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Providers Who Care for People With Disabilities Deserve a Raise

This letter was originally published in the Syracuse Post-Standard. It has been adapted with permission from letter-writer Barbara Davis, a member of The Arc’s National Sibling Council.

I am the sister and legal guardian of a sibling with an intellectual or developmental disability (IDD). She resides in Onondaga County in New York and receives services from The Arc of Onondaga. I live in Virginia and have been her long-distance advocate and guardian for the past 20 years, since our parents passed away. I would like to share with you the support and care my family has been fortunate to receive from The Arc throughout my sister’s lifetime.

Our family pediatrician referred my parents to The Arc shortly after my sister was born in 1954, and I can’t imagine what her life (or ours) would have been like without the essential services The Arc provides.

From childhood well into adulthood, she attended The Arc’s Day Habilitation program, where she learned daily living and social skills, made friends, and enjoyed group activities. She bonded not only with other participants but also with dedicated staff, who encouraged her and supported her with respect and patience. To this day, a retired day habilitation staff member remains in touch and meets up with my sister and me when I am in town.

My sister lived at home with my parents until my father passed away and my mother was diagnosed with cancer. The Arc then assisted us in finding a residential placement. Before she died, my mother found great peace of mind knowing my sister would be living in a safe and supportive environment.

For the past 20 years, my sister has lived in a group home where she receives total care from direct support professionals. They provide meals, assist with such basic daily tasks as bathing and dressing, and provide transportation to doctor’s appointments. She also receives occupational therapy and physical therapy from The Arc. And the staff supports me by keeping me informed, helping me connect with my sister several times a week on FaceTime, and facilitating my in-person visits.

I cannot say enough about the dedication and hard work of the direct support professionals who have made such a difference in my sister’s life. At no time was this more apparent than during the COVID pandemic. When residents at my sister’s group home all came down with COVID, staff continued to show up every day to support and nurture the residents. Due to their wonderful care, all the residents recovered.

Without services and support from The Arc, my sister would have had a far more isolated life and fewer opportunities to develop her full potential. Instead, she is happy and sociable and “living her best life.” She loves her home and family at The Arc.

How To Help

Currently, chapters of The Arc and other nonprofit organizations that support people with IDD nationwide are experiencing a funding crisis. The amount that Medicaid reimburses these groups to pay dedicated direct support professionals is too low and not a livable wage. We need members of Congress, state legislatures, and governors to invest more resources in the essential services provided by The Arc and other nonprofits that support people with IDD and their families.

You can help by sending letters to your members of Congress and supporting your state chapter’s advocacy efforts.

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Landmark Trial Challenging Regressive Voting Rights Provisions in Texas Senate Bill 1 Concludes

Plaintiffs argue state law discriminates against voters of color and voters with disabilities, threatening democratic foundations.

San Antonio, TX – A six-week trial challenging regressive voting rights provisions in Texas’ Senate Bill 1 (S.B. 1) concluded with closing arguments today in the U.S. District Court for the Western District of Texas. The lawsuit asserts that S.B. 1 violates the First, Fourteenth, and Fifteenth Amendments of the U.S. Constitution and Section 2 of the Voting Rights Act by targeting and making more difficult the methods and means of voting used by voters of color. Plaintiffs also argue the law violates the Americans with Disabilities Act, Section 504 of the Rehabilitation Act of 1973, and Section 208 of the Voting Rights Act by imposing voting barriers that discriminate against voters with disabilities and deny people with disabilities full and equal opportunities to participate in the state’s voting programs.

The case is comprised of five lawsuits, including Houston Area Urban League v. Abbott, which was filed in 2021 by the Legal Defense Fund (LDF), Reed Smith LLP, ArentFox Schiff, and The Arc on behalf of the Houston Area Urban League (HAUL), Delta Sigma Theta Sorority, Inc., The Arc of Texas, and Jeffrey Lamar Clemmons, a poll worker.

Plaintiffs are challenging several provisions within the restrictive law including: a ban on drive-thru voting; restrictions on early voting hours, which impose a ban on 24-hour voting; and new ID requirements for voting by mail. S.B. 1 also establishes new requirements—and possible criminal penalties—for people who assist voters who need help filling out their ballots, including voters with disabilities.

The timing of a decision from Judge Xavier Rodriguez is pending.

“True democracy does not tolerate barriers that make it harder for citizens to vote based on race or ability, but rather it encourages voting and political participation because diversity of thought, ability, and background makes us stronger,” said Amir Badat, Special Counsel, Legal Defense Fund. “S.B. 1 runs counter to the sentiment of participation and democracy.”

“We are not just in a legal battle; we’re fighting for the very heart of our democracy,” said Elsie Cooke-Holmes, International President of Delta Sigma Theta Sorority, Inc. “S.B. 1 is a calculated assault on our foundational values. We remain steadfast in combating these discriminatory practices to guarantee every citizen’s unimpeded access to the ballot box, ensuring their vote is cast and counted.”

“Democracy works when elections are accessible to all eligible voters,” said Kenneth Broughton, Partner, Reed Smith LLP. “This legislation prevents, inhibits, and discourages eligible voters from casting their ballots in violation of the Voting Rights Act and the United States Constitution.”

“We are proud to stand with our clients Houston Area Urban League, Delta Sigma Theta, The Arc of Texas, and Jeffrey Clemmons, to protect the rights of all Texans—no matter their race, their language, or whether or not they identify as having disability—to meaningfully participate in the political process,” said J. Michael Showalter, Partner, ArentFox Schiff.

“S.B. 1 poses a Catch-22 for disabled voters, because it makes both in-person voting and voting by mail more burdensome and inaccessible,” said Shira Wakschlag, Senior Director of Legal Advocacy & General Counsel, The Arc of the United States. “Throughout trial, we have heard from voters with disabilities about how S.B. 1 raises the cost of voting and forces voters with disabilities to rely on burdensome workarounds that require them to expend significant additional time, subject themselves to physical pain and mental stress, experience multiple ballot rejections, and work twice as hard as non-disabled voters in order to participate in the voting process and have their vote counted, making them feel like second-class citizens. This is not the equal opportunity the ADA was enacted to provide and cannot possibly be consistent with the ADA’s clear and comprehensive mandate to eliminate discrimination against people with disabilities and integrate them into the mainstream of American life.”

“In 2020, we saw bigger turnout numbers in Harris County than ever before. Not only can we boast that we have the most diverse county in the nation, but we are also civically engaged,” said Judson Robinson III, President & CEO of the Houston Area Urban League. “We see S.B. 1 as a tool being used to completely disrupt diverse voter engagement and participation here in Houston. Additionally, S.B. 1 makes it nearly impossible for hourly workers to participate in our elections. We believe now, and always, that shift workers deserve their right to vote just like everyone else.”


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Texas Voters With Disabilities Share their Stories

The following blog post was originally published on the Legal Defense Fund’s website and is reposted here with permission. View the original blog here.

In San Antonio, Texas, community members and advocates gathered outside of the federal courthouse on October 2, 2023 with emblazoned signs in hand, shouting spirited chants. As a trial was underway inside, echoes of their rallying calls for voting rights reverberated through the city streets. Candace Wicks, a retired teacher who traveled 300 miles from Dallas to show her support, shared her story to the burgeoning crowd with a mixture of frustration and determination. Wicks, a Texas native who has disabilities, has remained unwavering in her commitment to voting her entire life—yet since the state’s restrictive voting law S.B. 1 was passed in 2021, she has faced significant barriers participating in the electoral process.

In last year’s midterm elections, Wicks encountered an array of obstacles in attempting to exercise her right to vote. Wicks, whose legs and nine fingers are amputated and does not have a consistent signature, had her ballot denied because of a new signature verification process that S.B. 1 requires. Wicks also cited the law’s curbside voting restrictions and additional, limiting requirements on voter assistance as detrimental requirements for disabled voters.

“People with disabilities already face numerous barriers and discrimination in their daily lives,” Wicks emphasized in her speech. “Voting should not be added to that list. Our democracy is only strong when it represents all its citizens.”

Wicks is a member of Delta Sigma Theta Sorority Inc., a historically Black service-based sorority that is named a co-plaintiff in the lawsuit challenging the voter suppression law. Lupe v. Abbott, composed of five lawsuits including Houston Area Urban League v. Abbott, argues that S.B. 1 is discriminatory, imposing undue barriers on voters to participate in elections, especially voters of color and voters with disabilities.

Plaintiffs including the Delta Sigma Theta Sorority Inc., Houston Area Urban League, and The Arc of Texas argue that S.B. 1 violates the United States Constitution and Section 2 of the Voting Rights Act by targeting and burdening methods and means of voting, like drive-thru voting and 24-hour voting, that are largely used by voters of color. Plaintiffs also argue the law violates the Americans with Disabilities Act, Section 504 of the Rehabilitation Act of 1973, and Section 208 of the Voting Rights Act by inflicting barriers to voting on voters with disabilities by imposing restrictions on voter assistance and making it harder to vote by mail, denying them full and equal opportunities to participate in the state’s voting processes.

The six-week trial began on Sept. 11. In that time, witnesses took the stand to provide testimony about their own experiences attempting to access the ballot box. Since being enacted in 2021, the law has already had grave consequences, rendering many residents unable to vote and making the process of voting far more onerous and burdensome, resulting in significantly longer voting times and physical pain for some voters with disabilities. Some who attempted to vote had their ballots denied.

For the several millions of Texans the law’s provisions impacts, including an estimated 3-5 million voting-eligible Texans with disabilities, the reversal of this legislation is dire for our nation’s democracy. All Texas voters, regardless of their identities or backgrounds, deserve to be counted—and their voices heard.

“People with disabilities already face numerous barriers and discrimination in their daily lives. Voting should not be added to that list. Our democracy is only strong when it represents all its citizens.” – Candace Wicks, Retired Dallas Teacher and Delta Sigma Theta Sorority, Inc. Member


Leading a Fight Against Voter Suppression in Texas

In the fight for an inclusive democracy in Texas, civil rights organizations are working together to fight S.B. 1 and bring forth justice.

“Our challenge to S.B. 1 highlights that voter suppression is a disability rights issue and that the fight against voter suppression lies at the intersection of disability rights and racial justice,” said Amir Badat, LDF Voting Special Counsel, who manages LDF’s Voting Rights Defender and Prepared to Vote projects. “There are millions of Texans who have a disability. Voters with disabilities are entitled to equal access to the ballot box. S.B. 1 undermines that right by increasing the already significant burdens that voters with disabilities must overcome to cast their votes and have them counted. By bringing this case, our plaintiffs who have disabilities are telling the world that their voices matter and must be heard.”

The lawsuit challenges multiple provisions in S.B. 1 that, by imposing undue limitations on voting, disproportionately impact voters of color and voters with disabilities.

Voting restrictions imposed by S.B. 1 include:

  • Limitations on early voting hours.
  • A ban on 24-hour voting.
  • A ban on drive-thru voting.
  • Limitations on the distribution of mail-in ballot applications.
  • Limitations and possible penalties for voter assistants, including criminal felonies.
  • Expansion of the authority of partisan poll watchers.
  • Criminal penalties against poll workers seeking to maintain order at the polling place.

“There are millions of Texans who have a disability. Voters with disabilities are entitled to equal access to the ballot box. By bringing this case, our plaintiffs who have disabilities are telling the world that their voices matter and must be heard.” – Amir Badat, LDF Voting Rights Special Counsel and Voting Rights Defender and Prepared to Vote Projects Manager

While the Texas state legislature makes claims of voter fraud, a myth long debunked by experts and advocates alike, the passage of the law is antithetical to true integrity and democracy—placing significant hardship on voters who have historically been counted out.

Texas is one of at least 18 other states that have passed voter suppression laws in direct response to voters from marginalized communities, including voters of color and voters with disabilities, making their voices heard in record numbers during the 2020 elections. Within Texas’s long history of voter suppression is a painful reality—the intentional suppression, prevention, and displacement of minority votes.

“People with disabilities have the fundamental right to vote and participate in our democracy, but this right has too often been denied,” said Shira Wakschlag, Senior Director of Legal Advocacy and General Counsel for The Arc of the United States. “S.B. 1 disenfranchises voters with disabilities by making it harder to vote by mail and receive the assistance they need to vote, and it denies people with disabilities equal access to voting in violation of the law.”

Voting Rights Is a Disability Rights Issue

Texas Voters With Disabilities Share Their Stories

Four voters with disabilities who served as witnesses in the trial discussed how S.B. 1 impacted their ability to vote, and what they hope to see from the state’s voting policies moving forward.

Some quotes have been condensed for clarity.

TERI SALTZMAN, Travis County resident and member of The Arc of Texas and REVUP Texas

Teri SaltzmanTeri Saltzman is blind and faced a myriad of barriers to voting by mail in the midterm primary elections. Her mail ballot was rejected multiple times because the ID numbers she provided didn’t match her voter registration record. She could not cure her ballot online because the state’s website is inaccessible to blind voters. After four attempts at curing her ballot, she was notified that her ballot did not count. Saltzman’s ballot was again denied in November 2022.

“I registered to vote by mail based on my disability and I have always done this successfully in the past. When S.B. 1 passed, it was the first time in my life I had difficulty voting due to its ID requirements and burdens. I never had this amount of challenges voting. I was never unsure if my vote counted.

“S.B. 1 has meant a reversal of rights for this community. Disability rights has everything to do with voting rights. What they’re voting for—transportation, education, housing, all those things—are linked to their independence as a person with a disability. I will always vote. But when I look at the ballot [sitting here on my table], I look at it with trepidation. [Voting] is something that I love…it’s something that is important in my family. But now, after a whole year of fighting to exercise my right to vote, I have this hesitancy that I never had before. I’m mad that it is there. But I will still vote. I’m concerned about voters who are already hesitant—who if they come across these barriers, might be prevented from doing so at all.”

JODI LYDIA NUNEZ LANDRY, Harris County resident and member of The Arc of Texas and REVUP Texas

Lydia Nunez LandryJodi Lydia Nunez Landry has muscular dystrophy and has encountered significant barriers since S.B. 1 was enacted. Landry prefers to vote in person but is afraid to get voting assistance from her partner due to risk of criminal prosecution S.B. 1 has imposed on voter assistance. She explains that her disability is degenerative and that as a result, she will require even more assistance over time.

“I think voting is fundamental to our democracy. The people that we elect are the ones that hold the power and represent us and make policies that affect our entire lives. [Elected officials determine] whether disabled people can vote, get out of their homes or have employment and educational opportunities, whether people are institutionalized or whether they’re able to enjoy basic human rights.

“S.B. 1 has had a very profoundly negative impact on our community. My condition has progressed, and I’ve increasingly run into more obstacles [since S.B. 1 was enacted]. I completely rely on my partner, who is also my personal attendant, to assist me with things.

“I think it really boils down to whether people believe that disabled people or any people from marginalized groups are deserving of the full benefits of democracy. We’re all interconnected. Disabled people come from every walk of life. And I think that’s the beauty of, at least, the promise of democracy—we all get to enjoy the same basic human rights and privileges as everyone else.”

LAURA HALVORSON, Bexar County resident and member of The Arc of Texas and REVUP Texas

Laura HalversonLaura Halvorson has muscular dystrophy and chronic neuromuscular respiratory failure. Halvorson relies on a power machine, a breathing machine, and personal care attendants for a majority of her care. Halvorson has encountered significant barriers to voting since S.B. 1 was enacted. Unlike previous years, Halvorson could not get assistance to vote by mail. Her personal care attendant, who is a green card holder, was not willing to assist Halvorson with her mail ballot during the March 2022 primary due to the threat of criminal liability and the potential impact on her legal status. As a result, Halvorson had no choice but to open and mark the ballot herself—a process which took her multiple attempts and was significantly longer and more arduous than if she had been assisted. As a result of these challenges, Halvorson chose to vote in person in the November 2022 election — a process which again took her significantly longer and was far more difficult because she did not receive any assistance.

“This new voting law makes it even harder for people to vote and [is] a huge act of voter suppression in a state with already one of lowest voter turnouts in the country. Once S.B. 1 was enacted and I experienced new barriers in voting, I felt it was important to share my story.

“I hope voting becomes easier and more accessible for people with disabilities in Texas, but I do not see how that could be possible with S.B. 1 still in place.

“It is important for people with disabilities and others in our lives to let our voices and issues be heard by politicians and reflected in their platforms to show the power of the disability vote. About one in four Americans has a disability, and many acquire a disability through the aging process and now also through long Covid, so disability issues affect many people and/or their loved ones in the voting process and access.”

JENNIFER MILLER, Travis County resident and member of The Arc of Texas

Jennifer Miller is the mother of an adult daughter, Danielle, who has autism. Miller regularly assists her daughter to vote, yet has encountered significant barriers in doing so since S.B. 1 was enacted.

“I care very much about this country as a long-time resident of Texas, and I care very much about my daughter. She has learned civic responsibility, and as a person with a disability, voting really makes a difference for her and her community. As a supportive parent, I want to let my daughter have the best life she can and be independent. One of those factors is her being able to exercise her right to vote.

“Voting is a constitutional right. If [S.B. 1] continues, a lot of people might give up and not vote. And that’s not right, because their voices need to be heard. Voting is everything to marginalized communities. The [Americans with Disabilities Act] isn’t that old, and we’re still fighting for rights.”

Being Heard, Being Counted: Making Democracy Inclusive for All

Closing arguments in the trial will be heard in February 2024. As voters await the trial’s results, one thing is certain — every voter has a voice that should be heard through the electoral process, and all people, regardless of their identity or background, are entitled to fully participate in our nation’s democracy. Texas’s electoral process should be accessible to all. A true democracy should be more than an ideal—it should be fully enforced through protections for all voters, including those who have historically had their ballots left out.

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Why Black Disabled History Matters

The following blog post was originally published on the World Institute on Disability’s website and is reposted here with permission. View the original blog here.

By Dikko Yusuf

Black disabled history is an aspect of Black history, which informs world history. Black History Month is officially celebrated every year in the U.S., Canada, Ireland, and the UK. During this month, we celebrate the achievements of Black leaders throughout history and while many of these leaders also had a disability, that aspect is often minimized or overlooked. Black disabled people are multiply-marginalized, and more prominent awareness of the accomplishments of Black leaders, who are often also disabled, can help drive and inform systems change for the current and future generations of disabled people around the world.

Black Disabled Leaders in History

Disability has often been erased from the stories of many Black historical figures. Disabled activists Vilissa Thompson, Heather Watkins, and Ola Ojewumi all highlight how their exposure to Black history in school failed to account for the disabilities of Black civil rights leaders.

Abolitionist Harriet Tubman and pianist and composer Thomas Wiggins are good examples to consider here. Tubman had epileptic seizures since she was 12, and is remembered for leading enslaved Black people through underground passageways to freedom. Wiggins was born blind and is celebrated for being the first Black person to perform at the White House.

A historical account that recognizes Tubman’s disability is more likely to examine how her disability influenced how or when she did certain things. When we recognize Wiggins’ disability, his story becomes more than a musician’s biography; it becomes the history of disabled musicians.  Without an acknowledgment of their disabilities, their stories are incomplete.

Throughout history, many other Black disabled people helped to secure rights and representation for people with disabilities.

Fannie Lou Hamer was a leader in the Civil Rights Movement and the vice-chair of the Freedom Democratic Party. Johnnie Lacy helped found the Berkeley Center for Independent Living in 1981. She also served on Hayward’s Commission on Personnel and Affirmative Action, and the Mayor’s Disability Council for the city and county of San Francisco. Both Lacy and Hamer had polio and made an indelible mark for Black women and disabled people’s rights in the U.S.

Brad Lomax was yet another Black disabled leader who made history. Lomax was a member of the Black Panther Party and had multiple sclerosis and used a wheelchair. In 1977, he participated in the historic 504 Sit-ins at the San Francisco Federal Building and encouraged the Black Panthers to provide meals and other supplies to the protestors. The 504 Sit-ins achieved its objective on April 28, 1977, when the secretary of the Department of Health, Education and Welfare (HEW), Joseph A. Califano Jr., signed the regulations  to implement Section 504 of the Rehabilitation Act of 1973.

Joyce Jackson, who contracted arthritis at the age of 12, was also a civil rights activist. She was among 20 other activists that went to Washington D.C. to make a case to officials in the Carter administration for the implementation of Section 504 By the HEW.

Audre Lorde was a Black lesbian writer with breast cancer and civil and disability rights activist. Her powerful and evocative poetry broadly drew from her identity which included the intersections of racism, sexism, classism, ableism, and homophobia.

Lois Curtis was a disability rights advocate who grew up with cognitive and developmental disabilities and spent nearly 20 years in institutions, at different points in her life. The landmark Supreme Court ruling on her case, Olmstead v. L.C., that institutionalizing people with disabilities was discriminatory, was a monumental and watershed moment in the Independent Living Movement.

Black disabled leaders such as Fannie Lou Hamer, Brad Lomax, Joyce Jackson, Audre Lorde, Lois Curtis, Johnnie Lacy and many more championed civil rights and fought hard against ableism and racism. Black disabled history adds a comprehensive component to the way we interpret historical figures and events. It gives us a richer and clearer perspective on important moments today and throughout history.

As Florida Governor Ron DeSantis recently  blocked a Black studies course for high-achieving high schoolers and other conservative politicians push to block Black history from being taught in schools, we must make a concerted effort to make sure these stories are told. Black history acknowledges the experiences of oppression and marginalization faced by Black people and the systemic racism that Black people continue to face globally. When Black history is hidden, systemic racism continues to be denied by members of the next generation of leaders and decision-makers, and through that denial, the systems remain in place.

Black disabled history represents the experiences of multiply-marginalized individuals confronted by racism and ableism. During disasters and emergencies, for instance, Black disabled people, who often live in resource-deprived areas, experience worse outcomes in relation to white disabled people. They are also disproportionately impacted because their disability needs are not considered in disaster preparedness, response, and recovery. Apart from the oppressive racism faced by Black people, Black disabled people also have to contend with the ableism that limits their ability to access opportunities and resources. Additionally, Black disabled people face discrimination and violence through systems of policing. The limited data we have on the topic shows that more than 50% of Black disabled people will be arrested by the time they turn 28, and at least 50% of people killed by police are disabled. Many of the high-profile cases of Black people killed by police were significantly impacted by the victims’ disabilities, but very little media coverage acknowledges the impact of the combination of racism and ableism on these cases. Black people with disabilities also have to live with the fear of being further marginalized by disclosing their disabled identities.

“Black people may be hesitant to identify as disabled for fear of further discrimination based on that identity,” Ojewumi said.

This fear of discrimination also drives some Black people to hide their disabilities and code-switch or alter their language to sound less Black, around white peers. When we have Black disabled stories told in the mainstream media, we are able to create diverse and inclusive societies that recognize the experiences of a group that is often overlooked. When these stories are told, we are able to examine the intersectionality and sociopolitical ramifications of being Black and disabled.

Beyond Black History Month

Discussions about the achievements of Black disabled leaders should be held all year round, not just during Black History Month. Furthermore, it is important to not just celebrate Black disabled history, but to also work to create a society that is inclusive of Black disabled people. The disability justice framework is a great place to start. The disability justice framework recognizes the intersectionality of disabled people who belong to additional marginalized communities and is a necessary ideology to achieve the liberation of Black disabled people. When we acknowledge Black disabled history, we can create a better future for Black disabled people of today and tomorrow. Black disabled history is world history.

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

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

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

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@thearc.org or 202-534-3712

Jackie Dilworth, Director of Communications
dilworth@thearc.org 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 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.

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

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

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.