A woman and her son smile for the camera.

Planning Can’t Wait: Preparing for Life’s Emergencies

Thinking about your child’s future after you’re gone is hard for most parents. For the parents of people with disabilities, the topic can be so daunting that it can feel impossible to broach.

The result? Families all over the country shelve this conversation as long as possible. But the COVID-19 pandemic has been a stark reminder that planning can’t wait. The hard truth is that reactive instead of proactive planning means that people and their families have little to no control over the supports and life choices available to people with disabilities in emergencies. 

Mapping a secure and independent future for loved ones with disabilities is both necessary and possible. It can be done step by step over time…just like financial and life planning for anyone else. Creating a future plan looks different for everyone:

  • Does the person want to live in a group home? On their own? With a sibling or other family member? How much support do they need to achieve the most independence possible?
  • What do they like to do in their free time? What support do they need to do those activities?
  • What public benefits are they currently receiving? Are they covered under insurance policies or trusts? Do they have a job or savings, or will they in the future?

Delores Sallis is no stranger to planning. Not only has she made it a priority to set up her son Albert for success, but she is working hard in her community to ensure other families feel confident doing the same.

Delores and Albert’s Journey

A woman and her son smile for the camera.

Sallis’ inspiration is her son Albert, her “pride and joy.” Albert, 30, has intellectual and developmental disabilities and lives at home with Delores.

Delores worked in a group home for 35 years, and saw many residents suffer because things didn’t go according to plan when parents passed away. Siblings that were supposed to become guardians didn’t show up. Residents didn’t have families to go home with for the holidays. Many missed their old routines and declined. Delores would often bring home multiple residents so they would not spend the holidays alone.

Delores resolved to ensure Albert never encountered the same pain: “I didn’t want my son to decline because of that.”

As Delores began to contemplate what his future would be like without her in it, she devised a plan for several “practice runs” where Albert’s sibling would assume responsibility of him for 24-hour periods. After several difficult situations throughout the exercise that highlighted the flexibility and fortitude required, plans for his sibling to become the primary caregiver were revisited.

Instead, one of his old teachers named Laurie stepped in. She lived two blocks away, and Albert was one of her favorite students in high school. When COVID-19 hit, she became his emergency contact in case Delores contracted the virus. Laurie also recruited two other teachers to back her up if she needed to take over his care. Delores’ friend volunteered to manage his assets, and Albert’s sister would cover safety and wellness checks. This network of support would also enable Albert to remain in his existing home, which already had the benefit of familiarity as well as modifications in place for him.

Seeing both the benefits of a robust plan and the dangers of not having one, Delores decided to put her passion for helping families navigate their personal journey into action. After years of informally supporting families, Sallis founded Parent University in the Wisconsin African American Women’s Center in 2017.

She encourages her families to create a vision board. Watching them chart a path to the future brings her tears of joy. “I start at the bottom where they’re at and we climb a ladder together,” Delores said. “Sometimes people think they have failed. The problem is they just didn’t know how to do something.” She also continues to provide these valuable opportunities to local families even during COVID-19, recently coordinating a “drive-through” resource fair.

Families also benefit from the community Delores has created. Many had never opened up about their family before, but once they were surrounded by others who shared their fears and experiences, it became the highlight of their week to meet. Parent University isn’t just a place to learn—it’s a support group and community that helps every family member tackle the fear of future planning by remembering they’re not alone.

As for Delores? Her successful planning for Albert’s future is based on one core principle: planning is a process that never ends. Being truly prepared means continually pivoting with the inevitable changes that life brings over time. With determination, Delores notes “He has a great life and I’m gonna try to keep it that way.”

So how can families that have a loved one with a disability be proactive, rather than reactive? Start by learning more about future planning to ensure your loved one has the housing, decision-making, financial, and social supports they need—gradually and piece by piece. The most important thing is to take the first step and start.

A man wearing a black pinstripe suit jacket, white dress shirt and blue floral silk tie posing. In the background is a photo of trees and the Capitol building.

The Arc Honors the Legacy of Civil Rights Icon Representative John Lewis

The Arc issued the following statement in remembrance of Representative John Lewis (D-GA):

“The Arc mourns the loss of a fearless leader whose lifelong commitment to civil and human rights made a difference in the lives of countless individuals across the country. From his experiences on Bloody Sunday in Selma, Alabama to weathering racist attacks at the lunch counters in Nashville, Tennessee, Representative Lewis’ career as a leader in the civil rights movement and Representative for Georgia’s 5th Congressional District was characterized by his indomitable spirit in the face of adversity and championing the rights of marginalized people and communities.

“As we reflect on the 30th anniversary of the Americans with Disabilities Act, we remember the critical role he played in fighting discrimination and injustice in all its forms. He embraced the rights of people with disabilities in his fight for racial, economic and social justice for all people. He staunchly opposed efforts to repeal the Affordable Care Act – he appreciated the importance of that law in guaranteeing access to health care for people with disabilities. While Representative Lewis will no longer be among us, his passion will live on in the generations of Americans who continue the fight for justice, equity and inclusion today.

“In honor of Rep. Lewis’s legacy, The Arc commits to continue fighting all forms of discrimination based on disability, race, sex, gender identity and expression, sexual orientation, national origin, or any other protected status. And we will continue our work to promote the voting rights of people with intellectual and developmental disabilities, whose participation in our democratic process must be recognized and valued. To quote Rep. Lewis, ‘The vote is precious. It is almost sacred.’,” Peter Berns, CEO, The Arc.

A woman and her brother take a selfie in a car. The woman is smiling and the man has his eyes closed and a neutral expression.

Three Years to the Day Since Senator John McCain’s Thumbs Down: Congress Is Still Forgetting #WeAreEssential

By: Nicole Jorwic, JD, Senior Director of Public Policy

I was up at midnight when the clock turned over to July 28, 2017, my brother Chris’ 28th birthday. My brother has autism and is the person I have on my shoulder, in my heart, and in my head when I advocate every day. I watched Senator McCain come to the Senate floor to give his infamous thumbs down with tears streaming down my face, realizing that it was the end of the fight that the disability community just won.

And now we sit three years later, and that win feels so long ago. We have been waiting two months to see what the Senate will do with the $3 trillion HEROES Act that passed the House on May 15, 2020, a bill that included many priorities for the community.

Individuals with disabilities, their families, the workforce, and allies have been diligently reaching out to their Senators since May. And yesterday when Senate Republicans unveiled their plans, it appears that almost nothing of what the disability community needs is part of the new proposals. In fact, the HEALS Act—introduced the day after the 30th Anniversary of the Americans with Disabilities Act (ADA)—would gut the civil rights protections of the ADA in the face of the pandemic. The HEALS Act is a non-starter, while the HEROES Act that passed the House in May had many proposals that recognize the needs of people with disabilities.

The HEROES Act in the House included the top priorities of the disability community:

  • $13 billion in funding for Medicaid Home and Community Based Services (HCBS). Funds that will help keep people with disabilities out of dangerous congregate settings, support recruitment and retention of the direct support professional (DSP) workforce, and prevent rate cuts for service providers.
  • Access to PPE and supports for the DSP workforce.
  • Stimulus payments without limitations for people with disabilities.
  • Paid leave provisions to support family caregivers who must miss work to support their family members with disabilities.
  • Broad FMAP increased to 14% to stabilize the Medicaid program, one of the only funding sources for Long-Term Services and Supports.

From the summaries, the Senate proposals only ensure that people with disabilities are eligible for stimulus payments. The proposals do nothing to support HCBS, Medicaid, PPE and supports for DSPs, or paid leave for family caregivers. Already five pieces of COVID-19 relief legislation have moved, including three large relief packages, and the needs of the disability community have been overlooked in each. We will not be ignored again. The asks of the disability community around this crisis are simple: recognize that whether it is individuals with disabilities like my brother Chris, family members, or the DSP workforce, #WeAreEssential. On the anniversary of Senator McCain’s bold and brave thumbs down, we must all act and tell the Senate to protect the Medicaid programs that people with disabilities rely on.

"Americans With Disabilities Act 30th Anniversary" graphic against a purple background

ADA 30: Carrying on the Legacy

“I think we made great strides when it came to all the advocacy that went into the ADA. I do think if we didn’t do all of the advocacy for the ADA, we might not be where we are today in regards to people with disabilities.” – Joseph Damiano, Self-Advocate.

Joseph Damiano of Belfast, New York has never known life without the Americans with Disabilities Act, the ADA.

“The ADA was in place when I was born, so the ADA has been my viewpoint with everything that has gone on in my life,” Damiano said.

Damiano, 25, is a determined self-advocate who graduated from Alfred State College in June.

“I myself was able to go to college and you never heard about a lot people with disabilities going to college prior the ADA,” said Damiano.

As we mark 30 years since President George H.W. Bush signed the Americans with Disabilities Act into law, we reflect on the momentous fight for rights for people with disabilities, like Joseph Damiano and millions more. We give thanks to advocates everywhere who never gave up. We consider how the ADA can be improved and we envision what we want the future of the law’s promise to be, as advocates continue to demand better.

“We need to get more allies who know about the ADA and people to teach them it has lots of improvements still to be made such as accessible restrooms not always being accessible,” said Katie Griffith, a 34-year-old self-advocate from Gilbert, Arizona, who served as Ms. Wheelchair Arizona in 2016. “We need more advocates to unite.”

The Arc was instrumental in the fight for the ADA. The Arc’s Senior Policy Advisor Marty Ford served as one of many champions of the legislation. While Justin Dart, Jr. was the recognized leader of the substantial coalition effort to pass the law, Ford noted that former leaders of The Arc Elizabeth Boggs and Paul Marchand were integral in its passage. In addition, the grassroots actions from chapters and members of The Arc and other coalition organizations were critical to passage.

“One thing that is really important about the advocacy around the ADA is that everyone joined together. All of the advocacy organizations were in it together. One for all and all for one – no special deals,” said Ford reflecting back on the unified front to advance the rights of people with disabilities. “We didn’t allow ourselves to be pulled apart.”

Ford, whose brother Jud had intellectual disability, credits the ADA with laying critical groundwork.

“Through the success of ADA advocacy, the disability community became much more visible. Congress was much more aware of our issues and had more respect for the needs and the rights of people with disabilities. They started listening,” said Ford. “My brother lived most of his life before the ADA passed. I’m thrilled to see young self-advocates take leadership and take advantage of the ADA’s opportunities.”

“I look up to and have high respect for all the people who worked so hard to put the ADA in effect, as well as other disability laws,” said Griffith.

But thirty years later, our work is not done.

“It seems like they refuse to understand the ADA,” said Anthony Nash, a self-advocate from Richland, Washington, who was a little boy when the law passed. Nash says he regularly encounters businesses that are not in compliance with ADA regulations.

“We are fighting for respect and the right to live our lives,” said Nash, who is chairman of the Washington State Developmental Disabilities Council Public Policy Committee, “The ADA needs to be improved by being enforced in all businesses and schools. Respect what we want and not what they want. They are supposed to be supporting us in what we want in our lives.”

Nash is also a board member of The Arc of Washington State and Disability Rights Washington. He is also the web coordinator of Self-Advocates in Leadership.

As the ADA turns 30, Joseph Damiano is preparing for a new chapter of his life. He’s making plans to start in an employment training program while continuing his advocacy as chairman of self-advocacy group the Collaborative of New York.

“We shouldn’t stop advocating for the ADA right now even though the ADA is passed. We still need to fight for that and make sure the ADA stays in place,” said Damiano.

A strong advocate for independent living and home and community-based supports, Griffith has a message for other young people with disabilities who are carrying on the legacy.

“Is this the world we want to live in after your parents are gone? Is this the land of the free? Don’t ever be afraid to listen to that inner voice inside of you that tells you it’s okay to be the light and fight for your rights and the next generation and those with disabilities.”

Griffith, Damiano, and Nash are officers of The Arc’s National Council of Self Advocates

"Americans With Disabilities Act 30th Anniversary" graphic against a purple background

The Arc Commemorates and Reflects on the 30th Anniversary of the ADA

This Sunday, July 26th, we celebrate the 30th anniversary of the Americans with Disabilities Act (ADA). The Arc is proud of our role in protecting the rights of people with disabilities, including as a significant player in the passage of the ADA. Consistent with our work for decades on policy development  and legal efforts on key issues including deinstitutionalization, transforming state service systems, and ensuring that people with IDD have access to education and life in the community, The Arc was committed to advancing the bill creating a national mandate for the elimination of discrimination on the basis of disability. From educating Congress and the public on the discrimination faced by people with disabilities and their families, helping to organize the grassroots, and supporting Congressional hearings and promotion on the Hill, The Arc was actively engaged in the fight for the ADA. State and local Chapters of the Arc were integral to the movement. Through the tenacious advocacy of The Arc with our allies across the disability community, the bill passed with broad bipartisan support.

The ADA transformed the country in important ways, changing expectations for the lives of people with disabilities. The law requires accessibility and bans discrimination in almost all private businesses, and has significantly reduced discrimination in state and local government services. The transportation and paratransit provisions have yielded greater mobility and community participation. Employment provisions have been important, for example, providing protections in the hiring process and expanding the use of job accommodations for workers with disabilities. The built environment has tangibly changed based on the requirements of the ADA, for example, ramped building entrances and curb cuts on sidewalks are now common. In major ways, people with disabilities are closer to the goals of equality of opportunity, full participation, independent living, and economic self-sufficiency defined in the law.

Thanks to the work of countless committed advocates, we have taken meaningful steps toward the elimination of discrimination against individuals with disabilities. We reflect with pride on the many ways the ADA has achieved its promise. However, even as we honor the powerful progress we have made, there is still much ground to cover. We must end inappropriate and unnecessary institutionalization and ensure sufficient long-term services and supports to accomplish the goal of the integration mandate; address low employment rates for people with disabilities; ensure fair and equal treatment in the voting process; and continue to work to eliminate the architectural, communication, transportation and other barriers and disparities that prevent people with disabilities from sharing in and contributing to the promise of this country.

As we observe the thirty-year landmark of the passage of the ADA, we face a global pandemic. COVID-19 has hit the disability community extremely hard. People with disabilities, particularly people with disabilities in congregate settings and the people who provide their services, are experiencing high rates of infection and death, and this impact is magnified in communities of Black and Brown people, Native Americans, and immigrant communities. In this era, we have utilized the ADA and other disability rights laws to oppose illegal disability discrimination in treatment rationing protocols being developed in response to COVID-19. But more must be invested into the home and community-based system so that people with disabilities can be safe and stay in their homes and communities. We continue to champion the #WeAreEssential campaign, because we must sustain the fight for the lives of people with disabilities and to dismantle the serious and still pervasive remnants of discrimination on the basis of disability.

We know that the intersection of disability with poverty and racism increases the prejudice and harm that many people experience. Right now, our nation is engaged in social justice and civil rights struggles to address systemic racism and violence. As we renew our commitment to the ADA, and the charge to eliminate unjustified segregation and exclusion of people with disabilities from American life, The Arc reaffirms our goal to protect against forms of discrimination based on disability, race, sex, gender identity and expression, sexual orientation, national origin, or any other protected status. We will keep fighting to defend the rights and lives of people with disabilities and their families, and advance toward full integration and inclusion for all.

The Arc logo

COVID-19 Hotspots Arizona and Texas Crisis Standard of Care Plans Challenged by State and National Groups in Federal Complaints

WASHINGTON – A coalition of state and national disability and civil rights advocacy groups have filed complaints with the U.S. Department of Health and Human Services, Office for Civil Rights (OCR) challenging the crisis standard of care plans in Arizona and Texas, two states hit hard by the COVID-19 pandemic.  These crisis plans are used to decide who receives life-saving treatment. Along with state partners, the national groups—The Arc, the Center for Public Representation, Disability Rights Education and Defense Fund, the Autistic Self Advocacy Network, the Bazelon Center for Mental Health Law, and Justice in Aging—argue that the plans discriminate against people with disabilities, older adults, and people of color, placing these communities at risk of substantial and imminent harm—and the real risk of being denied basic and emergency treatment—during the pandemic.

The COVID-19 situation in both states is dire. Arizona is ranked at the top of the list for the highest number of confirmed COVID-19 cases per million residents in the world. In Texas, COVID-19 cases continue to set new records with each passing day, with Dallas County recently reporting over 1,000 new cases for six days in a row. Based on the unprecedented spread of the virus, medical officials in both states have warned that some hospitals have reached capacity and the crisis plans have been activated. While decision-making in these scenarios is bound to be challenging, it is unacceptable and illegal for the guidelines for decision-making in life-or-death situations to be discriminatory.

Since Texas has never adopted statewide crisis standards despite repeated requests from the disability community, the Texas complaint challenges the North Texas Mass Critical Care Guidelines issued by the North Central Texas Trauma Regional Advisory Council. This Regional Advisory Council is responsible for overseeing the provision of emergency medical services for 8 million Texans or 30% of the state. The Arizona complaint challenges the statewide Crisis Standard of Care guidelines along with the recently-issued COVID-19 Addendum.

The complaints allege that, among other things, the plans categorically exclude people with certain disabilities from life-saving treatment; fail to modify policies and procedures that discriminate against people with disabilities, including no-visitor policies and the use of assessment instruments; and fail to prohibit treatment decisions that are based on discriminatory assumptions regarding future medical resources the patient may require. In addition, denying life-saving treatment to people who have certain illnesses or underlying conditions, as well as those with life-expectancy of less than five years will inevitably have a further discriminatory impact on Black, Native, and Latinx communities who are more likely to have certain underlying conditions and a shorter life expectancy than whites. These communities also face a disproportionate risk of COVID-19 infection and hospitalization, putting them at greater risk of being subject to these discriminatory plans. As such, the plans reinforce current and historical inequities in access to health care, and risk importing quality of life criteria and unconscious bias into the triage process, which will inevitably lead to inconsistent and subjective decision-making, higher rates of clinical error, and discriminatory allocation of care.

“People with intellectual and developmental disabilities are at higher risk of contracting COVID-19 and at a higher risk of dying from it than people without disabilities,” said Peter Berns, Chief Executive Officer, The Arc. “As states like Texas and Arizona see alarming new surges in the spread of the virus, it is imperative that the civil rights of people with disabilities be at the forefront. People with disabilities must have equal access to health care under federal law and cannot be left behind during a life-threatening public health crisis.”

“Right now, given the limited supply of hospital beds and life-saving equipment, the medical rationing plans in Arizona and Texas could result in a death sentence for some persons with disabilities, older adults, and people of color.  They are clearly discriminatory in light of OCR’s recent guidance and resolutions,” said Steven Schwartz, Legal Director of the Center for Public Representation. “We call on OCR to take urgent action to protect the lives of people with disabilities, whose lives are at imminent risk as these discriminatory plans are being activated.”

In addition to filing complaints with OCR, the national disability organizations have created resources at Center for Public Representation and The Arc to assist stakeholders across the country in evaluating and advocating for non-discriminatory medical rationing plans.

For more information about these complaints, contact:

Kristin Wright, The Arc of the United States

wright@thearc.org or 202-617-3271

Alison Barkoff, Center for Public Representation

abarkoff@cpr-us.org or 202-854-1270

The Arc logo

The Arc Reacts to Trump Administration Memorandum to Exclude Undocumented Immigrants in Count for Congressional Representation in 2020 Census

Washington, D.C. – The Arc released the following statement regarding the Trump Administration’s directive to exclude undocumented immigrants, including those with disabilities and their family members, in the 2020 Census count as it applies to Congressional representation:

“The Constitution is clear – the Census counts every person in our country. We know that there are many hard to count populations, including people with disabilities, that require extra effort to make sure they are counted. Excluding any group is harmful to our nation’s commitment to counting all persons, not just some, so that Congressional representation accurately reflects the population.

“The Census affects the lives of everyone in our country. For people with disabilities, the data is used to determine how much money state and local governments get for important programs like Medicaid, housing vouchers, food assistance, and education services. When there isn’t enough money, services and programs for people with disabilities will not be available to all who need them.

“The US Supreme Court has already ruled that the Administration could not add a question about citizenship status to the Census. They should not be allowed to make an end run around that ruling and remove people from the Census rolls, based on immigration status, when the Census count is transmitted to Congress. It is more critical than ever that people complete the Census and that everyone, including undocumented immigrants with disabilities and their family members, are counted. The Administration’s directive is harmful to achieving a fair and accurate Census and must be reversed,” said Peter Berns, CEO, The Arc.

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 over 600 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.

Editor’s Note: The Arc is not an acronym; always refer to us as The Arc, not The ARC and never ARC. The Arc should be considered as a title or a phrase.


Photo of desks in a classroom with dim, moody lighting

Court Rules That Federal Disability Rights Class Action Against Charleston, West Virginia School District Can Proceed

Washington, D.C. – A federal judge has denied Kanawha County Schools’ (KCS) motion to dismiss a civil rights class action lawsuit filed by The Arc of West Virginia on behalf of children with disabilities in the county. The lawsuit alleges that the school district, which educates children in the Charleston, West Virginia area, fails to provide effective behavioral supports to students with disabilities and sends them home instead of educating them in violation of federal law. Plaintiffs The Arc of West Virginia and parents of two students with disabilities are represented by Disability Rights of West Virginia, Mountain State Justice, The Arc of the United States, the Bazelon Center for Mental Health Law, and the global law firm Latham & Watkins LLP.

The amended complaint, filed in April, describes how KCS disciplines students with disabilities for “infractions” as minor as touching another student with a plastic fork or refusing to get off the playground slide at the end of recess.  Children with disabilities are suspended or sent to a separate special education classroom, instead of receiving individualized supports for behavior, required by federal law, that have been shown to help children to succeed in school. Specifically, the complaint alleges that KCS is:

1) violating the Individuals with Disabilities Education Act (IDEA) by failing to provide children with disabilities with the special education they need to receive a “free appropriate public education” in the least restrictive environment; and

2) violating the Americans with Disabilities Act (ADA), Section 504 of the Rehabilitation Act, and the West Virginia Human Rights Act by failing to educate children with disabilities in the most integrated setting appropriate to their needs, and denying them equal educational opportunity.

KCS moved to dismiss the children’s case, arguing, among other things, that the case could not proceed as a class action because the IDEA requires that every individual student file a “due process” complaint with the West Virginia Department of Education before claims alleging systemic problems can be filed in federal court.  Judge Irene Berger of the U.S. District Court for the Southern District of West Virginia disagreed, holding that the students’ allegations were “structural in nature, and the[ir] experiences demonstrate the inadequacy of the relief available through due process complaints. … Requiring hundreds or thousands of impacted putative class members to individually exhaust remedies would serve no purpose.” Judge Berger also noted that “the remedies available [in due process proceedings] would not adequately address the alleged issues, and results would likely be piecemeal and inconsistent. West Virginia has two hearing officers, and the delay inherent in individual exhaustion would render any relief futile for many students.”

“The Arc has long fought for the rights of students with disabilities to receive the supports they need to thrive in their neighborhood schools alongside their peers without disabilities,” said Peter Berns, Chief Executive Officer of The Arc of the United States. “We are pleased that this decision allows West Virginia students with disabilities to continue to pursue this goal and vindicate their rights in court.”

“The Arc of West Virginia is committed to supporting the rights of students with disabilities throughout the state to receive the supports they need to progress academically and socially,” said Liz Ford, Executive Director of The Arc of West Virginia. “Students throughout West Virginia are struggling greatly during this pandemic and it is essential that we continue our advocacy to ensure that they have the behavior supports they need upon returning to school, particularly during this challenging time.”

Data from the West Virginia Department of Education shows that over 1,000 KCS children with disabilities were suspended during the 2018-2019 school year, causing them to fall farther and farther behind academically and socially. This number does not include all of the additional students with disability-related behaviors who were informally sent home from school early and/or told to stay home, without a formal suspension. It also does not include students with disabilities who were expelled from school for their disability-related behavior; those who were separated unnecessarily from mainstream classrooms and moved to segregated classrooms where they receive an inferior education; or those who were placed on “homebound” status where they may receive only a few hours of tutoring each week. The problem is only getting worse: in the 2018-2019 school year, KCS removed nearly 250 more students with disabilities from the classroom than in the prior academic year, despite overall KCS enrollment decreasing during that same period. Read more about the case, which is continuing following last week’s decision, here.

About The Arc

The Arc is the largest national community-based organization advocating for and serving people with intellectual and developmental disabilities (IDD) and their families. In partnership with its network of more than 600 chapters across the country, including The Arc of West Virginia, The Arc works to promote and protect the rights of people with IDD to live, work, and learn in the community free from discrimination. To learn more, visit www.thearc.org and www.thearcofwv.org

About Disability Rights of West Virginia

Disability Rights of West Virginia (DRWV) is the federally mandated protection and advocacy system for people with disabilities in West Virginia. DRWV protects and advocates for the human and legal rights of persons with disabilities. To learn more, visit https://www.drofwv.org/.

About Mountain State Justice

Mountain State Justice is a non-profit legal services firm dedicated to redressing entrenched and emerging systemic social, political, and economic imbalances of power for underserved West Virginians, through legal advocacy and community empowerment offered regardless of ability to pay. To learn more, visit https://mountainstatejustice.org/.

About the Bazelon Center for Mental Health Law

The Bazelon Center for Mental Health Law is a national legal advocacy organization protecting and advancing the rights of people with mental disabilities. The Center promotes laws and policies that enable adults and children with mental disabilities to live independently in their own homes, schools, and communities, and to enjoy the same opportunities that everyone else does. To learn more, visit www.bazelon.org.

About Latham & Watkins LLP

Latham & Watkins LLP is global law firm with more than 2,700 lawyers located in Asia, Europe, the Middle East, and the United States. For more information, please visit its website at www.lw.com.

a group of people of varying ages walk on a field with sunset in the background. They all wear blue shirts that say "volunteer".

Dive Into Inclusive Volunteering: Apply for a 2021 MLK Day of Service Grant!

Now more than ever, Americans are looking for innovative ways to volunteer in their communities. For many, giving back means the opportunity to rebuild the neighborhoods they love, as well as the chance to momentarily relieve the anxiety everyone is feeling.

For the same reasons as Americans without disabilities, Americans with intellectual and developmental disabilities are eager (and able) to volunteer during this season as well. Thanks to a partnership between The Arc and the Corporation for National and Community Service, local nonprofits can now offer a solution that is a win-win for everyone. By applying for $5,000 and $10,000 grants this summer, community organizations can design inclusive volunteer programs so that everyone can serve their communities at this critical time.

Past grantees have demonstrated that including all citizens (regardless of background or ability) creates a more welcoming and equitable community for everyone. Many have also testified to the value of inclusive volunteering for the organization, with activities leading to new community partnerships and increased ability to reach new groups and service areas.

Keystone volunteer events must be held on the MLK Day of Service weekend (January 15 – 18, 2021). Volunteer activities can also occur throughout the grant period (October 2020 – September 2021).

Successful grantees will:

  • Partner with a service club to recruit volunteers with and without disabilities from diverse racial and ethnic backgrounds to participate alongside each other
  • Work with hunger and food insecurity focused groups (e.g., community food banks, food pantries, soup kitchens)
  • Provide food aid on the MLK Day of Service and MLK Day of Service weekend and continue through the end of the grant period (September 30, 2021)
  • Raise $31,000 (applying for a $10,000 grant) or $15,500 (applying for a $5,000 grant) in in-kind or cash matching funds to support the project

Now is your organization’s opportunity to join us and bring inclusive volunteering to your community! Apply for a 2020 grant today! 

All proposals must be received by Thursday, August 27, 2020 at 11:59 p.m. ET

Request for Proposal (Word) | Request for Proposal (PDF)

Black and white photograph of justice scales sitting on a desk in a courtroom

The Arc Calls for Georgia Supreme Court to Reexamine Unconstitutional Standard for Proving Intellectual Disability in Death Penalty Cases

WASHINGTON – The Arc of the United States, The Arc Georgia, and The Georgia Advocacy Office filed an amicus brief Monday before the Georgia Supreme Court in the case Palmer v. Georgia. The brief explains that Georgia’s requirement that defendants facing the death penalty must prove their diagnosis of intellectual disability “beyond a reasonable doubt” to be exempt from execution creates an unacceptable risk that people with intellectual disability will be executed. Georgia’s burden of proof undermines clinical science and encourages jurors to rely on stereotypes. While the Georgia Supreme Court has previously declined to find Georgia’s standard unconstitutional, more recent decisions by the U.S. Supreme Court necessitate a different outcome in this case.

“For decades, The Arc has advocated for capital defendants with intellectual disability leading to critical Supreme Court precedent prohibiting their execution. Mr. Palmer and other people with intellectual disability on Georgia’s death row must be afforded their constitutional rights and not be subjected to harmful stereotypes,” said Peter Berns, CEO, The Arc. “Georgia’s ‘beyond a reasonable doubt’ burden of proof for establishing intellectual disability in death penalty cases is inconsistent with the clinical process of diagnosing intellectual disability and the risks are deadly.”

“Because of The Arc’s advocacy, Georgia was the first state to prohibit the execution of people with intellectual disability by statute even before the U.S. Supreme Court banned this practice,” said Stacey Ramirez, State Director, The Arc Georgia. “However, Top of Formdespite Georgia’s early leadership on the issue, it is the only state that requires defendants to establish intellectual disability beyond a reasonable doubt and, since Atkins, not a single defendant in Georgia has been held to be exempt from execution due to intellectual disability. Georgia’s untenable standard violates the Constitution and puts people with intellectual disability at grave risk.”

In Atkins v. Virginia (2002), the U.S. Supreme Court recognized the special risk of wrongful execution faced by persons with intellectual disability and banned their execution as cruel and unusual punishment under the Eighth Amendment. Since the Georgia Supreme Court last reviewed its death penalty statute in 2011, the U.S. Supreme Court mandated that states cannot ignore clinical science or impose procedures that create an “unacceptable level of risk” that people with ID will be executed. 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. The Court’s decisions in Moore v. Texas (2017, 2019) strengthened this precedent by emphasizing the need to rely on well-established clinical standards—rather than stereotypes—in making intellectual disability determinations in death penalty cases. The Arc filed amicus briefs in Atkins, Hall, and Moore to educate the court on the clinical diagnosis of intellectual disability and ensure that the important precedent set in Atkins continues to be strengthened and upheld in jurisdictions around the country.