The Arc Responds to Latest Attacks on the Affordable Care Act

“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.

Why I Support The Arc of the United States: Autism Acceptance and Inclusion in Action

By: Nicole Jorwic, Chris’ Sister, Director of Rights Policy, The Arc of the United States

Nicole and Chris JorwicMy home state of Illinois still has seven state-run institutions for people with intellectual and developmental disabilities (I/DD) open. In 2018, 37 states still have institutions where people with I/DD live institutional lives away from their families and communities. Some may recall the horrible investigative reports that showed the terrible conditions in institutions, but fail to realize that they still exist — and that state and federal government dollars are still funding them. The Arc of the United States was founded by families like mine trying to eliminate the need for those institutions, and to get their family members with disabilities back home and included in their communities. While we have come a long way, there is still much to do from state capitals to DC.

The families that started The Arc movement were the examples that my parents emulated when they fought to ensure that my brother Chris, who had been diagnosed with autism, was the first student with the diagnosis included in our school district in the early 90’s. The self-advocates — the beating heart of The Arc — are the ones who my brother is following in the footsteps of when he advocates in our state capital for better wages for Direct Support Professionals, or presents at local school districts about how to better support students with autism. The policy staff of The Arc of the United States, who I am honored to call colleagues, have been fighting this fight for decades — some since before my brother was even born.

The legacy of The Arc of the United States was just one part of the reason I was glad to join the team as Director of Rights Policy almost three years ago. But more than that, it was about being a part of a movement that was bigger than any one person, family, or diagnosis. Since January of 2017, I have truly seen the power of that movement. This past year has been a whirlwind. I stood in awe at every rally, event, presentation, hearing and protest, at those who were willing to put their bodies on the line —  screaming, shouting, and sharing their most personal stories about why Medicaid matters in their lives and the lives of their loved ones. With my brother’s permission to share his story, I was sometimes part of that large chorus that ultimately was able to stave off the attacks last fall and SAVE MEDICAID… for now.

The “for now” part is what keeps me up at night. As a family member and advocate, it is also why it is more important than ever that we grow the movement to ensure that the general public understands why inclusion and acceptance matters, and that they join the fight to ensure the progress that we have made in the disability community is not stalled by conversations of “cost savings” and “reductions.” We have to talk about the fact that institutions remain open, and how those dollars would be better spent in the community. We have to educate the general public about what Medicaid is and does. On the policy level, we have to talk to state and federal legislators about the fact that the Federal Medicaid law which we fought so hard to save needs a face lift. Right now, services in institutions, nursing homes, and other more segregated settings are mandatory — while home and community-based services (HCBS) are optional under the law. So, all those billions of dollars of cuts would have cut those community services — while those seven institutions in my home state of Illinois would have stayed open.

These are complex issues, but the basic fact remains that everybody benefits from people with disabilities being part of the fabric of their communities. That doesn’t come by keeping people locked away in institutions, or segregated into different classrooms. It comes through conversation, inclusion, and acceptance that we are all better together.

Since it is also Autism Acceptance month, I also want to talk about my brother Chris and why inclusion and acceptance matters in our lives. You see, it is my brother’s voice that I hear during every tense Capitol Hill meeting, frustrating debate, and late night in the office. This is a little ironic since my brother doesn’t use his voice to speak. Chris types to communicate, and this really only started when he was 21 years old — almost 20 years after he lost his speaking voice. At the time when he started sharing the “20 years of observations and opinions,” my grandpa asked him how he had learned to read and write. And Chris answered with his signature sarcasm, that he “learned to read in his classroom like everyone else”. That is why inclusion matters, that is why acceptance goes light-years beyond awareness. If my parents — like all the parents who started The Arc — hadn’t insisted that Chris be included with his peers, who knows if he would have ever found his ability to communicate. That would have been a loss to our family, our community, and the world.

Chris always says it better than I can. Here is something he wrote: “Every voice matters and deserves to be heard. I would like to say that autism is not a tragedy or a disaster, it is a challenge and I am lucky to have a family that is up to it. I would be happy to talk to political leaders about how they spend our money and why they should talk to leaders like me, who have the experience and history to understand where the money and resources should go and what awareness and acceptance really looks like. And to my brothers and sisters in autism, who have families who see only your diagnosis, I fight for you.”

Chris and I are fighting, and we hope you join our movement today, so that we can continue the fight that started The Arc of the United States over 65 years ago — the fight for acceptance and inclusion in all areas of life for people with disabilities.

The Arc Responds to the Violence in Charlottesville

Washington DC – The Arc released the following statement in response to the violence in Charlottesville, Virginia:

“Our collective hearts break after witnessing the hatred, violence, and innocent death that rocked Charlottesville, Virginia this past weekend. This hatred does not represent our America; it is a shocking betrayal of the values of our nation. We are sickened by the neo-Nazis and white supremacists who brought hate and violence into the streets, and appalled that President Trump chose to place blame not only on them, but on those who were protesting against this resurgence of evil in our society.  The counter protesters who stood up for the inclusion that America was founded upon are not responsible for what happened – it was those resorting to violence while spewing racist, anti-Semitic, homophobic, and islamophobic vitriol who were at fault.

“People with intellectual and developmental disabilities have faced decades of abuse, discrimination, and institutionalization.   We must not forget that the genocide perpetrated by the Nazis in Germany included among its targets those with disabilities, and that eugenic sterilization was practiced here in the United States.  The occurrences of this weekend remind us of dark times in our history, and of the hate and ignorance that fueled these deplorable actions. That hate was alive this weekend.

“Disability does not discriminate and people with intellectual and developmental disabilities are represented in all minority groups: people of color, immigrants, refugees, members of every religious group, and members of the LGBTQ community. We remain on the side of inclusion, on the side of our brothers and sisters in civil rights who were brutally attacked in Charlottesville,” said Peter V. Berns, Chief Executive Officer of The Arc.

Evidence-Based Practices: Connecting the Dots between Research and Practice

Evidence-Based Practices: Connecting the Dots between Research and PracticeWe often hear the terms “best practice” and “evidence-based practice” used in relation to programs or policies – but what does that mean? How do we know if a practice is promising or evidence-based? A recent article, published in Intellectual and Developmental Disabilities, offered perspectives on strategies to gather and evaluate evidence as well as guidelines to establish evidence-based practice. Through a collaboration with AAIDD, The Arc partnered with the lead author, Dr. Robert Schalock, to develop a brief to educate individuals, families, and practitioners on these concepts in hopes of bridging the gap between research and practice.

Learning From Our Peers: Advice on Organizational Transformation From Those Who Have Done It

RRTC BriefAs more community-based providers of supports and services to people with intellectual and developmental disabilities (I/DD) strive to reinvent themselves to offer inclusive opportunities and keep up with Employment First, WIOA, CMS Final Settings Rule, DOJ’s application of Olmstead to employment, and expectations of the ADA generation, organizational leadership may find themselves wondering how to accomplish such a feat. Where’s the finish line? Where’s the starting block?

The Arc believes that people with intellectual and developmental disabilities belong in the community and have fundamental moral, civil and constitutional rights to be fully included and actively participate in all aspects of society. The Arc is pleased to be working toward finding and sharing information to support its chapters on their journeys toward community employment with leading employment researchers as a sub-grantee of the Rehabilitation Research and Training Center (RRTC) on Advancing Employment for Individuals with Intellectual and Developmental Disabilities, a project of ThinkWork! at the Institute for Community Inclusion at University of Massachusetts – Boston on a five-year National Institute on Disability, Independent Living, and Rehabilitation Research (NIDILRR) grant aimed at employment of people with I/DD. As part of this collaboration, staff from The Arc co-conducted interviews with leadership from eight organizations which have transformed their employment service delivery from sheltered work to competitive community employment. A brief sharing advice from those interviews was recently released telling us to Commit. Plan. Engage. Implement.

The next step in this collaboration is an intervention aimed at service providers to aide them in transforming their sheltered workshop models to community-based employment programs. This intervention will provide best practice information and other resources to service providers via a comprehensive toolkit.

We are currently looking for chapters to participate in our intervention pilot this summer. The pilot will be six weeks in duration and will consist of reviewing the toolkit, preliminary planning and implementation of pertinent best practices, and providing feedback to The Arc national staff to ensure that the final version of the toolkit is useful and will best support organizations with implementing the conversion process. If you are interested in learning more or participating in the pilot process, please contact Jonathan Lucus, Director of The Arc@Work at: lucus@thearc.org or at 202.534.3706.

The Arc Responds to Delayed Vote on Senate Health Care Bill That Showed Dangerous Disregard for People with Disabilities

Washington, DC – The Arc released the following statement in response to the Senate delaying the vote on the Better Care Reconciliation Act:

“We are pleased that the Senate is delaying its vote on this dangerous piece of legislation, but we remain vigilant in our opposition to this bill. We commend the Members of Congress who stood up for the rights of their constituents with intellectual and developmental disabilities by opposing the Better Care Reconciliation Act over the last few days. This bill showed a dangerous disregard for the wellbeing of people with disabilities and those with complex medical needs.

“I want to warn advocates that this is a delay, not a defeat of this threat. The bill is still an assault on the rights of people with disabilities. Any Senator supporting this travesty of a bill will be accountable for the negative impact on their constituents and the irrevocable damage it will do to our community based services system. A vote in favor of this bill is a vote in favor of cutting health care coverage from at least 22 million individuals by 2026. Per the budget report, by next year, 15 million more people would be uninsured compared with current law.

“We will continue our efforts to change the hearts and minds of those who supported this bill and help them understand that their constituents rely on Medicaid for comprehensive health care coverage and long term services and supports that enable them to live full lives in the community. Those are the Senators we need to reach; we need them to realize what is at stake.  Our work is far from over, we will continue to work tirelessly in opposition to this bill. We encourage members of our network to share their stories with their Senators during the upcoming recess,” 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@School Releases Report on Special Education Advocacy and The Arc’s Chapter Network

School may be almost out for the summer, but The Arc@School is still in session.  Now in its second year, The Arc@School continues its mission to build the capacity of The Arc’s nationwide network of chapters to provide individual advocacy that helps students with intellectual and developmental disabilities (I/DD) navigate the special education system.  Equal access to education is a fundamental right for all citizens and an important building block for a strong society.  For students with I/DD, a high-quality education can make an enormous difference in the quality of life and degree of independence they enjoy in adulthood. Special education advocacy is instrumental in ensuring that students’ rights are respected and that they receive the services and supports necessary to graduate from high school and pursue post-secondary education and employment.

With these ideals in mind, The Arc@School conducted an investigation of existing special education advocacy practices and published a report entitled Special Education Advocacy and The Arc’s Chapter Network: Findings from The Arc@School.  Students with I/DD, parents, educators, and advocates can find:

  • A brief overview of the Individuals with Disabilities Education Act (IDEA) and the growth of non-attorney lay advocacy in special education;
  • A description of the curriculum, length, and cost of current advocacy training programs, such as Wrightslaw and the Council of Parent Attorneys and Advocates (COPAA);
  • A description of The Arc networks’ current capacity for providing individual special education advocacy;
  • A summary of the current limited academic research on best practices in special education advocacy; and
  • A list of program recommendations that The Arc@School intends to implement in the coming years, such as a suggestion that The Arc@School collaborate with the COPAA, PTI Center, and protection and advocacy networks to ensure that scarce special education advocacy resources reach as many families as possible.

To read the report, please see Special Education Advocacy and The Arc’s Chapter Network.

The Arc Promotes Workforce Development for Egyptians with Disabilities through U.S. Department of State Exchange Program


[WASHINGTON, DC] The Arc will host Michael Mikhael, Executive Director and founding member at the Farah Foundation for Development in Alexandria, Egypt as a fellow in the U.S. Department of State’s Professional Fellows Program (PFP). This two-way exchange embraces the power of individual citizens to find creative solutions to challenges they face in both the United States and around the world. During the month-long fellowship program, mid-level foreign leaders and their U.S. counterparts build sustainable partnerships while enhancing their leadership and professional skills.

While in Washington, D.C., Michael will be exposed to innovative strategies of workforce development for people with disabilities. He will also have the opportunity to gain hands-on exposure to the different advocacy efforts that nonprofit organizations utilize in the struggle for disability rights. This parallels the PFP’s objective of broadening the professional expertise of individuals from around the world working to address common challenges, all while building enduring partnerships among American and foreign participants.

Michael comes to the U.S. with a strong background of supporting persons with disabilities. As early as 1993, he saw the need for economic empowerment programs that catered to individuals with disabilities while engaged in a church-led disability program, Faith and Light. Subsequently, in 2010, he established the Farah Foundation that has developed partnerships with the United Nations’ International Labor Organization (ILO) and the U.N. Development Programme (UNDP) to implement a labor market access and entrepreneurship program for people with disabilities. The foundation also created a database where individuals may seek disability-friendly employment. Additionally, the agency developed an artisan-craft program through which women and people with disabilities are taught marketable craft skills. In addition to these workforce activities, the Farah Foundation supports an orphanage for children with disabilities in Alexandria, Egypt. Upon returning home, Michael believes this new knowledge will help his organization incorporate more sustainable, comprehensive programs for people with disabilities in Egypt.

“The Professional Fellows Program (PFP) is an extraordinary opportunity, and The Arc is thrilled to participate. During Michael’s month-long fellowship, not only will he gain invaluable advocacy and technical skills he can use when he returns to the Farah Foundation, but The Arc will simultaneously also deepen its cultural competency knowledge and understanding. It’s a win for both of us,” commented Jonathan Lucus, Managing Director, The Arc@Work.

The Arc is one of hundreds of U.S. organizations chosen to host Professional Fellows participants from more than 40 countries and territories this spring. At the conclusion of the program, May 30-June 1, more than 270 fellows will gather in Washington, D.C., for the Professional Fellows Congress, a three-day concluding event aimed at preparing fellows to implement follow-on projects upon their return home.

Since 2010, more than 2,000 participants from more than 77 countries have taken part in the PFP in cities across the U.S., and approximately 1,000 American hosts have participated in reciprocal exchanges overseas.

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.

Follow @ProFellows on Twitter and join the conversation using #ProFellows.

For press inquiries please contact:

Kristen McKiernan, Senior Executive Officer, Communications (mckiernan@thearc.org)

U.S. Department of State, Bureau of Educational and Cultural Affairs: eca-press@state.gov

The Arc Video Offers Disability & Family Perspective on Looming Healthcare Reforms

Washington, DC – Today, The Arc is releasing another video illustrating how Congress’ proposed changes to the Affordable Care Act (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 family’s story is shared by thousands of families across the country who are imploring Congress to keep the ACA and leave Medicaid untouched to allow their loved ones to continue to receive the supports they need to live full and independent lives. Here are some of the key ways in which the passage of the American Health Care Act (AHCA) will impact Toby, Lindsay and Calvin, and others in the intellectual and developmental disability community:

  • Proposes a more than $800 billion cut to Medicaid over the next decade, the program which provides funding for essential services for people with intellectual and developmental disabilities to live independent and healthy lives;
  • Allows for insurance companies to discriminate against people with disabilities by using pre-existing conditions as a pretext for higher and often unaffordable health care premiums;
  • Places more pressure on states to support an already under-funded program, which will result in smaller budgets, less coverage and fewer services for people with intellectual and developmental disabilities.

“The Arc opposes the AHCA and the proposed changes to the bill, as both will have widespread and terrible consequences for people with intellectual and developmental disabilities and their families. Congress needs to realize that a vote for the proposed health care reform is a vote against the health and wellbeing of their constituents, which include people with disabilities,” said Marty Ford, Senior Executive Officer, The Arc.

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.

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 Applauds Supreme Court’s Decisive Rejection of Texas’ “Wholly Nonclinical,” “Outlier” Standards in Determining Intellectual Disability

By: Shira Wakschlag, Director of Legal Advocacy & Associate General Counsel
       Ariel Simms, Criminal Justice Attorney Fellow

In decisively rejecting these “Briseno factors,” the Court embraces the standards-based approach in determining intellectual disability for which The Arc has long advocated. When it comes to matters of life and death, there is simply no room for courts to ground their determinations of intellectual disability in outmoded and baseless stereotypes.

On Tuesday, in the third decision in favor of people with disabilities in the Supreme Court this term, the Court issued a 5-3 decision authored by Justice Ruth Bader Ginsburg in the death penalty case Moore v. Texas. The opinion rejects 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.” This is a major victory in protecting the rights of individuals with intellectual disability in the criminal justice system and in fulfilling the promise of two Supreme Court cases setting the standard that execution of people with intellectual disability is unconstitutional (Hall v. Florida (2014) and Atkins v. Virginia (2002)).

In Atkins, the Court held that executing defendants with intellectual disability violated the Eighth Amendment’s ban on cruel and unusual punishment. Subsequently, in Hall, 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. While the Court’s prohibition of the execution of defendants with intellectual disability could not be clearer, some states continue to define intellectual disability in a manner that significantly deviates from clinical standards, resulting in a miscarriage of justice for many defendants.

In this case, Bobby Moore, was convicted of killing a store clerk at the age of 20 in a botched robbery along with two accomplices. He was sentenced to death and challenged that sentence on the grounds of intellectual disability. In 2014, a state habeas court ruled that Moore did meet the criteria for intellectual disability and recommended that the Texas Court of Criminal Appeals (CCA) reduce Moore’s sentence to life in prison or grant him a new trial on the intellectual disability claim. On appeal, however, the CCA ruled that Moore did not meet the criteria for intellectual disability, finding that the lower court had failed to apply the seven-factor test laid out in an earlier Texas opinion, Ex Parte Briseno. The “Briseno factors” rely on stereotypes—rather than clinical definitions—through “the consensus of Texas citizens” in defining intellectual disability and are partly based on the character of Lennie in John Steinbeck’s Of Mice and Men. Using these factors, the CCA found that, among other things, Moore’s ability to live on the streets, mow lawns, and play pool for money precluded a finding of intellectual disability and disregarded several IQ tests Moore had taken with scores in the intellectual disability range.

Decisively rejecting this ruling and referring to the Briseno factors as “wholly nonclinical” and an “invention of the CCA untied to any acknowledged source,” the Supreme Court held unanimously that such factors are impermissible to use in defining intellectual disability in death penalty cases. The Court noted that the Briseno factors were an “outlier” and that Texas did not employ this unscientific approach in determining intellectual disability in any legal issues other than the death penalty: “Texas cannot satisfactorily explain why it applies current medical standards for diagnosing intellectual disability in other contexts, yet clings to superseded standards when an individual’s life is at stake.”

Even Justices who disagreed with other aspects of the ruling (Chief Justice John Roberts, Justice Samuel Alito, and Justice Clarence Thomas) agreed that the Briseno factors “are an unacceptable method of enforcing the guarantee of Atkins.” They disagreed that the CCA had erred in its determination of Moore’s intellectual functioning. The dissent criticized the majority opinion for its reliance on clinical standards as opposed to legal interpretation and precedent, noting: “clinicians, not judges, should determine clinical standards; and judges, not clinicians, should determine the content of the Eighth Amendment. Today’s opinion confuses those roles.”

With the American Association on Intellectual and Developmental Disabilities, The Arc filed an amicus brief in August 2016 in support of Moore and The Arc’s attorneys attended oral arguments at the Court in November 2016. The brief, cited in the Court’s opinion, argued that the state of Texas had distorted the clinical definition of intellectual disability by devising a formula of exclusionary factors that rested heavily on stereotypes and the mistaken notion that an ability to do things like engage in relationships, work, and live in the community precluded a finding of intellectual disability based on simultaneous limitations or challenges. Specifically, the brief noted that the “basic framework of the clinical definition is the constitutionally required standard for determining whether a defendant has intellectual disability.” Jim Ellis, a Distinguished Professor at the University of New Mexico School of Law who represented The Arc in this case said: “The Arc of the United States and its state chapters have played a vital role in protecting the rights of people with intellectual disability” in death penalty cases.

In decisively rejecting these “Briseno factors,” the Court embraces the standards-based approach in determining intellectual disability for which The Arc has long advocated. When it comes to matters of life and death, there is simply no room for courts to ground their determinations of intellectual disability in outmoded and baseless stereotypes.

The Arc has deep sympathy for the family and friends of the victim in this case, and we support appropriate punishment of all responsible parties. The Arc does 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 intellectual disability and will continue working to ensure that the U.S. Supreme Court rulings on this issue are abided by in jurisdictions across the country.