A person standing at a voting booth. Next to them is any empty voting station.

Georgia-Based Disability Rights Groups Join Fight Against Georgia’s Anti-Voter Law S.B. 202

/in /by The Arc

Three groups joined pending litigation AME Church v. Kemp in an amended complaint that explains how S.B. 202 violates the Americans with Disabilities Act, Rehabilitation Act

ATLANTA — Three prominent Georgia-based disability rights groups have joined the broad-based alliance of Georgia voters, civil rights groups, and activists fighting against the implementation of the state’s unconstitutional and discriminatory Senate Bill (S.B.) 202.

The groups are: The Arc Georgia (an office of The Arc of the United States), Georgia ADAPT and the Georgia Advocacy Office (GAO).

These organizations, whose core missions are to advocate for disability rights and support voters with disabilities, are the first disability rights-specific groups to join as plaintiffs in any of the pending lawsuits against S.B. 202.

S.B. 202 was passed by both houses of the Georgia General Assembly and signed into law by Gov. Brian Kemp all in one afternoon.

In joining AME Church v. Kemp in the amended complaint filed by the Southern Poverty Law Center (SPLC), American Civil Liberties Union (ACLU), ACLU of Georgia, NAACP Legal Defense and Educational Fund, Inc. (LDF), WilmerHale, and Davis Wright Tremaine, these groups are making it clear that — in addition to targeting Black voters, Latinx voters, other voters of color, new citizens, elderly voters, and student voters — Georgia legislators and the governor have discriminated against people with disabilities.

Voters with disabilities have received scant attention in Georgia’s battles over voting rights but have borne the brunt of historical and continuing discrimination and neglect in all spheres of public life. Rather than celebrating the strong turnout in the 2020 general election and runoffs, S.B. 202 doubles down on making voting even more inaccessible for the disability community.

As detailed in the amended complaint, S.B. 202 unconstitutionally burdens the right to vote of people with disabilities and violates the Americans with Disabilities Act, which celebrates its 31th anniversary on July 26, and the Rehabilitation Act of 1973 by imposing voting barriers that will discriminate against voters with disabilities and deny people with disabilities full and equal opportunity to participate in the state’s voting programs.

The amended complaint in full, which also adds the Southern Christian Leadership Conference (SCLC) as a client, is available here:

https://www.splcenter.org/sites/default/files/083_ame_et_al_fac.pdf

Other plaintiffs in AME Church v. Kemp include: Sixth District of the African Methodist Episcopal Church, Delta Sigma Theta Sorority, Inc., Georgia Muslim Voter Project, Women Watch Afrika, and Latino Community Fund Georgia.

“Georgia’s voting process already presented barriers to people with disabilities and S.B. 202 has made the process even more inaccessible in violation of the law,” said Stacey Ramirez, acting state director of The Arc Georgia. “This lawsuit is critically important to the future of over 850,000 Georgian citizens with disabilities eligible to vote who have a fundamental right to participate in our democracy. If this law is not struck down, the walls it puts around our voting rights will be even harder for people with disabilities to scale, and that’s unacceptable.”

To read more about The Arc Georgia’s work, please visit the SPLC’s profile series Battle for Representation. The Arc’s story, released today, is the fourth in the series profiling some of the clients in AME Church v. Kemp. 

The Arc Georgia story is available at:
https://www.splcenter.org/news/2021/05/24/arc-georgia-nonprofit-helps-people-disabilities-cast-ballots-joins-splc-suit-against-voter

“I served in the U.S. Army, giving my body and soul to defend our Constitution. Now, as a Cherokee Two-Spirit disabled vet, and as an ADAPT activist, I joined this lawsuit to make sure every citizen — whether disabled, Black, Native American, Latinx, or Asian — can participate in the sacred act of voting,” said Zan Thornton of Georgia ADAPT.

“Voting is a fundamental right. Access for people who experience disabilities is generally an afterthought if it’s thought of at all. The change in the voting law creates new barriers for everyone but those barriers could be insurmountable for people who experience disabilities,” said Devon Orland, legal director of the Georgia Advocacy Office.

TRANSLATIONS OF THE ABOVE:

  • Plain language available immediately upon request
  • ASL video available shortly upon request

RELEVANT LINKS:

Contact: Graeme Crews
graeme.crews@splcenter.org / (334) 224-0002

Black and white photograph of justice scales sitting on a desk in a courtroom

Civil Rights Groups Secure Federal Approval of Revised Crisis Standards of Care in Arizona

/in /by The Arc

Phoenix, AZ – Today Arizona and national civil rights groups, in close collaboration with the Arizona Department of Health Services (ADHS) and the U.S. Department of Health and Human Services, Office for Civil Rights (OCR) announce the approval of revised crisis standards of care. These standards determine who does and does not receive care in the event of a shortage of health care resources. The revisions announced today ensure that the standards comply with federal civil rights laws and prevent discrimination in the provision of health care during this pandemic.

The following are the critical updates that were made to prevent discrimination in health-care decision-making:

  • Health care decisions that discriminate against protected groups are prohibited. Triage decisions will be made without discrimination on the basis of individuals’ disability, age, race, ethnicity, color, national origin, religion, sex, veteran status, genetic information, sexual orientation, or gender identity.
  • No Exclusions or Deprioritizing Based on Resource Intensity or Diagnosis: An individual can no longer be excluded from, or deprioritized for, medical treatment based on the fact that they might require more time or resources to recover or because of a person’s diagnosis or functional impairment. Rather than making assumptions about a patient’s ability to respond to treatment based solely on stereotypes, medical personnel must perform an individualized assessment of each patient based on the best objective current medical evidence.
  • Resource Decisions Based Only on Short-Term Survivability: Determinations about treatment can only be based on short-term survivability. Since long-term predictions of the outcome of treatment is fraught with speculation, mistaken stereotypes, and assumptions about the quality of life and lifespan of older adults and people with disabilities, they are explicitly prohibited.
  • Reasonable Modifications Required: Hospitals must make reasonable accommodations to the support needs and communication styles of persons with disabilities, and reasonable modifications to the Modified Sequential Organ Failure Assessment (MSOFA)— or other tools that may be used to prioritize access to medical treatment—to correct against the impact prior conditions may have on the assessment of organ failure scoring. Other reasonable modifications, including modifications to no-visitor policies, may also be required to provide equal access to treatment.
  • Reallocation of Personal Ventilators Prohibited: Medical personnel may not reallocate the personal ventilator of a patient who uses a ventilator in their daily life to another patient whom the personnel deem more likely to benefit from the ventilator in receiving treatment.
  • Blanket Do Not Resuscitate (DNR) Policies Prohibited: Hospitals must provide information on the full scope of available treatment alternatives, including the continued provision of life-sustaining treatment, and may not impose blanket DNR policies. Physicians may not require patients to complete advance directives in order to continue to receive services from the hospital.

“Individuals with disabilities have a right to equal access to life-saving treatment. These revised crisis guidelines protect this right, and require that hospitals provide support to exercise this right,” said Steven Schwartz, the Legal Director of the Center for Public Representation.

“Advocates diligently worked for more than a year to ensure older adults are treated with dignity during the pandemic,” said Regan Bailey, Litigation Director for Justice in Aging. “This most recent policy out of Arizona further recognizes that discrimination against older adults has no place in the decision of who gets limited life-saving treatment.  Arizona’s new policy is an important step in eliminating ageism, ableism, racism, and all other forms of discrimination in health care.”

“Today’s resolution makes major progress toward ensuring that people with disabilities have equal access to medical care during the pandemic and beyond,” said Peter Berns, Chief Executive Officer for The Arc. “We will keep fighting for revisions to policies that could mean the difference between life and death for people with disabilities.”

Those involved in the resolution included Arizona and national advocacy groups for persons with disabilities, communities of color, and older individuals: Arizona Center for Disability Law, The Arc Arizona, Arizona Center for Law in the Public Interest, Native American Disability Law Center, Justice in Aging, Center for Public Representation, The Arc of the United States, Disability Rights Education and Defense Fund, Bazelon Center for Mental Health Law, Autistic Self Advocacy Network, and the American Civil Liberties Union of Arizona.

In addition to working with OCR and other entities to revise crisis standard of care policies nationwide, The Arc, the Center for Public Representation, and Justice in Aging have created resources for stakeholders regarding preventing disability and age discrimination in crisis standards of care.

A photo of a man from the waist up. He is not wearing a shirt and has paint or tattoos on his body. He has face paint in red white and blue and is wearing a fur hat with tails coming down on either side. The hat has horns sticking out of it. He is holding a sign that says "Q Sent me"

The Arc Demands a Public Apology from U.S. Capitol Riot Attorney for Offensive Comments about People with Disabilities

/in /by Pam Katz

The Arc is appalled and disgusted by the offensive remarks made by Albert Watkins, an attorney representing Jacob Chansley, the self-described, “QAnon Shaman” who attacked the U.S. Capitol on January 6, 2021 with an angry mob. In an interview with Talking Points Memo, Watkins described defendants in the Capitol attack as “all f—ing short-bus people.” Watkins went on to say, “These are people with brain damage, they’re f—ing ret—ed, they’re on the goddam spectrum.” He has also made statements to the press that his client has Asperger syndrome, something that is not an indicator of criminal intent or behavior.

“These two sentences encapsulate the hate, discrimination, and vitriol that people with intellectual and developmental disabilities have faced for decades,” said Peter Berns, CEO of The Arc. “Make no mistake, this hurtful, demeaning, and unacceptable language is not a relic of the past – it’s still in the hearts and minds of many in our society. When it’s vocalized, it takes my breath away, because we have come so far with people understanding that those with disabilities are valued members of every community. Yet, here we are, as stereotypes and disgusting language are being used to defend the indefensible – an assault on the heart of our democracy at the U.S. Capitol.

“Particularly infuriating is the use of the R-word. The Arc has successfully fought alongside people with disabilities for decades to remove the R-word from federal and state policies, and from society as a whole. Unfortunately, the word is still used by those who do not recognize the humanity and value of people with disabilities and those who do not understand the detriment of their words.

“We also want to make clear – disabilities do not cause people to engage in violence or commit crimes.

“We demand a public apology from Albert Watkins and that Watkins takes the time to learn about the disability community and the impact of such derogatory language. We also call on the media to reflect the perspective of people with disabilities and their families throughout their work, but particularly when incidents like this one happen. They can accomplish this by interviewing people with disabilities and families and by seeking them out for information and education to inform their coverage. Watkins’ remarks threaten to deepen discrimination against people with disabilities. The Arc and our allies have fought too hard.  We are committed to moving forward and creating a society that values and respects the humanity of all people.”

the verizon logo in black on a white background

The Arc Receives Funding from Verizon to Expand Emergency Preparedness Across the U.S.

/in , , /by Pam Katz

The Arc of the United States is thrilled to announce it has received an award from Verizon to implement the Building Community Resilience through Inclusive Disaster Preparedness program in 2021. Through this initiative, we will award chapters of The Arc and community organizations grants to offer online volunteer opportunities that focus on the importance of emergency-preparedness and ensuring that people with disabilities and their perspectives are incorporated in emergency-preparedness plans from the beginning.

Organizations will engage in a variety of virtual volunteering activities, such as creating disaster kits, developing emergency plans and important documents to be distributed, training, and much more. Grantee activities will be featured on Verizon’s employee volunteering platform, enabling   Verizon employees the opportunity to serve their communities alongside people with disabilities. A key piece of each grantees’ plan will be to host a virtual volunteering opportunity on the 20th anniversary of 9/11, a day now dedicated to volunteering and giving back to communities.

“People with disabilities and their needs are frequently overlooked when it comes to emergency planning.  With this additional funding from Verizon, The Arc will be able to continue changing that narrative and expand upon the emergency preparedness work we began last year,” said Peter Berns, CEO of The Arc.

A close up photo of two people with their arms around each other and their heads together, smiling.

Celebrating Strength This Mother’s Day: A Mother’s Persistence

/in , /by Pam Katz

This Mother’s Day, The Arc celebrates the unconditionaA selfie of a mother and her two teenage children on a couch, with checkered blinds in the background. l love and infinite strength of mothers. We recognize the mother figures and grandmothers who nurture and support us – no matter what. We embrace the challenges of motherhood. We revel in the joys.

If you ask Kendra Mendoza, a mother of two in North Providence, Rhode Island and friend of The Arc, what her role as a mother means to her, the answer is clear.

“It means everything to me. It is my sole first purpose in this life – being a mom,” she shared with us.

Kendra is a mother and a fighter, a force of nature to be reckoned with and admired. The single mother has taken on the state disability services agency, school boards, health care providers, and landlords. Kendra stops at nothing to make sure that her 17-year-old son Joshua receives respect, compassionate care and support, and opportunities to thrive in school and beyond.

Joshua was born with a rare genetic disorder and several other developmental disabilities. He requires complex medical care and supervision around the clock. Kendra says he is a blessing.

“Whenever I look at Joshua, I see ability and potential,” she said. “He has taught me so much. He takes life and smiles through it.”

Joshua underwent brain surgery at two days old. He has had two more brain operations since. With his mother by his side every step of the way, Joshua has far exceeded doctors’ expectations.

Joshua lives in the moment. When asked for this story during breakfast what he loves most about his mother, he replied: “You feed me!”

Eating is one of Joshua’s favorite activities. He is known at his local Wendy’s and Dunkin’ Donuts. Joshua also loves reading and art. He enjoys playing Memory on his tablet and going on car rides and walks to the store. He likes listening to music, especially John Legend and Ed Sheeran. Joshua helps out around the house, clearing the table and putting dishes in the sink, as well as tying up the trash.

Kendra’s determinatioA mother and her son in a wheelchair testify in a public policy hearing. n as a mother extends into advocacy. Working with The Arc Rhode Island, she advocated in the General Assembly in support of special education reform to give parents and guardians more rights in the Individualized Education Program, or IEP, process. In testimony before the Rhode Island House of Representatives, Kendra and Joshua shared challenges with the IEP process for families and why is critical that students with disabilities receive a Free Appropriate Public Education, or FAPE, as mandated by federal and state law. Kendra is also part of a group of parents, guardians, and educators in Rhode Island advocating for the creation of an independent special education ombudsman office to investigate special education disputes and serve as a resource for parents and guardians. The office would also provide an outlet for anonymous reports of possible violations.

In her advocacy, Kendra has worked closely with Joanna Scocchi, Director of The Arc Rhode Island.

“Kendra is an example of the many parents who are fighting not just for their own child, but for all children to lead a full life with opportunities, hopes, and dreams,” said Scocchi. “It takes the determination of parents and advocates to advance the goal of ensuring that society understands every child is entitled to – and deserves – an education that meets their unique needs and prepares them for further education, employment, and independent living.”

Like so many mothers, Kendra manages to persist, one battle after another, but always with the nagging feeling that things should be easier. It’s nearly a universal feeling across the disability community.

“I don’t understand why we have to fight all the time for things that should be common sense,” said Kendra.

Since the start of the COVID-19 pandemic, Kendra has worked closely with Joshua’s IEP team to try to ensure that he continues to receive an education remotely. People with intellectual and developmental disabilities are at higher risk of contracting the virus and health outcomes are often worse. Trying to keep Joshua safe and in virtual learning has felt like a second and third job. Kendra hopes Congress passes a national paid leave policy so that unpaid family caregivers don’t have to choose between a paycheck and the health and well-being of their loved ones.

The Arc and many other groups that represent caregivers urged the White House and Congress to include paid leave in forthcoming legislation and President Biden has urged Congress to do so. The pandemic has highlighted what family caregivers have known for decades—we need paid leave now.

There is one more thing about Kendra Mendoza you should know. When she’s not with Joshua, she’s supporting women with disabilities in a group home. Kendra is employed as a direct support professional, or DSP. She helps the women she serves with dressing, eating, and preparing for their day.

Many years ago, Kendra decided to pursue a career in health care in order to learn as much as possible about the road ahead as a mother to a child with multiple disabilities. This Mother’s Day, she reflects on her children and how she is the lucky one.

Kendra says the simple moments mean the most.

“The moment your kids smile and they know they’re safe,” she said. “They remind me of my purpose. They push me to grow as a person.”

The Arc logo

What Happens Next? The Role of Supporting Decision-Making in the Lives of Sexual Assault Survivors With Disabilities

/in /by Pam Katz
A womoan with short gray hair and bangs stands facing the camera and smiling. She is wearing glasses, a black long sleeve shirt, and a dark blue long lanyard around her neck.

Patty Quatieri is an accomplished presenter in the field of disability rights and is based in Massachusetts. Patty has received numerous awards for her civil rights advocacy and established the first agency-wide newsletter: The Peer Support Press. She is one of the three founding leaders of the National Peer Support Network.

“People assume because we have a disability we don’t need to know what sex means and how to give consent. They only see the disability. Too many people believe we can’t have an intimate relationship or get married. I didn’t have sex education because my parents wanted to protect me. My mother took me out of the sex education class. After I was sexually assaulted, she was even more overprotective and limited my freedom. I still was not provided sex education.” – Patty Quatieri

As we recognize Sexual Assault Awareness month, the data tells a disturbing story: the National Crime Victim Survey reveals that people with intellectual disabilities experience sexual violence at seven times the rate of those without disabilities.

In our society today, it’s not easy to talk openly about sexual violence, even with increased dialogue around the issue through the #MeToo movement. This is true when it comes to talking with people in the health care profession about sexual violence as well. Health care providers rarely report sexual assault and do not engage victims with intellectual and developmental disabilities (IDD) in conversations about what happens next and how to get ongoing support. Additionally, there are limited communication tools available that encourage deeper conversations between patient victims and providers to achieve patient-centered outcomes.

To address these issues, we should be asking:

  • How can we support people with IDD to make decisions about if, when, and how they want to talk about sexual victimization they have experienced?
  • How can we ensure people with IDD are supported to make their own decisions about what happens next after victimization occurs (for example, where to get help—through peer to peer support, one-on-one counseling, or other options)?
  • How can we support people with IDD, like Patty, to decide for themselves about when and how they want to participate in sex education?

The answers to these important questions will help us move the needle in preventing and responding to sexual violence of people with IDD. The Talk About Sexual Violence project is working to make conversations on this topic easier for both health care providers and people with IDD, who have valid concerns about what might happen to them if they choose to disclose sexual harassment, abuse, or assault to a health care provider.

Now in Phase III of the project, our focus is on how health care providers can support people with IDD to have choice and autonomy when making decisions about follow-up care. By applying the core principles of supported-decision making, survivors of sexual violence can make their own decisions and stay in charge of their own recovery, while receiving any guidance, help, or support they need to do so.

The challenge is clear: despite a well-known national epidemic of sexual violence against persons with IDD, health care providers continue to struggle with having the knowledge, training, and tools needed to adequately address it. There are still far too many victims with IDD living with sexual trauma who are not receiving any support after trauma occurs.

The numbers are too high to ignore. The disability community must work closely with the victim advocacy community to target key professionals who have direct access to sexual assault victims with disabilities. Educating health care providers about the value of having conversations about sexual violence with their patients is an important beginning step for victims to 1) comprehend what has happened to them and 2) learn ways to actively engage in making their own decisions about what happens after victimization occurs. This is how victims can reclaim their power and voice after victimization and begin their healing process. The Talk About Sexual Violence project will be creating tools, webinars, and reports on this topic over the next three years to address these issues.

 

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The Arc Unites With the Black Community in Response to the Conviction of Derek Chauvin

/in /by The Arc

Washington, D.C. – The Arc unites with the Black community following the conviction of former Minneapolis police officer Derek Chauvin for the murder of George Floyd.

“Mr. Floyd’s life was valuable. His life matters. Black lives matter. Mr. Floyd’s murder, at the hands of Chauvin, shows us once again that racism and white supremacy plague our country and are a matter of life and death for the Black community. The Arc is united with all Black people who continue to experience discrimination in every aspect of society and will continue our fight to achieve civil rights and social justice.

“Chauvin’s conviction on all three charges should serve as a clear directive that police brutality will not be tolerated. The jury’s decision is a step in the right direction in addressing the systemic racism, hate, and fear that continues to fuel murder, violence, and injustice.

“We grieve with Mr. Floyd’s family and the larger community and recognize that this verdict does not bring him back. But it does bring hope that we are closer to holding those accountable who routinely use their power to oppress marginalized communities,” said Peter Berns, CEO of The Arc.

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 over 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.

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The Arc Condemns Killing of Daunte Wright

/in /by The Arc

The Arc grieves the senseless death of a young Black man with a disability at the hands of police – yet again. Daunte Wright was killed by a 26-year veteran Brooklyn Center, Minnesota police officer who says she fired her gun instead of her Taser by mistake during a traffic stop. The officer has since resigned and has been arrested and charged with second-degree manslaughter.

“Daunte Wright should still be alive, but instead, the 20-year-old father is dead. As we have seen, time and time again, the lives of Black people are too often not valued. Black lives matter.

“According to media reports, Daunte’s father says the young man dropped out of school because he had a learning disability.

“For Black people with disabilities, the odds of death or injury at the hands of law enforcement are even higher.

“The Arc is deeply saddened and angered by this pattern of violence by police against Black people in our country. It must stop. Daunte’s life was just beginning.

“We must address the systemic racism, hate, and fear that fuels this ongoing violence and police brutality. The Arc condemns racism and white supremacy that are at the root of these injustices.

“As an organization, we advocate for human and civil rights. We stand in solidarity with the Black community. We remain committed to social justice and our own efforts to fight all forms of oppression,” said Peter Berns, CEO of The Arc.

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No One Should Have to Live Like This: Steve’s Nine-Year Wait for Freedom

/in , , /by Pam Katz

Thousands of people with disabilities in the U.S. use Medicaid to get the supports and services they need to live and be healthy every day. But, people with disabilities must often wait several years to get access to the type of supports they want and need in their own homes. Many are forced into nursing homes and institutions to get the services they need.

But this comes at a critical cost: freedom.

Meet Steve

Steve has cerebal palsy. For most of his young life, and like many people with disabilities, he lived with his mom. When Steve was only 22 years old, his mom became very ill. Because she could no longer provide the supports he needed, Steve was forced to move into a nursing home to get the care he could no longer receive in his childhood home. Even though Steve knew he could make it in the community with the right supports, he was forced to make this move. This was because his family was concerned about his well-being if he lived independently, and because they feared the appropriate supports were not available to him.

The nursing home put Steve in the long-term Alzheimer’s unit with people who were often in their 80s and 90s. This was not Steve’s choice. Steve was placed in an available bed where all long-term residents were put.

Steve hated living in the nursing home and often felt like the care he got from staff was lacking.

“I had to wait an hour for someone to respond when I asked for help. Sometimes, the nurses would come in and turn the call light off instead of helping me. I was always the last to be fed. When I needed to go to the bathroom, I would wheel my chair out to the hall and tell the staff—but they would walk away. I had to fight with the nurse to get medications. If I told someone I wasn’t getting taken care of, the care would be worse because the staff would get mad at me. At night, I couldn’t sleep because the other residents were screaming or because staff were buffing the floor.”

After a year in the nursing home, Steve’s case manager got him on the waiting list for Medicaid home and community-based services (HCBS). Access to HCBS would allow Steve to move out of the nursing home and get the help he needed in his own home in the community.

“I spent eight years on the waiting list… Every year, I got a letter about where I was on the waiting list. Every time I got that letter, I was so discouraged and disappointed because it felt like my name was not coming up. And, I thought that I would never get out.”

Finally, after nine years in the nursing home, Steve’s name did come up, and he got out.

“On my last day in the nursing home, I went to the administrator and told her, ‘thank you for kicking me out—you made my wish come true.’ When I got out and got [HCBS services], I finally had the freedom to do what I wanted to do… I could eat when and what I wanted—and the food was actually warm. I could sleep better at night. I could use the bathroom when I needed to. I could go out with friends without having to come back at a certain time. I did not have to fight nurses to get my medication. I had freedom—and a life like yours.”

Now, Steve lives independently in his own home in the community, with support from paid caregivers. While he does still experience challenges with things like getting transportation services, finding safe and affordable housing, and finding paid caregivers, he believes he is where he belongs.

Steve’s nine years in a nursing home profoundly impacted him and he wants to make sure no one has to live the way he had to.

“Just because we are disabled, [doesn’t mean we don’t deserve] equal rights—we do not belong in an institution. We should have the same opportunities as anyone else. Everyone should get the help they need in their home, [and everyone should have the right to live the life they want].”

To others with disabilities, Steve offers these words of encouragement.

“People will say there are no other options for you in your area besides an institution…Do your research. Have a backbone, be tenacious, and don’t ever give up. You are always going to have roadblocks—but you have to find your way past them. You can do it.”

Check out this video to learn more about the role of Medicaid HCBS and Supplemental Security Income in Steve’s and other advocates’ lives.

This injustice must end.

No one should have to give up their freedom to get the services they need. The Arc works every day:

  • To make sure people can get the Medicaid HCBS they need
  • To end long waiting lists for HCBS services
  • To close institutions, which still exist in 36 states nationwide

Join us! Visit thearc.org/MedicaidCantWait to learn more and see how to advocate for HCBS with us.

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The Arc Encouraged by Proposal for Huge Investment in Disability Services and Direct Care Workers

/in , , , , , /by The Arc

Washington, D.C. – For years, the service system that people with intellectual and development disabilities (IDD) and their families rely on has fallen far short of meeting their needs. The COVID-19 pandemic has magnified this problem and exposed the cracks and gaps in the care infrastructure when it comes to supporting people with disabilities. The Arc is encouraged by the Biden Administration’s announcement today that The American Jobs Plan includes a $400 billion investment to support and grow the direct care workforce, expand service delivery and eliminate waiting lists so that people with disabilities and unpaid family caregivers can return to the economy. This investment is long overdue, and like crumbling roads and bridges, the Administration recognizes that the home and community-based service (HCBS) system, a central part of the care infrastructure, needs and deserves the same critical investments. Now, Congress must act.

Growing the direct care workforce, expanding access to services, and supporting family caregivers are key to our economic recovery. The Administration’s plan to provide more funding for HCBS, create jobs and increase wages and benefits for direct care workers addresses the rising level of need for these services. It also targets the longstanding inequities experienced by the direct care workforce that were made worse by the pandemic. These direct care workers are mostly women of color; they are denied a living wage due to underfunding of the Medicaid HCBS system that pays their wages. A well paid, well trained workforce that can grow with and meet the increasing need is critical to recovery and to providing people with disabilities and their families quality supports and services they need and want to receive in their homes and community. The Arc was also thrilled to see the plan include a permanent reauthorization of the Money Follows the Person program, a Federal program that supports people with disabilities and aging adults to move out of large congregate settings and back to their homes and communities. The Arc has been advocating for all of these advances for years.

We are pleased with the Administration’s proposal for this major investment in and recognition of the value of people with disabilities, their families, and the direct care workforce. Congress must now act to make this important investment in the service delivery system and the direct care workforce a reality by including these provisions in any new infrastructure and recovery legislation.

“As the largest disability rights organization in the country, The Arc is pleased to see the value of people with disabilities, family caregivers, and direct support professionals recognized and upheld in the Administration’s bold American Jobs Plan.  The proposal is a welcome first step and we will not rest until the needs of people with IDD and the direct support workforce are fully addressed,” said Peter Berns, CEO of The Arc of the United States.