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

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.”

The Stage is Set for the Next Threats to the Civil Rights of People with Disabilities with President Trump’s Latest Executive Order

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.

The Arc Responds to Graham-Cassidy-Heller-Johnson Health Care Proposal

Architects of this bill are still ignoring the pleas of their constituents with disabilities

Today, U.S. Senators Lindsey Graham (R-SC), Bill Cassidy (R-LA), Dean Heller (R-NV), Ron Johnson (R-WI) and former US Senator Rick Santorum (R-PA) unveiled the latest attempt to repeal the Affordable Care Act. The Arc released the following statement in response:

“While this piece of legislation has a new title and makes new promises, it is more of the same threats to Medicaid and those who rely on it for a life in the community. The Graham-Cassidy-Heller-Johnson proposal cuts and caps the Medicaid program. The loss of federal funding is a serious threat to people with disabilities and their families who rely on Medicaid for community based supports.

“Many of the provisions in this legislation are the same or worse than what we encountered earlier this year, which shows that the architects of this bill are still ignoring the pleas of their constituents with disabilities. The talking points sugar coat it, but the reality is simple – under this proposal less money would be available despite the fact the needs of people who rely on Medicaid have not decreased.  The Arc remains staunchly opposed to legislation that includes per capita caps or block granting of Medicaid. We need Members of Congress to find a solution that actually takes into consideration the needs of people with intellectual and developmental disabilities,” said Peter Berns, CEO of the The Arc.

Emergency Weekend Medicaid Matters to Me Letter Writing Campaign – Deadline Extended!

The Senate is set to vote soon on the latest version of the Better Care Reconciliation Act. The latest revisions to the bill do NOT change the devastating cuts to the Medicaid program that over 10 million people with disabilities rely on to live and work in their communities. The time is now to take action and tell your Senators why Medicaid Matters to You and Your Family

Take a few moments to write a brief message about how Medicaid impacts your life. Please send those messages in the body of an email to Nicole Jorwic at The Arc of the United States: jorwic@thearc.org. PLEASE INCLUDE YOUR STATE IN THE SUBJECT LINE OF THE EMAIL. We will hand deliver all the printed messages to the Senators from your states this week. So please act fast, e-mails must be received by midnight on Wednesday, July 19 to be printed.

We want to show strong support for Medicaid from all over the nation, but we are particularly looking for letters from the following states:

  • Nevada
  • West Virginia
  • Alaska
  • Louisiana
  • Ohio
  • Arizona
  • North Dakota
  • Kansas

What Do Moms Need?

Last week, The Arc was excited to join nearly 50 national organizations that co-sponsored the #MomsDontNeed / #LasMamásNoNecesitan Tweet storm. On Twitter, we called attention to recent actions and policies that threaten mothers and families, and highlighted the kind of supports they and all people truly need to protect and advance their economic security, health, and more.

Moms with disabilities, and moms of children with disabilities, do so much. And across the nation, moms are working harder than ever. With Congress considering legislation to devastate our health care system, and with new reports of major cuts in the works to Medicaid, Social Security disability benefits, and other effective federal programs, so much is at stake – for moms, and for all of us. As The Arc celebrates Mother’s Day, here are three things that we know are vital to supporting mothers and their many contributions.

1. Access to Health Care and Long-Term Supports and Services. Health insurance under the Affordable Care Act can make all the difference in the world. Just listen to Lindsay, mother of toddler Calvin, if you’re not sure why. In addition, for many people with intellectual and developmental disabilities, Medicaid provides a range of essential medical and long-term supports and services that make community living a reality and for many, can be the difference between life and death. Unfortunately, the American Health Care Act (AHCA) – passed recently by the House of Representatives and now before the Senate – shows callous and dangerous disregard for the wellbeing of people with disabilities and their families. Among the bill’s many harmful provisions, the AHCA would decimate Medicaid, erase health insurance cost protections for people with pre-existing conditions, and cause people to lose essential health benefits under state waivers. The AHCA is one bill that #MomsDontNeed.

2. Economic Security. For most moms and families of children and adults with intellectual and developmental disabilities, every penny counts. For example, raising a child with disabilities can be tremendously expensive due to major out of pocket medical and related costs, like adaptive equipment and therapies. For many families, earnings from work aren’t enough to maintain a basic standard of living and cover these often-extraordinary disability-related costs. It’s only possible because of income from Social Security’s disability programs, including Supplemental Security Income (SSI). Unfortunately, recent news reports suggest that President Trump’s 2018 budget will propose major cuts to Social Security disability benefits, as well as Medicaid and a host of other programs – totaling $800 billion in cuts. That’s another devastating idea that #MomsDontNeed.

3. Paid Family and Medical Leave. Moms with disabilities, and moms of children with disabilities, know better than most that time is a precious resource. At The Arc, we hear often from moms and dads struggling to get enough paid time off work: to be with a new baby in the Neonatal Intensive Care Unit; to care for a new baby with disabilities when they first come home; to take their son or daughter to medical appointments, therapies, and after school programs; to attend IEP meetings and other school appointments – and so much more. And while we all love Wonder Woman, let’s face it, moms get sick, too. Moms shouldn’t have to choose between a pay check and a child’s health, or a pay check and their own health. Not moms, not anyone. That’s why The Arc is joining the call for a robust federal paid family and medical leave program. We hope you’ll #JoinOurFight!

The Arc Responds to House Passage of The American Health Care Act: “Shows callous and dangerous disregard for the wellbeing of people with disabilities”

Washington, DC – The Arc released the following statement following the House of Representatives passage of the American Health Care Act (AHCA), with the addition of amendments that take the bill from bad to worse for people with intellectual and developmental disabilities (I/DD) and their families:

“Members of the House of Representatives who supported the American Health Care Act voted against their constituents with intellectual and developmental disabilities. We won’t soon forget those who so willingly ignored the pleas of their constituents who rely on the Affordable Care Act and Medicaid for comprehensive health care coverage and long term services and supports that enable them to live full lives in the community. We must call this what it is – an attack on the rights and lives of people with disabilities.

“The federal government will be walking away from a more than 50 year partnership with states when it comes to Medicaid. Deep cuts and radical restructuring will decimate the Medicaid program. With an over $800 billion cut to Medicaid, states will face difficult choices about what people to cut from the program or what services to roll back. Optional services like home and community based services are likely to be cut. Lives will be lost when people are unable to access the health care and community supports they need.

“The plan that passed the House today is insufficient to keep people with disabilities insured or to support anyone with complex medical needs. If signed into law as currently written, this bill will result in people with disabilities and their family members losing health coverage in the private insurance market and in Medicaid. Coverage also becomes unaffordable as people with pre-existing conditions lose protections against higher premiums.   Those lucky enough to retain their coverage will find that some of the services they need – Essential Health Benefits – are no longer available.  And Medicaid funded long term supports and services, which help people live independently and be included in their communities, will be even scarcer as waiting lists for services will grow all across the country.  Some may end up living in nursing homes and institutions because community services are no longer available.

“The American Health Care Act shows callous and dangerous disregard for the wellbeing of people with disabilities and their families and erases decades of progress.  Now we turn to the Senate, our last line of defense. We intend to work with Senators on both sides of the aisle to oppose this harmful legislation. We continue to encourage disability advocates across the country to reach out to their Senators to voice their concern about this bill,” said Peter Berns, CEO, The Arc.

This week, The Arc released another video illustrating how Congress’ proposed changes to the ACA and Medicaid would negatively impact Americans with disabilities and their families. The video features an interview with Toby, Lindsay, and Calvin from Fairfax, VA. Calvin has Bilateral Fronto-Parietal Polymicrogyria and Cerebral Palsy and relies on multiple insurance plans to cover his medical and therapeutic treatments.

This video is the second in a series of videos The Arc will be releasing in the coming weeks, sharing the personal stories of people with disabilities and their families, and the impact of the ACA and Medicaid on their lives. The first video featured nine people who rely on the ACA and/or Medicaid, and each one has a personal message for Members of Congress and the Trump Administration.

RE: Clemency for Ledell Lee

Dear Governor Hutchinson:

I write on behalf of The Arc of the United States (The Arc) to urge you to commute the death sentence of Ledell Lee pending a full clinical evaluation to determine whether Mr. Lee has an intellectual disability (ID). The Arc is a national non-profit organization which, for over 65 years, has sought to promote and protect the civil and human rights of individuals with intellectual and developmental disabilities through the work of its national office and over 650 state and local chapters throughout the country. Through its National Center on Criminal Justice and Disability®, The Arc seeks justice for those with ID who find themselves entangled in the criminal justice system, often without necessary accommodations or understanding of their disability.

The Arc has deep sympathy for the family and friends of the victims in this case, and we support appropriate punishment of all responsible parties. However, Mr. Lee’s history is replete with evidence indicating a potential ID diagnosis, which would bring him under the protection of the United States Supreme Court’s decisions in Atkins v. Virginia, 536 U.S. 304 (2002), Hall v. Florida, 134 S. Ct. 1986 (2014), and the more recent decision in Moore v. Texas, No. 15–797, slip op. (U.S. Mar. 28, 2017).

In its 2002 Atkins decision, the U.S. Supreme Court recognized the special risk of wrongful execution faced by persons with ID (formerly termed “mental retardation”) and banned the execution of persons with ID as cruel and unusual punishment under the Eighth Amendment, noting that individuals with ID “do not act with the level of moral culpability that characterizes the most serious adult criminal conduct” and that “[n]o legitimate penological purpose is served by executing a person with intellectual disability…to impose the harshest of punishments on an intellectually disabled person violates his or her inherent dignity as a human being.” In its 2014 Hall decision, the U.S. Supreme Court further clarified its decision that people with ID not be executed in violation of the Constitution, requiring that adaptive behavior evidence, beyond IQ test scores alone, be taken into account when determining whether an individual has ID. The more recent Moore case further confirms adaptive behavior criteria as necessary in determining whether someone meets diagnostic criteria for ID, and that such criteria must comport with modern clinical and scientific understanding of ID.

The evidence presented by the neuropsychological expert in this case, Dr. Dale Watson, supports the conclusion that if Mr. Lee undergoes a full evaluation, he will likely meet the three prongs of an ID diagnosis: (1) significantly impaired intellectual functioning; (2) adaptive behavior deficits in conceptual, social, and practical adaptive skills; and (3) origination of the disability before the age of 18. In order to complete his analysis, Mr. Lee’s adaptive deficits and history during the developmental period (before age 18) need to be fully assessed. Individuals with ID—like everyone else—differ substantially from one another. For each person with ID there will be things he or she cannot do but also many things he or she can do. Because the mixture of skill strengths and skill deficits varies widely among persons with ID, there is no clinically accepted list of common, ordinary strengths or abilities that would preclude a diagnosis of ID. Thus, the focus in assessing an individual’s adaptive behavior must be on deficits. As recently confirmed in Moore, adaptive strengths are irrelevant to this analysis and IQ alone cannot paint a full picture of whether a person has an ID. Thus, we urge that Mr. Lee receive a full evaluation for ID to determine whether he may be eligible for the Atkins constitutional protection from the death penalty.

Given the high likelihood of ID in this case, it is troubling that the lawyers who represented Mr. Lee throughout his trial failed to properly investigate evidence of Mr. Lee’s potential ID. As a result, no evidence of Mr. Lee’s potential disability was presented to the jury during the sentencing phase of his trial. If a full evaluation confirms Mr. Lee’s suspected diagnosis of ID, then Mr. Lee’s death sentence violates current prohibitions against cruel and unusual punishment as set forth in the U.S. Supreme Court decisions in Atkins, Hall, and Moore.

The Arc does not seek to eliminate punishment of Mr. Lee 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. I humbly ask that you consider commutation to address the possibility of an unconstitutional miscarriage of justice in the case of Ledell Lee.

Most respectfully,

Peter V. Berns
Chief Executive Officer
The Arc of the United States

Voting Independently With A Disability Is Possible

When I became old enough to vote, I didn’t think I could because I can’t write due to having cerebral palsy (CP). A few years later, I was in an independent living program which taught me many skills that I needed to know in order to live on my own, and one thing I learned is that I had the right to ask a polling person to assist me in filling out my voting ballot. This helped reduce my fears around voting. So, when the next election came around, my boyfriend– Juan, who also lives with CP and needed help writing– and I decided to go vote for the first time. It took us two and a half hours because there was a long line, then when we finally made it to the front of the line, we had to wait for one polling assistants to become free to help us (one at a time). We both were dissatisfied with the process because we didn’t view it as very fair. We felt uncomfortable because we weren’t taken to a private area, so anyone could have overheard our vote. Plus, we were also discouraged when we realized that even if we were taken to a private area, our vote would never be truly private because the person who assisted us would know how we voted. This discouraged us from voting again for several years.

Then, in 2010, I got a job working with the Coalition of Texans with Disabilities. One of the first projects they had me working on was about voting and trying to get more people with disabilities to get out and exercise their right to vote. While working on the project, I learned about a pair of jelly switches– big round buttons that could be plugged into accessible voting machines to help with the process of voting. These buttons are for people with disabilities who don’t possess good dexterity and fine motor control. These buttons can be placed anywhere needed for them to be accessible. One button allows the voter to move throughout the ballot, while the other was to make selections. I discovered these were perfect for me because I could operate them with my feet. I was excited to be able to cast my ballot by myself and in private!

The next time elections rolled around, there were accessible machines at almost every polling place and I was anxious to put what I had learned into practice. So I went into my polling place and told them I wanted to use the jelly buttons to cast my own ballot. They got the polling person who had been trained on the adaptive equipment. She hooked up the buttons, then we figured out that the best place for me to put them was on the foot pedals of my wheelchair. Then, I spent the next 20-30 minutes casting my own private ballot. When I finished, they were as excited for me as I was for myself. As I walked out of the building with my ‘I Voted’ sticker on me, I had tears in my eyes– as I do right now– because it meant that much to me.


Susie Angel has an Associate’s Degree in Communications from Austin Community College and a Bachelor’s in Magazine Journalism from the University of Texas at Austin. She has worked as a secretary/office manager for several years and has experience as a job developer/ job coach for people with disabilities. Susie joined Coalition of Texans with Disabilities (CTD) as a VISTA in 2010 and joined the staff as a part-time employee in 2012. She edits and writes for the monthly e-newsletter, co-coordinates Pen 2 Paper, and heads up CTD’s research department. She sits on the advisory boards for SafePlace and the Austin Interfaith Inclusion Network. Susie was raised in Boston and California before moving to Austin in 1987. Her hobbies include creative writing, dramatic performance, mixed-ability dancing, modelling, and watching baseball with her other half.

Celebrating Friendship

Sisters Holding Hands[1]By Jennifer Sladen, Program Manager, National Initiatives

In the hope that fostering friendships between people with different backgrounds, countries, and cultures would lead to peace by inspiring communities to connect with and better understand each other, the United Nations General Assembly proclaimed July 30th International Day of Friendship. On this sixth International Day of Friendship, let’s take a moment to reflect on how we can support people with intellectual and developmental disabilities (I/DD) to be a part of this drive to make connections and create friendships.

A few years ago, I attended a conference for direct support professionals. Al Condeluci, the CEO of Community Living and Support Services (CLASS) in Pennsylvania and a partner in the Interdependence Network, addressed the room, asking a simple question – “Who is the best friend of the person with I/DD you serve?”

The room was silent. Not because no one knew the answer, but because no one wanted to say the answer.

Dr. Condeluci pressed the group, “Who is their best friend?”

A voice near him spoke quietly, “Me.” Around the room, professionals started nodding their heads in agreement.

Silently, Dr. Condeluci walked back to the center of the room. After a pause, he said, “Being friends with the people we serve is great, but we are not always going to be there. Success is not going to an amusement park and hanging out with people with I/DD but hanging out a seat or two behind the person with I/DD and their friend on the roller coaster.”

All around the room, lightbulbs went off in people’s heads. Hands raised, asking for help and advice on how to make this happen for the people they serve.

Dr. Condeluci’s answer was not complex:

  • Give people the opportunity to form friendships with new people of all abilities, not just the professionals they interact with.
  • Encourage the people you serve to engage actively in the world and with the people around them.
  • Educate people who are uncomfortable around or ignorant about people with disabilities to encourage them to make these friendships.

Thanks to shows like A&E’s reality show, “Born This Way”, as well as the increasing number of characters with disabilities in movies and TV shows, the dialogue around our country about how people with I/DD make friends, date, and live independently is growing. But, all of us can do more to make sure that people with I/DD in our lives have opportunities to connect with people of all abilities.

People with I/DD, here are a few ideas on connecting socially:

  • Pursue activities and opportunities based on your own interests. After you have decided what you would enjoy, think about what support you will need to participate and who you would like to provide that support. If it turns out that there aren’t other people with I/DD who participate, go ahead. You can be a trailblazer!
  • Seek out friendships with whomever you want to be friends with.
  • Be yourself and open to new activities and new friendships.
  • If you have trouble making new friends or if you have disagreements with friends, talk to the people you trust about how to address these issues.
  • Advocate to include other people with I/DD in events and activities you attend.

 

Families and Professionals, you can:

  • Encourage people you know to include people with I/DD in events and activities and promote understanding by talking about the value that the people with I/DD bring to your life.
  • Make space and time for people with I/DD to make friends, pursue activities, and participate in the community.
  • Encourage new experiences, especially if the person is scared or unsure.

We encourage you to explore The Arc’s Center for Future Planning for ideas about how to build relationships and pursue new experiences. And, if you are a fan of “Born This Way”, register today to attend The Arc’s 2016 National Convention and International Forum to meet the cast!

A National Call to Action on Toxic Environmental Chemicals

Last year a group of nearly 50 leading scientists, health professionals and providers, and children’s health and disabilities advocates (including The Arc) came together out of concern over the growing link between toxic environmental chemicals and neurodevelopmental disabilities. Last week, we issued a consensus statement under the banner of Project TENDR: Targeting Environmental Neuro-Developmental Risks.

Our statement is a national call to action that seeks to significantly reduce exposures to chemicals and pollutants that are contributing to autism spectrum disorder, attention deficits, hyperactivity, intellectual disability, and other conditions.  Prime examples of these are chemicals in everyday use to make plastic more flexible, upholstery less flammable, and crops more plentiful.

The prevalence of neurodevelopmental disabilities has been increasing significantly according to the CDC, while the programs and services that are needed to support them remain under attack.  It’s time to change how we do business in prevention.  We need to shift the burden of proof to show that chemicals are safe before we allow them to affect a baby’s developing brain.

Read the New York Times and CNN coverage of the consensus statement.  For more information about Project TENDR, see http://projecttendr.com/

While we must work together to prevent developmental disabilities resulting from toxic exposures, we must work simultaneously to protect the services and supports for those who live with these disabilities now.  Want to get involved in advocating for services and supports for people with disabilities? Sign up for The Arc’s Disability Advocacy Network.