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Schools Are Restraining and Secluding Students With Disabilities. New Bill Would Limit Practices.

Students with disabilities disproportionately experience restraint and seclusion, practices that are not evidence-based and cause lasting trauma.

Washington, DC, May 18, 2023 – Restraint and seclusion are traumatic, outdated, and ineffective discipline practices that are commonplace in schools throughout the country. Even though they have caused thousands of injuries and deaths, there are no federal laws to protect children from the abusive use of these tactics. Today, Senator Chris Murphy and Representative Don Beyer reintroduced the Keeping All Students Safe Act (KASSA) for the 14th Congress in a row. KASSA would eliminate the use of seclusion and prohibit the practice of restraint in most cases and give parents a private right of action against school districts that misuse these practices. Restraint and seclusion are disproportionately used against students with disabilities, particularly Black students, and have long-lasting consequences on their achievement and health. We urge Congress to once and for all pass minimum federal safety standards for these practices.

“Protecting students with disabilities from physical harm and abuse shouldn’t be a debate, but it’s something we’ve been fighting for over a decade,” shared Robyn Linscott, Director of Education and Family Policy at The Arc of the United States. “Instead of evidence-based de-escalation practices, untrained school personnel are subjecting students with disabilities to terrifying violations of their human rights and their lives. Thousands of times a day, students are being locked in closets and bathrooms, pinned to the ground, restrained with mechanical devices for hours, and worse. These practices are life-threatening and they’re denying students with disabilities a full and safe inclusion in our education system. Now is the time for elected officials to show their constituents that their safety in school matters.”

Restraint is intended to be used as a last resort in emergencies when there is a threat of imminent physical harm. Too often, it is used for minor behavioral issues, not complying with instructions, or even to punish manifestations of a child’s disability. Over 101,990 students, the majority of which are students with disabilities, are subjected to restraint and seclusion every year, a number that experts agree is drastically underreported. Students with disabilities represent 13% of the student population, but account for roughly 80% of those subjected to restraint and 77% subjected to seclusion. Some students are repeatedly restrained and secluded despite the fact that there is no evidence these tactics are effective in reducing the occurrence of the behaviors being punished. A patchwork of state policies and a lack of federal oversight and accountability allow these practices to continue freely.

To make matters worse, many parents are not notified at all or in a timely manner after their child is subjected to restraint or seclusion. In some cases, parents have gone weeks or years without knowing these disciplinary tactics were used against their child. This is particularly challenging for parents of children with intellectual and developmental disabilities, many of whom are not able to communicate what happened to them. KASSA would ensure parents are notified of an incident of restraint within 24 hours.

Since 2009, the Keeping All Students Safe Act (KASSA) has been introduced every Congress, but it has not garnered the support it needs to pass. Restraint and seclusion are serious civil rights issues affecting students with disabilities proportionately. KASSA would create federal standards around the use of these practices, empower families when their rights are violated, and offer a variety of supports and contingency plans to help teachers and school personnel effectively respond to medical and behavioral needs.

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About The Arc of the United States: 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. Founded in 1950 by parents who believed their children with IDD deserved more, The Arc is now a network of nearly 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. Through the decades, The Arc has been at the forefront of advances in disability rights and supports. Visit thearc.org or follow us @TheArcUS to learn more. 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.

Media Contact: Jackie Dilworth, dilworth@thearc.org

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Voting and Civil Rights Groups Challenge Inequity in Access to Voting Under Georgia Law

Organizations Seek Emergency Relief to Ensure the Rights of Georgia Voters With Disabilities Are Protected in Time for the 2024 Elections

Washington, DC – Voting and civil rights groups filed an emergency preliminary injunction motion seeking to lift restrictions in Georgia’s anti-voter law, S.B. 202, that target voters with disabilities. These S.B 202 provisions violate the Americans with Disabilities Act and Rehabilitation Act by unjustly burdening—and in some cases completely disenfranchising—Georgians with disabilities and denying them a full and equal opportunity to access and participate in the state’s elections. If granted, the preliminary injunction would help voters with disabilities have equal access to absentee voting in Georgia in the upcoming 2024 elections and allow counties to again provide drop boxes in locations that are accessible.

The American Civil Liberties Union, the American Civil Liberties Union of Georgia, the Legal Defense and Fund (LDF), Southern Poverty Law Center, The Arc of the United States, WilmerHale, and Davis Wright Tremaine LLP represent Georgians with disabilities seeking full political participation and equal access to voting in the state.

The preliminary injunction filed in the federal district court for the Northern district of Georgia in Atlanta asks the court to block two provisions of S.B. 202:

  1. A provision that makes it a felony for friends, neighbors, and even some institutional staff (among others) to help a person with a disability return their absentee ballot.
  2. A provision that requires counties to move ballot drop boxes from easily accessible outdoor locations to indoor locations that are more difficult for many people with disabilities to reach and limits the hours they can be used.

Zan Thornton, co-chair of Georgia ADAPT: “It’s essential that we stop S.B. 202 from infringing on our rights. We need this injunction to preserve our right to vote as disabled citizens of Georgia. In 2022, ADAPT got an avalanche of requests for rides from disabled people across Georgia who couldn’t cast their absentee ballots easily and needed to travel to the polls instead. That dramatic rise in barriers facing disabled voters of Georgia underscores the need for an injunction before 2024.”

Shannon Mattox, state director for The Arc Georgia: “S.B. 202 erects barriers that make it harder for Georgians with disabilities, especially people of African descent, to vote, which is a violation of their civil rights. People with disabilities in Georgia are entitled to equal access in voting and have the right to vote on issues that matter to them. We’ll continue to do everything in our power to ensure the rights of Georgians with disabilities are protected and enforced.”

Devon Orland, litigation director for the Georgia Advocacy Office: “Voting is a fundamental right. These laws were changed without thought for people who experience disabilities and the challenges they face accessing transportation, technology and care. Choosing to make access to a fundamental right harder is not only illegal, it is the antithesis of the foundational pillars of democracy.”

Brian Dimmick, senior staff attorney with the ACLU’s Disability Rights Program: “There are hundreds of thousands of voters with disabilities in Georgia, and many of them face challenges in voting in person and so rely on absentee voting. Instead of making absentee voting easier and more accessible, SB 202 puts new barriers in the way of voters with disabilities trying to exercise their fundamental right. We need the court to protect voters with disabilities by restoring the more accessible voting rules that were in place before SB 202.”

Caitlin May, voting rights staff attorney with the ACLU of GA: “With the passage of SB 202, Georgia has added barriers to voting for people with disabilities rather than making it easier for them to cast their ballots. It is unconscionable that SB 202 drastically reduces options Georgians with disabilities rely on to make their voices heard in elections. Today we’re filing to block some of the policies making the vote inaccessible to many Georgia voters, and hope that we can move towards expanding that access in the future.”

Poy Winichakul, senior staff attorney for voting rights with Southern Poverty Law Center: “S.B. 202 has created barrier after barrier for Georgia voters, restricting nearly every method of voting available to them. These cruel barriers to voting, enacted by the state’s supermajority legislature, especially target people of color and people with disabilities and violate their fundamental rights. We will continue to challenge this anti-voter law until all Georgians have full and equitable access to voting.”

John Cusick, Assistant Counsel, LDF: “S.B. 202 criminalizes aspects of the voting process and otherwise ensures that it’s difficult, if not impossible, for voters with disabilities, who include Black people, from accessing the ballot box. We are grateful that hard-won statutes enforcing civil rights like the Americans with Disabilities Act and Rehabilitation Act exist.”

By mandating that counties place drop boxes inside buildings and close them after business hours, Georgia makes voting an onerous ordeal for some voters with disabilities and completely impossible for others. A preliminary injunction is necessary to ensure voters with disabilities are not denied equal access to absentee voting in Georgia in the upcoming 2024 elections. Here, the Court should require Georgia to stop enforcing the confusing, chilling felony provisions and allow counties to provide accessible drop boxes.

The motion was filed as part of ongoing litigation in AME Church v. Kemp, which challenges S.B. 202 for illegally creating barriers to voting that diminish the voices of communities of color, women, and people with disabilities. Plaintiffs are the Sixth District of the American Methodist Episcopal Church, Delta Sigma Theta Sorority, Georgia ADAPT, and the Georgia Advocacy Office, represented by the ACLU of Georgia, ACLU, LDF, and Wilmer Hale, as well as the Georgia Muslim Voter Project, Women Watch Afrika, Latino Community Fund of Georgia, and The Arc Georgia, represented by SPLC, The Arc of the United States, and DWT.

CONTACTS:
Jackie Dilworth, The Arc, 240-593-5529, dilworth@thearc.org
Rotimi Adeoye, ACLU, 267-221-0828, radeoye@aclu.org
Evan Nowell, SPLC, 470-656-9395, evan.nowell@splcenter.org
Ella Wiley, LDF, 925-819-0555, ewiley@naacpldf.org

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Private Duty Nursing Makes Community Living Possible: How You Can Help!

For Jennifer, home health nurses hold her family together. Nurses come to her home and care for her 11-year-old child’s medical needs. They help ensure that her child’s tracheostomy (a surgically created hole in his neck) and ventilator are both working so he can breathe. Because of this care, her child can experience his childhood at home—riding his bike, going to school, and playing with friends.

Around the country, thousands of people with disabilities and families like Jennifer’s rely on private duty nursing to help their family members live at home and stay financially stable.

Private duty nursing is care provided by a registered nurse or licensed practical nurse to someone who has complex medical needs. A private duty nurse performs skilled care in a person’s home that is typically provided in a hospital or nursing home. Nurses may help monitor and ensure that ventilators and tracheostomies are working, change and monitor feeding tubes, provide IV therapy, and more.

Children and adults with disabilities who need these services rely on private duty nurses in order to live at home in their communities. Otherwise, they may be forced into an institution or nursing home—away from their families—and often have a lower quality of life and social inclusion.

For parents and family members, private duty nurses help the family stay intact. For Pamela from New Jersey, “The home health care nurses change our lives every shift they show up. I get the chance to just be mom, not nurse or therapist, and I can be more present for my older son.”

Private duty nurses also help families remain financially stable and parents remain employed. When their third child, Josh, was born and had significant medical needs, Debbi and Victor struggled to hold onto their jobs. Victor was often called away for active military duty. Debbi worked through the night to meet her deadlines and keep the health insurance they relied on for Josh’s care. “That insurance, it was always in the back of my mind, was what was keeping Josh alive.” The challenges of balancing work and family caregiving responsibilities began to mount. Debbi struggled to get approved for unpaid leave and as Josh’s care needs increased, Debbi had to reduce her working hours substantially. This was a financial burden for the entire family and increased her worry about losing her job altogether.

For many families nationwide, parents are forced to leave work to care for their family members who are medically complex. Pamela concedes, “Our son’s medical needs are left for us to manage; often at the cost of one parent having to leave behind their career.” It doesn’t help that there is still a lack of state paid family leave programs across the country.

Right now, 50 to 70% of private duty nursing shifts nationwide are going unfilled. This is causing additional pressure and stress for the families who need it.

The home skilled nursing workforce is experiencing a shortage similar to that of the general nursing and direct care worker communities, and Medicaid is often unable to pay nurses at the wages they could get in a hospital.

The result is that people with medical complexities are being hospitalized with avoidable complications, and parents and caregivers are being forced to leave their careers behind to care for their loved ones or to make the difficult decision to put their family members into an institution.

How You Can Help

Protect Medicaid from any cuts so that people eligible for private duty nursing receive their services.

Any potential Medicaid cuts could make access to private duty nurses even more difficult. The stability of families and quality of life for children and adults with medical complexities is at stake. Support proposals at the state and federal levels that would improve pay and benefits for private duty nurses and other members of the direct care workforce. Two major federal bills are the Better Care Better Jobs Act and the HCBS Access Act.

Support universal paid family leave that includes siblings and other family members.

The Paid Family Leave Act would help parents and family members stay employed while they balance work and provide the needed care to their family members with medical complexities when they cannot find a nurse. Some states nationwide are working to pass legislation to provide different variations of paid family leave. Contact your local legislators or state chapters of The Arc to support those bills.

A white woman with blonde hair to her shouldersstands smiling with her arms at her sides in front of an office desk cubicle. She is wearing a white t shirt, black pants, and white shoes.

When Small Talk With a Stranger Led to a Thriving Career: Amy’s Story

A white woman with blonde hair stands smiling with her arms at her sides in front of an office desk cubicle. She is wearing a white t shirt, black pants, and white shoes. After graduating from high school and realizing college wasn’t the right path for her, Amy—who has a learning disability—knew she was ready to begin building her career. She started with typical jobs for young adults, working at Bath and Body Works and Giant Food for several years while taking classes at the local community college until a chance meeting in the college parking lot changed her life.

Amy encountered a woman in the parking lot and engaged in some polite small talk. Serendipitously, the woman’s daughter also had a disability and was currently seeking a job. She had contacted a program called Project SEARCH, and the woman passed the information for the program along to Amy.

Project SEARCH is an employment program for people with disabilities that aims to train and place each participant in competitive and rewarding employment through a series of internship rotations. As an added bonus of the program, the placements help demonstrate to businesses the long-term value of hiring people with disabilities and the wide range of jobs they can be successful in.

Amy enrolled in the program and began her placements, including one at the Montgomery County Department of Finance Treasury Division.

Amy and her assigned employee mentor MaryAnn got along right away—she even had chocolate and a pen ready for Amy’s first day. They got to work learning about homestead compliance and correcting records in the department’s system. Amy learned what it took to succeed in an office job and focused on building skills and making herself an asset to the department.

Amy chose to pursue a Treasury Department job after all of her rotations were done and was thrilled to secure a full-time, competitive job there where she thrived in an environment where people believed in and supported her to succeed. Amy notes “When I first got hired, I was so grateful. I didn’t say it, but inside deep down, because I didn’t really know if it was going to happen. I felt really focused.”

Now 32 years old, Amy is still at the same job enjoying her work, and is optimistic about what her future holds.

“I like everyone I work with. They like working with me too. I am most proud of working on property tax refunds. I research accounts ahead of time to figure out who is eligible for a refund, and then take their information and add the record into our system so it can move to the next step. I’ve gotten better at it over the course of my time there and I like working in Excel.

I’m coming up on my 10-year anniversary, which makes me proud. I do think about the future and maybe learning more skills. It’s been quite the journey.

I have a job coach I see during work, but I live by myself. I have a one-bedroom, and my parents help me with things and have been supportive. They retired to Florida, and I miss them a lot. They come up and visit, and I fly down to stay with them.

When I’m not working, I like to run. It helps me. I don’t get to do it often because of my job, but anytime I can do it, it helps me think better. I like to hang out with friends—it’s good to be social.

Having a job allows me to be independent, buy groceries, pay housing expenses, and go out to dinner with friends.

I hope people don’t give up on their dreams and their goals. It’s very important to work and try to make a good life for yourself.”

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Medicaid Work Requirement in Debt Ceiling Bill Puts People With Disabilities at Grave Risk

Navigating these complex and extreme benefit tests will be particularly difficult for people with intellectual and developmental disabilities.

Today, the U.S. House of Representatives passed H.R. 2811, The Limit, Save, Grow Act of 2023, which includes radical new work requirements for Medicaid enrollees in exchange for lifting the debt ceiling. This Medicaid benefit test will harmfully transform our country’s primary health care for people with disabilities, deepen health inequities experienced by people with disabilities, and do little to boost employment. The Arc urges Senators and the President to reject this extreme benefit test and other harmful cuts contained in the bill as they work towards a deal to lift the debt ceiling.

The bill requires Medicaid beneficiaries to meet an 80-hour per month work-reporting requirement unless they meet an exemption. This doesn’t just apply to new enrollees or people eligible under the Affordable Care Act’s Medicaid expansion provisions – it applies to everyone ages 19-55 receiving Medicaid. Millions of enrollees will be forced to go through an obstacle course and navigate complicated red tape to keep coverage, including many who rely on home and community-based service waivers and Supplemental Security Income. The Congressional Budget Office estimates that 1.5 million adults will lose federal funding for their Medicaid coverage and the bill will cut Medicaid by an estimated $109 billion over the next decade.

“Medicaid is a lifeline for people with disabilities,” shared David Goldfarb, Director of Long-Term Supports and Services Policy at The Arc of the United States. “This policy not only undermines their access to life-sustaining health care and community living, but it also undermines their inclusion in the workforce. Navigating these complex and extreme benefit tests will be particularly difficult for people with intellectual and developmental disabilities, over 45% of which have a co-occurring health condition. In addition, many of the exemptions for the rule are vague and highly subject to the stigmas and biases of those with the power to determine eligibility. Millions of people who rely on these safety net programs will fall through the cracks in a system that is already difficult to grasp – and these changes will compound that problem.”

People with disabilities would need a doctor or other medical professional to deem them “physically or mentally unfit for employment,” which is not a standardized disability determination. Many people with disabilities already face barriers to accessing health care and discrimination from providers, which, if this legislation passes, would now come with the risk of losing Medicaid coverage. There is also an exception for caregivers who give care to an “incapacitated person.” This terminology is vague, subjective, crude, and could extremely limit the definition of caregivers.

All of this chaos and administrative burden comes at the misguided hope that this new benefit test will boost employment opportunities and outcomes. In fact, most adults that utilize Medicaid are working, the majority of which are working full-time. Those who are not working or are working part-time face barriers to employment, such as having a disability or caregiving responsibilities. What’s more, Arkansas had a short-lived work requirement for Medicaid back in 2018, which failed to increase employment and caused 18,000 people to lose coverage. The reality is that having Medicaid supports people’s ability to join the workforce, not hinders it.

The proposal comes at a time when:

  • states are expected to drop millions of beneficiaries due to the end of the Medicaid continuous coverage requirement during the COVID-19 pandemic;
  • over 650,000 people with disabilities desperately wait for home and community-based services, some of them for years;
  • and the nation is experiencing major labor shortages in health and long-term care.

Congress should be focusing on ways to expand access to services, not on cutting Medicaid.

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About The Arc of the United States: The Arc advocates for and serves people with intellectual and developmental disabilities (IDD), including Down syndrome, autism, Fetal Alcohol Spectrum Disorders, cerebral palsy, and other diagnoses. The Arc has a network of nearly 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. Visit thearc.org or follow us @TheArcUS to learn more. 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.

Media Contact: Jackie Dilworth, dilworth@thearc.org

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Comcast & The Arc Partner To Expand Tech Training and Special Education Advocacy for People With Disabilities

Washington, DC & Philadelphia, PA, April 11, 2023 – Comcast today announced that it is expanding its partnership with The Arc of the United States to foster digital and advocacy skills in people with intellectual and developmental disabilities (IDD) and their families. The expansion comes in the form of Comcast providing two new grants to The Arc totaling $710,000. The funding will allow The Arc to establish more Tech Coaching Centers at chapters across the country and offer The Arc@School special education advocacy curriculum to Spanish-speaking families. These programs have already helped over 3,500 people with IDD develop more independence, equity, and opportunities for their future.

“Far too many people with IDD are left behind in our society,” said Ruben Rodriguez, COO and Acting CEO of The Arc of the United States. “A quality educational experience and understanding of technology is fundamental in creating equal opportunities of all kinds. These systems continue to deepen extraordinary disparities among people with IDD, especially underrepresented communities and low-income families. Our continued partnership with Comcast is making opportunity a reality for all people with IDD. It’s chiseling away at our society’s inequities and helping everyone – no matter your disability – build bright futures.”

A first grant of $560,000 will support The Arc’s Tech Coaching Centers at 10 locations across the country. It will also expand the training model to include caregivers and family members of people with IDD to ensure they can support in the implementation of technology across all environments, including assistive technology.

With technology being an increasingly vital part of navigating and participating in today’s plugged-in world, including transportation, employment, recreation, and social interaction, people with IDD face unique barriers to understanding and adopting digital tools. This is exacerbated by a higher rate of poverty and lower overall income among people with IDD. Since 2014, Comcast has supported The Arc’s Tech Coaching Centers, reaching nearly 2,500 people with IDD through 19 chapters and giving them access to devices, services, and training that advance measured outcomes in employment, health, independent living, education, and interpersonal connections.

“We know that digital skills training can open new doors to opportunity and help people living with disabilities gain independence,” said Dalila Wilson-Scott, EVP and Chief Diversity Officer of Comcast Corporation. “That’s why we are proud to continue our long-standing partnership with The Arc to reach even more people with IDD – including their caregivers and families — and to create pathways that can help enrich their lives.”

A second grant of $150,000 will go towards advancing efforts to help marginalized communities better advocate for their education. This investment will allow The Arc to fully translate The Arc@School curriculum into Spanish to better meet this population’s needs and increase access to the content.

Academic achievement and graduation rates for students with disabilities lag far behind their peers, trends caused by inordinate discrimination, suspensions, and isolation within school settings across the country. In 2016, The Arc created The Arc@School, an evidence-based, self-paced online training program designed to help families, educators, and advocates navigate the special education system. Since 2021, Comcast has partnered with The Arc to connect underserved communities to these educational advocacy resources. To date, more than 500 families of color and low-income households have been given free access to The Arc@School, in addition to a facilitation guide, Spanish language overview of the special education process, and cultural competency resources and sections.

These grants were distributed through Project UP, Comcast’s $1 billion commitment to reach tens of millions of people in order to advance digital equity and help create a future of unlimited possibilities.

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About The Arc of the United States: The Arc advocates for and serves people with intellectual and developmental disabilities (IDD), including Down syndrome, autism, Fetal Alcohol Spectrum Disorders, cerebral palsy, and other diagnoses. The Arc has a network of nearly 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. Visit www.thearc.org or follow us @TheArcUS to learn more. 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.

About Comcast Corporation: Comcast Corporation (Nasdaq: CMCSA) is a global media and technology company. From the connectivity and platforms we provide, to the content and experiences we create, our businesses reach hundreds of millions of customers, viewers, and guests worldwide. We deliver world-class broadband, wireless, and video through Xfinity, Comcast Business, and Sky; produce, distribute, and stream leading entertainment, sports, and news through brands including NBC, Telemundo, Universal, Peacock, and Sky; and bring incredible theme parks and attractions to life through Universal Destinations & Experiences. Visit www.comcastcorporation.com for more information.

Media Contacts:
Jackie Dilworth, dilworth@thearc.org
Kim Atterbury, k.kim_atterbury@comcast.com

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Survivors of Sexual Violence With Developmental Disabilities in LGBTQ and Transgender Communities Speak Out

By: The Arc’s Talk About Sexual Violence Project and The Rainbow Program

How bias and discrimination impact survivors with developmental disabilities within the LGBTQIA+ community

Survivors of sexual violence with developmental disabilities (DD) within the LGBTQIA+ community often experience bias and discrimination which impacts their access to services:

  • There is a lack of sexuality education among this population which can increase their risk of being sexually violated
  • Society tends to minimize or ignore the sexuality of people with DD or not realize that they are sexual beings with sexual feelings, desires and needs.
  • Survivors often feel misunderstood and judged, so they don’t feel safe reaching out for help
  • They often try to hide who they really are
  • They face painful rejection by family and friends
  • They can also face discrimination at work
  • They are not allowed to make choices or supported by others to make their own choices
  • They can feel isolated because of a lack of support to help them meet and date others or establish long-term, fulfilling relationships
A woman in a bright pink sleeveless blouse stands smiling with her arms on her hips. She has blonde hair and behind her is the siding of a house.

Pauline Bosma

While there is little data on the percentage of disabled LGBTQ+ people who are victimized by crime, the statistics on the victimization of disabled people and LGBTQ+ people individually display the need for further investigation and support.

People might assume that everyone is heterosexual and so they assume that consensual same-sex relationships are abuse. They might feel like they have no one to trust if they want to report abuse. Sometimes when LGBTQ+ people with IDD report same-sex abuse, people think it was consensual, even if it was not.” – Pauline Bosma, Rainbow Program Coordinator

(Rainbow groups are groups for self-advocates who are members of both the disability community as well as the LGBTQ+ community.)

How can we address this bias and discrimination?

In order to address the bias, we have to educate society about two key things: how we can effectively include the LGBTQIA+ community in sexual education and violence prevention and  how to provide much-needed accommodations that allow survivors to feel and actually be included in their own sexual education, justice, or healing process.

Having an attitude and core value of inclusion means:

  • You actively listen to survivors with curiosity and compassion
  • You believe them
  • Your personal values don’t impact the quality of care you provide
  • You see them as a trauma survivor first, not their disability

Providing accommodations for survivors can look like this:

  • You speak to them directly, not to their care provider or family member
  • You ask them if they want peer support
  • You use active listening skills when talking to them
  • You show real concern for them and are patient with them
  • You comfort them in ways they can understand
  • You use everyday words and ask them if they understand what you are saying
  • You help them understand any paperwork they need to read or sign

How can society make real change for a new direction in the future?

Survivors with DD within the LGBTQIA+ community must be given the opportunity to lead the way to speak out when they are ready, provided training and education on this topic, be seen and trusted as experts on their own experiences, sought out by the community and policymakers for their valuable contributions, and not be seen or treated as a token in any way.

Survivors with DD within the LGBTQIA+ community shared their tips on how to make change:

  • We can learn how to speak up for ourselves and others!
  • We want to be active in our health care and recovery
  • We can train professionals about how they can speak to us, so we understand them and how to make our own choices
  • We can join coalitions related to this topic in our communities and states
  • We can be on the frontlines to help start a national conversation about sexual violence prevention
  • We can make sure to talk about self-care in advocacy groups so people feel supported
  • We can dream up ways to ensure long term support for survivors

“We believe Adult Protective Services, health care, and law enforcement can collaborate to strengthen their understanding about how people with disabilities and people in the LGBTQIA+ community have experienced discrimination when reporting abuse. We can all work together with survivors taking a leadership role in training. Nothing About Us Without Us!” – Patty Quatieri and Kecia Weller, Survivor Self-Advocates

Learn more about The Arc’s Talk About Sexual Violence project and more about the Rainbow Group.

 

Contributors:

Building Partnership Initiative, Peer Support Network

Pauline Bosma

Patty Quatieri and Kecia Weller, Co-Chairs

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Why the Debt Ceiling Matters and How You Can Help

The United States could hit the debt ceiling as early as June 1.

Right now, Congress and the President must decide what to do about the debt ceiling.

These decisions could have a BIG impact on people with disabilities and their families.

What is the debt ceiling?

The federal government regularly borrows money to pay for things.

The debt ceiling is the largest amount of money the federal government can borrow at one time. It can’t borrow more than the debt ceiling allows.

When the government gets close to hitting the debt ceiling, Congress must decide whether to:

  • Raise the debt ceiling, so the government can borrow more money to pay for things, or
  • Do nothing and fail to pay for the things it promised to do.

So far, Congress has always raised the debt ceiling.

This has happened 78 times since 1960.

Congress typically raises the debt ceiling high enough to last only a short time, from a few months to a few years.

What is happening with the debt ceiling debates now?

On April 26, the House of Representatives passed a bill to raise the debt ceiling.

It agreed to raise the debt ceiling for one year in exchange for over $3.6 trillion in budget cuts over 10 years.

The bill also adds radical work rules for all Medicaid enrollees who are ages 19 to 55.

These work rules would likely result in millions of people who rely on Medicaid getting kicked off the program.

The bill says that Medicaid enrollees would have to work at least 80 hours a month.

This includes enrollees who:

  • Get Social Security Disability Insurance or Supplemental Security Income and Medicaid
  • Have Medicaid waivers for home and community-based services

There would be only one way for people with disabilities enrolled in Medicaid to get out of this work requirement.

They would have to get a note from a doctor or medical professional saying they are “physically or mentally unfit” to work.

This adds a lot of red tape for people with disabilities and their families.

It also fails to understand that people with disabilities can and do want to work.

Medicaid’s rules related to work, savings, and disability are already complicated enough.

Adding more red tape will hurt people with disabilities and their families who rely on Medicaid.

What happens if Congress decides not to raise the debt ceiling?

If Congress does not raise the debt ceiling, the federal government may not be able to pay for important things like:

  • Medicaid, Medicare, and Social Security
  • The Supplemental Nutrition Assistance Program (SNAP)
  • Our military and the salaries of military service members
  • Tax refunds
  • And many more programs and services

The economy and stock market could also have trouble. It may cost people even more money to get a loan, and people could lose their jobs.

Everyone may struggle if Congress does not increase the debt ceiling.

But people with disabilities who depend on government services may be hurt more if the programs and services they need stop.

What You Can Do

Congress and the President can agree to raise the debt ceiling without cutting Medicaid or other essential programs.

Contact your members of Congress today and tell them to keep Medicaid out of debt ceiling negotiations.

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The Arc and The Coca-Cola Foundation Renew Shared Commitment to Education Equity and Self-Determination

Washington, DC, April 4, 2023 – The Arc is thrilled to announce that a grant from The Coca-Cola Foundation will help us empower families and students navigating the special education process, which continues to be a source of confusion and frustration for countless families across the country.

Too often, students and their caregivers do not know all the supports and services that they are entitled to, or how to successfully advocate for them. With The Coca-Cola Foundation’s support, The Arc is working to change that reality.

The new grant will support dissemination and facilitation of The Arc@School’s Self-Determination Toolkit and Special Education Advocacy Curriculum in five selected chapters of The Arc across the country. Through these resources, students with intellectual and developmental disabilities and their families will expand their knowledge about rights within the special education system and how to receive what they need to thrive in school.

Each chapter will utilize the Self-Determination Toolkit to work directly with students with disabilities and local school systems, with the ultimate goal of leading their own Individualized Education Program (IEP) meetings. Assisting students with disabilities to better understand self-determination is critically important to help them be their own advocate and develop those skills that will be important in their day to day lives now and in the future. Additionally, their parents and guardians will have the opportunity to access the online Special Education Advocacy Curriculum training for free to expand their knowledge on the IEP process and feel empowered to be meaningful partners alongside their children as they advocate for themselves.

“An equitable education is a vital building block of community life for people with disabilities,” said Katy Schmid, Senior Director of National Program Initiatives at The Arc of the United States. “Issues like restraint, seclusion, segregation, and a lack of accommodations don’t just hurt students during their formative years—they can have long-term negative effects socially, psychologically, academically, and sometimes even physically. Inclusion starts in the classroom, and we thank The Coca-Cola Foundation for their continued commitment to making sure students with disabilities thrive in school and beyond.”

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About The Arc of the United States: The Arc advocates for and serves people with intellectual and developmental disabilities (IDD), including Down syndrome, autism, Fetal Alcohol Spectrum Disorders, cerebral palsy, and other diagnoses. The Arc has a network of nearly 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. Visit www.thearc.org or follow us @TheArcUS to learn more. 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.

About The Coca-Cola Foundation: Established in 1984, The Coca-Cola Foundation has invested more than $1.5 billion globally to protect the environment, empower women to thrive and to enhance the overall well-being of people and communities.

Media Contact: Jackie Dilworth, dilworth@thearc.org

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Change Your World: Kick-Start Your Disability Advocacy With The Arc

For nearly 75 years, The Arc has been on the frontlines of the disability advocacy movement, fighting for the issues that matter most to people with disabilities and their families. The Arc is a grassroots organization with nearly 600 state and local chapters, all pushing for the full inclusion of people with disabilities on the federal, state, and local levels.

Every day, people with disabilities and allies across the country—just like you—are advocating to build a more inclusive world. And with everything that is on the line right now, we need every person who cares about disability rights and equality to step up and join our fight for inclusion for future generations. We need YOU!

So, what are you waiting for? You can join us RIGHT NOW and become a fierce disability activist! Here’s how:

  1. Find out who your members of Congress are: The Arc provides an easy way to see who your Senators and Representatives are. Head on over to our Action Center and enter your zip code in the Find Your Elected Official box on the righthand side. Once you know who your members of Congress are, visit their website and review their priority issue areas. Using this knowledge, you can tell them how important it is to include disability issues in legislative discussions.
  2. Connect with your state and local chapters of The Arc: Discover who your state and/or local chapters of The Arc are and where they are located. Visit their website to learn how you can get involved.
  3. Follow your members of Congress on social media: When Congress is in session, you can follow along with your members’ current legislative actions on places like Twitter—even if you don’t have an account! When they work on an issue that matters to you and/or aligns with The Arc’s Action Alerts, this is the moment when your outreach will make the greatest impact. Get in touch with them directly or through The Arc’s Action Center to share why they should support a position that benefits the disability community.
  4. Visit The Arc’s Action Center: The Arc’s Action Center (thearc.org/action) houses all The Arc’s current action alerts. Clicking on the alert you are interested in will lead you to a page with more information where you can send a note to your members of Congress showing your support. You can use our prefilled template or write your own. Once you have filled in your contact information and completed your submission, click the button at the bottom to submit your note.

Now that you are equipped with The Arc’s four key advocacy steps, get out there and start advocating for the disability community! Remember, take pictures of your advocacy when possible and share them on social media. Don’t forget to tag The Arc of the United States in your posts.

We can’t wait to see you out there!