Archive for category: Advocacy

Betty Davis wears a blue top and white pants and stands outsie in front of The Arc of Alachua County sign.

DSP Recognition Week: Betty Davis’ Story

September 11, 2023/in Advocacy, From Our Chapters, From the Frontlines/by The Arc

People with disabilities want to live in their own communities and make their own choices about their lives, just like everyone else. For millions, direct support professionals (DSPs) like Betty Davis make that independence possible.

Betty has always had the innate ability to create a safe space for disabled people. As a child, she would talk to them in the grocery store, at church, and on the street. At the age of 18, she found herself running a daycare center and was drawn to do more for the disabled children who came through her doors. She enrolled in disability studies at Santa Fe College, which was right across the street from The Arc of Alachua County. Upon graduating, The Arc of Alachua County immediately hired her as a DSP. That was 20 years ago, and Betty has never looked back.

As Betty shares, “I fell in love with my clients. It wasn’t the pay. It wasn’t the management. It was the clients themselves. If you put your heart and soul into this job, you’ll get love and respect back. My clients have loved me so hard through the years.”

Being a DSP is rewarding work, but it can also be physically demanding, emotionally draining, and medically complex. Betty works at a group home with four women who have Prader-Willi syndrome, a developmental disability that causes a range of physical symptoms, learning difficulties, and behavioral challenges – most notably, a constant sense of hunger. Her clients need support 24 hours a day. “Every day, I sit down with each of my clients to go over their caloric intake. I assist them with getting bathed. I make and feed them dinner. I help them do their house chores, manage their medications, and go to bed. On special occasions, like birthdays, I take them home to be with their families. Every Friday, we go out to dinner at a different restaurant and go shopping afterward. They love Walmart, Dollar Tree, Roses, Five Below, and Ollies.”

Not only does Betty advocate for her clients, but they also advocate for her. Betty tears up as she recalls how Melinda, a client who recently passed away at the age of 61, went to the CEO of The Arc, Mark Swain, to ask him to meet her and recognize her work. That year, Betty won Employee of the Year. “She wanted to recognize the type of person I was and that I go out of the way to make them happy,” Betty added.

Despite the crucial role of DSPs, chronic underinvestment in Medicaid’s home and community-based services has led to paltry wages and training, which has created a nationwide shortage of workers. As Betty says, “Spend a day in our shoes. It might seem like what we do is easy, but it’s not. There’s no training, so I had to learn on the job, and there’s not enough staff. Sometimes, I have to work without a break, cover the next shift, or come in on weekends, but I don’t have a problem with that because I want my clients to be happy. Their families tell me all the time that if I wasn’t in their lives, they don’t know what they’d do or where they’d be.”

Luckily, Betty wouldn’t want to work anywhere else. “The Arc is a wonderful place for resources and a wonderful place to work. They are behind me 100% if I want to get more training, and they try to get as many resources as possible to help DSPs out. This is the place to bring your loved one. My clients wouldn’t want to be any other place.”

DSPs like Betty are vital to helping people with disabilities live with dignity and freedom. Help us celebrate them this DSP Recognition Week and beyond.

Medicaid Eligibility Renewals: A Message From CMS Office of Minority Health

September 7, 2023/in Public Policy, News, Grassroots, Press Releases/by The Arc

States are aggressively evaluating their Medicaid enrollments following the end of the public health emergency, and many are losing coverage. Here’s everything you need to know about the unwinding and what to do if you are a Medicaid beneficiary – direct from Dr. Aditi Mallick, Acting Director of the CMS Office of Minority Health.

Health care coverage is a critical lifeline for everyone and especially for people with disabilities and people who may be underinsured. Millions of individuals and families rely on Medicaid and Children’s Health Insurance Program (CHIP) to receive access to vital care to support their physical and mental health and, as a result, are likely to be impacted as states conduct Medicaid and CHIP eligibility renewals following the end of the COVID-19 public health emergency. The Centers for Medicare & Medicaid Services (CMS)¹ remains committed to ensuring that minority and underserved populations understand this process and how it may impact their enrollment, eligibility, and overall health care.

Medicaid Renewals 101

In March 2020, as part of COVID-19 relief, Congress authorized additional Medicaid funding for states on the condition that they satisfied a “continuous enrollment” condition, which generally prohibited states from terminating most Medicaid enrollees’ enrollment until the end of the COVID-19 public health emergency. This helped to ensure millions of people could remain enrolled in Medicaid coverage without interruption during the pandemic. The continuous enrollment condition ended on March 31, 2023, allowing states to begin to return to normal operations around eligibility and enrollment, including conducting Medicaid renewals, beginning on April 1, 2023.

Medicaid Renewals Impact on People With Disabilities

Medicaid and CHIP renewals are a multi-step process, and states must begin the process by attempting to complete renewal of coverage based on information available to them without contacting the individual. If that is not possible, agencies must send renewal notices and requests for information to enrollees.

These steps have challenges associated with reaching people with intellectual or developmental disabilities who lack sufficient supports to navigate Medicaid enrollment and eligibility. If an enrollee does not receive or reply to renewal notices from the state (for example, because they have moved addresses), their coverage could be interrupted or discontinued altogether. That could mean losing access to essential health care, medication, and services needed as part of ongoing services, supports, and care plans.

States have independent obligations under federal civil rights laws to ensure that individuals and families continue to have access to Medicaid and CHIP as states conduct renewals. For example, states are required to take reasonable steps to provide meaningful language access for individuals with limited English proficiency and ensure effective communication with individuals with disabilities. Ensuring access to information is vital and required. Losing Medicaid also means losing long-term services and support (LTSS) and home and community-based services (HCBS), such as care for people with disabilities who may need more support of age; physical, cognitive, developmental, or chronic health conditions; or other functional limitations that restrict their abilities to care for themselves.

The Road to Renewal

The first and most important step for ensuring continuation of coverage is consistent outreach and communications to those impacted to confirm that they are completing their renewal forms accurately and in a timely manner. Information on the Renew Your Medicaid or CHIP Coverage² webpage is a great starting point for helping people better navigate renewals. The webpage outlines how to prepare for the renewal process, what to do if you no longer qualify for Medicaid or CHIP, and where to go for more help, including contacts for each state’s Medicaid office.

We Need Your Help!

CMS is also using multiple creative avenues—such as direct partner outreach, monthly stakeholder webinars, social media, and ad placements—to spread awareness about Medicaid and CHIP renewals and to reach those who may have been missed through traditional communication channels. We are also planning communications focused on families with younger children during back-to-school activities in the fall.

Encourage people who lost their coverage to visit HealthCare.gov to see if they are eligible to enroll in a low-cost, quality health plan. Find toolkits, drop-ins, creative assets, and translations on the Medicaid and CHIP Renewals Outreach and Educational Resources webpage and be sure to download the All Hands on Deck Toolkit to get started in your community. Keep the conversation going throughout Open Enrollment! Find your state here to learn more.

Once enrolled, Coverage to Care offers resources to provide anyone information on health care coverage options, understanding their rights, and how to use their benefits. Join CMS in helping people understand and use their health coverage by sharing these tools with your community.

The Coverage to Care (C2C)³ campaign helps underserved populations understand health care coverage and connects them to primary care and preventive services that is right for them.
The C2C Roadmap to Better Care⁴ explains what health coverage is and how to use it to get primary care and preventive services. This resource is available in multiple languages, including Spanish⁵, as well as a Tribal Version⁶.
Getting the Care You Need: A Guide for People With Disabilities is a resource available in multiple languages to explain a person’s rights, how to work with health care providers, and how to take an active role in your health care.
Partner resources⁷ help health care professionals and national and community organizations support consumers as they navigate their coverage. This resource is available in multiple languages, including Spanish⁸.
Braille and additional format resources are available, contact CoveragetoCare@cms.hhs.gov.

By working together, we can reach those most in need of health care coverage as Medicaid renewals continue. Let’s stay committed to our shared vision of finding ways to consistently and creatively reach those who need our support. Together, we can ensure that eligible individuals remain on Medicaid and get the health care they need – a critical step helping individuals with intellectual or developmental disabilities receive the highest quality of health care.

1. (n.d.). Centers for Medicare & Medicaid Services. CMS.gov. https://www.cms.gov/
2. Medicaid (n.d.). Renew Your Medicaid or CHIP Coverage. Medicaid.gov. https://www.medicaid.gov/resources-for-states/coronavirus-disease-2019-covid-19/unwinding-and-returning-regular-operations-after-covid-19/renew-your-medicaid-or-chip-coverage/index.html
3. CMS OMH (n.d.). Coverage to Care. https://www.cms.gov/about-cms/agency-information/omh/health-equity-programs/c2c
4. CMS OMH (n.d.). C2C Roadmap to Better Care. https://www.cms.gov/files/document/c2c-roadmap-better-care.pdf
5. CMS OMH (n.d.). Guía Para Una Mejor Atención. https://www.cms.gov/files/document/roadmap-better-care-spanish.pdf
6. CMS OMH (n.d.). Roadmap to Better Care Tribal Version. https://www.cms.gov/files/document/c2c-roadmap-booklet-tribal.pdf
7. CMS OMH (n.d.). Partner Toolkit Get Involved in Coverage to Care. https://www.cms.gov/files/document/c2c-partner-toolkitenglish.pdf
8. CMS OMH (n.d.). Herramientas para Socios Participe en Coverage to Care. https://www.cms.gov/files/document/c2c-partner-toolkitspanish.pdf

A young man with disabilities and his mom sit outside in a park. The mom is looking over at the son, holding his arm lovingly.

Barbara Advocates for Her Son Jake Because His Life Depends on It

August 23, 2023/in Advocacy/by The Arc

Barbara’s son Jake is a medically complex young adult living at home with his parents. Jake relies on Medicaid to provide the services he needs to be medically safe and supported at home, including continuous skilled nursing and personal care assistance (PCA).

To be eligible for these services, Jake undergoes an annual assessment. This determines the number of support hours that are medically necessary for him to live safely at home and not in an institutional setting. Living in the comfort of his own home—and getting his medical, social, emotional, and recreational needs met, surrounded by loved ones—is important to Jake and a top priority for his family.

When Jake receives the support he requires, it is also of significant benefit to the state, since providing support for medically complex individuals at home is far less costly than residential or institutional placements. When the system works as it is intended to, everyone wins.

Currently, Jake is authorized to receive over 50 hours of continuous skilled nursing and over 70 hours of PCA services per week. The problem is there is a significant shortage of home-based nurses and caregivers for individuals like Jake, so only a small percentage of his authorized hours are staffed.

For several years, less than 10% of Jake’s nursing hours and less than half of his PCA hours have been filled. It is not uncommon for Jake’s parents to go days or weeks without help.

So, what happens when families can’t find appropriately trained staff and states can’t meet the mandate of filling authorized hours with reasonable promptness?

For Jake’s parents and for other families caring for medically complex pediatric and adult children living at home, it means the burden of care typically defaults to family members, putting an immense strain on families.

For Barbara and her son, the toll is significant. In Barbara’s words:

“I am Jake’s mother and guardian but, by necessity, I am also a full-time caregiver, routinely performing the duties of a nurse, personal care assistant, and home health aide. Having my son at home is not a burden, but providing the care he needs without the help that he is due is taxing at best and unsustainable and dangerous at worst.

I am typically ‘on duty’ 24/7, providing clinical care without any qualification or expertise other than lived experience. The relentless task of providing full-time care results in chronic sleep deprivation, exhaustion, and isolation. There are no days off. If I am not directly providing care, I am managing the endless list of duties that support our fragile infrastructure: recruiting help, managing prescriptions, ordering medical equipment and supplies, making and attending medical appointments, ensuring assessments and care plans are up to date, and working with multiple agencies and providers.

The low rate of pay offered to nurses and other homecare providers offers little incentive to pursue these jobs and is not competitive with less-taxing, higher-paying positions. Not being able to offer attractive, competitive pay commensurate with the expected level of skilled care that needs to be provided forces families to hire less qualified help out of desperation. This puts the lives of our children at risk. We should not be forced to lower the bar at our loved one’s expense.

Not having skilled care providers in our home means more frequent and costly ambulance calls, emergency room visits, and hospitalizations. It also means that parents routinely need to make critical, ‘in the moment’, medical decisions without direct guidance or support from trained clinicians who know their child well. Making the wrong decision could mean the difference between life and death. Imagine, living with the burden of that responsibility. [Jake’s] life is in my hands, every single day.”

The occurrence of a global pandemic exacerbated a chronic nursing shortage. It also shed a greater spotlight on the unique challenges faced by parents who care for medically fragile children at home. While the pandemic has wound down for many, for families like Barbara’s, the parameters under which it forced us all to live will continue. The challenges she faces of keeping her son safe, home, and alive remain a daily struggle, and the shortage of qualified caregivers persists. These families are in crisis, and they need help.

Barbara hopes that sharing her story will encourage other families to do the same. “Advocacy starts with creating awareness. Through telling our stories, we find and build community. Through community, we build strength and increase the power of our advocacy. At all levels, we are facing a crisis and our voices need to be heard and acknowledged. As a country, we can and must do better. Our children’s lives depend on it.”

Seclusion and Restraint: A Mother and Teacher’s Perspective

August 22, 2023/in Advocacy, Grassroots/by The Arc

Cassie is a mother, former educator, and co-founder of Michigan Advocates to End Seclusion and Restraint (EndSaR). She is a passionate advocate against the use of seclusion and restraint in schools, fueled by a lifetime of personal and professional experiences with these practices, which she hopes others can learn from.

Cassie’s first experience with seclusion and restraint happened in 2001 when she was still a teaching student. She took a long-term substitute position working one-on-one with a fifth grader whom the school had determined to be too aggressive to engage in his classroom.

Cassie and her student had a good relationship with no incidents. But one day, Cassie arrived at school and found the student had been secluded in a room after “getting aggressive” at breakfast. He was screaming, punching, and kicking at the window. Staff told her this was typical behavior and that she needed to keep him there until he calmed down. “I had never heard of such a thing in all my educational training,” says Cassie, “but I was very good at following instructions, so I did what they told me.”

The student spent hours in that room—and not long after that, he stopped showing up for school. Over 20 years later, Cassie says this experience still lives with her. “I know what was happening felt wrong, but I had no idea at the time what to do differently.”

Nearly 20 years went by for Cassie without another incident involving seclusion or restraint. And when it happened again, she didn’t experience it as a teacher—it was as a parent. The person impacted was her five-year-old son, Kai.

When Kai was two years old, Cassie noticed her son was different. He was incredibly bright and taught himself to read before preschool—but he was also very intense and craved Cassie’s attention, acting out if she focused on something other than him. These challenges followed Kai into kindergarten. Eventually, he was diagnosed with autism. They discovered later that he also has extreme difficulty following short, specific directions.

The diagnosis gave Kai access to services and supports, and he received an individualized education plan (IEP). The teachers started with this plan and would ask Kai to sit quietly for five minutes, but he would get angry, and they would start the five minutes over again. This led to him being put in a seclusion room for the first time at just five years old.

Between August and December of his first-grade year, Cassie recorded that six-year-old Kai was sent for “time away” around 100 times, much of which took place in a seclusion room.

“It was a little, closet-sized room in an office… The one skinny window was covered with paper so [Kai] couldn’t see who was outside… Sometimes the door was fully closed, but many times, the school would have the door a little open but blocked so he couldn’t get out. When it was a little open, the school did not consider it seclusion.”

Eventually, a behavioral specialist was consulted, and they advised the use of restraints. This moment was a revelation and turning point for Cassie, both in terms of Kai’s education and her advocacy.

Cassie realized that the school system wasn’t going to work for Kai, because staff didn’t understand that he wasn’t in full control of his actions; he was struggling to manage his nervous system and sensory challenges. These experiences ultimately led Cassie to homeschool Kai. They also inspired her to start Michigan Advocates to End Seclusion and Restraint so that no other students and families must go through what her family did.

Parents and teachers often believe that seclusion and restraint are needed to keep everyone safe. However, Cassie believes that it makes everyone less safe:

“Right now, teachers set expectations for students and expect students to meet them. If they don’t, the system perceives the student as a problem. There is often a lack of awareness of the adult role in co-regulation as a tool for preventing unwanted behaviors. This environment causes parents to feel like they are part of the problem when they offer alternative ways to care for their kids, and this mindset is also part of what fuels the ‘pre-school to prison’ pipeline, where students are pushed out of the classroom and become much more likely to be introduced to the criminal justice system.

If we could work with students, their families, and mental health providers to identify the underlying causes of behaviors and resolve those issues, we could prevent most of these crises and issues from occurring. When this happens, everyone is safer.

To do this, we need to support our teachers in the classroom with training on data-driven best practices, developments in neuroscience and learning, and resources, including more personnel and help in the classroom. We need to get away from grading teachers on their classrooms’ behavior management and rewarding and punishing teachers based on the behaviors that students in their classroom display.”

How to Help Students With Disabilities

Teachers and schools need money to support students with disabilities. The Individuals with Disabilities Education Act (IDEA) was passed into law in 1975 to provide education services to kids with disabilities. Currently, Congress funds schools at less than 15 percent of their needed costs. We must fully fund special education—and general education—costs so that teachers and schools have the right resources to support the next generation of Americans.

We also need Congress to pass the bipartisan Keeping All Students Safe Act to establish safety standards and provide better training and oversight to ensure the safety of students and staff and prevent abuse and death. Sign our petition to support this important bill.

A long school hallway lined with red lockers and classroom doors on either side.

Amanda and Other Michigan Advocates Fight to End Seclusion and Restraint in Schools

August 22, 2023/in Advocacy, Grassroots/by The Arc

When her seven-year-old son was in first grade, Michigan mom Amanda got an unexpected call from the new school principal. Her son, who has autism, had kicked the principal—and Amanda was being asked to keep her son home from school the next day.

A strong advocate for her son, Amanda agreed but asked the school to confirm that her son’s 504 plan was being followed. She also asked for an evaluation for an individualized education plan, since there seemed to be something going on.

But after the incident, things escalated.

“My seven-year-old was put into a classroom by himself. The staff exited the room, closed the door, and held the door handle so he could not leave. They said this was because he would throw items at them or threaten to break items if they stayed in the room. I remember my child saying to me, ‘Mommy, I was so scared. Why did they lock me in there?’ Even though the door wasn’t locked, he couldn’t get out of there and didn’t know what was going to happen.”

These seclusions continued to happen anytime there was a behavior. Despite regular therapy and practicing calming strategies daily before school, nothing worked. Within minutes of getting to school, Amanda would get a call saying her son was out of control and that she needed to go get him.

“Eventually, the therapist told us that our son had PTSD symptoms. That when he would walk into school, he was stuck in a fight or flight response, just waiting for something bad to happen.”

By second grade, the school told Amanda they could no longer support her son, so she moved him to a new school. On the first day at the new school, Amanda got another devastating call—this time from her son, who had been allowed to call his mom during a break from seclusion. When Amanda picked up the phone, she heard her eight-year-old say, “You have to come get me…. pick me up, pick me up. I couldn’t breathe, I couldn’t breathe.”

Frantic, Amanda called the school and was told that her son had been restrained using an approved hold before he was put in a seclusion room. She was told that if her son could talk, he could breathe too. “Years later, after George Floyd was smothered in the streets,” she says, “I realized that the idea that if people can talk, that they can breathe is wrong and that something very bad could have happened to my child.”

While Amanda’s son has not been restrained or secluded in a very long time, the trauma from those past experiences continues to impact him, even now in junior high. And the impact extends to Amanda’s whole family. “We don’t know how [this trauma] will affect us throughout our lives, and I don’t want any child or any family to have to experience what we went through. For me, part of healing is to take this experience and somehow do something with it to make it make sense.”

Part of this healing journey led Amanda to join Michigan Advocates to End Seclusion and Restraint.

Despite her son’s and family’s experience with their area public schools, Amanda wants others to know she doesn’t blame teachers for what happened.

“I am a huge believer in public schools and teachers, and I don’t blame our public educators for doing what they are trained to do. They have no other tools at their disposal and don’t have the funding to do something else… Legislation like the Keeping All Students Safe Act has money attached to it so we can give teachers other tools in their toolbox and the resources needed to use them… I also want parents to know they need to look out for signs of trauma if their child is secluded and restrained. If something strikes you as wrong in your gut, trust it, even if others are telling you it is okay. You know your kid the best.”

One Family’s Experience Navigating Medicaid, From Applying to Obtaining Services

August 21, 2023/in Advocacy/by The Arc

By Terri from Massachusetts

Fifteen years ago, within days of being born, we learned that our son had Down syndrome. This sent us into a flurry of information gathering, advocacy, and more.

One of the first pieces of advice other parents gave us was to sign up for Medicaid to help with expenses, including daylong doctor visits every six months and specialized equipment. A quick glance at the application was not encouraging.

Despite being well-educated, I found the paperwork daunting. It made me wonder—and worry about—what the process would be like for someone without strong literacy skills or for whom English is a second language. The cynic in me wondered if it was complicated by design, to frustrate people from applying.

For years, I was one of the frustrated people. My time felt completely consumed with trying to understand what it meant to raise a child with Down syndrome and to connect with families and communities that could support our efforts. Factoring in time spent trying to give some attention to our older child (forget finding couple time or alone time) and working at a more-than-full-time job meant I had no emotional bandwidth left to go through the [Medicaid] application process.

Finally, when my son was eight, another parent told me that many hospitals have staff who help navigate it. Thankfully, the hospital’s help meant we were successful on our first attempt. Still, applying so late meant we missed out on eight years of having co-pays covered, on financial support [for medically necessary items], on assistive devices to help my son walk and talk, and on getting him a [support worker].

For the most part, [having] Medicaid for the past seven years has been a huge help. We finally got a [support worker] and, a year later, a skills trainer.

Then the pandemic hit. For two years, we had neither service, which is understandable, because no one was eager to meet in someone’s home, and we weren’t eager to have anyone in our home either.

In July 2022, we were finally able to resume with [another support worker] and skills trainer. But where did the money go during those two years? It did not go to already underpaid [support workers] or skills trainers nor did Medicaid offer to make up for even a fraction of lost time, despite [my son’s skills having regressed]. In fact, Medicaid decreased our son’s skills trainer hours this past summer.

There are many ways in which we are grateful for Medicaid. When it works, it works well. Expenses are so high for so many of the things we have needed over the years, and even a little of the support that is included with Medicaid would have been welcome. But the process of successfully signing up seems to rely on a combination of word-of-mouth, advanced literacy, legal skills, patience with paperwork, and luck.

It should not be so difficult to support the needs of our most vulnerable citizens.

Medicaid Saved Bob’s Daughters’ Lives but Also Creates Constant Struggles

August 17, 2023/in Advocacy/by The Arc

By Bob from New Jersey

Medicaid saved my daughters’ lives, and I am eternally grateful for it.

Annika and Maya were born 19 years ago with significant developmental disabilities and complex medical issues. Medicaid gave us easy access to one of the best children’s hospitals in the world, Children’s Hospital of Philadelphia (CHOP), which is located less than one hour from our home.

Annika

Annika and Maya were seen and cared for by some of the best specialty doctors in the world, including neurologists, gastroenterologists, geneticists, orthopedists, and feeding specialists—and their care was covered by Medicaid. These doctors literally saved Annika’s and Maya’s lives and gave them the best chance for a quality life.

Many times, when we took Annika and Maya to another hospital for urgent care, we were told they could not adequately care for them and they, subsequently, sent us to CHOP.

Maya passed away in 2014 after suffering from a fatal seizure. She lived a full, rich, and joyful life, nurtured by the exceptional support and overwhelming love of our family and friends. She is deeply missed.

A few years ago, [our state] Medicaid agency informed us that CHOP would no longer be in-network, so we should plan on using New Jersey hospitals. However, there is no comparable hospital in [the state].

The Arc of New Jersey advocated for CHOP to become in-network with [our state] Medicaid agency again. This did not happen, but a compromise was given. Now, the Medicaid agency may make a case-by-case exception for a child to go to CHOP for a specific reason, for a specific doctor, and for a short period of time.

For Annika to be seen at CHOP now, we must go through a long, difficult, frustrating, and time-consuming process to get the prior authorization. The authorization is only for a month or so and only for two to three visits. This is a terrible and arduous process. This never would have worked for Annika when she was younger and had to go to CHOP frequently and see many doctors.

Under this new out-of-network system, my wife and I would have had to spend all of our time managing prior authorization—an impossible task. This is on top of the emotional, physical, and financial stress of having a child with great needs.

I am thankful for [our state] Medicaid program because it provided us access to the many supports and services that have helped Annika grow to her full potential. However, I am saddened to think of all the children [in New Jersey] using Medicaid that will not have access to [experts at] CHOP. This is a tragedy that would be easy to correct.

How You Can Help

Medicaid provides critical support to families, like Bob’s, nationwide. Please support legislation that protects and expands Medicaid to better help families with disabilities. Contact your state chapter to learn how to do this in your state.

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

July 20, 2023/in Advocacy, Public Policy/by The Arc

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.

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

July 12, 2023/in Advocacy/by The Arc

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!

The Pandemic’s Devastation Continues for Many Families

July 10, 2023/in Advocacy/by The Arc

“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.

The Arc promotes and protects the human rights of people with intellectual and developmental disabilities and actively supports their full inclusion and participation in the community throughout their lifetimes.

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