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5 Disability Stories Journalists Should Be Covering Right Now

Are you a journalist looking for impactful stories that demand greater coverage? If they aren’t already, disability issues should be part of your reporting. One in 4 U.S. adults and 1 in 6 people worldwide report having a disability, statistics that are likely underreported, yet this population remains underrepresented in media. Increased coverage is crucial for social progress. When news stories ignore the disability perspective, they perpetuate exclusion and misunderstanding. By spotlighting disability voices and angles, journalism can help dismantle stigma, drive policy reform, and push society closer to inclusion and equality.

The Arc is here for you. We’ve been driving positive change for individuals with intellectual and developmental disabilities (IDD) for almost 75 years. To do our part in media representation, we’re launching this new blog where we’re bringing you timely and often overlooked stories.

Here are 5 urgent angles you should report on:

1. The Home and Community-Based Services Funding Crisis

Every person deserves the freedom of living in their own homes, being a part of their communities, and choosing how they spend their days. Medicaid’s home and community-based services make that possible for millions of people with disabilities and older adults, supporting daily needs such as dressing, bathing, meal preparation, taking medication, employment support, mobility assistance, and more. Unfortunately, chronic underfunding of HCBS has created a catastrophe for people who need it most, resulting in a national shortage of direct care workers and years-long wait lists for access to services. This access crisis is now exacerbated by the end of Medicaid continuous enrollment this year, which has led to states kicking more than 10 million people off Medicaid. Without access to basic support for daily living, people with disabilities and older adults are at risk of being confined, isolated, and neglected in institutions or trapped in their homes. With dwindling access to HCBS, the burden is increasingly falling on families to step in as caregivers, leading to financial hardship, lost jobs, social isolation, and mental and physical exhaustion.

Powerful journalism exposing the impact of this crisis can spur public pressure and policy reform, particularly in getting emergency federal funding in the end-of-year fiscal package. Storytelling focused on those confined against their will, disabled people who lost their HCBS access due to the Medicaid unwinding, or families under strain due to lack of accessible care can shine a light on this overlooked issue.

2. Disability-Based Discrimination in Health Care

People with disabilities face a multitude of barriers in accessing our health care system. One pervasive and largely overlooked issue is widespread disability-based discrimination in health care, and its dire implications. The issue is complex and multifaceted, but some of the barriers include inaccessible equipment and physical environments, a lack of training and time in caring for people with disabilities, and explicit and implicit biases including assumptions about quality of life and worthiness. This leads to people with disabilities being denied life-saving treatments or even routine preventative healthcare at much higher rates. Ableism in healthcare directly limits lifespans and causes avoidable suffering. Black and brown people with disabilities face particularly dangerous disparities.

The U.S. Department of Health and Human Services (HHS) is proposing new regulations that would prohibit medical providers from discriminating against people with disabilities and set new standards for accessibility at the doctor’s office. Section 504 of the Rehabilitation Act of 1973 is a landmark civil rights law that prohibits discrimination on the basis of disability in programs and activities that are funded by the Federal government. Unfortunately, it hasn’t been updated for 50 years ago. The proposed updated rules are necessary to ensure disabled peoples’ lives are not valued less than others and that health care is accessible to all.

Increased journalism focused on exposing discrimination and disregard for disabled lives is vital. Storytelling and data-driven reporting can raise public awareness and pressure health systems to reform. We must make medical providers see all patients as equally deserving of quality treatment.

3. Overcriminalization of People With Disabilities

People with disabilities, especially people of color, are dramatically overrepresented in the criminal justice system. Yet media coverage often fails to capture their experiences. According to the Bureau of Justice Statistics, people with disabilities face much higher arrest and incarceration rates – for example, Black youth with disabilities are 17% more likely to be arrested than their non-disabled peers. And studies show that up to 50% of people shot and killed by police have a disability. Despite the prevalence of this issue, many officers lack training on interacting with and supporting this high-risk population. Their failure to accurately perceive disabilities often escalates encounters, increasing trauma, violence, and unjust stigma. There are solutions, like The Arc’s National Center on Criminal Justice and Disability’s (NCCJD) efforts in crisis prevention and response teams led by the disability community. Similar initiatives recognize that reform requires centering the voices of those impacted.

We urge you to investigate the entanglement of people with disabilities in the justice system and spotlight solutions. Share stories that humanize, contextualize, and advance change. Your reporting has immense power to create a more just, inclusive society.

4. Lack of Employment Opportunities

Diversity in our workforce strengthens cultures and bottom lines, but one important group continues to be overlooked: people with disabilities. Meaningful employment not only provides vital income, but it also fosters independence, dignity, and respect. Yet people with disabilities, particularly people with IDD, are extremely underrepresented in the workforce, despite their desire to work. People with disabilities have long faced exclusion and seclusion, and that issue persists today. Barriers include limited job opportunities, misconceptions about accommodations, and overt discrimination. They often leave school with little to no community-based vocational experience or planning for transitioning from school to work. When employed, few people with IDD have opportunities to advance, explore new possibilities, or, in their later years, retire. Unrealistically low limits on assets and earnings add to a fear of losing vital public benefits if they work too many hours or earn too much. Lack of other services — like transportation or accommodations — can also hinder success.

Many people with IDD succeed in roles alongside people without disabilities. Data proves that businesses employing people with disabilities outperform businesses that do not. In addition, people with disabilities, on average, stay in their jobs longer than their counterparts without disabilities. Journalists can explore the barriers to employment, workplace discrimination, myths about abilities and accommodations, and inclusive hiring practices. Your work can help break down barriers, reduce discrimination, and create a society where everyone has access to meaningful employment.

5. Exclusion From Sexual Education

Everyone deserves access to accurate, unbiased, and inclusive sex and relationship education. Yet a shocking majority of people with IDD – up to 84% – do not receive sexual education in school systems and other settings. At the same time, some individuals may engage in sexual activity as a result of poor options, manipulation, loneliness, or physical force rather than as an expression of their sexuality. This leads to another horrifying statistic: people with IDD are sexually assaulted and/or raped at a rate seven times higher than those without disabilities. The lack of access to sexual education varies widely by state and only five states require sex ed to be accessible to people with disabilities. For decades, people with IDD have been thought to be asexual, having no need for loving and fulfilling relationships with others. Individual rights to sexuality, which is essential to human health and well-being, have been denied. This loss has negatively affected people with IDD in gender identity, friendships, self-esteem, body image and awareness, emotional growth, and social behavior. Another sensitive dynamic is the parent’s understanding and acceptance that sex education is appropriate and important for their child with a disability. Every person has the right to exercise choices regarding sexual expression and social relationships.

Journalists can play an important role in advocating for equitable access to comprehensive sex education programs, shedding light on the imperative of empowering people with IDD to make informed decisions about their sexual health and relationships.

Considering how large and diverse the disabled population is, we encourage you to include their viewpoints in all of your stories, whether they relate to disability or not! We also hope you will investigate these topics in your own communities. Please contact us at dilworth@thearc.org if you need sources, background information, or other issues. Also, be sure to visit our Press Center to find guides on reporting on disability. We are excited to see your impactful work!

Congresswoman Cathy McMorris Rodgers, U.S. Representative for Washington State stands in front of a podium. Behind her is an orange sign with The Arc of Spokane logo.

Amazon Announces Donation Program With The Arc to Advance Connectivity and Independence for People With Disabilities

Amazon Will Donate 5,000 Devices, Provide Monetary Support, and Engage IDD Community for Ongoing Feedback

Washington, DC – Technology can be life-changing, but people with intellectual and developmental disabilities (IDD) disproportionately face barriers to access and adoption. Amazon and The Arc have announced a landmark community program that will expand technology access and empower greater independence for thousands of people with IDD.

Amazon is donating 5,000 Echo Show and Fire Tablet devices to nearly 600 chapters of The Arc across the United States. The Arc, along with TechSoup, the leading nonprofit network facilitating distribution and adoption of technology solutions, will implement the national donation program to its chapters. The donation will enable people with IDD to leverage technology to improve daily living. The organizations will also build upon their existing work of giving people with IDD the opportunity to provide product feedback on Amazon devices.

“This collaboration is about more than donating devices – it’s about empowering people with disabilities to live life on their own terms,” said Katy Schmid, Senior Director of National Program Initiatives at The Arc of the United States. “Autonomy, entertainment, education, inclusion – these are essentials of a meaningful life, and they continue to be out of reach for many people with IDD. Our community uses technology for their daily needs in inventive ways, and this program will give even more people greater control over everyday moments. Together, we can help close the digital divide and help people with IDD fully participate in society in ways many of us take for granted.”

Congresswoman Cathy McMorris Rodgers, U.S. Representative for Washington State stands in front of a podium. Behind her is an orange sign with The Arc of Spokane logo.“The disability community is full of untapped potential just waiting to be unleashed,” said Congresswoman Cathy McMorris Rodgers, U.S. Representative for Washington State. “In today’s digital world, innovative technology is the key to unlocking new and exciting opportunities for individuals living with disabilities to achieve their goals. I’m grateful for the efforts of Amazon and The Arc to further empower every person with a disability to live a more full and independent life.”

This partnership will help people like:

  • Grace, a tween with Down syndrome, autism, ADD, hearing loss, and visual impairment who uses her device to get ready in the morning, play her favorite songs, help with her academic work, and notify her parents when she needs help.
  • Scott, an adult with IDD and a hearing impairment who uses his device to hear the local weather, dance, and learn new things.
  • Jonathan, an adult with an intellectual disability and bipolar disorder who uses his device to listen to music, set an alarm for morning wake-up, stay organized, and be more in touch with his sister.

“We’re excited to work with The Arc to support and empower people with disabilities” said Leila Rouhi, Vice President of Trust for Devices and Services at Amazon. “It is energizing to see how our devices meaningfully improve the lives of customers like Grace, Scott, and Jonathan, and we will continue working to make the world more accessible through technology for people with IDD.”

The community program kicked off this week at a launch event with Congresswoman Cathy McMorris Rodgers held at The Arc of Spokane on November 20, 2023.

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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. There are over 7 million people with IDD in the United States, which encompasses over 100 different diagnoses, and over 80 million family members who love and care for them. 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.

About Amazon: Amazon is guided by four principles: customer obsession rather than competitor focus, passion for invention, commitment to operational excellence, and long-term thinking. Amazon strives to be Earth’s Most Customer-Centric Company, Earth’s Best Employer, and Earth’s Safest Place to Work. Customer reviews, 1-Click shopping, personalized recommendations, Prime, Fulfillment by Amazon, AWS, Kindle Direct Publishing, Kindle, Career Choice, Fire tablets, Fire TV, Amazon Echo, Alexa, Just Walk Out technology, Amazon Studios, and The Climate Pledge are some of the things pioneered by Amazon. For more information, visit amazon.com/about and follow @AmazonNews.

Headshot of Katherine Neas

The Arc of the United States Names Katherine Neas as Its Next CEO

Washington, DC – The Arc of the United States, the oldest and largest nonprofit serving people with intellectual and developmental disabilities (IDD), today named Katherine (Katy) Neas as its new CEO. Katy brings more than 35 years of experience in disability policy and public and nonprofit leadership to the role. Her tenure with The Arc of the US will begin in January 2024.

Headshot of Katherine NeasKaty is a visionary leader who has devoted her career to disability rights, and she has deep connections in the field. She joins The Arc from the U.S. Department of Education, where she served as Deputy Assistant Secretary in the Office of Special Education and Rehabilitative Services. Prior to that role, she was Executive Vice President of Public Affairs for the American Physical Therapy Association (APTA) and for Easterseals. She is widely regarded for her bipartisan and collaborative work, earning her roles including Past Chair of the Consortium for Constituents with Disabilities (CCD). Earlier in her career, Katy served as Legislative Assistant to Senator Tom Harkin and the U.S. Senate Subcommittee on Disability Policy, where she worked on landmark legislation such as the Americans with Disabilities Act (ADA) and the Individuals with Disabilities Education Act (IDEA). Katy holds a B.A. from Georgetown University.

“We are very excited to welcome Katy Neas as the next CEO of The Arc,” said Laura Kennedy, Board President for The Arc of the US. “Her more than 35 years of working as a highly respected advocate for people with disabilities will continue to move The Arc forward with its important work. She is well known as an ally and thought leader by government officials and legislators, nonprofit providers, self-advocates, parents, and executive staff across the country. She is the right person for our organization as we continue to work hard to help every person with IDD be heard and have the opportunities to thrive.”

“Stepping into this role as CEO of The Arc feels like coming home,” said Katy Neas. “Throughout my career, I’ve been lucky to work arm-in-arm with fierce advocates and caring providers to drive progress. That open collaboration and trust is what makes The Arc so special – never losing sight that we do this WITH people with disabilities, not just FOR them. I’m in awe of The Arc’s profound legacy, from pioneering special education access to spearheading community living. Now, I’m honored to continue that legacy into the future, but we won’t rest on past wins. Together with families, self-advocates, and partners, we’ll build an even stronger organization to meet the challenges ahead. I can’t wait to listen and learn from every corner of this community and lead inclusively into the next era of success. The Arc’s brightest days lie ahead.”

“The Arc’s Board of Directors made a very wise choice in selecting Katy,” said Paul Marchand, a longtime and influential disability policy champion who served The Arc for 38 years. “I’ve worked closely with her for more than 30 years, and her disability policy knowledge is outstanding. She is a leader in all respects – smart, loyal, a good listener, and a coalition builder. Katy has held high level positions in nonprofits, in a huge federal agency, and she cut her teeth on Capitol Hill. She’s done it all, and The Arc couldn’t have found anyone better to lead into the future.”

As CEO of The Arc of the United States, Katy will be responsible for leading the nearly 75-year-old organization and its Washington, DC-based national office for 578 chapters across the United States. She steps into the role at a pivotal moment for disability rights, as issues like the caregiving crises, ongoing exclusion from schools and workplaces, and threat of losing hard-won civil rights have made The Arc’s mission more crucial than ever. Katy will build upon The Arc’s legacy and thought leadership among disability and civil rights groups while advancing its mission to ensure people with IDD can lead full, meaningful, and self-directed lives.

Katy was selected following an extensive national search led by Heidrick & Struggles and a Search Committee comprised of staff and Board members from The Arc, chapter executives, community partners, and a self-advocate. Heidrick & Struggles conducted town halls, surveys, and one-on-one meetings with key stakeholders, including The Arc’s National Council of Self-Advocates and chapter executives.

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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. There are over 7 million people with IDD in the United States, which encompasses over 100 different diagnoses, and over 80 million family members who love and care for them. 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.