The Arc Responds to Three Month Extension of Money Follows the Person Passing Congress

Last week, the Medicaid Extenders Act of 2019 was signed by President Trump. A three-month funding extension for Money Follows the Person (MFP) was included in this bill. This program moves people with disabilities from institutions into the community by paying for programs not normally covered by Medicaid such as employment and housing services.

“Passage of this bill means individuals with disabilities who have been waiting to transition while funding for the MFP program was in danger, have the opportunity to move out of institutional settings and into the community. If the funding bill did not pass, MFP funds would have run out across the country. This is not only an investment in community-based services, but in the civil rights of people with intellectual and developmental disabilities.

“It is a powerful testament to the value of this program that this legislation was passed so early this Congress, especially after the unsuccessful attempts to cut Medicaid by billions of dollars last Congress. This victory belongs to advocates nationwide who have been actively working to support people with disabilities to live in their communities.  We look forward to working with leaders in Congress who supported this legislation on a strategy for longer or permanent extension of MFP.” said Peter Berns, CEO of The Arc.

The Arc Expands “Talk About Sexual Violence” Project to Focus on Men With Disabilities

The Arc of the United States is pleased to announce the National Center on Criminal Justice and Disability® (NCCJD®) received a grant from the WITH Foundation to expand its successful initiative Talk About Sexual Violence (TASV). TASV was born out of a partnership between The Arc’s NCCJD and the Board Resource Center (BRC) and serves as a platform for educating healthcare professionals on how to talk to their patients with intellectual and developmental disabilities (I/DD) about sexual violence. The WITH Foundation’s grant will expand the program’s current focus on women survivors to include resources about male survivors and the unique barriers they face in disclosing or reporting sexual violence.

Efforts to address sexual violence—even movements like #MeToo—have typically focused on women. However, men also experience sexual violence and have comparatively few resources to support them. Research shows that 14% of men with disabilities will experience violent victimization compared to 4% of men without disabilities. Men are less likely than women to disclose an assault, and men with I/DD may be even less likely due to additional challenges they face if they do speak out about it or report it. Health care providers are generally not asking male patients about sexual assault and may not know how to respond if a patient does disclose. 

NCCJD’s Director, Leigh Ann Davis, who has worked in the field of sexual violence prevention of people with disabilities for over 20 years and is a survivor herself, states: “This is a topic of urgent national importance, and we’ve only begun to scratch the surface when it comes to addressing sexual trauma experienced by men with I/DD. With support from The WITH Foundation, we can expand our current project, reach new audiences, build new partnerships with male-focused sexual assault organizations and plant seeds for prevention, detection, and healing in the future.”

Health care professionals are in a frontline position to educate patients about and potentially prevent sexual violence. The primary challenge facing health care professionals is lack of training and experience in speaking directly to people with disabilities about this critical issue which can have dire consequences in the person’s life when left untreated, both emotionally and physically. TASV will work to reduce this gap in knowledge by creating brief video clips with supporting training materials healthcare professionals can use to educate and prepare themselves for these sensitive discussions.

While this project will focus its efforts in California, the initiative will have national reach and impact. This grant is part of a larger grant program by The WITH Foundation that is dedicated to addressing the issue of sexual violence against people with disabilities. The WITH Foundation has provided close to $258,000 to six organizations to fund a variety of programs that promote comprehensive and accessible healthcare for adults with I/DD.

“It is a privilege to support these efforts as they work to enhance healthcare delivery models, increase the understanding of supported decision-making, and/or address critical issues for adults with intellectual and developmental disabilities” said Ryan Easterly, Executive Director of the WITH Foundation.

 

December 2018 #HandsOff: Taking my advocacy to Tennessee!

#HandsOff is a series on The Arc Blog where individuals and families across The Arc’s network share their stories about how some of today’s key policy issues impact their day to day lives.

This year The Arc was excited to be able to offer a limited number of scholarships to individuals with disabilities to attend the National Convention in Nashville, Tennessee One of the scholarship winners, Ivanova Smith from Washington, shares her experience below.

By: Ivanova Smith

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.

 

July 2018 #HandsOff Blog: Medicaid & SSI Equal Independence

#HandsOff is a series on The Arc Blog. Each month, we feature a story from individuals and families across The Arc’s network about how some of today’s key policy issues impact their day to day lives.

 

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:

Supreme Court Roundup

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

Amicus (Friend of the Court) Briefs

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.

 

What’s On the Docket?

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.

#HandsOff Medicaid for this Rockstar Musician

#HandsOff is a series on The Arc Blog. Each month, we feature a story from individuals and families across The Arc’s network about how some of today’s key policy issues impact their day to day lives.

By: Rachna Heizer, Member of The Arc of Northern Virginia

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’!

 

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

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.

May 2018 #HandsOff Blog – A Policy & Advocacy Internship with The Arc

#HandsOff is a series on The Arc Blog. Each month, we feature a story from individuals and families across The Arc’s network about how some of today’s key policy issues impact their day to day lives.

By: Peter Contos

Peter ContosAs my Paul Marchand Policy 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.