Kris, a man with cerebral palsy, is smiling. He's holding a number 1 up with his hand.

Comcast and The Arc Collaborate to Improve Digital Skills and Make Life-Changing Impact for People With Disabilities

/in , , /by The Arc

Digital access and skills are a critical component of modern life. In 2023, The Arc and Comcast teamed up to help people with intellectual and developmental disabilities (IDD) leverage technology to open the door to new experiences in their communities.

The Arc and Comcast have a long-standing partnership to do this work. The Arc’s national network of nearly 600 chapters provides vital resources and services to individuals with IDD and their families to promote greater independence and opportunity in the community—and through this partnership, since 2017, more than 3,000 clients have received basic digital skills training.

The program continues to expand what’s possible for people with IDD in their professional and personal lives—giving them the tools to chart their own course, just like we all want to do.

Meet Kris, a 59-year-old man with cerebral palsy.

Kris, a man with cerebral palsy, is smiling. He's holding a number 1 up with his hand.Kris lives with his sister’s family in his hometown of Greely, Colorado, and has been successfully employed for 40 years, currently working full time at the busiest grocery store in town. He is an avid sports fan—Go Bears!—has a busy social life, and because of his gregarious personality he is a bit of a local celebrity, traveling around town on his e-bike. Kris has become very active in civic service—involved with the Chamber of Commerce, volunteering at local nonprofits, and serving in leadership roles at both The Arc of Weld County and on The Arc’s National Council of Self-Advocates.

To be effective in his new roles, Kris had to better leverage modern technology and communication platforms. He was comfortable with the basic use of his cell phone and his laptop, and The Arc of Weld County provided tech coaching to give him the confidence with the more advanced technology he needed to be successful. Kris learned how to navigate complex websites with multiple drop-down navigation structures and use passwords to access secure portals. His tech coaches showed him how to sync his calendars and email on both devices to stay on top of his busy schedule. He has even mastered accessing virtual meetings. After a long day, his eyes get tired and email can become stressful, so Kris taught himself how to use the read aloud feature to make it easier.

Kris continues to get weekly tech coaching sessions to keep advancing his skills. He is learning to use folders to organize his documents, better managing calendar invites, learning tactics to ensure he is responsive, and understanding how to identify and handle junk or malicious email. Like many of us, passwords and computer updates can still “throw him for a loop” from time to time, but he stays patient, and as he says, “It feels good when you figure something out.”

By advancing his technology skills, Kris has been able to pursue work that he feels is incredibly important. He shares his lived experience as a person with IDD while counseling disability organizations at the local, state, and national level on how to better support people with disabilities. “I know what it feels like to feel like you are not heard. I want to help people be heard.”

Meet Roselyn, a 60-year-old woman with Down syndrome.

Roselyn, a woman with Down syndrome, is standing in front of a house and smiling. She's wearing a colorful blouse and jeans. Her hands are on her hips.Roselyn has lived with her mother and received support from The Arc of Greater Indianapolis since 1981. During the week, Roselyn works at Corteva Agriscience through The Arc of Greater Indianapolis’ employment services. She works as part of a team that assists scientists in preparing seedling trays for growing new plants, hosing down trays when experiments are complete, and keeping the greenhouse labs clean. Roselyn is very proud of her work and the independence she has from earning a paycheck. She recently bought a kitchen table set and used her tax check to buy a new washer and dryer.

However, when her mom had to be moved into a nursing home quite abruptly, Roselyn needed an emergency placement. The Arc of Greater Indianapolis helped move her into a new living environment with staff support. Roselyn enjoys the financial independence that comes with working—for example, she has a standing hair appointment every two weeks for some pampering at the salon. With more activities in the community, Roselyn started wanting to enjoy some alone time without staff having to be with her. This was going to require some tech coaching to do so safely.

Roselyn had used cell phones over the years, but she never really explored the features they offered and would either lose or break them. If she wanted to call family, staff would have to help her. Staff at The Arc of Greater Indianapolis worked with Roselyn regularly for a couple of months as part of these tech coaching sessions. They helped her learn how to call and text family, friends, and staff and how to contact help if she ever feels unsafe. She has learned how to access the internet and use apps like Voice to Text to look things up and connect with friends. Now, she gets time to herself each day. Roselyn gets home from work around 1:30, but her staff don’t arrive until 3:30. She either calls or texts them, though, to let them know that she made it home safely. Then she spends some time searching for videos on dogs and cats (she loves showing these to her staff later) as well as watching her favorite shows online (she especially loves Night Court and Law & Order). If the weather is bad on Sundays, Roselyn even watches church online. When she’s not working or using her phone, she likes doing 5,000-piece puzzles, going shopping, and seeing her Colts or Pacers play.

Through tech coaching, Roselyn has achieved a newfound sense of independence. You never fully appreciate how nice it sometimes is to be alone if you’ve never been able to experience it. Roselyn loves her work, friends, family, and the staff who work with her. However, sometimes it’s wonderful to just spend some time alone.

“When we provide access to digital skills training, we create opportunities and pathways to independence that can be life-changing, especially for those living with disabilities,” said Dalila Wilson-Scott, Executive Vice President and Chief Diversity Officer of Comcast Corporation. “Partnerships, like the one we’re proud to share with The Arc, are at the heart of what drives us each day at Comcast because of the many lives we’re able to help impact. We’re so very honored to continue to grow our work together and help enrich even more lives.”

Comcast’s partnership with The Arc is part of Project UP, the company’s comprehensive initiative to address digital inequities and help build a future of unlimited possibilities. Backed by a $1 billion commitment to reach tens of millions of people, Project UP is focused on connecting people to the Internet, advancing economic mobility, and opening doors for the next generation of innovators, entrepreneurs, storytellers, and creators.

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A family posing for a photo in a living room. One of the sons has disabilities and is in a wheelchair.

Spotlighting The Arc’s Changemakers: Debbi Harris, Vice President of the Board

/in , /by The Arc

If anyone embodies the fierce, compassionate spirit of advocacy at the heart of The Arc, it’s Debbi Harris, MA, MS, the 2023 Vice President of our national Board of Directors. For over 25 years, Debbi has fought tirelessly to shape systems that fully include people with disabilities and complex medical needs—and it all starts with Josh.

A baby in a small tub. There is a piece of gauze taped to his chest.Debbi’s son Josh was born eight weeks early with a grade four brain hemorrhage. As she shares, “He was one of the sickest babies in the neonatal intensive care unit. It started our roller coaster of a journey of having a child with complex medical needs and disabilities.”

Securing reliable home nursing supports has always been a struggle. When he was an infant, there was a constant rotation of providers coming to her door, many of whom had limited training.

“It was really scary… Josh was harmed because people were coming in who weren’t well-oriented or trained to care for him. At just 18 months old, Josh was hospitalized three times because of this.”

Debbi and her husband Victor also struggled with their careers while managing Josh’s needs and raising their two other children. Victor was often called away for active duty with the military. Debbi worked full time in a traditional office setting, often working into the night to meet her deadlines and hold onto their health insurance. “That insurance was what was providing Josh’s life-sustaining medical care. But because of the hospitalizations, I gave up my career to stay home and care for him when he was two years old.”

A family, parents and three sons, posing for a photo in a living room. One of the sons has disabilities and is in a wheelchair.Out of crisis came purpose. Debbi soon immersed her family in The Arc’s chapter support systems, connecting her sons to sibling workshops and herself to a parent networking group. “We still count on those relationships for support today,” added Debbi.

Not long after, her local chapter of The Arc called on her to testify in support of the Tax Equity and Fiscal Responsibility Act (TEFRA) and better standards for care workers. Years later, when Josh was headed off to school for the first time, Debbi found herself in battle for nursing support. School officials told her that Josh couldn’t go to their school unless she paid for a nurse to accompany him during the school day. “I was so jolted by what they said, and I knew we had a big fight on our hands, so I went to The Arc and they stuck by me,” she recalled. “They looked up precedent cases, got their big-time lawyers involved… and we won.”

Debbi not only secured Josh’s rights to nursing care within the school, but her victory paved the way for other families. Now the school must notify every family whose child needs nursing care that they are entitled to support in school.

Debbi constantly found herself in circles with The Arc, including a fundraiser at the home of a family that had two daughters with disabilities. That led to leadership roles in chapters of The Arc—from serving on the Board of The Arc of Dakota County to The Arc of Minnesota and as Board Chair for The Arc of Greater Twin Cities. Debbi has been involved in so many aspects of community advocacy, including working with local and federal legislators. She’s also a published writer illuminating caregiving and equity issues in medical journals.

Debbi’s exceptional contributions earned her the prestigious Betty Hubbard Family Advocacy Award from The Arc of Minnesota in 2013. Her family got to witness her receiving the award. “It meant a lot that they were able to be proud of me in that way,” Debbi shares.

Debbi Harris posing with her son Josh.Once The Arc of the United States got word of Debbi’s powerhouse advocacy, we invited her to apply for the Board. Her proudest volunteer moments have been spearheading the creation of The Arc’s anti-racism position statement and filming a campaign for paid leave in her home. For Debbi, The Arc provides community, kinship, and collective power to drive social change. She points to our strong advocacy at the heart of improving quality-of-life for people with intellectual and developmental disabilities (IDD). And, as she adds, our work is “authentic, grassroots, and rooted in the lived experiences of people with disabilities. We see dignity in all people and we’re willing to make sure that everyone sees that dignity.”

For over 25 years, Debbi’s been on a mission to teach parents how to effectively advocate for their children and to shine a spotlight on the marginalization of people with IDD and the caregiving crisis—and that mission continues today. Debbi is eager to continue leveraging her passion, wisdom, and connections to uplift the disability community nationwide. Her relentless drive reminds us that within all of us lies the power to champion inclusive communities.

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A Journalist’s Guide to Disability for Election 2024

/in /by The Arc

Journalists, did you know people with disabilities are the largest minority voting bloc in our country? It’s also a population that has been growing rapidly as a result of the COVID-19 pandemic. Yet all too often, people with disabilities and the issues vital to them and their loved ones are absent from candidate debates, interviews, and media coverage.

Disability intersects with every issue because people with disabilities exist in every community and have diverse identities and beliefs. In addition, many disability issues are directly impacted by legislation and policies. That’s why it’s crucial your election coverage addresses these issues.

The upcoming elections carry substantial significance, particularly for the rights and essential services for people with disabilities. Their experiences and concerns must be prioritized alongside other critical issues. Including disability voices and highlighting disability issues also reflects a commitment to diversity and inclusion and educates all voters.

To ensure accessible and inclusive coverage, please keep the following considerations in mind.

Representation: The media has immense power in shaping ideals in our society. That’s why representation of people with disabilities matters, which means looking for disability angles in the issues you cover, interviewing disabled people about a wide range of topics, and putting forth accurate and respectful portrayals of them. Here are a few other tips:

  • Normalize the supports and technologies people with disabilities need to navigate daily living and fully participate in our society.
  • Educate yourself and your colleagues about ableism.
  • Be vigilant about how your story may propagate negative stereotypes or feature disabled people as a burden or inspiration.
  • Make sure photos that accompany your news stories encompass underrepresented people with disabilities, including people with intellectual and developmental disabilities.
  • When covering disability issues, don’t just speak to thought leaders and family members – interview diverse people with disabilities about their firsthand lived experiences.
  • Include the perspectives of people with disabilities in all kinds of stories, not just ones talking about disability.

Inclusive Language: The language used to describe people with disabilities is very individualistic. Person-first language (i.e., people with disabilities) emphasizes the person, not the disability. By placing the person first, disability is no longer the primary, defining characteristic of an individual, but one of several aspects of the whole person. Alternatively, identity-first language (i.e., disabled person) emphasizes a person’s disability as a core part of their identity. When interviewing a person with a disability, you should always ask how they prefer to be identified. For most IDD communities, if your story doesn’t focus on one person, we recommend using person-first language. Within the autism community, many self-advocates prefer and appreciate the use of identity-first language (i.e., autistic person). In addition, please avoid using the term “special needs” in your stories as this terminology is vague and becoming outdated. Find more resources and education on language from the National Center on Disability and Journalism. If candidates or colleagues are using offensive, derogatory, or harmful rhetoric for people with disabilities, we urge you to call them out.

Accessible Information: The news is a vital source of information and education for many, but not everyone can access it equally. Ensure that your reporting is accessible to people with various disabilities. Write in plain language, consider a multimedia approach to sharing your story (i.e., visual and text-based), provide accurate captions and transcripts for all audio and visual content (including web and social media streaming), use text descriptions of the content and purpose of images, use accessible fonts and formatting for online content, and put hyperlinks in context so screen reader software can provide more information. You can use a free web accessibility checker to identify issues.

To enhance your understanding of the issues impacting the disability community and guide your coverage of candidates and their stances, here’s what you should know.

Voting Barriers: Despite being such a significant population, people with disabilities are less likely than nondisabled people to turn out to vote in elections. That’s because they face a multitude of barriers in casting their votes. The Arc is working with other civil rights groups to challenge sweeping voter suppression laws that make it more difficult for voters with disabilities to participate in our democracy. We hope that you will do your part by shining a spotlight on policies and practices that hinder disability rights and inclusion in your community. Investigate and report on any discriminatory practices or barriers that may prevent individuals with disabilities from exercising their right to vote. This includes issues around mail-in voting, drop box voting, guardianship, getting support from a person of their choosing to cast their ballot, and accessible voter information. In addition, when covering campaign events and polling stations, always include accessibility information for these locations (i.e., whether an ASL interpreter will be there or if the location has wheelchair access).

Covering Topics Important to People with Disabilities: Your election reporting should cover issues and policies that directly impact people with disabilities. Report on the candidates’ stances on these topics and the impact of proposed policies. Below are areas that are causing deep inequities in the quality of life, autonomy, and opportunities for people with disabilities during this election cycle.

  • Getting A Safe & Inclusive Education: Education is a vital issue for voters, and everyone agrees that schools should be safe and nurturing places for all children. For students with disabilities, it’s too often a nightmare. Some of the barriers they face include disproportionate suspensions, harsh discipline practices, isolation from general education classes and peers, a dire shortage of special education teachers, low expectations and support, higher rates of being bullied, and a lack of urgency around identifying students who need special education services. It’s no wonder the academic achievement and graduation rates for students with disabilities lag far behind their peers. It’s important that journalists and candidates draw attention to these systemic issues that have a big impact on the futures of people with disabilities. Get a deeper look at these education issues so you can shine a spotlight on these injustices.
  • Experiencing the Dignity of Employment: As with most elections, candidates will address key aspects of job growth, labor disparities, worker rights, and the evolving job market. While these issues impact nearly every voter, one important group continues to be ignored: people with disabilities. Roughly 78% of people with disabilities and 85% of people with IDD are unemployed. When people with IDD do find employment, they are often paid less money for doing the same work. Most people with disabilities want to work and earn a living, but biases about their abilities and accommodations continue to keep them out of the workforce. Because of these realities, people with disabilities are twice as likely to live in poverty. People with IDD should be employed alongside people without disabilities and earn competitive wages, but too many barriers exist that lead to unemployment or underemployment. COVID-19 had a positive impact on the employment of disabled people, due to the labor shortage and ample remote work, but policies are quickly reversing. Discussions of employment must center disability and how candidates intend to improve the lives and opportunities of workers with disabilities. Learn more about employment the barriers and best practices.
  • Living in the Community, Not an Institution: People with disabilities want to live in their own homes and communities, not in nursing homes or institutions where their freedoms and choices are limited. Medicaid is a key program that makes community living possible through long term supports and services (LTSS). Every U.S. state has a Medicaid program, and millions of people with disabilities rely on LTSS for daily activities, such as dressing, bathing, meal preparation, taking medication, employment support, mobility assistance, and more. Yet LTSS has been chronically underfunded for years, resulting in a national shortage of direct care workers, years-long wait lists for access to services, and, ultimately, isolation and institutionalization that strips people with disabilities of their dignity. More than 650,000 people – 73% of which are people with IDD – are stuck on waiting lists for a nationwide average of 67 months. Medicaid also has an institutional bias, which means states that receive federal dollars for Medicaid must cover services within institutions, but community-based services aren’t guaranteed. This crisis has largely been under the radar as the general public has the misconception that there are ample services available for people with disabilities. Get well-versed on the LTSS issue and include it in conversations and articles involving state and federal safety net programs.
  • Experiencing Victimization and Criminalization: Crime rates and safety in communities are always key issues during elections. A critical and often overlooked angle is the overrepresentation of people with disabilities in the criminal justice system. Disabled people are more likely to experience victimization, be arrested, be charged with a crime, and serve longer prison sentences once convicted, than those without disabilities. Individuals with other marginalized identities are even more likely to get caught up in the system. Once entangled, they face unique challenges, bias, and inaccessible services, which only perpetuates the cycle of criminal justice involvement. People with disabilities must be afforded the supports and accommodations required to make justice and fair treatment a reality. Learn more about criminal justice issues to guide your coverage.
  • Supporting Paid and Unpaid Caregivers: Underfunding in LTSS has also created a crisis in the availability of Direct Support Professionals (DSPs), the workers who provide these services. DSPs make on average $15 an hour nationally, which is the same wage, or less, as workers in fast food, convenience, or retail – or even unemployment. Given this low investment in their skilled work, DSPs face a significant turnover rate of 30-70%. Many DSPs want to continue doing this important work, but it is not financially sustainable. At the same time, federal regulations have remained largely silent about training requirements, which means providers are relying on unqualified and poorly trained people more than ever, and then scrambling to invest in their workforce.With dwindling access to skilled DSPs, families must increasingly fill in the gaps to ensure their loved ones have the support they need for a quality, meaningful life. Nearly one million U.S. households have an adult with IDD living with and supported by a caregiver. Yet managing the needs of people with disabilities without training or support is leaving caregivers stressed, isolated, in poor health, and suffering financially. Nine in ten caregivers of people with IDD report that their caregiving responsibilities had an impact on their employment. Many have lost their jobs and/or income because of the demands of care. What’s more, it’s becoming a multi-generational crisis as people with IDD are living longer than ever, putting the burden of care on siblings and younger family members. Paid caregivers deserve more investment in their work and unpaid caregivers need public and private support. Get background on the family caregiver crisis and what can be done to help.
  • Having Financial Independence: Social Security and Supplemental Security Income (SSI) play a vital role in helping people with disabilities pay for basic needs like food, clothing, and shelter. More than 12 million people with disabilities receive benefits from Social Security, SSI, or both. These programs were designed to combat poverty among disabled people, but certain income-based and/or asset-limit eligibility policies do just the opposite. SSI benefits are extremely modest, averaging only about $550 per month, and beneficiaries cannot have more than $2,000 in assets, neither of which have been indexed to inflation. Thus, many people with disabilities cannot plan and save for future needs like others, contributing to ongoing economic inequalities often resulting in lifelong poverty. Many are just one emergency away from homelessness and hunger. These barriers are compounded by the Social Security Administration being in a state of crisis, where millions are waiting for appointments, decisions on applications, and appeals on rejected claims. Learn more about financial security issues and policies that you can get candidates’ positions on.

Looking for even more topics to explore and experts to interview?

Check out our position statements and our press center to discover other issue areas that you can explore in your coverage. You can also schedule an on-the-record or background interview with The Arc’s local and national experts. Simply contact the communications team below.

Kristen McKiernan, Senior Executive Officer of Communications & Marketing
mckiernan@thearcwebdev.wpengine.com or 202-534-3712

Jackie Dilworth, Director of Communications
dilworth@thearcwebdev.wpengine.com or 202-617-3271

About 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. 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 thearcwebdev.wpengine.com 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.

There is a man wearing a tan suit with a floral button up shirt underneath. He is smiling.

DSP Spotlight: Lawrence Discusses Hardship Imposed on Direct Care Workforce

/in , /by The Arc

There is a man wearing a tan suit with a floral button up shirt underneath. He is smiling.Working with people with disabilities is Lawrence’s long-time passion. He has worked as a direct support professional (DSP) in New York and Texas, both before and after serving in the Army. As a DSP, Lawrence takes pride in the trusted role he has in the lives of people with disabilities. He helps transport people to and from appointments, gives medicine, cooks, cleans, dresses, changes, and feeds people who may not be able to do these things for themselves. He even seeks out specialized training that is needed to support people who have challenging behaviors that may result in injury to themselves and others.

For years, the DSP field has been undervalued and underfunded. For Lawrence, this comes from a lack of recognition and social awareness.

“It is important for people to recognize the skills, training, and importance of our profession and how comparable it is to jobs with similar requirements,” says Lawrence. “I have performed in nursing and emergency services roles; I can say these skills easily translate to direct support professionals. However, these other professions receive not only more public credit but also a substantially larger salary… I have served in this profession for 18 years and don’t have the heart to leave. But right now, I am only earning just over minimum wage and having to work 60 hours a week.”

Dedicated direct support professionals do their best every day to care for people with disabilities and seniors. However, due to poor pay, it is hard for many DSPs to support themselves and their families on this below-average wage.

Recently, the crisis impacted a family that Lawrence works with. When the mother could no longer physically care for her teenage son, Lawrence stepped up. In Texas, it can take 6 years, on average, to get Medicaid home and community-based services. During this time, many people with disabilities end up in institutions, like nursing homes, because they can’t get the support they need to live at home. To prevent this from happening, Lawrence offered to house the teenager and care for him in his own home, at his own expense. “I support him out of the very wages I am paid by Medicaid for my work. It is my choice, but I shouldn’t have to do this for the young man to get the help he needs,” says Lawrence.

Being a direct support professional requires many critical skills but is often easily overlooked by those making decisions about Medicaid funding. As a result of this oversight, there are not enough DSPs to help all the people who need care. The low pay scale often means that people are not able to gain proper training or stay long enough in a DSP role to learn all the skills needed for the position.

“It is my prayer that our government works diligently to support the people with disabilities in our communities and their families. It is desperately important that the processes for funding, equipment, placement, and care be streamlined and that we recognize the value and appropriately pay those who work with people in need. It is through this that we will drastically improve the quality of care and quality of life of those with disabilities.”

There is an exam table at a doctor's office in the forefront. In the background is a counter with papers, a sink, medical equipment, and posters hanging on the wall.

“He Isn’t Worth Helping” – Devastating Stories of Medical Ableism

/in , /by The Arc

Our health care system is failing people with intellectual and developmental disabilities (IDD) – and costing them their lives. Their shared experiences are eye-opening and egregious, including doctors outright refusing to provide services, wrongly attributing health issues to their disability, not viewing people with IDD as reliable communicators of their own health issues, making assumptions about quality of life and worthiness, refusing to allow a support person to accompany them, discounting their pain, and more.

People with IDD are being denied life-saving treatments or even routine preventative health care at disproportionately high rates. The research reinforces what we hear every day: people with IDD have poor experiences at hospitals and medical centers, which leads to poorer health outcomes and shorter life expectancies. Explicit bias and discrimination are directly limiting lifespans and causing unconscionable, avoidable suffering. Many of these discriminatory policies and practices were laid bare by the COVID-19 pandemic.

To combat these health inequities, the U.S. Department of Health and Human Services (HHS) is proposing updates to Section 504 of the Rehabilitation Act, landmark legislation prohibiting disability discrimination. Unrevised in 50 years, reforms would forbid medical discrimination against people with disabilities and improve accessibility. These urgent updates are important steps forward for protecting rights and ensuring equitable health care access.

The Arc has been a longtime advocate on this issue, and we jumped at the opportunity to submit comprehensive comments to HHS on these proposed updates. We shared research on the wide-ranging discrimination people with IDD face in health care settings and highlighted the need for reasonable modifications and plain language communications.

Most crucially, we included direct stories of discrimination collected from people with IDD and their loved ones nationwide. Here are a few of their stories.

  • A parent in Washington state has been told by doctors and health care providers that their child with Down syndrome “isn’t worth helping… isn’t worth saving.”
  • A child with autism in New York was denied care from a pediatrician for basic primary care services out of concern that his care needs would “overwhelm” the pediatrician’s practice.
  • When her son with Down syndrome experienced febrile seizures and stopped talking, his parent was told, “He has Down syndrome. What do you expect? They don’t talk.”
  • People with IDD are frequently denied clinically-appropriate treatment that would be offered to a person without IDD. For example, a parent in Connecticut was told by multiple doctors that her 10-year-old son’s chronic joint pain “is part of his disability” or “growing pains” before finally receiving a Lyme disease diagnosis three years later and being told the damage is permanent.
  • A parent in Maryland reported that it took 6 years to find a therapist for her daughter, who has Down syndrome. “[My daughter] is verbal but it is difficult for her to verbalize her feelings… I thought she had been sexually assaulted. I was finally able to get her [help], but it was temporary.”
  • Accessing mental health and dental services are particularly challenging for people with IDD. For example, Michigan parents of a young child with autism who was denied service by a dentist, were “dismissed with a warning not to come back until he no longer expressed the behaviors of an autistic child.”

The stories are innumerable, infuriating, and heartbreaking. But they power our advocacy. We will continue advocating for Section 504 reforms addressing the pervasive and longstanding discrimination that people with IDD experience from medical professionals. Everyone deserves equal access to health care.

By uplifting the voices of people with lived experiences, we’re holding health systems accountable and pushing them to see all patients as equally deserving of quality, individualized care. Join us in speaking out against medical ableism until equity is reality. Health care is a human right that must not be denied for any member of our community.