A mom, dad and young man stand around another young man who is in wheelchair. They are standing in their living room.

Families Like Debbi, Josh, and Victor Need Your Support.

/in , , /by Pam Katz

The Arc has been advocating for decades to help family caregivers—advocating for health insurance, for paid family and medical leave, and respite services and other family supports. And this advocacy has taken on even more urgency during the COVID-19 pandemic.

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Families like Debbi, her husband Victor, and their son Josh need our support more than ever.

“Josh was born about eight weeks early with a grade four brain hemorrhage, so 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.”

Debbi and Victor struggled to hold onto their jobs while managing Josh’s complex medical needs and raising their two other children. Victor was often called away for active duty with the military. Debbi often worked during the night to meet her deadlines and hold onto the health insurance they depended on to pay for Josh’s medical care.

“And that insurance, it was always in the back of my mind, was what was keeping Josh alive.”

The challenges of balancing work and family caregiving responsibilities began to mount. Debbi struggled to get approved for unpaid leave and as Josh’s care needs increased, Debbi had to reduce her working hours substantially. This was a financial burden for the entire family and increased her worry about losing her job altogether.

Reflecting on that time, Debbi explains:

“It was a very difficult time emotionally, physically, and also financially. If I had been able to get paid leave, our struggles would have been so much less critical.”

Like Debbi, most Americans cannot take extended unpaid time away from work to care for a family member. Nor are they able to wait on years-long waiting lists for supports and services that may never come.

That’s why The Arc is working to make a national paid family leave program a reality for ALL who need it.

That’s why we’re advocating for home and community-based services to be available when they’re needed most.

Family caregivers, and their loved ones with intellectual and developmental disabilities, experience challenges in their daily lives that you and I never even have to think about. The Arc must be there alongside them. But we can’t do it without you.

You can help overwhelmed families navigate the complex developmental disabilities services systems for infants, children, and adults with IDD by giving to The Arc.

Can we count on you to stand with family caregivers by supporting The Arc today?

Join us and make a difference. Donate to support our critical advocacy today and sign up for updates to advocate with us when it matters most.

Your gift will be matched!

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House of Representatives Passes Historic Disability Funding Through Build Back Better Plan

/in , , , /by Pam Katz

“We need the Senate to understand all that is on the line”

Today, the U.S. House of Representatives passed President Biden’s Build Back Better plan, bringing us one important step closer to making significant investments in our country, in the lives of people with disabilities and their families, and the direct support workforce. The reality is change can’t come soon enough for millions of people.

The proposal includes $150 billion for Medicaid home and community-based services, or HCBS, which provide the support people with disabilities need to be a part of their community, and better pay for the workers who support them.

“This plan is major progress in our country doing what we know is right: putting vital dollars behind something that really should never come with a price tag – basic humanity. People with disabilities, families, and the direct support professionals who support them are struggling to persevere through the hardest of times while suffering in unprecedented ways. And the clock is ticking on how much more they can take,” said Peter Berns, Chief Executive Officer of The Arc.

For years, the service system that people with intellectual and development disabilities (IDD) and their families rely on, Medicaid, has been underfunded. Millions of adults and children all over the country are stuck on waiting lists for HCBS, the direct care workforce is underpaid and undervalued – the quality of services suffer, and too often, unpaid family caregivers are left to fill the gaps, struggling to balance work and family responsibilities.

Build Back Better expands access to services for people with disabilities on waiting lists and starts addressing the direct care workforce crisis, including raising wages and creating more jobs. We need this plan – and more, and we urge the Senate to move swiftly and further humanize this deal, by adding more funding for HCBS.

Congress has heard the outcry from across the country on the need for paid leave, and included a national program so no one has to choose between taking care of themselves or a family member, and their paycheck. The Arc has long advocated for a national paid leave program for family caregivers. The pandemic forced millions of people to choose between their own health, the well-being of their families, and their livelihood.

“Taking time off to care for the people we love should not be so hard. The pandemic has only underscored the urgency of implementing a national paid leave policy, and so the time is now to do the right thing for all caregivers,” said Berns.

The Arc is also pleased that the proposal includes:

  • The expansion of the Supplemental Security Income (SSI) program to over 3 million people with disabilities living in U.S. territories
  • The extension of improvements to the Child Tax Credit for one year and permanent expansion of the credit to the lowest income families
  • The expanded Affordable Care Act premium tax credits through 2025
  • The extension of improvements to the Earned Income Tax Credit for low-wage workers with disabilities.

“We need the Senate to understand all that is on the line. The futures of people with disabilities, families, and this critical workforce depends on this moment,” said Berns.

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The Arc Celebrates CVS Health Commitment With Disability Leaders to Affordable and Equitable Access to Health Care

/in , /by Pam Katz

Yesterday, CVS Health announced the withdrawal of its appeal before the Supreme Court that sought to limit the scope of civil rights protections for people with disabilities under federal law. In collaboration with leaders of a number of national disability organizations, CVS Health will seek policy solutions to protect equitable access to health care for all Americans. We celebrate this victory for the disability rights community.

“Disability rights laws were enacted to provide comprehensive protections against discrimination—including unintentional conduct with discriminatory effects—and to ensure people with disabilities have meaningful access to public life. We are pleased that CVS Health came to the table with the disability community, listened, and acted to ensure the rights of people with disabilities continue to be enforced to the full extent of the law as they were intended,” said Shira Wakschlag, Senior Director of Legal Advocacy and General Counsel at The Arc.

The Arc was part of a large coalition of disability and civil rights organizations that filed an amicus brief in CVS V. Doe arguing that long-standing Supreme Court precedent makes clear that much discrimination against people with disabilities comes from “benign neglect” or thoughtlessness — and that removing the ability to get relief from such discrimination would undermine the purpose and history of Section 504 of the Rehabilitation Act. Along with a number of other organizations, The Arc also sent a letter to the CVS Board of Directors calling on the company to drop its Supreme Court appeal.

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Child Tax Credit Helps Working Moms Like Molly Stay Afloat and in the Workforce

/in , /by Pam Katz

A woman sits on the ground with mulch and a fallen tree around her. On her lap is her young son. She is wearing a mask and holding him affectionately. For moms like Molly, the past four months have meant long-overdue help in making ends meet. Molly works full time and manages the care for her 15-year-old son, Reid, who has a condition called Angelman’s Syndrome. Reid requires specialized caregiving for feeding, diaper changes, and constant monitoring for safety due to seizures and mobility issues.

What has been the difference in the last four months? The Child Tax Credit (CTC), a monthly cash benefit for children for which low and middle-income families can qualify. It has helped families like Molly’s pay for rent, food, child care, health care co-pays, school supplies, and other expenses across the country. For caregiver parents, it’s an especially needed benefit. As Molly says, “I am using this to pay for help, food, and transportation so I can stay afloat when forced to leave work to be a caregiver when no one else can and give Reid’s elderly grandma a break once in a while so she can continue to help with his care going forward.”

But Congress is currently debating if they should continue these crucial payments. Some legislators want to reduce this credit, limit the families who can receive it, and take it away from some of the lowest-income families by instituting a work requirement. This change would disproportionately impact parents who took time away from work to care for their child with a disability or complex medical needs. As Molly says:

“We have always had a hard time getting caregivers to help in the home and rely heavily on Reid’s 73-year-old grandma to fill in the scheduling gaps.  A few years ago I gave up working in the clinic as a prosthetist and as an instructor at the University of Washington and took on a work-from-home role with the corporate office of my company.  This was necessary in order to have enough schedule flexibility to ensure Reid is cared for in the summer and enabled to attend school the rest of the year.  Reid qualifies for Medicaid and has a Basic Plus Waiver for in home caregivers and other assistance. Over the past two years, I have had to take unpaid time off work, accept furlough from my job, and rent out half my house in order to make up for Reid not being in school and the lack of available Medicaid-paid caregivers.” The CTC is making a critical difference for Molly, Reid, and many more families, so penalizing caregiver parents is unacceptable.

As we learned when a work or earnings requirement was proposed in Medicaid a few years ago, these unnecessary rules only create costly, bureaucratic processes that restrict access. They often penalize people who are working, but who need to leave the workforce for a period of time for their own health reasons or to take care of a loved one. As Molly says: “Every time I’ve had to take time away from my paid job to be a caregiver for Reid, I am scared to death that I will lose my job and jeopardize my career prospects.  I have worked for years to be a good prosthetist and excellent corporate employee.  The small amount of assistance the tax credits give for caregiving is not in any way an incentive to leave my paid job. They are only enablement to continue working at BOTH of the jobs in which I am fulfilled as a productive member of society.”

A work requirement would disproportionality harm parents with disabilities and families with children with disabilities. It is past time for Congress to recognize that caregiving is work and provide essential supports to families through the Child Tax Credit.

A young man sits smiling on a white couch with white blinds in the background. He is wearing a black shirt with the yellow word "ARMY" on it.

Disability Is Not a Crime. Support Our Fight for Justice.

/in , /by Pam Katz

Too often, disability is criminalized due to a lack of understanding—by both the public and first responders. Disability-related behaviors can be perceived as threatening or suspicious, and it’s estimated that one third to half of all people in the U.S. killed by police have a disability. The Arc is working hard to protect the rights of people with disabilities to exist safely in their communities—people like Neli Latson.

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In 2010, Neli Latson was an 18-year-old special education student with autism who was sitting on a bench outside his neighborhood library waiting for it to open. Someone called the police reporting a “suspicious” Black male, possibly with a gun. Neli had committed no crime and was not armed, but being a young Black male with autism,  he would soon experience the tragic results of a system stacked against him.

When approached by a deputy, who quickly found that he was unarmed, Neli tried to walk away but was grabbed by the deputy several times. He reacted with a fight-or-flight response, a common instinct for people with autism.—resulting in an altercation. Neli was arrested and charged with resisting arrest and assaulting the officer.

What should have been an innocent chance encounter with the police spiraled out of control and marked the beginning of years of horrific abuse in the criminal legal system. Prosecutors refused to consider the role Neli’s disability played in his reaction to the police officer, dismissing it as a diagnosis of convenience. They refused to understand that he needed developmental disability services, rather than incarceration. Instead, Neli was convicted and sentenced to 10 years in prison, where he was 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.

As Neli languished in prison, The Arc joined forces with Neli’s attorneys and a coalition of advocacy and racial justice organizations to demand justice. In 2015, we won a conditional pardon for Neli. But he was forced to live in a court-supervised residential setting, where he was treated harshly by staff who lacked understanding of autism. He lived in fear that he could be sent back to jail at any time.

The Arc and the coalition never gave up the fight.

In 2021, Neli was finally granted a full, unconditional pardon and provided with the disability support services he should have received in the first place. Neli is on his way to living a full—and free—life.

But our work is not done. The sad reality is that people with intellectual and developmental disabilities and their families are too often forgotten and left behind in our society. Many like Neli are denied justice, and frequently hurt, due to the unjust biases of people who simply fail to recognize and respect their humanity.

For more than 70 years, The Arc has worked to change that as the only nationwide advocacy and social services nonprofit that works solely on behalf of people with intellectual and developmental disabilities. We work across the criminal legal system to support victims, suspects/defendants, and incarcerated persons with disabilities to receive the accommodations they need and are entitled to while navigating the system.

Can we count on you to stand with them today?

Join us and make a difference. Donate to support our critical advocacy today and sign up for updates to advocate with us when it matters most.

Your gift will be matched!

DONATE NOW