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#HandsOff: Taking My Advocacy to Tennessee!

/in /by The Arc

This was part of a series called #HandsOff, where we featured calls to action and stories from families across The Arc’s network about how key policy issues impact their day-to-day lives.

The Arc offered scholarships to people with disabilities to attend our National Convention in Nashville, Tennessee. One of the scholarship winners, Ivanova Smith from Washington state, shares her experience below.

Written by: Ivanova Smith, a Person with IDD

Ivanova Smith takes a selfie and smiles with her husband and child to her right. On November 7th, I got to go to Tennessee for the first time for The Arc’s National Convention! It was a blast. When I found I won the scholarship, my husband and I saved up so he and my daughter got to come with me and see the sights.

While they were out having fun in the giant Gaylord hotel, I was gaining tons of knowledge and networking at the Conference! One of the first things I got to do was participate in the National Council of Self-Advocates Symposium. It was great getting to hear from other professionals and leaders with disabilities speak on topics such as transportation, housing, and how to be effective in advocacy around public transportation. I even got to speak during an open mic session!

I enjoyed the workshops around people who help women with disabilities who were victims of sexual assault. I also really enjoyed the general session where they spoke about legislative priorities and I got to meet new friends!

I support The Arc’s national efforts in wanting to improve education and promoting self-determination! Friday we got to celebrate awardees who worked on efforts on better inclusion at the Catalyst Awards. One of them is actually my Facebook friend, James Meadours. His speech inspired me to keep advocating in my home state of Washington. On the last day, we got to enjoy Nashville and listen to live music! It was a wonderful time!

Want to learn more about The Arc’s 2018 Convention? Check out pictures here.

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Thankful for SNAP: #HandsOff

/in /by The Arc

This was part of a series called #HandsOff, where we featured calls to action and stories from families across The Arc’s network about how key policy issues impact their day-to-day lives.

Written by: Anne Clinard Barnhill, Sister to an Autistic Adult

My sister, Rebecca, is sixty years old and one of the most amazing and resilient women I have ever met. When she was born in 1958, autism was barely whispered among doctors. The general public knew nothing about the condition. Becky wasn’t officially diagnosed with autism until she was thirty-seven years old.

She is living life as fully as possible. She shops, goes to the Senior Center for exercise two or three times a week, goes to Weight Watchers, and continues to hone her independent living skills. Several years ago, she participated in a program called Beyond Academics at the University of North Carolina. Innovative and person-centered, this four-year program allowed Becky to attend classes on campus, just like traditional college students — only she studied self-care, cooking, budgeting, and other independent living skills.

After graduation, she made the choice to live independently with a roommate. They split the rent and utilities, but food is purchased on an individual basis. Becky blossomed in the independent living situation. She made friends and learned her way around Wilmington. She cannot yet use public transportation, but that is one of her goals. She has procured a part-time seasonal job, which she loves. She works one afternoon per week from Memorial Day through Labor Day.

One thing that makes this life possible for her is the Supplemental Nutrition Assistance Program (SNAP). Millions of people with disabilities, like Becky, rely on SNAP to access the food they need. Last week, SNAP helped Becky prepare for Thanksgiving as she was able to gather the ingredients she needed to prepare a tasty meal, with help from family and friends. Support from SNAP helps her to purchase to healthier foods like fresh fruits and vegetables. As a breast cancer survivor, she needs to eat a lot of fresh food to help keep a recurrence from happening. She makes wise choices with her SNAP food monies and this helps keep her healthy. If SNAP were taken away, she would be forced to purchase cheap processed foods and would rarely afford fresh produce.

SNAP enables Becky to continue living independently. She is happier, healthier, and SNAP helps make it all possible. I beg Congress to protect the SNAP program.

Becky has the courage of a lion and the heart of tiger. She has braved many situations with dignity and such gumption. She needs a little help from her friends — don’t we all? SNAP is her friend and I pray she continues to receive this, as without SNAP, her whole life — the life she has built brick by brick — will be at risk of tumbling down.

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Anthony Nash Says #HandsOff During August Recess

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This was part of a series called #HandsOff, where we featured calls to action and stories from families across The Arc’s network about how key policy issues impact their day-to-day lives.

Q&A by The Arc’s Advocacy Team with Anthony Nash, a Person with IDD

Anthony Nash stands in front of the Capitol building in Washington DC wearing a long sleeve burgundy shirt and slacks. During August Recess, Members of Congress return to their home states to meet with their constituents. It’s the perfect time for advocates to meet with legislators and tell them #HandsOff important programs – like Medicaid, Supplemental Security Income (SSI), Supplemental Nutrition Assistance Program (SNAP) and much more.

Nobody says #HandsOff during August Recess better than Anthony Nash! Anthony is an active self-advocate in his home state of Washington. He is a member of The Arc’s National Council of Self-Advocates and The Arc of Washington’s Self-Advocates in Leadership (SAIL) coalition. Anthony also serves on the Washington State Developmental Disabilities Council and the board of Disability Rights Washington.

Anthony has fought for issues important to people with disabilities for several years. Here’s what he had to say about advocacy during August Recess:

How did you get involved in advocacy?

I used to work in a sheltered workshop. I got pushed around a lot and even called the R-word there. So one day, I went to the library and asked the librarian for books on disability rights. I read about how people with disabilities have [the same] equal rights as any other person. After that, I joined some advocacy groups and started to stand up for myself.

What does being a self-advocate mean to you?

Self-advocacy means quite a bit to me. A lot of people look down on people with disabilities and think we can’t amount to anything. I do everything I can to prove them wrong. Being a self-advocate lets me show others that we are equal, that we deserve respect, and that we should not be discriminated against in any manner.

Why do you think it is important for people with disabilities to advocate for programs like Medicaid and Supplemental Security Income (SSI) during August Recess?

These programs are our lifeline! Most of our leaders don’t understand that these programs cover significant needs. Since I was four years old, SSI has helped to pay for my food, clothes, transportation, and other living expenses. I use Medicaid to pay for the medicine and doctor visits I need. Self-advocates need to speak up during August Recess when legislators are back home so they know why these programs are important to us.

 

Ready to join Anthony in saying #HandsOff during August Recess? Take a few minutes to call YOUR Members of Congress and tell them why Medicaid and SSI are important to you. Then encourage your family and friends to call, too!

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Medicaid and SSI Mean Independence

/in /by The Arc

This was part of a series called #HandsOff, where we featured calls to action and stories from families across The Arc’s network about how key policy issues impact their day-to-day lives.

Written by: The Arc’s Advocacy Team

Meet Samera! Samera is 27 years old, a poet, and likes to read books, go to concerts, and spend time with her friends and family. She lives in a home in her community, supported by The Arc of Baltimore.

This month America celebrates its independence, but for Samera and many people with disabilities across the country, programs like Medicaid and Supplemental Security Income (SSI) mean independence.

Samera says, “SSI and Medicaid help me to live in the community with independence. SSI helps to pay for my transportation to run daily errands, go to church, and cover the costs of medications and personal items that Medicaid doesn’t cover. Medicaid covers my wheelchair, and because it covers my wheelchair, I’m able to get around and go out, meet new friends, and do all of the things that everyone enjoys doing.”

Check out the video below to learn more about Samera:

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Supreme Court Roundup

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Supreme Court Roundup 

Recently, The U.S. Supreme Court declined to grant review in the case of Brendan Dassey, an individual with learning and developmental disabilities sentenced to life in prison for murder based solely on a confession without any physical evidence linking him to the crime. Read The Arc’s statement here.

And, in case you missed it, you can read The Arc’s take on three decisions from the 2017 Supreme Court term resulting in victories for people with disabilities below:

 

    •  Moore v. Texas: rejecting Texas’s 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.” See The Arc’s recent statement on the Texas Court of Criminal Appeals decision on remand.

 

  •  Fry v. Napoleon Community Schools: unanimously holding that independent disability discrimination claims may proceed against school districts, removing important barriers for students with disabilities seeking redress under the ADA and Section 504.

Upon his nomination to the Court in 2017, The Arc also published a review of Justice Neil Gorsuch’s disability rights record. A similar review of recent Supreme Court nominee Judge Brett Kavanaugh’s disability rights record is forthcoming

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Amicus (Friend of the Court) Briefs

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Amicus (Friend of the Court) Briefs

The Arc is also active in filing and joining amicus briefs to ensure that we can expand our reach to a wide array of cases nationwide. Recent examples include:

    • Ball v. Kasich: in support of a class of individuals with disabilities alleging that Ohio’s service system for people with I/DD violates the ADA’s integration mandate.

 

 

    •  In Re Elijah C.: in support of a mother with intellectual disability whose parental rights were terminated, arguing that such proceedings must comply with the ADA.

 

More information on our amicus work can be found here.

 

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What’s On the Docket?

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What’s On the Docket?

Recent examples of our litigation work include:

    • Ongoing class action lawsuit against the State of Georgia for unlawfully discriminating against thousands of students with disabilities by providing them with a separate and unequal education via a statewide system of segregated and inferior schools in violation of the Americans with Disabilities Act (ADA), the Rehabilitation Act, and the U.S. Constitution.

 

    • Ongoing representation of a client with intellectual disability found incompetent to stand trial following criminal charges, but left to languish in federal prison indefinitely due to the state’s failure to take responsibility for his custody and provide the client services and treatment in the most integrated setting appropriate as required by the ADA.

 

  • A favorable settlement with a property owners’ association (POA) in Delaware following the state’s finding of discrimination. The complaint alleged that the POA violated the Fair Housing Act when it refused to approve The Arc Delaware’s acquisition of property intended to serve individuals with I/DD in the community.
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#HandsOff Medicaid for This Rockstar Musician

/in /by The Arc

This was part of a series called #HandsOff, where we featured calls to action and stories from families across The Arc’s network about how key policy issues impact their day-to-day lives.

Written by: Rachna Heizer, Member of The Arc of Northern Virginia and Mom to an Autistic Son

I am the mother of Jake, a 16 year old rockstar musician with autism. The first thing you might notice about Jake is he doesn’t maintain conversations, but he can rock your world onstage. He loves to play his guitar and sing. He performed 44 times last year, and even auditioned on Broadway. When Jake was seven years old, he first picked up a guitar and three days later was playing full songs – we knew he had an amazing ability.

Jake and Rachna

Medicaid is an important part of the fabric of our family. Through Medicaid, Jake has an attendant who comes after school to provide care to him so I can continue my job. Jake and his attendant work together on independent living skills. They practice how to have conversations in the community, how to go places, how to be independent, so the hope would be that someday, when he’s out of our home, he can live independently in the community, access grocery stores, run his errands, and live his life like anyone else.

Jake performing on stage

Without Medicaid, I would have to quit my job and it would significantly impact our financial ability to maintain our home. It is a significant support that allows us to help foster Jake’s ability in his music, and provide him a path to the productive world when he is older.

It’s important to say #HandsOffMedicaid because without the supports provided by Medicaid, both my son and I — and many people with disabilities and their families — lose the support and services they need that allows us to stay in our society, gainfully employed and living with dignity amongst everyone — and in Jake’s case, to keep rockin’!

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

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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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A Policy and Advocacy Intern’s Reflection on Disability Rights

/in /by The Arc

This was part of a series called #HandsOff, where we featured calls to action and stories from families across The Arc’s network about how key policy issues impact their day-to-day lives.

Written by: Peter Contos, Former Paul Marchand Policy Intern at The Arc of the United States

Peter ContosAs my internship at The Arc’s national office in Washington, DC comes to a close, I want to reflect on the importance of advocacy.

Advocacy has always been an important part of my life. My brother and I were raised to try and understand life from various perspectives, and through this I gained an appreciation for people coming from all walks of life. My mother is a speech language pathologist, and many of her students have disabilities. It was through connecting with her students, along with supporting a family member with autism, where I found my calling in disability advocacy.

I was incredibly lucky to attend public schools that were relatively inclusive. My high school offers a class which pairs students from the general and special education curriculums, in subjects like cooking and art. I was fortunate enough to be in the class my senior year, and the relationships that blossomed throughout were very important to me. That class represents one of the most fulfilling and enjoyable moments of my academic career.

Throughout high school, I was also a part of the Miracle League, a baseball league accessible to kids and young adults with a range of disabilities. The enthusiasm and joy that the game brought to players, volunteers, parents, and fans was undeniable, and it was in those moments where I knew advocacy was the right path for me.

Through volunteering with The Arc of Northwest Wayne County (MI) for the past six years, I have attended the Disability Policy Seminar (DPS). DPS is an incredible opportunity for self-advocates and allies to come together to learn more about important policy issues, and the advocacy we can use to support key programs. This year’s DPS featured a few sessions that really empowered me to continue my advocacy work. In the opening general session, we heard from Rebecca Cokley from the Center for America Progress, and Mike Oxford from ADAPT, both of whom have extensive experience as advocates. The personal stories they told were incredibly powerful, and through them, I learned about the tools they use to communicate their priorities. I also attended the Update on Employment Policy session, where we heard from a representative from the Department of Labor and a key Senate staff member, Michael Gamel-McCormick, about the work they are doing to make sure there are enough incentives and training available for employers to hire people with disabilities.

My favorite part of DPS every year is the Hill visits. This year, I was able to meet with three Congressional offices. Using a combination of statistics and personal stories, the group that I attended with effectively advocated for a variety of programs, including Money Follows the Person, but also to protect vital programs like Medicaid and Social Security, along with continuing to promote equity in educational opportunity.

I’ve continued my advocacy through action post-DPS by attending a rally on Capitol Hill opposing cuts and restructuring of the Supplemental Nutrition Assistance Programs (SNAP, formerly known as food stamps). This rally was well attended by disability advocates and coalition organizations, and it was an opportunity to listen to stories about the importance of SNAP — including several by Members of Congress sharing their personal experiences with the program.

I will be graduating from college in June, and I look forward to continuing my advocacy fight wherever I end up. I plan to use the knowledge and tools that I’ve gained since moving to DC to mobilize the communities I am a part of in my future.