Archive for category: Advocacy

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

January 25, 2024/in Advocacy, From the Frontlines/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.

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.”

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.

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.

DSP Spotlight: Lawrence Discusses Hardship Imposed on Direct Care Workforce

January 9, 2024/in Advocacy, From the Frontlines/by The Arc

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.”

Spotlighting The Arc’s Changemakers: Laura Kennedy, President of the Board of Directors

December 15, 2023/in Advocacy, From the Frontlines/by The Arc

When Julia Kennedy was born in 1982, The Arc had already been laying the groundwork for her to thrive.

Laura and Hal Kennedy were parents to two daughters, ages 3 and 4, when Julia arrived. Early on in her infancy, they knew that Julia was experiencing developmental delays. She eventually was diagnosed with profound intellectual disability and autism. Working with their pediatrician, the Kennedys sought out the help they would need to support Julia at every step, and they found their local chapter of The Arc, AHRC New York City.

Julia started attending a pre-school run by United Cerebral Palsy, where they received a flyer for a family event hosted by AHRC New York City. The whole family spent a Saturday afternoon connecting with other parents, siblings, and children with disabilities.

Laura shared: “It was like walking into the extended family that we all needed. It was the beginning of our now 40-year relationship with this incredible community of people.”

As Julia grew, and the Kennedys welcomed a fourth daughter, they began relying on The Arc for help with Julia’s schooling.

“I was learning about Julia’s rights and what environment could help her thrive. The team at AHRC New York City assured me that there was a continuum of services, and at the top, The Arc’s national office had gurus in special education policy fighting for systemic change. And before Julia was born, they had paved the way,” said Laura.

She added: “Very little existed 10 years before Julia arrived on the scene. I think that’s one of the most important things for people to keep in mind—The Arc’s national advocacy impacts people who are young and old, those who are not even born yet.”

The Kennedys were struggling to balance their four busy daughters’ needs. AHRC New York City helped them through respite care. Julia was very uncomfortable traveling, and so as the family took short trips, they gradually learned to trust other caregivers. Julia had invaluable experiences at overnight camp and staying at a respite home for a night or weekend, and Laura and Hal learned how to balance the risk and the opportunity.

“We needed that support to give time and attention to each child. And Julia needed to have different experiences in her life to grow. Between AHRC New York City’s programs, the wonderful staff we’ve worked with over the years, and the families we met through the chapter, we all benefited,” said Laura.

Soon, Laura started taking on leadership roles in her local and state chapters. In 1993, she joined the Board of Directors of AHRC New York City, representing her home borough of Staten Island. Laura was focused on helping the chapter be the go-to organization for families, supporting those recently receiving a disability diagnosis, and making the kind of connections that the Kennedy family had because of The Arc.

“In the mid-1990s, you still had some pediatricians telling families when they received a diagnosis, ‘Don’t take this on, for the sake of the rest of your family.’ Well, The Arc was there for families to show them that there was another way, and my family was living proof of what was possible,” said Laura.

“When I first learned about The Arc, I was drawn to the fact that family members make up the majority of the Board. That has a positive influence on how our chapters impact lives. There are other disability organizations that aren’t structured with that in mind, and so we are unique in our culture.”

As President of AHRC New York City’s Board, Laura worked with statewide advocates over two years to get the Governor to help families in disputes over their child’s special education services. They were successful in reversing the “burden of proof” in special education impartial hearings to place the burden on the school district, rather than on the parents.

In 2004, Laura stepped up to a state-wide position on the Board of Governors of The Arc of New York, which was then called NYSARC. She spearheaded a successful membership campaign that doubled the membership of the organization. Laura started attending The Arc’s dynamic national events—the Disability Policy Seminar, where she lobbied in Congress, and the National Convention, where she made lifelong connections. While serving as NYSARC’s president, in 2017, Laura successfully led the organization to fully brand with The Arc of the US.

Today, Julia is 41 years old, lives 10 minutes from her parents, and enjoys life in the community. She likes her outings for shopping and seeing shows, volunteers with Meals on Wheels, and continuously works on her life skills. Meanwhile, Laura hasn’t stopped leading. On Staten Island, in New York City, and in Albany, Laura stays busy by chairing AHRC New York City’s advocacy committee. She is currently the chapter’s longest serving board member. And as our national Board President, Laura is keenly aware of those that will be impacted by The Arc in the coming years, focusing on the future power of the national federation.

“If not us, who? The Arc is the go-to organization for people across the country. So much of what was there for Julia existed because of The Arc nationally and locally. We owe it to the next generation to be doing this work, all the time. What The Arc does is people work. It’s the best way to spend my time,” shared Laura. “We have much more work to do!”

Disability Advocates Urge Support for Emergency Funding Bill to Address Medicaid Care Crisis

October 24, 2023/in Advocacy, Press Releases, Public Policy/by The Arc

Washington, DC – Every person deserves the freedom of living in their own homes, being a part of their communities, and choosing how they spend their days. Medicaid’s home and community-based services makes that possible for millions of people with disabilities and older adults, yet chronic underfunding is forcing them into institutions and putting families in crisis. Today, the Home and Community-Based Services (HCBS) Relief Act was introduced by Senator Bob Casey (D-PA), a bill that would provide emergency funding to state Medicaid programs and have a profound impact on disabled and older Americans. The Arc applauds this pressing bill and urges lawmakers to pledge their support for independence and inclusion.

“Marginalized for far too long and facing catastrophic shortages of direct care workers, people with disabilities and their families are desperate for help,” said David Goldfarb, Director of Long-Term Supports and Services Policy at The Arc of the United States. “Without access to basic support for daily living, disabled people are at risk of being confined, isolated, and neglected in institutions or trapped in their homes. This is about the basic human right to live in the community. It’s time that we show people with disabilities that their lives not only matter, but that they are valued members of our society. The HCBS Relief Act would support and strengthen their daily lives, while also improving health, economic stability, and quality of life for their families and direct care workers.”

Millions of people rely on HCBS for daily activities, such as dressing, bathing, meal preparation, taking medication, employment support, mobility assistance, and more. The HCBS Relief Act would provide dedicated Medicaid funds to states for two years to stabilize their HCBS service delivery networks, recruit and retain HCBS direct care workers, and meet the long-term support and service needs of people with disabilities and older adults. The HCBS Access Act, which was introduced in March 2023, would make a transformational impact on the care crisis, but emergency relief is needed right now, which this bill would provide.

“My disability means I need assistance getting around and sometimes with communicating,” said Steve Grammer, a disabled person living in Virginia. “When I was 22, my mom fell ill and I was placed in a nursing home. I got to see her just once before she passed away. After 9 long years, my dream of independence came true. With the help of in-home caregivers, I have my own apartment and I can choose what I want to eat, where I want to go, and what I want to do. I no longer worry about my food being served cold or my medications being administered late. I can stay out late with friends while we listen to our favorite bands. I have freedom—and a life like yours. I’m living proof that people who have been barricaded away can live on their own and thrive while contributing to their communities.”

“I started out in an institution,” said Veronica Ayala, a disabled person living in Texas. “I was there for 18 really long months, and I was a child, so that was really traumatic. For 18 months, I didn’t have my mother to put me to bed, tell me a story, give me a bath. There was no love or attention given. Thankfully my mother realized that she could do it on her own with home and community-based services. With the right supports, anyone with a disability can live in their community. Anyone with a disability can succeed.”

Recent research from The Arc and the University of Minnesota shows that 35% of people with intellectual and developmental disabilities (IDD) are trapped on waiting lists for supports and services they desperately need, 19% of which have been waiting for more than ten years. This doesn’t just impact their lives – it’s having a ripple effect on their families and our economy. Nine in ten family caregivers reported that their careers have been negatively affected due to a lack of supports, and 66% have had to leave the workforce entirely. This is ultimately leaving families significantly stressed and financially strained.

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About The Arc of the United States: The Arc advocates for and serves people with intellectual and developmental disabilities (IDD), including Down syndrome, autism, Fetal Alcohol Spectrum Disorders, cerebral palsy, and other diagnoses. Founded in 1950 by parents who believed their children with IDD deserved more, The Arc is now a network of nearly 600 chapters across the country promoting and protecting the human rights of people with IDD and actively supporting their full inclusion and participation in the community throughout their lifetimes. Through the decades, The Arc has been at the forefront of advances in disability rights and supports. Visit www.thearc.org or follow us @TheArcUS to learn more. Note: The Arc is not an acronym; always refer to us as The Arc, not The ARC and never ARC. The Arc should be considered as a title or a phrase.

A young Black woman with long curly hair holds a framed picture of a young girl. Her mother stands next to her.

Leah Should Have Never Been Restrained and Secluded

October 10, 2023/in Advocacy/by The Arc

Texas mom and advocate Jeanna is no stranger to the disability field. She has three children, two of whom have disabilities. She is also a professional advocate who helps families navigate Texas’ education and service systems.

In January 2020, when Jeanna learned that her 14-year-old daughter Leah was having major behavioral issues at school, she knew what steps to take. Leah is autistic and nonspeaking and has an intellectual disability. Jeanna began observing Leah’s behavior more closely, including her nonverbal communication. She recognized that Leah was engaging in self-injurious behaviors and appeared resistant to going to school. Jeanna reached out to the school to share her observations and seek a cause, but her concerns were dismissed.

By March 2020, the situation worsened. Jeanna was being called to pick up Leah three times a week, and Jeanna learned that Leah had been placed into standing restraints twice. When the worsening COVID-19 pandemic shut down Leah’s school, Jeanna took the time with Leah at home to figure out what was causing such a drastic change in her daughter’s behavior and willingness to go to school.

Jeanna knew that there was a camera in Leah’s classroom, so she sent several requests to the school for the footage. Her first two requests were denied. After learning that Leah’s teachers had been fired, Jeanna requested the video again and finally received 30 minutes of edited video from the days Leah had been restrained.

One incident showed Leah being restrained because she was trying to access a sensory box to help her calm down. During this restraint, “[Leah] was put face down on the ground with her arms on her back while two adults held her down. Her legs started lifting like she was having a hard time breathing.” Meanwhile, her educators and specialists spewed inflammatory statements and profanities toward her.

The second restraint occurred after Leah got upset at another student for using her crayons. Leah was restrained and then put into the classroom bathroom. The lights were shut off, and the door was closed. It wasn’t clear to Jeanna how long Leah was secluded in the bathroom.

Watching these incidents devastated Jeanna, who had not been informed that Leah had been put in a prone restraint or secluded.

“I was upset that I never had the opportunity to know what she was going through and give her the comfort and support she needed. I was also devastated because I had worked with Leah’s administrators for years. When I asked why I was not told the details in the months after the incident, I was informed by Leah’s special education coordinator that they didn’t tell me because the George Floyd incident had happened, and they knew I must be going through a lot with that. It made me suspect my family’s race was a part of how we were treated during and after the incident. It makes me cringe, but what else is there to think when this comment is made as a response?”

In 2022, Leah returned to the classroom, but the transition has been challenging. Jeanna advocated for Leah’s new teachers to implement strategies that will help Leah understand that she can be safe at school. Jeanna is thankful that Leah’s current educational team has treated her with respect and kindness, but she is concerned for other students like Leah, as the educators who abused her daughter are still teaching in similar settings in neighboring school districts.

Jeanna (right) and her oldest daughter, Brianna (left), who is holding a photo of Leah.

Jeanna is also working with Leah to help her advocate for herself. “As a parent of a nonspeaking child, we are encouraged to teach our children to comply with what other people want. There is no protest when people treat them badly because they haven’t learned how. She’s going to be 17 years old this year, and only now is she learning how to say no.”

Today, Jeanna shares her story in hopes that other students don’t have to go through similar experiences. She encourages parents to listen and pay attention to their children’s words and actions. “We know [our kids] the best,” she says. “When they start showing behaviors that are not typical for them, we need to listen to them. I still regret, to this day, not paying more attention to Leah’s communication.”

Jeanna and her oldest daughter, Brianna, founded Project LEAH, a family advocacy group in Texas. The group brings families together to advocate so that no one else must deal with what their family has. They credit The Arc of Texas for standing by their side and supporting their group’s growth and advocacy.

How You Can Help

The bipartisan Keeping All Students Safe Act establishes safety standards and provides better training and oversight to ensure the safety of students and staff and to prevent abuse and death. Sign our petition to support this important bill. You can also reach out to your state chapter of The Arc to support state-level education advocacy.

New Bipartisan Bill Would Advance Economic Security for Disabled Americans

September 12, 2023/in Advocacy, Press Releases, Public Policy/by The Arc

Washington, DC – The Supplemental Security Income (SSI) program was designed to combat poverty among people with disabilities, but the program’s outdated rules do just the opposite—forcing people to live in poverty to qualify for monthly assistance. Today, The Arc celebrates the introduction of the SSI Savings Penalty Elimination Act by Senator Sherrod Brown (D-OH), Senator Bill Cassidy (R-LA), Representative Brian Higgins (D-NY), and Representative Brian Fitzpatrick (R-PA). This bipartisan bill, which is also supported by over 370 organizations, makes long-overdue reforms to the SSI program that would empower millions of people with disabilities to earn and save more money for their futures.

The SSI program was established 50 years ago and provides critical benefits to over 7.5 million people with disabilities and older adults to help them pay for basic needs like food, clothing, and shelter. But outdated eligibility rules punish SSI beneficiaries for saving money, pushing them into poverty. SSI also guarantees access to Medicaid in most states, which covers long-term services and supports and health care. Right now, people who get SSI cannot have more than $2,000 in financial resources and married couples can only have $3,000. Resources that count towards the SSI asset limit include cash, money in bank accounts, most retirement accounts, stocks and bonds, the value of life insurance policies and burial funds over $1,500, and some personal property. This strict asset limit has not been updated since 1984 and is not indexed to inflation.

“Decades of inflation and inaction have turned a crucial safety net program into a tightrope,” said Darcy Milburn, Director of Social Security and Healthcare Policy at The Arc of the United States. “The maximum amount of money an SSI beneficiary can have in a bank account is 80% less than what beneficiaries were allowed to save in 1972. SSI’s strict asset limits force people with disabilities to live on a financial knife’s edge. It’s an incredibly difficult administrative burden and a very delicate balancing act that can easily tip to losing benefits altogether – which can be catastrophic.”

The SSI Savings Penalty Elimination Act would raise the SSI asset limit to $10,000 for individuals and index it to inflation moving forward. It would also raise the limit for married couples to $20,000 to help correct a harmful marriage penalty. The bill would significantly improve the lives of millions of people with disabilities and allow SSI beneficiaries to use their own savings to address needed emergencies when they arise.

SSI’s low asset limits combined with meager cash benefits are leaving 4 in 10 beneficiaries in poverty. People with disabilities live in poverty at more than twice the rate of those without disabilities, and SSI is a driving factor. These barriers are compounded by the Social Security Administration being in a state of crisis, where millions are waiting for appointments, decisions on applications, and appeals on rejected claims.

“Raising the SSI asset limit is one of the most important things we can do right now to improve financial security for millions of older adults and people with disabilities,” said Milburn. “The current asset limits trap people in poverty, create barriers to work, and make financial independence virtually impossible. SSI beneficiaries cannot save for necessary expenses like a security deposit or car repairs without the risk of losing their benefits, leaving many just one emergency away from homelessness and hunger. The negative impacts of the current SSI asset limits extend beyond individual SSI beneficiaries to their families, communities, and our economy as a whole.”

The Arc has advocated relentlessly for changes to SSI asset limits and against the existing unfair and discriminatory caps. For many years, we have urged Congress to update SSI requirements and benefits so that people with disabilities can have greater financial security and support, as well as pursue opportunities to build their futures.

To meet real-life people who are impacted by SSI asset limits, read these stories from Lauren and Jen and Eddie.

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About The Arc of the United States: The Arc advocates for and serves people with intellectual and developmental disabilities (IDD), including Down syndrome, autism, Fetal Alcohol Spectrum Disorders, cerebral palsy, and other diagnoses. Founded in 1950 by parents who believed their children with IDD deserved more, The Arc is now a network of nearly 600 chapters across the country promoting and protecting the human rights of people with IDD and actively supporting their full inclusion and participation in the community throughout their lifetimes. Through the decades, The Arc has been at the forefront of advances in disability rights and supports. Visit thearc.org or follow us @TheArcUS to learn more. Editor’s Note: The Arc is not an acronym; always refer to us as The Arc, not The ARC and never ARC. The Arc should be considered as a title or a phrase.

Media Contact: Jackie Dilworth, dilworth@thearc.org

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

Written by: Dr. Aditi Mallick, Former Acting Director of the CMS Office of Minority Health
Reviewed by: The Arc’s public policy experts

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.

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’s 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 ‘preschool 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.

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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