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The Arc Responds to Executive Order on Family Separations

/in /by The Arc

Washington, DC – The Arc released the following statement in response to President Trump’s signing of an Executive Order on family separations.

The Executive Order directs the Department of Homeland Security to detain families together during the pendency of criminal proceedings for illegal entry or other immigration proceedings relating to any of the family members. It also instructed the Attorney General to file a request with the U.S. District Court for the Central Court of California to modify the Settlement Agreement in Flores v. Sessions to permit indefinite detention of children with their families, a practice that currently is not allowed.

“President Trump signed this Executive Order in response to massive outcries from across the globe about the heart-wrenching separation of children from their families at the US-Mexico Border. This Executive Order provides some relief for children, infants, and toddlers at the border as their parents and they undergo various proceedings regarding asylum, immigration, and deportation. However, it also creates new problems requiring the incarceration of children with their parents and families for an undetermined period of time while their cases are being decided.

“We are still in the midst of a civil and human rights crisis. Children who have already been separated from their parents should be reunited as soon as possible. This is an urgent situation for all children involved and in many cases irrevocable damage has already been done. For children with intellectual and developmental disabilities, who rely on their loved ones for care, security, and support, particularly for their unique needs, it is of paramount importance they are reunited with their families.

“Incarceration for parents and families still carries risks of life-long trauma to the children in custody. Effective alternatives to detention – such as the Family Case Management Program – should be used so that families can provide a semblance of normalcy to children while their cases are being handled in the courts and agencies. We implore Congress and the Administration to find an alternative to the incarceration of innocent children. This nightmare for families is far from over and we remain deeply concerned about the impact this will have on children with and without disabilities,” said Peter Berns, CEO of The Arc.

The Family Case Management Program is a possible alternative to incarceration for families. Unfortunately, The Family Case Management Program, a less restrictive program to assist families seeking asylum with very young children and others – was ended by the Administration in June 2017.

The Arc advocates for and serves people wit­­h intellectual and developmental disabilities (IDD), 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 IDD 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 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 (IDD), 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 IDD and actively supporting their full inclusion and participation in the community throughout their lifetimes and without regard to diagnosis.

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

/in , /by The Arc

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 (IDD) open. In 2018, 37 states still have institutions where people with IDD 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.

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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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Myths and Facts About the Convention on the Rights of Persons With Disabilities

/in /by The Arc

For the last two years, The Arc has been working with numerous disability advocacy groups to garner support for the Convention on the Rights of Persons with Disabilities (CRPD), which will promote, protect and ensure the full and equal enjoyment of all human rights and fundamental freedoms by persons with disabilities across the globe. There are many misconceptions about the CRPD, and we would like to clarify some of the most common myths and facts.

Myths and Facts About the CRPD:

Myth #1: Sovereignty will be lost if the treaty is ratified
FACTS: Sovereignty means that the U.S. is protected as an independent governing body and no outside organization (like the UN) or another country can compel the U.S. to do anything. The same RUD (RUD = legal binding condition added to treaties) is attached to the Disability Treaty that is attached to all human rights treaties passed by the U.S. Senate in order to protect U.S. sovereignty ensuring that in no way can the treaty compel the U.S. to do anything and that any changes in law would have to go through our own traditional legislative procedures.

Myth #2: The treaty will require funding and support for abortion
FACTS: Abortion is not mentioned in the treaty but opponents of the treaty lead folks to think it is. There is nothing in this treaty that changes abortion rights in the U.S. It simply states that people with disabilities should have the same access to health care as people without disabilities. It is a statement of non-discrimination NOT a change in U.S. law or policy.

Myth #3: The treaty will take away homeschooling/parental rights
FACTS: The CRPD is a non-discrimination treaty that does NOT change our law but confirms our commitment to disability rights and allows us to impact disability rights globally. That means NO changes to U.S. laws covering parental rights laws or homeschooling.