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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    •  Moore v. Texas: rejecting Texas’s use of stereotypical and outdated factors—rather than well-established clinical standards—to determine intellectual disability in death penalty cases on the grounds that they “create an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

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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.

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.

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#HandsOffSNAP Video & Advocacy

/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 U.S. House of Representatives could vote as early as this week on a bill to cut off or reduce basic food assistance under the Supplemental Nutrition Assistance Program (SNAP) for roughly 2 million people across the nation. This includes many people with disabilities and their families. 

SNAP is vitally important for people with disabilities and their families. We know that all too often food insecurity and disability go together. Families that include people with disabilities are two to three times more likely to experience food insecurity than families that have no members with disabilities. 

Take action: Watch The Arc’s new video about SNAP and call Congress now to say #HandsOffSNAP. 

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#HandsOff Supplemental Security Income: It’s the Difference Between Life in the Community or Life in Isolation

/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: Steve Grammer, a Man with Cerebral Palsy

Steve Grammer faces the camera and is wearing a red shirt and jeans. My name is Steve. I live in Roanoke, Virginia, and I have cerebral palsy. I like to do the kinds of activities many people do—go out to the mall, restaurants, concerts, bars, and travel to places like the beach. I am an advocate with people with disabilities. I go to a lot of events to talk with members of the legislature and other government officials. I recently attended an event with U.S. Senator Kaine and a town hall meeting with Delegate Rasoul. I also serve on several state boards.

I have a lot of expenses due to my condition. In order to live in the community in my own apartment, I have to have caregivers assist me in daily activities that most people don’t think twice about. They help me with everything from health care, making phone calls, administering medications, meal prep, eating, and housekeeping, and they accompany me to events in the community.

I receive Supplemental Nutrition Assistance Program (SNAP) benefits to help me pay for food, but sometimes it’s not enough to cover my groceries. I also have Supplemental Security Income (SSI) that I use to pay for rent, transportation, personal hygiene, and other bills.

SSI helps me to have a decent life in the community, like everyone deserves. As someone who lived in a nursing home for nine years, I know how important that is. Living in the community, I am more independent. I can set up my own schedule. I know I will get good care, as I get to choose who I want to take care of me through consumer directed services. I’m able to choose what and when I want to eat versus not knowing when, what, or if I will get fed (not to mention being rushed to eat in the nursing home).

I’m able to use the restroom when I want without waiting an hour or more for someone to answer my call light. I can sleep at night and go to bed when I want, versus having to use ear plugs every night because of other residents or loud staff. If I have transportation I can be out in the community as late as I want without having to sign in and out of the nursing home and having to be back before midnight.

SSI gives me this independence. That is my only income. If the government decreases it or takes it away from people with disabilities, we cannot survive. Without SSI, many people with disabilities, like me, would end up back in institutions.

I strongly encourage the government to think about this very carefully and not make any type of cuts to SSI. Please do not take our independence away from us.

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50th Anniversary of Fair Housing Act

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by T.J. Sutcliffe, Senior Director, Income & Housing Policy

This April we mark the 50th anniversary of the Fair Housing Act – a powerful law that fights housing discrimination and opens doors for people with disabilities across the U.S.

What is The Fair Housing Act?

The Fair Housing Act prohibits discrimination in the sale, rental, and financing of housing based on race, color, national origin, religion, sex (gender), familial status, and disability. The Fair Housing Act bars discrimination in any aspect of selling or renting housing or to deny a dwelling to a buyer or renter because of the disability of that person, a person associated with the buyer or renter, or a person who plans to live in the residence. For example:

  • The Fair Housing Act requires landlords to allow tenants with disabilities to make reasonable access-related modifications to their private living space and common spaces (landlords are not required to pay for the changes).
  • The Fair Housing Act requires landlords to make reasonable exceptions in their policies and operations to afford people with disabilities the opportunity to use and enjoy their housing. For example, a landlord with a “no pets” policy may be required to grant an exception for a tenant who uses a service animal.
  • The Fair Housing Act prohibits lenders from imposing different application or qualification criteria on people with disabilities, or inquiring about the nature or severity of a disability (except in limited circumstances).
  • The Fair Housing Act requires that new multifamily housing with 4 or more units be designed and built to allow access for people with disabilities.

Our work to advance fair housing goals continues

It’s been five decades since President Lyndon B. Johnson signed the Fair Housing Act into law. There’s much to celebrate, but also much work to do. People with disabilities want to live in the community in a home that they rent or own. However, far too many find that discrimination limits their options: over half of all Fair Housing Act complaints involve discrimination on the basis of a disability.

What can you do?

We must remain vigilant and active to ensure that the Fair Housing Act’s promise continues to advance for the next 50 years, and to fight against any rollbacks of this vital law.

Sign up for alerts from The Arc to take action to protect fair housing and more.

If you suspect discrimination, you can file a complaint with HUD online or by calling 800-669-9777, or TTY 800-927-9275. You may also file a lawsuit in court. Contact your local fair housing agency for guidance and help filing a complaint.