A man wearing a dark suit sits in a wheelchair. Behind him is a wall of books.

The ADA’s Promise Must Still Be Realized: A Conversation With Sean Pevsner

For 33 years, the Americans with Disabilities Act (ADA) has protected the civil rights of people with disabilities.

We recently talked to disability rights lawyer Sean Pevsner about why the ADA matters and why there’s still so much to do to see its full promise fulfilled.

A man wearing a dark suit sits in a wheelchair. Behind him is a wall of books.Sean founded a law firm with his best friend, Mark Whitburn. At their firm, Sean works on special education law and practice, guardianship and probate proceedings, and other civil rights cases. He focuses on the ADA, the integration of individuals with developmental disabilities into society, and ensuring that students with disabilities receive the appropriate services under the Individuals with Disabilities Education Act (IDEA).

Sean has cerebral palsy and operates a motorized wheelchair using head movements. Due to his quadriplegia, he cannot write and must rely on an interpreter or a specialized computer to communicate.

People have underestimated Sean since the moment he was born. He was born clinically dead, and an anesthesiologist had to administer CPR for 45 minutes until Sean could breathe on his own. The anesthesiologist likely thought Sean wouldn’t survive, but Sean proved him wrong.

Sean began his schooling just as the IDEA was passed into law. When he wanted to leave the segregated private school to attend mainstream public school, he and his family had to fight to demonstrate that he could thrive there.

When his high school threatened to put him in remedial classes despite his excellent grades, Sean, his family, and Mark fought for his right to attend the same classes as his peers. They fought against teachers who thought he couldn’t handle the workload and administrators who thought he wouldn’t graduate. Despite doubters, Sean graduated from the University of Texas in 1998 with majors in Greek and Latin and, later, from the University of Texas Law School.

In 2011, Sean passed the Texas State Bar. It took him eight days to deliver every answer orally to interpreters. In the end, he was exhausted. At the swearing-in ceremony, Texas Supreme Court Chief Justice Wallace Jefferson specifically acknowledged Sean.

Sean was surprised to learn that the judge’s sister had invited the child of a family friend, a 9-year-old with cerebral palsy. She was seated in the front row so she could see someone like her become a professional advocate. “I did not believe anything could top my passage of the eight-day Texas Bar Exam,” says Sean, “but I was proven wrong.”

Q: What does the ADA mean to you? Why is it important to you in your personal life and your work?

The ADA means that individuals with disabilities have an equal opportunity to live and contribute to their community. It has broken down a lot of barriers to community-based services, such as community attendants, education, and employment. It also helps people with disabilities access many things that people without disabilities take for granted, like the ability to live independently in your community, without worrying about being forced into institutions, accessing education, and finding employment.

As someone with severe cerebral palsy, the ADA has helped me in many ways. My personal life has improved in terms of getting a quality education and becoming a licensed Texas attorney. I have equal access to public accommodations, such as hotels, office buildings, restaurants, and other public establishments. I have equal access to both state governmental and private entities’ programs and activities as well.

Q: In what ways is the ADA falling short 33 years after being passed?

The ADA has fallen short in increasing the employment rate for people with disabilities. While the ADA requires employers to provide effective job accommodations, it has not increased the recruitment and hiring of qualified employees with disabilities.

It also fails to eliminate institutional bias in the U.S.’s long-term care system. Even though the ADA requires state governmental entities to place people with disabilities in the most integrated setting (as the U.S. Supreme Court interpreted it in Olmstead v. LC), institutional bias is still a major issue in our country today.

Congress must pass, and the President must sign, the HCBS Access Act that would end this institutional bias. The HCBS Access Act would eliminate waiting lists for community-based services and increase wages for direct care workers.

Q: What has been the biggest or most important case you have done around the ADA?

I use the ADA to help others with disabilities get funding for community-based services to live in and contribute to society instead of being institutionalized. In Harrison v. Young, my law firm convinced a federal judge that the Texas Health and Human Services Commission (HHSC) violated Title II of the ADA by failing to provide funding to our client with multiple disabilities to live in a community group home. The HHSC attempted to place that person in an institution against their will. My law firm argued that this violated the integration mandate provision in the ADA.

Q: How can others get involved in advocacy to support the implementation of the ADA and disability rights progress?

We should conduct serious disability etiquette training to educate people about the ADA and the importance of including people with disabilities in all aspects of society. Generally, the public is uninformed about disability rights, the tenets of the ADA, and the importance of equality and inclusion of all people with disabilities.

There is also a myth that it is too expensive for the public and businesses to include and accommodate people with disabilities, both online and in person. However, the reality is that any cost is made up in increased employee productivity and access to new customers.

Finally, to achieve true inclusiveness and equality, the disability community must lead by example. We must accept others with different types of disabilities. People with polio or paraplegia must accept people with cerebral palsy, speech impairments, and intellectual disabilities. We should ensure our own community is fully inclusive of all people with disabilities and get rid of hierarchies of disabilities that separate us from working together.

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."

It’s Time for August Congressional Recess

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, 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 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 story and perspective on important disability policy issues can prepare your legislator to fight for disability rights through 2023 and beyond!

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The Pandemic’s Devastation Continues for Many Families

“It’s like a tornado has devastated us. But no one is coming to help.”

By Grace from New York

I have twin sons who have autism spectrum disorder and intellectual and developmental disabilities. One of my sons has significant needs and needs to attend a full-care and full-supervision day program. He graduated from high school in June 2020, but because of the pandemic, no day programs were open for him to attend.

Three years later, due to the pandemic’s devastation of adult services and programs, there are still no programs available for him, nor are there any programs for the graduates of the classes of 2021, 2022, and soon, the class of 2023. And there is nothing on the horizon for any of them.

My son has been home for three years without supports or services.

I had to leave my job to stay home and care for him full-time, even though I am a single parent, and I was the only source of income for my family. Now, we are struggling terribly, both financially and physically, trying to survive under these extreme conditions.

The devastation of the pandemic has not ended for our family and others like ours. My son has been left with no direct care support, no respite, no day program—no services at all. The main cause for this failure is the lack of funding for programs and staffing. It was a fragile system at best pre-pandemic, but now, it has been decimated.

The best analogy is that it has been similar to when a tornado levels a town, and the community must rebuild everything completely. That is what happened to the programs and services for adults with disabilities during the pandemic. But the big difference in our story is that no Red Cross has shown up to help. No FEMA. No one is coming to help.

We have been left out here in our decimated landscape for three years now. And the idea that Congress may want to further cut financial support to programs for this most vulnerable population is beyond comprehension.

Please take the time to look at what has happened, to see the suffering, and to offer the compassion and realistic financial support so desperately needed.

Many young adults with disabilities face similar challenges when transitioning out of school. Life for these students shouldn’t stop when their schooling ends. This problem is not new, but the COVID-19 pandemic has increased its severity and effect nationwide.

Congress must deepen its investment in Medicaid home and community-based services so people with disabilities have the support they need to take part in their communities throughout their lifetimes.