program cuts in order to deal with the increased spending authorized in the deal and reduced revenue from the tax law enacted in December.

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The Arc Responds to President Trump’s Health Care Executive Order: “Extremely Dangerous for People With Disabilities”

/in , /by The Arc

Washington, DC – The Arc released the following statement in response to President Trump’s Executive Order Promoting Healthcare Choice and Competition Across the United States.

“President Trump, through the new Executive Order ‘Promoting Healthcare Choice and Competition Across the United States,’ is urging his Administration to find ways to circumvent critical protections of the Affordable Care Act including pre-existing condition protections and requirements for adequate health benefits. If the agencies implement this order, it would undermine the health insurance marketplace and drive up the costs of premiums for people with chronic illnesses and disabilities. This is extremely dangerous for people with disabilities who have relied on the Affordable Care Act to receive quality and affordable health care. The Arc vehemently opposes health care policies, like this, that are detrimental to people with intellectual and developmental disabilities,” said Peter Berns, CEO of The Arc.