A man with WAGR syndrome sits at a table in a restaurant. He is hugging and being hugged by another man and a young boy.

Spotlighting The Arc’s Changemakers: Burt Hudson, Treasurer of the Board of Directors

/in , /by The Arc

Burt and John, a man with WAGR syndrome, stand together with their arms around each other.Family is at the heart of Burt Hudson’s connection to The Arc.

Burt’s younger brother John, who he introduces as “my best friend for as long as I’ve been alive,” has an intellectual and developmental disability called WAGR syndrome. His love for John is boundless, but as a teenager, Burt was mad at the world for giving John a more difficult path, including a near-death experience. But John always brought Burt’s life back into focus because he was his rock. As he shares, “I am the man I am today in many ways because of my brother.”

Burt’s life came full circle when he and his wife Kim welcomed their first child, Jack.

Despite genetic testing showing the absence of trisomy during pregnancy, Burt and Kim were surprised to learn that their “beautiful little guy” had Down syndrome at birth. As Burt reflects, “The night Jack was born, I said to my wife, ‘Without my brother in my life, I would have never become the man you would have married.’” Burt and Kim didn’t hesitate about the road ahead because “There is no playbook for anyone… If you love your child as much as you can today, tomorrow will get figured out. And just like my brother, we’ll watch Jack change the world for the better.”

Burt and his newborn son sitting in a reclining chair, sleeping together while a dog looks at the baby.Jack is now 9 years old and—despite a speech delay from childhood apraxia of speech—he is a complex, smart, and kind third grader. He loves riding horses, dancing to Bruno Mars and Maroon 5, drumming, and acting out Muppets movies. He also has a 6-year-old younger brother, James, and “They have been a duo ever since James was born.” Burt recalls a memory from his childhood when he and his brother were wrestling in the ocean, showing John was just another sibling. The same camaraderie is seen between Jack and James.

Burt’s mom has “always strived to make sure John can live an independent life.” That’s why she has long been involved in advocacy efforts with The Arc’s chapters in Georgia, where Burt grew up and John now lives in an inclusive group home not far from his parents and brother. As Burt shares, “he’s very proud to be a man on his own.”

It wasn’t until his adulthood, though, that Burt’s mom asked him to participate in a plane pull fundraiser for her chapter of The Arc. Burt eagerly flew to Georgia to pitch in. He hit it off with the Executive Director, who fatefully connected him to The Arc of Virginia, where he has served on the Board for 13 years and still going strong. After Jack’s birth, he became even more passionate about his role as a volunteer. “In the midst of the exhaustion, I decided I had to do more for The Arc. So, I went on to The Arc of the United States’ website and saw an application for joining the Budget and Finance Committee. Over the years, I got to know several staff and board members and was asked to join the Board.”Two young boys, one with Down syndrome, wear warm, winter jackets, and are sitting together outside.

Burt’s career has also been influenced by John and Jack. He is COO of LeadingAge, a community of service providers for older adults and people with disabilities. “As a compassionate society, we must take care of others. I’ve never known anything different.”

What continues to drive Burt’s involvement in The Arc is gratitude for the progress made for people with disabilities. He shares, “It is gut-wrenching what our society has done to people with disabilities historically, and it’s frightening to ever try to picture my brother or my son living in those kinds of conditions. I don’t know how people started to right those wrongs, but I know The Arc was at the forefront of it. So, I give back to The Arc in any way I can because it’s done so much for people like my brother and my son. The best part is that the people we serve are sitting next to me at the table. The Arc is led by people with disabilities and caregivers, which I find unique and special. I’ve met a lot of people through The Arc and the ones who make the biggest impact on me are those who have disabilities. These are the people who tell me how I can help The Arc. When my son was born and I had my own health challenges, these same people supported me. All these people had the Hudsons’ back and I’ll continue to have theirs.”

A man with WAGR syndrome sits at a table in a restaurant. He is hugging and being hugged by another man and a young boy.Burt wants people with disabilities and their loved ones to know they can always turn to The Arc for guidance. “The Arc is a wonderful resource full of wonderful people, one that generations of families have relied on to find the path they need to be walking.” As Treasurer of our national Board, Burt is heartened to see The Arc remain strong through the decades. “There’s a lack of compassion and a lack of love all around us, and The Arc is the heart of this country. It shows the strength we have when we’re banded together with a common cause and love for each other. The consistent light The Arc has provided gives me comfort and hope that we’ll get through anything.”

Thanks to The Arc and its advocates, it’s easy to imagine a bright future for Jack. Burt shares, “My hope for both my kids is to find the best happy path for their lives. I want Jack to live a full and independent life just like my brother John.”

He sums up, “I volunteer as a thank you to the entire federation of The Arc. I don’t think there’s a way to appropriately thank everyone for what they’ve done for my brother and my son. There’s no way to say thank you enough, but I’ll keep volunteering my time until I figure it out.”

A black and white photo of Lois Curtis, a Black woman with disabilities. The image is up close of just her face, smiling broadly.

Celebrating 25 Years of the Olmstead Decision

/in /by The Arc

June 22 marks the 25th anniversary of the U.S. Supreme Court’s decision in Olmstead v. L.C.,  a landmark case that opened the door for millions of people with disabilities to live in the community.

What was the Olmstead case about?

The Olmstead case involved two women from Georgia, Lois Curtis (the L.C. in the case name) and Elaine Wilson, who both had diagnoses of intellectual disability and mental health conditions. Lois and Elaine were forced into the state’s mental health hospitals many times, despite wanting to remain at home with the help of community-based services. Doctors agreed that Lois and Elaine were capable of living in the community, with appropriate support. However, the state took years to set up their services.

The Atlanta Legal Aid Society filed a lawsuit on behalf of Lois and later added Elaine to the case. Tommy Olmstead, Commissioner of the Georgia Department of Human Resources, was the defendant.  The case was grounded in the Americans with Disabilities Act (ADA) and whether people with disabilities could decide where they could receive services and supports.

The Supreme Court issued a requirement that states had to eliminate unnecessary segregation of persons with disabilities and to ensure that persons with disabilities receive services in the most integrated setting appropriate to their needs.

What was The Arc’s role?

A woman in a floral bathing suit lays in a beach chair by the pool, smiling

Lois Curtis

Following the enactment of the ADA in 1990, the federal courts heard cases about the meaning and requirements of the new law. As these cases began to come before the Supreme Court, organizations like The Arc, which played key roles in the passage of the ADA, worked together to coordinate and file amicus curiae (‘friend of the court’) briefs.  The Arc participated in a brief in the Olmstead case, supporting Lois Curtis and Elaine Wilson. The brief explained the importance of the assumption that people with disabilities have the right to live in the community rather than only living in segregated settings.

In addition, many state chapters of The Arc worked with their state’s Attorney General to ensure that they did not join an amicus brief in support of Georgia’s/Olmstead’s position in the case. The significant lack of support for the Georgia brief made an impact since, at that time, states would normally have supported another state’s position. This kind of defensive work may not often make the headlines, but these critical, behind-the-scenes efforts from chapters of The Arc had a huge impact on the case.

What was the Supreme Court’s decision in Olmstead?

This was a landmark decision for the rights of people with disabilities to be a part of their communities, on their terms.

The Supreme Court held that the ADA prohibits unjustified segregation of people with disabilities and that states must provide community-based services to people with disabilities when: such services are appropriate; the individuals do not oppose such services; and community-based services can be reasonably accommodated, considering governmental resources and the needs of others receiving disability services.

 For other important findings in the decision, the Department of Justice (DOJ) has a statement and technical assistance guide on the ADA’s Integration Mandate and the Olmstead decision.

What is the impact of the decision?

The Olmstead decision paved the way for generations of people with disabilities to live full lives in the community. Here are several impacts to highlight:

  • Many states developed an Olmstead State Plan to show that they had a path forward that led to more support in the community for people with disabilities and a plan for complying with the decision.
  • An approved state Medicaid plan does not absolve the state of failure to meet its obligations under Olmstead and the ADA or indicate that the state has devoted sufficient resources to achieve compliance.
  • Individuals can file Olmstead and ADA claims to enforce their right to live in the community.
  • People living in the community who are “at risk” of institutionalization are covered by the ADA and Olmstead
  • The integration mandate extends not only to residential settings but other contexts impacting the lives of people with disabilities, including employment, education, and more.

Why does the Olmstead case still matter today?

The Olmstead decision is not just a historical event for celebration. It is a living roadmap to help ensure that people with disabilities, including intellectual and developmental disabilities (IDD) receive the support they need and opportunities to live, work, and learn in the setting of their choosing.

Our nation has not yet achieved full implementation of the national goals set forth in the ADA: equality of opportunity, full participation, independent living, and economic self-sufficiency. The Arc continues to work to improve outcomes and advocate for the resources needed to build community infrastructure and a workforce to support people with IDD. The Olmstead decision is a vital tool to create a better life for people with IDD and other disabilities.

The Arc logo

25 Patient and Provider Groups Applaud Supreme Court Ruling, but Express Concern About Other Plaintiffs Keeping FDA Authority Challenge Alive

/in /by The Arc

Washington, DC – Our 25 organizations, representing patients with serious health conditions and disabilities and their providers, applaud the Supreme Court’s unanimous ruling reversing the Fifth Circuit’s decision in Alliance for Hippocratic Medicine et al. v FDA et al, on the grounds that the plaintiffs don’t have standing in their challenge concerning the use and availability of Mifepristone, a drug prescribed for the treatment of a variety of life-threatening conditions, including cancer. We remain concerned that different plaintiffs will continue to pursue dangerous and unfounded arguments that undermine the Food and Drug Administration’s (FDA) decisions about drug safety. Today’s ruling allows the possibility that others will continue pursuing the challenge to the FDA’s decisions regarding Mifepristone and that future litigants will seek to block or limit access to other FDA-approved drugs and treatments for reasons unrelated to safety and efficacy, as warned in our amicus brief.

Generations of Americans have trusted the FDA’s expertise, which, over time, has yielded rigorous, science- and evidence-based approval of tens of thousands of lifesaving and life-changing medications and devices for people with serious health conditions. FDA experts are best equipped to determine the safety and efficacy of medications and their conditions of use, and it is dangerous to eviscerate or dilute their authority.

We unequivocally support the FDA’s role in safeguarding patients and urge the Department of Justice to continue rigorously defending that authority.

The Leukemia & Lymphoma Society
The ALS Association
American Cancer Society
American Cancer Society Cancer Action Network
Academy of Managed Care Pharmacy
American Society of Clinical Oncology
American Society of Hematology
The Arc
Arthritis Foundation
Association for Clinical Oncology
CancerCare
Council of Medical Specialty Societies
Crohn’s & Colitis Foundation
Cystic Fibrosis Foundation
Epilepsy Foundation
Friends of Cancer Research
HealthyWomen
Hemophilia Federation of America
Lupus Foundation of America
Muscular Dystrophy Association
National Alliance on Mental Illness (NAMI)
National Multiple Sclerosis Society
National Organization for Rare Disorders
National Patient Advocate Foundation
RESOLVE: The National Infertility Association

Father with a visible disability smiles outside with his family on fathers day.

A Father’s Love Knows No Limits

/in , /by The Arc

A man with disabilities is in a wheelchair. Next to him are his wife and young adult children. They are standing outside and smiling.This Father’s Day, we’re celebrating Mike, a dad whose unconditional love and devotion are redefining society’s views on parenthood. Born with cerebral palsy, Mike has navigated life from a wheelchair, facing prejudices that often wrongly question the ability of those with disabilities to raise children.

Mike is the proud dad to four children, ages 16, 14, 12, and 10. “I always had a desire to be married and have four children,” Mike shares. That dream was nearly derailed by a devastating miscarriage early in his marriage to wife Amanda. “We wondered if we were ever going to be parents again. Then, 11 months later, it happened! My wife became pregnant with our son. We were beyond excited, but scared. On our 3rd wedding anniversary, Titus was born.” Over the next seven years, they welcomed another son and two daughters into their loving family. For Mike, fatherhood has been the ultimate blessing and responsibility. “The best part is having your child look at you with a big smile and say, ‘I love you,'” he beams. He cherishes witnessing each childhood milestone, like their first bike ride without training wheels. Parenthood has taught him that it’s “the most rewarding and challenging responsibility God will give you.”

As a dad with a disability, Mike has pioneered unique parenting approaches to nurture his kids’ development. “I am unable to physically model many things, so I have to be very thorough with instructions,” he explains. He’s also had to adapt to a largely inaccessible world, amplifying creative problem-solving and finding “unconventional ways” to impart life skills.

Adaptations like an integrated home intercom system have enhanced communication across their household. His inability to drive often causes logistical hurdles in getting his busy family where they need to be. “Sometimes this limits how many activities our children can be involved in,” Mike adds.

His disability has no impact on his ability to empower his children’s pursuit of interests and passions, from sports to church activities. He also teaches life skills and moral values to youth as a deacon and youth counselor at his church and a coach for Junior Church. His ultimate advice to other parents with disabilities? “God chose you to raise this child – you can do it! Keep working at it and don’t give up.” His oldest is already planning for his future, with his sights set on graphics design or counseling.

Of course, busting stigmas has been part of the journey, too. “People assume because we have a disability, we cannot be parents,” Mike shares. He’s not alone—many people with disabilities struggle with the perception that they are or would be inadequate parents. But Mike and other parents with disabilities know that their kids benefit immensely from the experience, including learning resilience, innovation, self-advocacy, and compassion for others.

Mike’s fatherhood story reminds us that a disabled parent’s devotion and competence knows no limits. This Father’s Day, we honor dads with disabilities and those who want to become parents—because people with disabilities have the same dreams as everyone else. As Mike puts it, “Our approach may be different, but the desire is the same.”

 

Red, white, and blue stickers that say "I Voted."

This Election Year, Know Your Voting Rights!

/in /by The Arc

Voting is an essential part of our democracy and our right as citizens.

Too often, people with disabilities struggle to be able to vote.

Here are some (but not all) of the reasons that people may struggle:

  • Polling places may not have accessible entrances, spaces, machines, or ballots.
  • Poll workers and election officials may not have had adequate training on how to support or communicate with people with disabilities, especially voters who also are members of other groups that have been treated unfairly in the past.
  • Poll workers may assume a person cannot vote because they have a disability or are under guardianship.
  • Voter suppression laws may have restricted the ways that voters with disabilities can receive assistance in voting or made it harder to vote by mail.

People with disabilities who have guardians face barriers to voting that are out of line with federal law.

Nationwide, thousands of people with disabilities have guardians.

Guardianship occurs when a court determines a person is unable to make some or all of their own decisions. They appoint a guardian to make certain decisions for the person.

Right now, some states have passed laws that ban people with guardians from voting or make people work harder to show that they can vote.

And many people believe or have heard wrong information from poll workers, family members, or direct care workers that people with disabilities cannot vote if they have a guardian.

Recently, the U.S. Department of Justice (DOJ) clarified voting rights for everyone and said people who have guardians can vote.

Specifically, the DOJ shared states cannot:

  • Ban people from voting or registering to vote just because they have a guardian or conservator.
  • Make rules that make voters work harder to show they are eligible to vote, like through petitioning the court to vote or taking a competency test.
  • Ban voters with disabilities from receiving the help they need to vote.

The DOJ also shared more about the help voters can get throughout the voting process.

  • Voters can get help requesting, completing, or returning a ballot.
  • They can get help when they vote in person, absentee, or by mail-in ballot.
  • They must be able to get help from someone they choose – not just from an election worker.
  • Voters with disabilities who need help putting their ballot in a mailbox or drop box must be able to get help from someone they choose.

What Can I Do?

  • Know your voting rights and make sure that you are ready to vote. Visit thearc.org/vote to learn more.
  • Speak with your guardian or the person you act as guardian for (if you have one) about this news and how it impacts you. Learn more about voting rights under guardianship.
  • Share this news with others. Everyone should know what the right rules are.
  • Speak up if your rights are denied or if you see someone else’s rights denied! Contact your local protection and advocacy organization. They provide legal aid to people with disabilities. They can help you make a complaint to your election office or figure out your next steps.

 

A group of people in front of the Capitol in Washington, DC. They are all wearing orange T-shirts with white letters that say "Disability Rights Are Human Rights."

Tips to Advocate During August Congressional Recess

/in /by The Arc

A group of people in front of the Capitol in Washington, DC. They are all wearing orange T-shirts with white letters that say "Disability Rights Are Human Rights."For some, August can be a time for camping trips, beach days, and other fun summer activities. But for members of Congress, August signals the start of Congressional Recess. During August recess, U.S. senators and representatives leave Washington, DC, and travel to their home states and districts to begin a fast-paced schedule of constituent meetings, town halls, and other community events.

Last year, many of you answered the call to engage with your members of Congress by sharing your stories. We are so grateful to everyone who wrote, called, tweeted, and met with their representatives. Because of you, the concerns of the disability community were heard loudly in the halls of Congress.

With August nearing, it’s time to do what you do best and advocate for disability rights again!

August recess is your moment to provide members of Congress with a glimpse into your life and the issues that matter to you. With your stories echoing in their minds, these decision-makers can return to Washington ready to legislate meaningful change for the disability community.

To continue to build on the impact you have made in years past, we have prepared a few tips to keep in mind as you navigate this August Congressional Recess:

  • Follow us on Facebook, X/Twitter, Instagram, and LinkedIn. Throughout August, we will be sharing actions you can take to advocate with your members of Congress.
  • Visit our Action Center to find a few easy ways to take action. Tell your members of Congress to invest in home and community-based services and to update the Supplemental Security Income program for the first time in over 30 years.
  • Visit your U.S. senators and representatives. You can look them up using our “Find your elected officials” tool. If you met with one of them during a previous August recess, make another appointment and strengthen your connection. And don’t forget to thank them for any past legislative actions that advanced disability rights!
  • Follow your elected officials on social media. Learn what legislation your representatives are currently working on by finding their X/Twitter handles and following them.
  • Connect with your local or state chapter of The Arc. Find your local chapter and reach out to them to learn about any meetings or other activities you can join.
  • Attend town hall events. Many members of Congress host town hall meetings during the August recess to hear from their constituents. Contact your members of Congress or review their websites to see their town hall schedules.

We’re so proud of the way you have shown your commitment to disability rights over the years—now, let’s build on that success! Connect with your representatives and share how their legislative actions (both past and present) affect your family. Your stories and perspective on important disability policy issues can prepare your legislators to fight for disability rights this year and beyond!