Logan, a young, disabled man, is sitting outdoors in a wheelchair. There's a cow standing next to him. Logan has a big smile on his face.

Logan Dreams of Starting His Business, But the SSI Asset Limit Holds Him Back

/in /by The Arc

“My entire life, I have been proving people wrong about what I can do.”

Logan, a young, disabled man, is sitting outdoors in a wheelchair. There's a cow standing next to him. Logan has a big smile on his face.Born at 27 weeks and just over 2 pounds, Logan was small enough to fit in the palm of his mom’s hands. He spent a month in the neonatal intensive care unit on heart monitors and chest tubes, and his lungs collapsed twice. The doctors told his mom that Logan would never talk or speak and that he would be a “vegetable.” But they were wrong.

With the support of his family, friends, and various aides, Logan grew to be a happy and healthy kid, and he discovered his life’s work.

Logan’s passion in life is livestock, and he’s ready to open his business.

In middle and high school, Logan joined the Future Farmers of America (FFA), a youth organization that prepares its members for leadership, growth, and career success through agricultural education. With the support of his teachers, who fostered his passion in this area and believed in his skills, he not only achieved his state level degrees but also his American degree, the highest FFA degree available. Now, Logan wants to start his own cattle company and knows that nothing is going to stop him from being successful if he can get started. He dreams of having his name on everything in his business—from the truck to the stock.

“My family raised cows growing up, and I got hit by the bug to learn more. My senior year, I showed and sold my first steer. I knew immediately that cattle was what I was meant to do. I want to give back to those who gave everything to me and be someone kids in the industry can look up to.”

But the Supplemental Security Income (SSI) asset limit is limiting Logan and stopping him from pursuing his dreams.

SSI provides critical support to Logan and nearly 8 million other people with disabilities and older Americans. Logan uses the money he gets from SSI to pay his rent and food. But most importantly, SSI qualifies Logan to use Medicaid to help pay for his health care needs. Without it, his family would struggle to pay for the things he needs for his daily life.

Right now, outdated rules stop people who get SSI from being able to save money. Unmarried people like Logan who get SSI can only have $2,000 in assets, which includes money in bank accounts, retirement accounts, and other savings. Married people can only have $3,000 in assets.

Logan, a young man in a wheelchair, is reaching his arm out to touch a cow that's standing next to him.The current SSI asset limit means that Logan can’t open his own cattle business, since even owning one steer would put him over the limit.

“I want to do what I want to do and how I want to do it…. I want to make a living. I also have other dreams – to get married and have kids, to have a life like everyone else has.”

At 25, Logan’s not done—he’s just getting started to prove everyone wrong. But he needs Congress’ help to make his next dream possible by passing laws to increase the asset limit.

“Congress hasn’t done anything in 40 years to raise this limit. It’s time to take care of business and get this change done. I’ll keep going, even if I have to call 125 people. The words ‘I can’t’ are not in my vocabulary.”

Congress is considering bills that would raise the SSI asset limit. It would raise the limit from $2,000 to $10,000 for single people like Logan, and it would increase the limit from $3,000 to $20,000 for married couples who get SSI.

For Logan, this change would be huge, as it would allow him to start his business.

Support Logan’s dream and the dreams of other entrepreneurs with disabilities across the country. Contact your member of Congress to raise the SSI asset limit.

A head shot of a young woman with Down syndrome, smiling.

Equal Lives, Equal Rights: Challenging Organ Transplant Discrimination Against People With Disabilities

/in , , /by The Arc

Over 100,000 individuals in the United States are waiting for an organ transplant, including many people with intellectual and developmental disabilities (IDD). Thousands of people die each year waiting for a transplant. Unfortunately, many people with IDD get rejected at such high rates that it has become an ethical medical issue.1 For example, a study showed that individuals with IDD were 62% less likely to receive a kidney transplant.2

The National Council on Disability released a report about organ transplant discrimination. The report shared beliefs that some medical professionals had about people with disabilities. Some doctors believe that those with IDD would not be able to comply with postoperative care. Other doctors believe that disability impacts the likelihood of having a successful transplant.3 However, research has shown that these are myths. Many studies show that transplant outcomes for people with disabilities are not worse than those who do not have disabilities.4

Thankfully, some professionals understand that having a disability does not mean a person should be less eligible for an organ transplant. Thanks to organ donations, people like Charlotte Woodward can survive and live fulfilling lives!

A head shot of a young woman with Down syndrome, smiling.Charlotte is an advocate with Down syndrome who was born with a congenital heart defect. She had to undergo multiple surgeries as a child and finally received a heart transplant in 2012. The journey to get her heart transplant had its challenges, but she used her experience to fight to make sure everyone had access to organ transplants. To make this a reality, Charlotte spoke with policymakers about creating a bill about organ transplant discrimination. Members of Congress created the Charlotte Woodward Organ Transplant Discrimination Prevention Act. This bill would prohibit health care entities from denying a person access to a transplant due to their disability.

For decades, The Arc has supported legislation, regulations, and policies that address organ transplant discrimination. Charlotte’s bill’s introduction in Congress was successful. The Arc will continue to advocate that organ transplant discrimination is wrong and needs to end.

Charlotte is also a member of The Arc’s National Council of Self-Advocates. Charlotte offers this advice for other self-advocates who are tirelessly working to advance legislation: “Never give up. If you don’t speak up for yourself and don’t demand what you want and need, you’re not going to get it.”

If you are a self-advocate looking for effective advocacy tips, join our National Council of Self-Advocates.

 

 

 

1 https://www.washingtonpost.com/national/health-science/people-with-autism-intellectual-disabilities-fight-bias-in-transplants/2017/03/04/756ff5b8-feb2-11e6-8f41-ea6ed597e4ca_story.html

2 https://jamanetwork.com/journals/jamasurgery/fullarticle/2801511

3 https://www.ncd.gov/assets/uploads/reports/2019/ncd_organ_transplant_508.pdf

4 https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9932938/

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!

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

Make Plans to Exercise Your Right to Vote in 2024

/in /by The Arc

On Tuesday, November 5, 2024, eligible voters will have the opportunity to vote in federal, state, and local elections. The leaders who are elected will have a big impact on people with disabilities and their families, because they influence what policies are made and how tax dollars are spent. Your vote has the power to shape future policy on issues critical to the disability community!

What’s on the Ballot This Year?

  • Federal: Voters will decide on a president and vice president. The U.S. House of Representatives will be choosing leaders for all 435 seats and the U.S. Senate will be electing 33 members.
  • State: Eleven states will hold governor’s races. State executive official elections will also take place this year.
  • Local: You can find information on this year’s elections, polling locations, and more for your county and city here.

Prepare to Vote in 2024

Use The Arc’s Election Center (available in English and Spanish) to:

  • Review your voter information. Make sure your voter information is up to date with your current name, address, email, and phone number.
  • Register to vote. You can register online or get information on how to register by paper.
  • Find your candidates. See who is running for office in your area.
  • Find your elected officials. See who currently represents you at the federal, state, and local levels.

Want More Information on Voting?

  • Visit TheArc.org/Vote. You will find resources that cover how to vote, your voter rights, and what to do if your rights are violated. You will also find information about major issues that impact people with disabilities and their families and sample questions you can use to ask candidates about these issues.
  • Follow The Arc on Facebook, X (formerly Twitter), Instagram, and LinkedIn. We will be sharing voter updates, resources, and stories all the way to Election Day.
  • Connect with your local or state chapter of The Arc. Use our Find a Chapter tool to find a chapter near you. They may host candidate forums and other events you can join.
  • Follow your elected officials on social media. Learn about their current campaign activities by following them on X (formerly Twitter). You can find their official Twitter handles here.
  • Sign up for our action alerts and email updates.

Now is the time to let your opinions be heard on the critical issues that affect the lives of people with disabilities and their families. Get out there, register, and make plans to exercise your right to vote in 2024!

A photo of Ken Oakes wearing a suit with a flower in the lapel. He is outside at an event, speaking into a microphone.

Spotlighting The Arc’s Changemakers: Kenneth Oakes, Immediate Past President

/in , , /by The Arc

A childhood friendship sparked Ken Oakes’ lifelong dedication to the disability community. His mom’s cousin Louise had Down syndrome and was only 10 years older than him, making her part of Ken’s inner circle growing up. This early exposure ignited a drive to serve, though he didn’t know where it would lead him yet. Ken always wanted to teach, but had his sights set on high school social studies. A college observation requirement opened the doors to teaching children with disabilities. Though hesitant at first, as Ken shares, “I fell in love with it.” That summer, he applied to teach at a summer school for students with intellectual and developmental disabilities (IDD), the G.A. Barber Center run by The Arc of Erie County. For the next 47 years, he devoted his career to special education and as an advocate for children and adults with disabilities and their families.Newspaper clippings about Ken Oakes.

The Arc has continued to shape Ken’s career and volunteer work since 1976. He spent college summers working at the Barber Center and volunteering with The Arc of Erie County, becoming President of the Erie Youth Arc. Every summer, he and his fellow Youth Arc volunteers from across the state would go to a state-run institution for people with IDD. They would spend the weekend there to paint rooms and “brighten up their world.” While in college, Ken was working part-time in the group homes operated by the G.A. Barber Center. He helped former residents transition to life outside of the institution that they had spent decades confined within. Ken explains, “My whole family got involved. I brought folks to my parents for dinner—and even the holidays if they didn’t have family to spend it with. I just wanted a better life for them.”

After college, Ken went on to spend four decades as a teacher, a program consultant, and an administrator. As Ken says, “special education was my world.” But he will never forget his first day. His students, 7 of whom were full-time wheelchair users and 3 of whom had IDD, arrived 45 minutes later than everyone else and spent their whole day in one classroom. “They didn’t get art, they didn’t get physical education, they didn’t go to the library,” explains Ken. “Because of The Arc, I knew that was wrong. We started eating lunch at a separate table in the cafeteria and going to the gym and library by ourselves. After a couple of weeks, I told my principal that I’d like my students to go to general education classes. By the end of the first quarter, all my kids were in some general education classes, which helped them make friends outside of our classroom. Soon, my kids were having lunch with their new friends, not at a separate table in the cafeteria or in our classroom.” He beams with pride as he remembers Amy, a second grader who had Cerebral Palsy. Her parents were skeptical of her being included in general education. He ran into Amy at the mall four years ago, and, as Ken adds, “she went to college, got married, and is now a social worker. To know she’s achieved so much, I like to think I was part of inspiring her and changing her mother’s mind about what’s possible.”

An old black and white photHis impact on students didn’t stop in the classroom. After his career as a teacher, he went on to become the Special Education Director in Philadelphia and now teaches graduate school, supervises teachers, and was just appointed by the Governor to serve on Pennsylvania’s Special Education Advisory Panel. He also continued to volunteer with The Arc. “I think I did everything possible with The Arc.” In 2005, The Arc of Pennsylvania asked Ken to represent The Arc on the state’s Right to Education Task Force, which later led to his joining the Boards of The Arc of Philadelphia and The Arc of Pennsylvania, where he served as president of both organizations. He learned more and more about The Arc of the United States and was eager to get involved. He went to National Conventions, joined Committees, and eventually joined the national Board. “I went from organizing days at the zoo to becoming the national President—I was flabbergasted,” shares Ken.

His proudest moments aren’t in serving as President of his local chapters or the national organization. Ken explains, “Because of The Arc, all kids go to public school now and in my state, nobody lives in an institution anymore. To know I had a tiny bit to do with that is what I’m most proud of. I’ve met thousands of teachers, kids, and parents over the years, and I like to think I made life just a little better for them.”

When asked what continues to drive his involvement, Ken emphasizes, “There’s still so much work to be done.” Though life in 2024 is exponentially better for people with IDD than it was five decades ago, issues of isolation and underemployment persist today. He hopes to expand understanding and acceptance of people with IDD in our society. He says, “Be good to them because they’re good neighbors, good students, good friends to your kids, and may make a difference when they grow up.”A photo of Ken Oakes wearing a suit with a flower in the lapel. He is outside at an event, speaking into a microphone.

Ken is eager to continue contributing however he can, whether serving on a Board committee or consulting state leaders on teacher shortages. As Ken adds, “I want people to understand that The Arc has been here from the beginning and will be here for the future. We’re never going to stop making life better, one day at a time. The national office and local chapters are driven by families and self-advocates, and you can always count on The Arc.”

As for Louise, her parents kept her sheltered at home well into her adulthood. They passed away when she was in her 40s, and Louise was placed in a group home run by the G.A. Barber Center. She hated it at first. “When she first got there, she ran away twice,” describes Ken. “But little by little, she came to love it. Louise blossomed in the community, and those years were her best. What makes that so special to me is that The Arc made that happen for her, and has done that for hundreds of thousands of people.”

A young girl with Down syndrome is wearing headphones and hugging her mom.

Tonya’s Struggle to Find Child Care for Her Daughter

/in /by The Arc

A young girl with Down syndrome is outdoors. She's standing inside a rock structure and smiling.

Around the country, families are struggling to find and afford child care, and child care centers are struggling to keep their doors open. Half the country lives in child care deserts, where the number of kids under age five far exceeds the child care slots available.

Families of children with disabilities face even greater challenges to finding care due to inaccessible child care centers.

Recently, Tonya from Texas shared the challenges her family has faced with finding child care for her daughter, who has Down syndrome.

“In November 2022, we enrolled our daughter, who was six years old at the time, to receive after school care at a child care center that was being built in our neighborhood. My daughter needs constant supervision and is not potty trained. We’ve been turned down from multiple centers in the past, so we were excited and also worried about any issues that may come up.”

A young girl with Down syndrome is wearing headphones and hugging her mom.

Tonya exchanged several emails and phone calls with the center director. She was assured the center would be able to provide care for her daughter and felt they had done a great job in addressing all of her concerns.

But the week her daughter started, Tonya was called to the center three times. She was asked to pick her child up because she had eloped. Elopement, or wandering away from a safe area or trusted person, is a behavior exhibited by some children with autism, Down syndrome, intellectual disability, anxiety, and ADHD.

“After the third call, I was informed that the center didn’t have adequate staff to provide constant supervision for my daughter. I was also told she was hitting other kids and would not be permitted to return… In the end, this ray of hope was a right disaster. Where, exactly, can I send her then? Right now, her dad and I do our best to keep an eye on her while we finish our workdays. And with many high school students wanting $15–20 an hour for babysitting, we can’t afford a regular babysitter.”

“Finding child care should not be this hard. It’s exhausting and disheartening, and it’s demeaning to our daughter.”

Join us and tell Congress to make child care for children with disabilities a priority today.

A hand holds a small wooden blue house with a heart shape cut out of it.

Providers Who Care for People With Disabilities Deserve a Raise

/in , /by The Arc

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.

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

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

/in , /by The Arc

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

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

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

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

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

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

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

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

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

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

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

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

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

DSP Spotlight: Lawrence Discusses Hardship Imposed on Direct Care Workforce

/in , /by The Arc

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

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

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

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

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

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

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