The Arc logo

New Bill Would Advance Equity & Independence for Millions of Americans With Disabilities

/in , , /by The Arc

People with disabilities and older adults want to live in their own homes and communities, and they deserve that right just like everyone else. Today, Sens. Bob Casey (D-PA), Chair of the Senate Aging Committee, Tim Kaine (D-VA), Sherrod Brown (D-OH), and Maggie Hassan (D-NH) along with Rep. Debbie Dingell (D-MI) introduced a critical bill – developed with The Arc and other advocates – that will fundamentally change how these populations live full and inclusive lives. The Arc stands unwaveringly behind the Home and Community-Based Services (HCBS) Access Act and urges Congress to pass this long overdue bill.

HCBS waivers were established under Medicaid in the early 1980s, and millions of people rely on it today for daily activities, such as dressing, bathing, meal preparation, taking medication, employment support, mobility assistance, and more. Yet HCBS has been chronically underfunded for years, resulting in a national shortage of direct care workers, years-long wait lists for access to services, and, ultimately, isolation that strips people with disabilities and older adults of their dignity.

“We know that everyone benefits when people with disabilities are a part of the fabric of their communities, not locked away in institutions or nursing homes,” said David Goldfarb, Director of Long-Term Supports and Services Policy at The Arc of the United States. “Yet this country has treated the independence of people with disabilities as an idea, not a right. One in four U.S. adults live with a disability. These are your neighbors, your relatives, your coworkers, your friends, and they deserve better. We applaud the bill’s sponsors, Senators Casey, Hassan, Brown, and Kaine, and Representative Dingell, for their commitment to helping people with disabilities live with dignity.”

The HCBS Access Act would:

  • Make home and community-based services a mandatory Medicaid benefit and increase funding for these services;
  • Provide grant funding for states to expand their capacity to meet the needs of people who prefer HCBS;
  • Make steps to improve the stability, availability, and quality of direct care providers to help address the decades-long workforce shortage crisis;
  • Provide states with resources so that caregiving workers—who are disproportionately women of color—have stable, quality jobs and a living wage;
  • Provide training and support for family caregivers; and
  • Create better evaluation measures to assess the quality of HCBS being provided.

To meet real-life people who are impacted by the inadequacies of HCBS, watch Susan’s story.

###

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. The Arc has 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 and without regard to diagnosis. Visit www.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.

The Arc logo

The Arc Mourns the Loss of Disability Rights Icon Judy Heumann

/in /by The Arc

With heavy hearts, and along with the entire disability community, we mourn the loss of Judy Heumann. Judy was the trailblazer of the disability rights movement. Her contributions as an activist, spokesperson, and federal official on the national and international stages created huge changes for people with all kinds of disabilities, impacting so many aspects of life and society.

“Judy was a long-time member of The Arc Family. Her passion and commitment to the disability community was profound. She was a powerful advocate and mentor to so many. Most recently she was working towards creating the National Museum of Disability History and Culture. I look forward to Judy’s vision becoming a reality. She will be greatly missed and fondly remembered. All of us at The Arc send our condolences to her husband Jorge and her entire family,” said Laura Kennedy, President, The Arc’s Board of Directors.

“Having worked with and alongside Judy for over three decades, I struggle with finding words to express the powerful impact of her years of advocacy, leadership, and groundbreaking achievements. Her legacy will live on for generations to come, partly because she nurtured future leaders of the movement so that the civil rights work would always move forward,” said Julie Ward, Senior Executive Officer for Public Policy.

Learn more about Judy’s leadership and life on her website and in reporting by NPR.

Close up of a person holding a small leather wallet in their left hand and pulling out a folded dollar bill

For Tyson, Marriage Changed Everything – Including His SSI

/in , , , /by Pam Katz

By Tyson from North Carolina

Married people with disabilities often experience penalties that force the couple to give up necessary benefits. Congress must address marriage penalties so everyone has the chance to marry without endangering the key supports they need to live in the community. Tyson is one of the many people with disabilities who have experienced this penalty, and he shares his experience below.

I have been getting Supplemental Security Income (SSI) since I was 19 years old. I’m now 46. These benefits are important to me; they help me pay for things I need, like rent and food. I have always been vigilant to report my earnings and document everything Social Security asked of me.

In 2021, I got married to the love of my life. My wife works for our local school system and is a wonderful partner. I didn’t know, though, that getting married would so greatly impact my SSI.

In late 2021, I got a call from Social Security. It was time to do the regular review, where Social Security asks the same questions over and over to make sure I am sharing all the information and earnings I have. During the call, I shared that I got married, gave them the date and information, and shared my wife’s income information.

Because I got married, I was told that my SSI would be cut from about $800 a month to $500. This was because of my wife’s income. But SSI is my only source of income, and it felt like I was punished for getting married. At the same time, I also found out my rent would increase by $200 a month. So, my wife and I had to do more with even less.

The Social Security office also told me I could get a Social Security Disability Insurance (SSDI) benefit through my dad’s work record. I spent hours tracking down school records to make sure Social Security had what they needed. Several times, people who worked at Social Security told me I would get SSDI. But, in the end, they rejected my application. I felt like I was lied to and that my time was wasted.

I do my best to pay my bills and live the best life I can. But I am trapped in poverty.

I can’t help that I have a disability, and I want to do more to contribute to our household and have planned to get a part-time job. I am worried that doing this will make me lose my SSI and other benefits. My wife and I have thought about moving to another state to be near other family members, but that may cause me to lose my other benefits, too.

I don’t know what to do, but I know that people should not have to live like this or be punished for marrying the person they love.

The Arc logo

The Arc Announces Acting CEO Named Amidst Leadership Transition

/in /by The Arc

The Arc’s Board of Directors has named Ruben Rodriguez, the organization’s Chief Operating Officer, as Acting CEO while it undertakes a national search for new leadership.

Rodriguez joined The Arc in 2019, with nearly four decades of experience in operations and finance. He has an undergraduate degree in Accounting from Pace University, an MBA in Finance and Investments from the George Washington University, he is a Certified Professional Coach, and is currently working on a Masters in Disability Studies at City University of New York.

Rodriguez works closely with the organization’s leadership to support the mission, providing day-to-day strategic financial and operational management and planning to meet the organization’s short term and long term objectives. Included in his portfolio is oversight and hands-on leadership of finance, human resources, information technology, risk management, and broad program support. Rodriguez worked hand in hand with the staff and volunteer leadership teams to successfully steer The Arc through the COVID-19 pandemic, managing major changes in how the organization operated day-to-day, coupled with the financial uncertainty in the non-profit sector.

The Arc’s Board of Directors recently announced that its Chief Executive Officer, Peter Berns, would be leaving the organization upon expiration of his contract in February. Since 2008, Berns has been at the helm of The Arc, the world’s largest community-based organization of and for people with IDD and their families. Under his leadership, the organization has charted an ambitious path of growth and modernization as it carries out its mission of “promoting and protecting the human rights of people with IDD and actively supporting their full inclusion and participation in the community throughout their lifetimes.”

Rodriguez will work alongside an established leadership team while the search for a new CEO is conducted. Meanwhile, the Board of Directors has put together a committee comprised of board members, chapter and disability community leaders, and national office staff and self-advocate representation to conduct a sweeping national search. Soon, they will be selecting a professional search agency to work with them.

 

A man in a blue suit with a red tie stands in front of a doorway at the White House. In the background is a blue oval plaque on the wall with white text that reads "The White House" and behind him is an American Flag.

Disability Justice Advocate Neli Latson Joins White House Black History Month Event

/in , /by The Arc

Washington, DC – Neli Latson’s story of unjust prosecution and abuse in the criminal legal system was heard at the White House today, bringing attention to the need for better treatment of people with disabilities in interactions with law enforcement.

Latson was invited to speak with high level government officials during a Black History Month event with other young advocates on a variety of social justice issues.A man in a blue suit with a red tie stands in front of a doorway at the White House. In the background is a blue oval plaque on the wall with white text that reads "The White House" and behind him is an American Flag.

“Being at the White House today was not only an honor, it was a dream come true. For years, when I was locked up in solitary confinement, I daydreamed about getting out and telling my story. I wanted to stand up and speak out so that other autistic people, and other Black people, and other Black and autistic people, would not experience the terrible things that happened to me,” said Latson.

In 2010, Latson was an 18-year-old high school student, waiting outside his neighborhood library in Stafford County, Virginia for it to open. Someone called the police reporting a “suspicious” Black male, possibly with a gun. Latson, who has autism and intellectual disability, had committed no crime and was not armed. The resulting confrontation with a deputy who came to investigate resulted in injury to the officer when Latson, whose autism is accompanied by tactile sensitivity, resisted being manhandled and physically restrained. This was the beginning of years of horrific abuse in the criminal legal system. Prosecutors refused to consider Latson’s disabilities, calling it a diagnosis of convenience and using “the R-word,” and rejected an offer of disability services as an alternative to incarceration. Instead, Latson was convicted, sentenced to prison and punished with long periods of solitary confinement, Taser shocks, and the use of a full-body restraint chair for hours on end for behaviors related to his disabilities.

The Arc of Virginia and national disability advocates, including The Arc’s National Center on Criminal Justice and Disability and the Autistic Self Advocacy Network, urged then-Virginia Governor Terry McAuliffe to pardon Latson.  In 2015, he was granted a conditional pardon. Although this released Latson from prison, it required him to live in a restrictive residential setting and remain subject to criminal legal system supervision for ten years. The terms meant Latson could be sent back to jail at any time, causing constant anxiety.

Finally, in 2021, then-Virginia Governor Ralph Northam granted Latson a full pardon, giving him his freedom. Since this development, Latson now lives in his own apartment and receives community-based supports.

“It’s gratifying to have the White House acknowledge the importance of Neli’s advocacy for a society that treats all people with disabilities, particularly Black people, with dignity and respect. The painful truth is that Black people with disabilities live at a dangerous intersection of racial injustice and disability discrimination, and Neli’s life was forever altered by his experience,” said Tonya Milling, Executive Director of The Arc of Virginia, who attended the event with Latson.

“This case galvanized disability rights activists, bringing national attention to overly aggressive and sometimes deadly policing, prosecution and sentencing practices and to the horrifying mistreatment of people with intellectual and developmental disabilities in jails and prisons. Neli’s advocacy is a testament to his strength and desire to make sure no one is treated like he was in that moment that forever changed his life,” said Leigh Ann Davis, Senior Director, The Arc’s National Center on Criminal Justice and Disability.

“I still have a lot of trauma to overcome. I am fearful and it’s hard for me to do a lot of things. At the same time, I am happy that the activism and publicity about my case not only helped me, but also helped to make change for others,” concluded Latson.

A selfie of a father and his teenage son, sitting in a car and smiling. The father is wearing sunglasses.

School Should Be a Safe Place for Students, but Isaac Was Assaulted

/in , /by Pam Katz

A selfie of a father and his teenage son, sitting in a car and smiling. The father is wearing sunglasses.Isaac has autism and mental health disabilities. Isaac sometimes gets very focused on certain things and struggles to adjust or focus on other things. To help him in school, a 504 plan was created so that teachers and other staff at the school would know how to support and redirect him safely.

When Isaac was 15 years old, that plan failed when he was put in a chokehold at his school by the school resource officer. Now 22, Isaac and his dad, John, shared with us about the incident and how it impacted Isaac’s school life.

Tell us about the choking incident. What happened?

ISAAC: I was in band class. Our school called students to the gym for a sex education class. The teachers told us you didn’t have to go if you didn’t want to, or if you signed a paper saying you weren’t going to go. I told them I didn’t want to go, but they still forced me to go. Since I didn’t want to be in the room, I went to the other side of the gym to nap until the class was over.

One of the teachers didn’t like that I was napping and ignoring the class, and they asked me which teacher I had for the period. I didn’t answer because I felt like the teacher was trying to get me in trouble, even though I had not done anything wrong. When I refused to respond, they called in two administrators. The administrators told me to give them my backpack and search through it. I refused to give it to them, as they did not have the right to take my things for no reason. They then tried to take my backpack from me forcefully. Finally, the school resource officer got involved. He took my bag from me.

I was still trying to get my bag back from them. I was not fighting back but resisting the situation. The officer forced me to the ground. He stood side-by-side with me, placed his left leg in front of both of my legs, and lifted his leg backward. This swept my legs from underneath me and caused me to land on my stomach. Then, since I was still resisting and trying to get back up, he got on top of me and started to choke me. I stopped resisting after about 10 seconds because I did not want to black out. After that, he let me go and began searching my backpack because he claimed that the administrators thought I had drugs or a bomb in my bag. I obviously did not have anything like that in there.

What happened after the incident?

ISAAC: The afternoon after the incident, the school told my mom that they had wanted to search my backpack, and I resisted this. They did not share that I was put in a chokehold. My mom told the school that I had a 504 plan that describes how to support me if I resist what the staff asks me to do; however, the administrators explained that they had so many kids with 504 plans that they could not have possibly known which students do or don’t have plans—or be expected to follow them in the heat of the moment.

Later that week, the school resource officer told me he was sorry for the run-in, but did not acknowledge that he or the school may have been in the wrong. He did at least try to get to know me better and have a civil relationship from that point on.

No one from the school ever told my mom or dad that I was in a chokehold or taken down by the school resource officer.

I didn’t tell them either. I was new to the school. I am also not a tall guy and, at the time, was 106 pounds. I was a new, short, small kid that no one knew. I didn’t want to be a target for bullying. People at my new school were already wary of me before the incident because of how I reacted to things and because I always wore a hood because I was always cold. After the incident, a rumor started that the officer had tackled me.

Afterward, people feared me. People began to worry and ask whether I would shoot up the school. I was okay with people being scared of me because I was just happy that people were not trying to bother me or bully me. And I had friends who knew me. However, I was portrayed as the bad guy by classmates and at school.

John, how did you and your wife discover the incident?

JOHN: I was at the high school several months later to speak to a class at the teacher’s invitation. When I was introduced, it was mentioned that I was Isaac’s father. A student at the side of the room said, “I know that dude. He’s crazy!” After that, I asked Isaac if something happened.

As a parent, I was extremely disturbed. Nobody likes to hear that their child is bullied or being targeted. I had a few experiences with bullying as a child, and no one wants that.

I’m also a professional disability advocate. At the time, I had also just watched the reports around Ethan Saylor, who was tackled and suffocated to death. There were also some reports of teachers being tough and not accommodating to students with disabilities because they don’t understand how to help them.

When my wife and I discovered Isaac was put in a chokehold, it was months later. At the time, there was not much more we could do but try to fix the rules that caused the incident. But that’s not enough—changing the rules does not change people’s attitudes.

When people think of autism, they see Rain Man or The Good Doctor. With Isaac, you would not know he had autism unless you knew him very well. He does not present how people typically think of someone with autism. As a result, he sometimes gets pushed around more than other kids.

The incident should never have happened. For the administrators to talk it down or brush it off without informing us is the most disturbing thing. He was assaulted—and no one bothered to tell us about it.

What do you want other people to know about the use of restraint and seclusion?

JOHN: I want them to know the same thing my father taught me: there’s never a reason to resort to violence. I have never yet seen, even in the worst situations, a need to escalate to violence because people are not responding clearly and immediately to demands. There are ways to get the desired result, but sometimes, you have to dig a little deeper. There are always other options.

What happened could have been averted if they had gotten to know my son. How many people use seclusion and restraint instead of getting to know the kids they support? Educators need a better sense of what is happening and how to help the kids they educate. In our home state of North Carolina, educators only need eight hours of training to work in a classroom for kids with disabilities. How can you expertly support kids with only eight hours of training? Certainly, more could be done to prepare teachers.

ISAAC: I want other kids with disabilities to know the same thing my father taught me: there’s never a reason to resort to violence. And that they should wait until your parents get there to speak with the school. Quite literally, your parents are your lawyer. Teachers won’t always listen to you. It would be best to have your folks with you to argue for you and advocate on your behalf. To parents, you may be angry about an incident, but you still need to be civil and work with the school because otherwise, the school won’t help your child; they may suspend or expel them instead. You must do your best to be civil and willing to work together to keep your student at school.

JOHN: I’m proud of my son for what he just said. Previously, I spent time as a trustee on a school board. People would ask over and over what school is the best for kids with disabilities. The critical difference in outcomes for kids with or without disabilities is parents being involved. They know who we are and that we are not just angry parents but also active and involved in the school. It changes the educators’ attitudes, and they see our child more as a person. They become more willing to engage with parents and intervene before things blow up.

Parents should also know what their and their kids’ rights are and be able to call people out when needed. Isaac is my fifth child. I know our rights and how to advocate with him because I made mistakes and learned with my previous children. Sometimes, administrators will say things that do not respect the rights of kids and parents. They may push boundaries that they should not do so and rely on parents not to know their rights. It can be intimidating. Parents must know their and their kids’ rights and advocate.

A graduate stands in front of a tree on a sandy spot with boulders around him. He is wearing a cap and gown, holding a diploma, and smiling.

A Genetics Journey To Support What’s Possible in Life

/in /by Pam Katz

Ellen Feldman has a passion for increasing research in the intellectual and developmental disabilities (IDD) field and continuing her ongoing advocacy in that arena. She currently serves as the Central Region Vice President for The Arc New York, and as a member of the Board of Governors and Executive Committee.

So, what inspires Ellen to devote her time and energy to this field? The answer is simple – her son.A middle-aged man stands in a kitchen with white cabinets. He is wearing a red shirt, and apron, and is using a cooking utensil on a sheet pan of food.

Ellen’s son, Matthew, is 40 years old; he receives supports and services through ACHIEVE, a chapter of The Arc, and has lived in a group home since he was 21. When Matthew was 14 months old, he was diagnosed with IDD and several associated symptoms – all with an unknown cause.

“We went to see the head of pediatric neurology at Columbia Presbyterian Hospital many years ago, and they couldn’t tell us what caused Matthew’s IDD,” Ellen said. “They couldn’t give us a real diagnosis. They basically told us that he’s going to be significantly delayed – he’ll never go to college and he’ll never drive a car. This news was crushing, of course. So we stumbled our way around, got him into early intervention programs, and did whatever we could.

“We’ve been down the path of lots of different hospitals and development centers, always looking – not for cures – but for ways to help him live his best life,” she said.

Ellen reached out to The Arc New York network for recommendations of an objective third party that might help her gain more answers. Ellen connected with a geneticist at Columbia Presbyterian Hospital, and was sent an at-home genetic testing kit. Her family did a series of saliva swabs and returned the package to be analyzed.

On Labor Day Weekend, she received a call that her son has a rare genetic disorder called SynGAP1.

There is currently no cure or specific treatment for the underlying condition that causes

SynGAP1. However, learning more about the symptoms related to the genetic disorder can help individuals find relief and better understand how to manage them. For instance, Matthew has been having staring seizures for a while, and when he comes out of these seizures, he has aggressive episodes.

“There was an incident where Matthew was staring at another individual, staff asked him to stop staring, and he wouldn’t stop,” Ellen said. “This continued until he all of a sudden got aggressive and angry. We now know that when you come out of a seizure, there’s a period of delirium where you’re confused and don’t know what just happened – this confusion triggers an aggressive response. Recognizing these symptoms and being calm instead of admonishing Matthew can help prevent these situations from happening.”

Genetic testing can also lead to the discovery of secondary conditions connected to SynGAP1. Ellen learned her son is at a higher risk of colorectal cancer, and as a result, he’s going for his colonoscopy and endoscopy at the age of 40 instead of 45, the recommended age for those not at risk.

GENETIC TESTING

Ellen understands that some might be apprehensive about genetic testing, especially when it can cost upwards of $3,000. However, she wants to share an opportunity for individuals to potentially get free and convenient genetic testing at home.

She discovered Probably Genetic, a company offering free genetic testing paid for by sponsors. The company’s website provides people with a questionnaire to determine if they are eligible for free testing. A physician reviews the answers, and if the person is considered to be a good candidate, they are sent a test that only requires a saliva sample. The test is returned with prepaid shipping and analyzed in the lab. In about eight weeks, a geneticist calls to review their clinical genetic report.

The SynGAP Research Fund also notes these genetic testing options:

  • Ambit provides free access to genetic counseling and testing to all patients who qualify. Testing is available in all 50 states and is open to all ages. Qualifications include: children age seven and under with at least one seizure; or anyone over seven with at least one seizure, one developmental delay and on at least one seizure medication.
  • Invitae’s Behind the Seizure free genetic testing program is offered to any child in the US or Canada under the age of eight years old who has had an unprovoked seizure. Australian residents can visit this website.

SYNGAP1 mutations are suspected to be the underlying cause of approximately 1-2% of all Intellectual Disability (ID) cases, making it one of the most common genetic causes of ID, similar to more well-known syndromes like Fragile X, Angelman and Rett Syndrome.

SynGAP1 mutations are significantly underdiagnosed. The disorder was only discovered in 2009, and testing didn’t begin until 2015, so any genetic testing completed before 2015 would not have shown SynGAP1.

Additionally, many families receive a diagnosis like autism, intellectual disability, or epilepsy and stop their diagnostic search, thinking they have reached a conclusion.

“I stopped looking for a diagnosis and a cause years ago and just focused on what I could be doing for my son,” Ellen said. “The more information we can load into research databases the more data there is for researchers to use. We’ve got to continue looking ahead to the future and always be thinking of what more we can be doing.”

 

 

The Arc logo

Get Ready for Medicaid Renewals in 2023

/in , , /by Pam Katz

As COVID-19 rapidly spread across the U.S. in March 2020, Congress declared a public health emergency and passed legislation that gave states more money for Medicaid if they met certain requirements. One of the main requirements was that people would be able to keep their Medicaid health care during the COVID-19 public health emergency.

As a result of recent legislation, the continuous enrollment requirement will end in early 2023 and states will soon be restarting Medicaid eligibility reviews. For many with disabilities, this means that they may lose critical Medicaid services and supports. Based on estimates, up to 15 million people could lose their current Medicaid coverage.

States may start the renewal process as early as February 1, 2023. Fortunately, there are steps you can take to be ready:

  1. Verify that your contact information is updated. Make sure your state Medicaid agency has your current mailing address, phone number, email, or other contact information so they can easily contact you about your Medicaid coverage.
  2. Check your mail regularly. The state Medicaid agency will mail you a letter about the status of your Medicaid coverage. This letter will also let you know if you need to complete a renewal form to see if you still qualify for Medicaid.
  3. Complete and send in your renewal form (if you get one). Fill out the form and return it to your Medicaid agency to help avoid a gap in your Medicaid.
  4. If your Medicaid coverage has ended, visit HealthCare.gov to find an affordable, comprehensive health plan.

For more information, you can visit Medicaid.gov/renewals.

The Arc logo

Statement on the Killing of Tyre Nichols

/in /by The Arc

Washington, DC – As the public learns more about the killing of Tyre Nichols, The Arc stands in solidarity with his family and friends.

“Yet again, the nation watches another video exposing police violence against a Black man after a traffic stop.  We are horrified to witness the brutalization of an unarmed man. Tyre had Crohn’s disease, which made the blows against his very lean body more damaging. Another dying Black son is crying out for his mother and another Black life ended by people who pledge to protect all of us in our communities.

“We speak out in solidarity with Tyre’s family and friends because so many people in The Arc watch with horror as this happens again, and again – and our minds also go to the fear in all of us that people with disabilities within BIPOC or other marginalized communities can end up in the same deadly circumstances as Tyre, during a routine encounter with police.

“The Arc believes everyone belongs and will advocate tirelessly to make this happen. With their intersecting identities, all members of the disability community are valued, respected, and celebrated for who they are. And that belief is steadfast in solidarity with the Nichols family and friends, whom we offer our deepest sympathies and condolences for their loss,” said Peter Berns, CEO, The Arc.

As the largest community-based organization advocating for and with, and serving, people with intellectual and developmental disabilities (IDD) and their families, The Arc works tirelessly to uphold our vision “for people with IDD to be valued members of their communities, have the opportunity to achieve their full potential and a future that is secure.”

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. The Arc has 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 and without regard to diagnosis.

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.

The United States Capitol Building

A Recommitment to Care With the Introduction of the Better Care Better Jobs Act

/in , , /by Pam Katz

Today, Senator Bob Casey (D-PA) introduced a landmark piece of legislation to invest in the country’s care economy and make important improvements to Medicaid home and community-based services (HCBS).

The care workforce is a vital part of community living and inclusion for people with disabilities—and yet the system that supports it continues to be underfunded and complicated to navigate. Hundreds of thousands of people with intellectual and developmental disabilities remain on waiting lists for the services they need to live in and thrive in their communities. The new Better Care Better Jobs Act will address these deficits through several key improvements, including a permanent increase in federal Medicaid funding for eligible states, adding over $300 billion toward expanding and improving access to HCBS.

The proposed updates to Medicaid complement President Biden’s American Jobs Plan—which targets the current care infrastructure crisis and aims to fortify it for the future—by expanding eligibility, requiring coverage for personal care services, expanding supports for family caregivers, addressing the direct care workforce crisis by raising wages, and more.

“People with disabilities deserve the supports to live meaningful and dignified lives in their communities. Their care workers deserve the pay and hours to avoid burnout and turnover. And their families deserve the aid of care workers so they do not have to quit or cut their hours to fill in the gaps. It’s 2023, and we should not have to still be fighting for these basic needs so that everyone has the ability to build the life they want.

“The Arc is, as always, ready to rally support for these much-needed changes and looks forward to making sure Congress knows the difference that they would make in the lives of countless people with disabilities,” said Peter Berns, CEO, The Arc.