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Medicaid Work Requirement in Debt Ceiling Bill Puts People With Disabilities at Grave Risk

/in /by The Arc

Navigating these complex and extreme benefit tests will be particularly difficult for people with intellectual and developmental disabilities.

Today, the U.S. House of Representatives passed H.R. 2811, The Limit, Save, Grow Act of 2023, which includes radical new work requirements for Medicaid enrollees in exchange for lifting the debt ceiling. This Medicaid benefit test will harmfully transform our country’s primary health care for people with disabilities, deepen health inequities experienced by people with disabilities, and do little to boost employment. The Arc urges Senators and the President to reject this extreme benefit test and other harmful cuts contained in the bill as they work towards a deal to lift the debt ceiling.

The bill requires Medicaid beneficiaries to meet an 80-hour per month work-reporting requirement unless they meet an exemption. This doesn’t just apply to new enrollees or people eligible under the Affordable Care Act’s Medicaid expansion provisions – it applies to everyone ages 19-55 receiving Medicaid. Millions of enrollees will be forced to go through an obstacle course and navigate complicated red tape to keep coverage, including many who rely on home and community-based service waivers and Supplemental Security Income. The Congressional Budget Office estimates that 1.5 million adults will lose federal funding for their Medicaid coverage and the bill will cut Medicaid by an estimated $109 billion over the next decade.

“Medicaid is a lifeline for people with disabilities,” shared David Goldfarb, Director of Long-Term Supports and Services Policy at The Arc of the United States. “This policy not only undermines their access to life-sustaining health care and community living, but it also undermines their inclusion in the workforce. Navigating these complex and extreme benefit tests will be particularly difficult for people with intellectual and developmental disabilities, over 45% of which have a co-occurring health condition. In addition, many of the exemptions for the rule are vague and highly subject to the stigmas and biases of those with the power to determine eligibility. Millions of people who rely on these safety net programs will fall through the cracks in a system that is already difficult to grasp – and these changes will compound that problem.”

People with disabilities would need a doctor or other medical professional to deem them “physically or mentally unfit for employment,” which is not a standardized disability determination. Many people with disabilities already face barriers to accessing health care and discrimination from providers, which, if this legislation passes, would now come with the risk of losing Medicaid coverage. There is also an exception for caregivers who give care to an “incapacitated person.” This terminology is vague, subjective, crude, and could extremely limit the definition of caregivers.

All of this chaos and administrative burden comes at the misguided hope that this new benefit test will boost employment opportunities and outcomes. In fact, most adults that utilize Medicaid are working, the majority of which are working full-time. Those who are not working or are working part-time face barriers to employment, such as having a disability or caregiving responsibilities. What’s more, Arkansas had a short-lived work requirement for Medicaid back in 2018, which failed to increase employment and caused 18,000 people to lose coverage. The reality is that having Medicaid supports people’s ability to join the workforce, not hinders it.

The proposal comes at a time when:

  • states are expected to drop millions of beneficiaries due to the end of the Medicaid continuous coverage requirement during the COVID-19 pandemic;
  • over 650,000 people with disabilities desperately wait for home and community-based services, some of them for years;
  • and the nation is experiencing major labor shortages in health and long-term care.

Congress should be focusing on ways to expand access to services, not on cutting Medicaid.

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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. 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 thearcwebdev.wpengine.com 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@thearcwebdev.wpengine.com

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Comcast & The Arc Partner To Expand Tech Training and Special Education Advocacy for People With Disabilities

/in /by The Arc

Washington, DC & Philadelphia, PA, April 11, 2023 – Comcast today announced that it is expanding its partnership with The Arc of the United States to foster digital and advocacy skills in people with intellectual and developmental disabilities (IDD) and their families. The expansion comes in the form of Comcast providing two new grants to The Arc totaling $710,000. The funding will allow The Arc to establish more Tech Coaching Centers at chapters across the country and offer The Arc@School special education advocacy curriculum to Spanish-speaking families. These programs have already helped over 3,500 people with IDD develop more independence, equity, and opportunities for their future.

“Far too many people with IDD are left behind in our society,” said Ruben Rodriguez, COO and Acting CEO of The Arc of the United States. “A quality educational experience and understanding of technology is fundamental in creating equal opportunities of all kinds. These systems continue to deepen extraordinary disparities among people with IDD, especially underrepresented communities and low-income families. Our continued partnership with Comcast is making opportunity a reality for all people with IDD. It’s chiseling away at our society’s inequities and helping everyone – no matter your disability – build bright futures.”

A first grant of $560,000 will support The Arc’s Tech Coaching Centers at 10 locations across the country. It will also expand the training model to include caregivers and family members of people with IDD to ensure they can support in the implementation of technology across all environments, including assistive technology.

With technology being an increasingly vital part of navigating and participating in today’s plugged-in world, including transportation, employment, recreation, and social interaction, people with IDD face unique barriers to understanding and adopting digital tools. This is exacerbated by a higher rate of poverty and lower overall income among people with IDD. Since 2014, Comcast has supported The Arc’s Tech Coaching Centers, reaching nearly 2,500 people with IDD through 19 chapters and giving them access to devices, services, and training that advance measured outcomes in employment, health, independent living, education, and interpersonal connections.

“We know that digital skills training can open new doors to opportunity and help people living with disabilities gain independence,” said Dalila Wilson-Scott, EVP and Chief Diversity Officer of Comcast Corporation. “That’s why we are proud to continue our long-standing partnership with The Arc to reach even more people with IDD – including their caregivers and families — and to create pathways that can help enrich their lives.”

A second grant of $150,000 will go towards advancing efforts to help marginalized communities better advocate for their education. This investment will allow The Arc to fully translate The Arc@School curriculum into Spanish to better meet this population’s needs and increase access to the content.

Academic achievement and graduation rates for students with disabilities lag far behind their peers, trends caused by inordinate discrimination, suspensions, and isolation within school settings across the country. In 2016, The Arc created The Arc@School, an evidence-based, self-paced online training program designed to help families, educators, and advocates navigate the special education system. Since 2021, Comcast has partnered with The Arc to connect underserved communities to these educational advocacy resources. To date, more than 500 families of color and low-income households have been given free access to The Arc@School, in addition to a facilitation guide, Spanish language overview of the special education process, and cultural competency resources and sections.

These grants were distributed through Project UP, Comcast’s $1 billion commitment to reach tens of millions of people in order to advance digital equity and help create a future of unlimited possibilities.

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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. 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.thearcwebdev.wpengine.com 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.

About Comcast Corporation: Comcast Corporation (Nasdaq: CMCSA) is a global media and technology company. From the connectivity and platforms we provide, to the content and experiences we create, our businesses reach hundreds of millions of customers, viewers, and guests worldwide. We deliver world-class broadband, wireless, and video through Xfinity, Comcast Business, and Sky; produce, distribute, and stream leading entertainment, sports, and news through brands including NBC, Telemundo, Universal, Peacock, and Sky; and bring incredible theme parks and attractions to life through Universal Destinations & Experiences. Visit www.comcastcorporation.com for more information.

Media Contacts:
Jackie Dilworth, dilworth@thearcwebdev.wpengine.com
Kim Atterbury, k.kim_atterbury@comcast.com

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Survivors of Sexual Violence With Developmental Disabilities in LGBTQ and Transgender Communities Speak Out

/in /by Pam Katz

By: The Arc’s Talk About Sexual Violence Project and The Rainbow Program

How bias and discrimination impact survivors with developmental disabilities within the LGBTQIA+ community

Survivors of sexual violence with developmental disabilities (DD) within the LGBTQIA+ community often experience bias and discrimination which impacts their access to services:

  • There is a lack of sexuality education among this population which can increase their risk of being sexually violated
  • Society tends to minimize or ignore the sexuality of people with DD or not realize that they are sexual beings with sexual feelings, desires and needs.
  • Survivors often feel misunderstood and judged, so they don’t feel safe reaching out for help
  • They often try to hide who they really are
  • They face painful rejection by family and friends
  • They can also face discrimination at work
  • They are not allowed to make choices or supported by others to make their own choices
  • They can feel isolated because of a lack of support to help them meet and date others or establish long-term, fulfilling relationships
A woman in a bright pink sleeveless blouse stands smiling with her arms on her hips. She has blonde hair and behind her is the siding of a house.

Pauline Bosma

While there is little data on the percentage of disabled LGBTQ+ people who are victimized by crime, the statistics on the victimization of disabled people and LGBTQ+ people individually display the need for further investigation and support.

“People might assume that everyone is heterosexual and so they assume that consensual same-sex relationships are abuse. They might feel like they have no one to trust if they want to report abuse. Sometimes when LGBTQ+ people with IDD report same-sex abuse, people think it was consensual, even if it was not.” – Pauline Bosma, Rainbow Program Coordinator

(Rainbow groups are groups for self-advocates who are members of both the disability community as well as the LGBTQ+ community.)

How can we address this bias and discrimination?

In order to address the bias, we have to educate society about two key things: how we can effectively include the LGBTQIA+ community in sexual education and violence prevention and  how to provide much-needed accommodations that allow survivors to feel and actually be included in their own sexual education, justice, or healing process.

Having an attitude and core value of inclusion means:

  • You actively listen to survivors with curiosity and compassion
  • You believe them
  • Your personal values don’t impact the quality of care you provide
  • You see them as a trauma survivor first, not their disability

Providing accommodations for survivors can look like this:

  • You speak to them directly, not to their care provider or family member
  • You ask them if they want peer support
  • You use active listening skills when talking to them
  • You show real concern for them and are patient with them
  • You comfort them in ways they can understand
  • You use everyday words and ask them if they understand what you are saying
  • You help them understand any paperwork they need to read or sign

How can society make real change for a new direction in the future?

Survivors with DD within the LGBTQIA+ community must be given the opportunity to lead the way to speak out when they are ready, provided training and education on this topic, be seen and trusted as experts on their own experiences, sought out by the community and policymakers for their valuable contributions, and not be seen or treated as a token in any way.

Survivors with DD within the LGBTQIA+ community shared their tips on how to make change:

  • We can learn how to speak up for ourselves and others!
  • We want to be active in our health care and recovery
  • We can train professionals about how they can speak to us, so we understand them and how to make our own choices
  • We can join coalitions related to this topic in our communities and states
  • We can be on the frontlines to help start a national conversation about sexual violence prevention
  • We can make sure to talk about self-care in advocacy groups so people feel supported
  • We can dream up ways to ensure long term support for survivors

“We believe Adult Protective Services, health care, and law enforcement can collaborate to strengthen their understanding about how people with disabilities and people in the LGBTQIA+ community have experienced discrimination when reporting abuse. We can all work together with survivors taking a leadership role in training. Nothing About Us Without Us!” – Patty Quatieri and Kecia Weller, Survivor Self-Advocates

Learn more about The Arc’s Talk About Sexual Violence project and more about the Rainbow Group.

 

Contributors:

Building Partnership Initiative, Peer Support Network

Pauline Bosma

Patty Quatieri and Kecia Weller, Co-Chairs

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Why the Debt Ceiling Matters and How You Can Help

/in , /by The Arc

The United States could hit the debt ceiling as early as June 1.

Right now, Congress and the President must decide what to do about the debt ceiling.

These decisions could have a BIG impact on people with disabilities and their families.

TAKE ACTION

What is the debt ceiling?

The federal government regularly borrows money to pay for things.

The debt ceiling is the largest amount of money the federal government can borrow at one time. It can’t borrow more than the debt ceiling allows.

When the government gets close to hitting the debt ceiling, Congress must decide whether to:

  • Raise the debt ceiling, so the government can borrow more money to pay for things, or
  • Do nothing and fail to pay for the things it promised to do.

So far, Congress has always raised the debt ceiling.

This has happened 78 times since 1960.

Congress typically raises the debt ceiling high enough to last only a short time, from a few months to a few years.

What is happening with the debt ceiling debates now?

On April 26, the House of Representatives passed a bill to raise the debt ceiling.

It agreed to raise the debt ceiling for one year in exchange for over $3.6 trillion in budget cuts over 10 years.

The bill also adds radical work rules for all Medicaid enrollees who are ages 19 to 55.

These work rules would likely result in millions of people who rely on Medicaid getting kicked off the program.

The bill says that Medicaid enrollees would have to work at least 80 hours a month.

This includes enrollees who:

  • Get Social Security Disability Insurance or Supplemental Security Income and Medicaid
  • Have Medicaid waivers for home and community-based services

There would be only one way for people with disabilities enrolled in Medicaid to get out of this work requirement.

They would have to get a note from a doctor or medical professional saying they are “physically or mentally unfit” to work.

This adds a lot of red tape for people with disabilities and their families.

It also fails to understand that people with disabilities can and do want to work.

Medicaid’s rules related to work, savings, and disability are already complicated enough.

Adding more red tape will hurt people with disabilities and their families who rely on Medicaid.

What happens if Congress decides not to raise the debt ceiling?

If Congress does not raise the debt ceiling, the federal government may not be able to pay for important things like:

  • Medicaid, Medicare, and Social Security
  • The Supplemental Nutrition Assistance Program (SNAP)
  • Our military and the salaries of military service members
  • Tax refunds
  • And many more programs and services

The economy and stock market could also have trouble. It may cost people even more money to get a loan, and people could lose their jobs.

Everyone may struggle if Congress does not increase the debt ceiling.

But people with disabilities who depend on government services may be hurt more if the programs and services they need stop.

What You Can Do

Congress and the President can agree to raise the debt ceiling without cutting Medicaid or other essential programs.

Contact your members of Congress today and tell them to keep Medicaid out of debt ceiling negotiations.

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The Arc and The Coca-Cola Foundation Renew Shared Commitment to Education Equity and Self-Determination

/in /by The Arc

Washington, DC, April 4, 2023 – The Arc is thrilled to announce that a grant from The Coca-Cola Foundation will help us empower families and students navigating the special education process, which continues to be a source of confusion and frustration for countless families across the country.

Too often, students and their caregivers do not know all the supports and services that they are entitled to, or how to successfully advocate for them. With The Coca-Cola Foundation’s support, The Arc is working to change that reality.

The new grant will support dissemination and facilitation of The Arc@School’s Self-Determination Toolkit and Special Education Advocacy Curriculum in five selected chapters of The Arc across the country. Through these resources, students with intellectual and developmental disabilities and their families will expand their knowledge about rights within the special education system and how to receive what they need to thrive in school.

Each chapter will utilize the Self-Determination Toolkit to work directly with students with disabilities and local school systems, with the ultimate goal of leading their own Individualized Education Program (IEP) meetings. Assisting students with disabilities to better understand self-determination is critically important to help them be their own advocate and develop those skills that will be important in their day to day lives now and in the future. Additionally, their parents and guardians will have the opportunity to access the online Special Education Advocacy Curriculum training for free to expand their knowledge on the IEP process and feel empowered to be meaningful partners alongside their children as they advocate for themselves.

“An equitable education is a vital building block of community life for people with disabilities,” said Katy Schmid, Senior Director of National Program Initiatives at The Arc of the United States. “Issues like restraint, seclusion, segregation, and a lack of accommodations don’t just hurt students during their formative years—they can have long-term negative effects socially, psychologically, academically, and sometimes even physically. Inclusion starts in the classroom, and we thank The Coca-Cola Foundation for their continued commitment to making sure students with disabilities thrive in school and beyond.”

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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. 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.thearcwebdev.wpengine.com 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.

About The Coca-Cola Foundation: Established in 1984, The Coca-Cola Foundation has invested more than $1.5 billion globally to protect the environment, empower women to thrive and to enhance the overall well-being of people and communities.

Media Contact: Jackie Dilworth, dilworth@thearcwebdev.wpengine.com