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Proposed Medicaid Restructuring Will Harm Disability Community

Washington, D.C. – Today, the Centers for Medicare and Medicaid Services announced guidance to states allowing them to pursue drastic changes in how they administer Medicaid to many program recipients, including people with disabilities, family members, direct support professionals, and other allies of people with disabilities. The guidance encourages states to cap their federal funding for the Affordable Care Act’s (ACA) Medicaid expansion and weaken federal protections for the low-income adults it covers.

The program would block grant or put a per person cap on the federal government’s payment to states with a pre-set formula that may not consider growth in cost or need. A per capita cap would limit the amount spent per enrollee in the program. Both are now options for states to pursue that are harmful to the structure and funding levels of the Medicaid program.

States would be allowed to restrict eligibility, provide limited health care benefits, reduce access to prescription drugs, impose burdensome work requirements, and make other changes that are detrimental to Medicaid beneficiaries.

“Medicaid equals access to health and wellbeing for millions of people, including people with disabilities, their family members, and their direct support professionals. This decision is a blow to the entire disability community. It also begs the question – once they block grant one part of the program, what’s stopping them from moving on to the home and community-based services that make independence and community possible for people with intellectual and developmental disabilities?” said Julie Ward, Senior Executive Officer for Public Policy, The Arc.

This guidance does not appear to directly impact the portion of the Medicaid program that funds home and community-based services for people with intellectual and developmental disabilities (I/DD). However, people with disabilities, including people with I/DD, are part of the Medicaid expansion population and could be directly impacted. In addition, the restructuring of the program will impact all aspects of the Medicaid program if states are not able to operate their programs under the cap.  States would be responsible for any shortfalls in funding, and to make up the difference states may cut eligibility, limit services, reduce provider rates, or other spending reductions that hurt beneficiaries.

The guidance allows states to operate the Medicaid program with limited federal oversight and few beneficiary protections. If harmful or discriminatory policies are implemented by the state, there are few avenues to address the issue. The limited public review and comment ensures that people with disabilities, their family members, providers and other advocates have little influence over how policies are developed and whether they will meet their needs.

“This effort is a major change to the Medicaid program as we know it, and we are very concerned that it’s just the beginning of bad news for Medicaid in 2020,” said Ward.

The Arc advocates for and serves people wit­­h intellectual and developmental disabilities (I/DD), 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 I/DD 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.

Close up of the U.S. Supreme Court, focused on the pillars, and doorway.

Supreme Court Lifts Stay on Public Charge Rule: Implementation Will Have Chilling Impact on People with Disabilities

Washington, D.C. – The Arc is deeply troubled by the decision by the U.S. Supreme Court to grant the Administration’s request for a stay of the nationwide injunction on the discriminatory public charge rule, allowing the implementation of the rule to move forward. The public charge rule will have a dire impact on people with intellectual and developmental disabilities (I/DD) by allowing the federal government to deny admission into the U.S. based on a person’s disability and the use of vital programs like Medicaid, the Supplemental Nutrition Assistance Program (SNAP), housing assistance, and other important benefits. It discourages immigrant families from utilizing critical public services out of fear of harming their immigration status.

The policy unfairly restructures immigration in a way that is detrimental to people based on their disability. For immigrants who are already in the United States legally and use public benefits, or have at one time used public benefits, or are deemed likely to someday rely on public benefits, the new rule could impact their immigration process. Many people with disabilities will, solely because of their disability, be kept out. And because of the surrounding fear and confusion the rule will cause, the harm will extend much further.

“This rule essentially tells the world, as an immigrant with disabilities, you are not welcome here. If our country perceives you to be in need of access to vital supports, you will be considered an inadmissible ‘public charge.’ Non-citizens with any type of disability should have a fair opportunity to enter and live legally in the U.S., and we urge Congress to intervene to stop this reckless violation of the civil rights of immigrants with disabilities and their families that several of the lower courts have recognized as such,” said Peter Berns, CEO, The Arc.

Research has already shown harmful consequences of the August announcement of the new regulations. The Kaiser Family Foundation found that nearly half of community health centers report that many immigrant families—fearing deportation or other negative consequences—declined to enroll in Medicaid in the past year, and nearly a third of centers say some patients dropped or decided not to renew their coverage. Kaiser also found that more than a third of health centers report that some immigrant parents were declining to enroll their children in Medicaid over the past year, while nearly 30 percent reported families dropping or not renewing coverage for their children.

The Arc and a large coalition of national disability advocacy groups have filed multiple amicus briefs in support of several cases to block the Administration from implementing the public charge rule, arguing that it would prevent people with disabilities from entering the country or becoming legal residents in violation of federal disability laws.

The Arc advocates for and serves people wit­­h intellectual and developmental disabilities (I/DD), 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 I/DD 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.

Photo of desks in a classroom with dim, moody lighting

Class Action Complaint Filed in West Virginia Alleging Systemic Disability Discrimination in Kanawha County Schools

Charleston, WV – The Arc of West Virginia is joining parents of a child with autism in filing a class action complaint in federal court in Charleston alleging widespread failures by Kanawha County Schools (KCS) to educate children with disabilities, including autism, intellectual and developmental disabilities, mental health issues, and Attention Deficit Hyperactivity Disorder (ADHD). Specifically, the complaint, filed Friday, asserts that KCS—the public school district serving the Charleston metro area—has failed to provide behavioral supports to students with disabilities and is instead punishing them by sending them home instead of educating them. Attorneys for The Arc of West Virginia and the parents—Disability Rights of West Virginia, Mountain State Justice, The Arc, the Bazelon Center for Mental Health Law, and the global law firm Latham & Watkins LLP—allege that KCS has violated federal laws protecting students with disabilities.

“The Arc has long fought for students with intellectual and developmental disabilities to be educated in their neighborhood schools, with appropriate supports,” said Liz Ford, Executive Director of The Arc of West Virginia. “KCS’ systemic failure to provide such supports to students with disability-related behaviors has led to punishment, segregation from classmates without disabilities, and loss of valuable instruction time. This is unacceptable to The Arc and our constituents in West Virginia.”

“Students with disabilities and behavioral support needs can thrive in school, graduate with diplomas, and transition to successful adulthood provided they receive the appropriate supports to which they are entitled under federal law. It is critical that KCS take responsibility for teaching all of its students, not just some,” said Jeremiah Underhill, Legal Director of Disability Rights of West Virginia.

Data from the West Virginia Department of Education shows that over 1,000 children with disabilities enrolled in KCS were removed from their classrooms during the 2018-2019 school year after their schools suspended them. This number does not include all of the additional students with disability-related behaviors whose schools asked their parents to take children out of the school before the end of the school day, or to keep them at home, without formally suspending them. It also does not include students with disabilities who were expelled from school for their behavior; those who were separated unnecessarily from mainstream classrooms and moved to segregated classrooms where they interact only with other students with disabilities and receive an inferior education; or those who were placed on “homebound” status where they may receive only a few hours of tutoring each week. These students are not receiving critical behavioral supports that can help them be successful in the general education classroom with their classmates without disabilities.

“It is heartbreaking to see KCS undermine the great potential of students with disabilities by failing to provide necessary supports and, ultimately, removing them from the classroom, causing them to fall farther and farther behind academically and socially,” said Lewis Bossing, Senior Staff Attorney with the Bazelon Center. “And the problem is only getting worse: in the 2018-2019 school year, KCS removed nearly 250 more students with disabilities from the classroom than in the prior academic year, despite overall KCS enrollment decreasing during that same period.”

Specifically, the complaint alleges that KCS is: 1) violating the Individuals with Disabilities Education Act (IDEA) by failing to provide children with disabilities with the special education they need to receive a “free appropriate public education” in the least restrictive environment; and 2) violating the Americans with Disabilities Act (ADA), Section 504 of the Rehabilitation Act (Section 504), and the West Virginia Human Rights Act by failing to educate children with disabilities in the most integrated setting appropriate to their needs, and denying them equal educational opportunity.

“We are seeing KCS discipline students with disabilities for ‘infractions’ as minor as touching another student with a plastic fork or refusing to get off the playground slide at the end of recess. Students are receiving behavior supports that take the form of rote “code of conduct” checklists rather than the individualized supports that the IDEA requires to adequately support children to succeed in school,” said Lydia Milnes, an attorney with Mountain State Justice.

In 2017, the U.S. Supreme Court held unanimously in Endrew F. v. Douglas County School District RE-1 that the “IDEA demands more.” Specifically, the Court provided a new and more demanding standard for what schools must do to adequately educate students with disabilities, requiring that school districts provide “an educational program reasonably calculated to enable a child to make progress appropriate in light of the child’s circumstances” and provide students with disabilities the opportunity to meet “challenging objectives” with “appropriately ambitious” special education. For virtually all children, this means receiving instruction and services in the general education classroom, with appropriate supports, alongside students without disabilities. In addition, in 1999, in Olmstead v. L.C., the Court held that the ADA prohibits the needless isolation or segregation of people with disabilities. The ADA applies to public schools, which cannot unnecessarily segregate students with disabilities, nor deny them equal opportunities.

“KCS’ systemic failures to support students with disabilities in the least restrictive, most integrated setting, and overuse of punitive disciplinary measures for behavior that is disability-related, cannot be justified in light of recent and longstanding Supreme Court precedent,” said Michael Faris, Latham & Watkins partner. “By failing to adhere to the IDEA and ADA, KCS is diminishing our clients’ ability to secure the education to which they are entitled by law. We look forward to ensuring that the law is upheld.”

About The Arc

The Arc is the largest national community-based organization advocating for and serving people with intellectual and developmental disabilities (I/DD) and their families. In partnership with its network of 650 chapters across the country, including The Arc of West Virginia, The Arc works to promote and protect the rights of people with I/DD to live, work, and learn in the community free from discrimination. To learn more, visit www.thearc.org and www.thearcofwv.org

About Disability Rights of West Virginia

Disability Rights of West Virginia (DRWV) is the federally mandated protection and advocacy system for people with disabilities in West Virginia. DRWV protects and advocates for the human and legal rights of persons with disabilities. To learn more, visit https://www.drofwv.org/.

About Mountain State Justice

Mountain State Justice is a non-profit legal services firm dedicated to redressing entrenched and emerging systemic social, political, and economic imbalances of power for underserved West Virginians, through legal advocacy and community empowerment offered regardless of ability to pay. To learn more, visit https://mountainstatejustice.org/.

About The Judge David L. Bazelon Center for Mental Health Law

The Judge David L. Bazelon Center for Mental Health Law is a national legal advocacy organization protecting and advancing the rights of people with mental disabilities. The Center promotes laws and policies that enable adults and children with mental disabilities to live independently in their own homes, schools, and communities, and to enjoy the same opportunities that everyone else does. To learn more, visit www.bazelon.org.

About Latham & Watkins LLP

Latham & Watkins LLP is global law firm with more than 2,700 lawyers located in Asia, Europe, the Middle East, and the United States. For more information, please visit its website at www.lw.com.

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Threats to Medicaid and Social Security Resurface; The Arc Poised to Defend Critical Programs

Washington, D.C. – As reports circulate of further attacks on Medicaid and Social Security — programs that are vital to the quality of life for people with intellectual and developmental disabilities (I/DD) and their families — The Arc is preparing for battle to stop these threats in their tracks.  Federal agencies have proposed regulatory changes to cut the Medicaid and Social Security programs, and just this week President Trump made comments to CNBC highlighting plans to cut these programs “toward the end of the year.”

Medicaid and Social Security could be on the chopping block. Yet these programs are essential for the health, well-being, and community inclusion of millions of people with I/DD and their families. Medicaid is the nation’s primary health insurance program for people with disabilities, and funds vital supports to keep them in their communities. Social Security insures individuals and family members for when a worker retires, dies, or acquires a qualifying disability. Many people with disabilities depend solely on their Social Security or Supplemental Security Income (SSI) benefits and related health coverage for their basic survival. Social Security Disability Insurance (SSDI) assists workers with qualifying disabilities, their children, and spouses. All of these programs are important to people with I/DD and their families.

“Cutting Medicaid and Social Security would be devastating for people with intellectual and developmental disabilities and their families, and we will fight with everything we have to protect these critical programs. There are millions of people with disabilities, their parents, siblings, family members and friends who all agree — we can’t turn back the clock on 70 years of progress we have made in including people with I/DD as valued members of our community and supporting them to realize their full potential. People with intellectual and developmental disabilities should have the opportunity to live fair, full, and promising lives, and have access to the services, supports, and income support to do so,” said Peter Berns, CEO, The Arc.

The Arc advocates for and serves people wit­­h intellectual and developmental disabilities (I/DD), 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 I/DD 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.

A young girl with down down syndrome smiles while holding a spoon

There’s No Place Like Home: The Arc Releases A National Study on Disability Housing

Washington, D.C. – As people with intellectual and developmental disabilities (I/DD) and their families age, one question often takes center stage: Where will I or my family member live in the future? In 2019, The Arc’s Center for Future Planning partnered with CQL | The Council on Quality and Leadership to better understand the challenges that families face when making plans and decisions around future homes, and are now releasing this important report and recommendations.

Nationwide, around 75% of adults with a disability live with an aging parent or other caregiver, and most are not connected to public supports or services. As a result, aging parents and family members frequently serve as unpaid primary caregivers for their family member with I/DD. Families worry about what will happen when they are not able to provide support to their loved one and are especially concerned about where their family member will live. However, more than half of families do not have a plan for the future.

The research found that:

  • Most people with I/DD and their families said that they had very little choice in where they live because there were not many home options that would accept a person with I/DD.
  • Family members often decided where the person with I/DD would live, but people with I/DD wanted to be involved in this decision.
  • People with I/DD cherish time they have in and with the community, and want more opportunities to integrate into their communities.
  • People with I/DD want to contribute to the choices that impact their lives, such as where they live, who they live with, and how they spend their time.
  • People with I/DD want opportunities to learn new skills, participate in tasks such as cleaning, cooking, and administering their own medication, and the chance to interact with friends and romantic partners.
  • People dream of having independence and opportunities, a setting that is physically accessible, having the ability to see their friends whenever they want, being treated with respect, and having well paid and qualified support staff.

“Where you live and the characteristics of that environment impact so many aspects of someone’s day to day life. The reality is people with disabilities don’t have enough options, and they are too often bystanders when these big decisions are made about their lives. Our hope is that this report sparks a dialogue across the country that leads to progress in integrated housing options, and expands person-centered planning and supported decision-making as people with intellectual and developmental disabilities and their families prepare for the future,” said Peter Berns, CEO, The Arc.

The report includes several recommendations, including:

  • Create a centralized place for information and resources;
  • Increase funding to promote quality, community-based housing services and housing options;
  • Improve the ability for families to navigate and use the disability service and housing systems;
  • Increase wages and training for direct support staff to help people with I/DD in their homes;
  • Ensure services and supports are person-centered and directed by what a person wants; and
  • Empower people with I/DD to exercise their rights and make decisions.

The Arc and CQL conducted a two-part mixed method study. The first part of this study included a national online survey of people with I/DD and family members of people with I/DD; the survey included both quantitative and qualitative items. The second part of this study included in-person nominal group technique (NGT) sessions throughout Illinois. NGT is a participatory action research method which includes structured brainstorming similar to a focus group, except it is more inclusive, accessible, collaborative, and reduces the power dynamics often involved in research. In total, 726 people participated in this study (377 people with I/DD (51.93%), 349 family members of people with I/DD (48.07%)), representing 45 states and the District of Columbia.

The Arc advocates for and serves people wit­­h intellectual and developmental disabilities (I/DD), 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 I/DD 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.

Stack of binders filled with papers

The Arc Fights Rule That Would Unfairly Strip Disability Benefits

Washington, D.C. – The Arc urges The Social Security Administration (SSA) to withdraw its proposed rule that would force people with disabilities and their families to repeatedly prove their disability – putting the critical benefits of thousands of people in jeopardy. The rule would increase how often adults and children with disabilities have to gather and submit mounds of tedious paperwork and other documentation to show the federal government that their disability has not suddenly gone away.

Continuing Disability Reviews can be extremely complicated. People with disabilities, their families, their teachers, and service providers often spend weeks gathering information and making sure forms are filled out correctly. Even a minor error on the form can put not only Social Security or Supplemental Security Income (SSI) benefits at risk, but also Medicaid services and other benefits.

“It is unfair for the federal government to burden people with disabilities and their families with the unnecessary and overwhelming task of constantly proving their disability. People with intellectual and developmental disabilities typically require services and supports throughout their lifetimes and will not cease needing services. The Social Security Administration’s new rule would also further open the door to costly applicant and administrative errors, leading to the loss of benefits despite eligibility and the devastating domino effect for people with disabilities and their families. We need the government to consider the looming damage and withdraw this rule immediately,” said Peter Berns, CEO, The Arc.

The Arc is also asking the disability community and supporters to oppose the new rule by submitting as many public comments as possible to the federal government before next week’s deadline of Friday, January 31. We want supporters to submit comments here explaining why the rule is harmful and how Social Security and SSI help people with disabilities. The government must read and respond to public comments before it makes the rule final.

The proposed rule would:

  • Require people with disabilities to fill out cumbersome paperwork 2.6 million more times over the next ten years
  • Cut $2.8 billion in Social Security and SSI benefits
  • Put the benefits of thousands of people with disabilities at risk
Out of focus image of a woman feeding a baby and holding a rubber ducky

HUD Proposal Erodes the Promise of the Fair Housing Act

Washington, D.C. – The Arc is extremely concerned by the Affirmative Furthering Fair Housing (AFFH) rule published today in the federal register. The proposed rule is a retreat from efforts to fight housing discrimination and segregation in the U.S. The proposed rule makes many potentially harmful changes, and removes language recognizing that affirmatively furthering fair housing includes an opportunity for people with disabilities to live in “the most integrated setting appropriate to the individual’s needs.” The new rule would result in less oversight, weaker and ill-advised standards, and a lost opportunity to improve housing opportunities for people most in need, including people with disabilities.

The Fair Housing Act requires housing agencies and communities receiving HUD funds to identify barriers to housing access for certain specified groups, including people with disabilities, and take affirmative steps to end housing discrimination. This new rule would replace and largely reverse the current AFFH rule, finalized in 2015, that The Arc strongly supported. This proposed rule comes in addition to HUD’s recent “disparate impact” proposed rule.

“We oppose this step to weaken fair housing protections and limit implementation and enforcement of the existing rule. Instead, HUD must protect and promote existing civil rights laws for people with disabilities,” said Peter Berns, CEO, The Arc. “HUD is entrusted with the responsibilities of enforcing the Fair Housing Act and building inclusive and sustainable communities free from discrimination. The proposed rule would do the opposite.”

The public has 60 days to comment on the rule. The Arc will continue to work to ensure that people with intellectual and developmental disabilities have a right to live in safe, accessible, affordable housing in the community. We encourage you to make your voice heard on this proposal.

The Arc advocates for and serves people wit­­h intellectual and developmental disabilities (I/DD), 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 I/DD 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.

MLK Day logo that says "MLK Day of Service - Corporation for National and Community Service"

The Arc Joins #MLKDay of Service to End Food Insecurity

On this Martin Luther King, Jr. Day of Service, The Arc will once again commemorate the life of Dr. King and his dream for equality and civil rights for all people. The iconic civil rights leader’s passionate and persistent fight for equality and against discrimination paved the way for the disability community to advance and persevere in its ongoing fight for equality, rights, and inclusion.

In honor of his work, The Arc is making it a day on, not a day off! This year, several chapters of The Arc and partner organizations will work together to address food insecurity and promote inclusive volunteering to bring together people with and without disabilities to serve their communities.

“People with disabilities are often perceived as the ones always in need of help, but in reality, they also have the desire and ability to help others and to play an active role in strengthening their own communities,” said Peter Berns, CEO of The Arc. “In the true spirit of Dr. King, the Day of Service shines a light on what all people – including those with intellectual and developmental disabilities – can do to love, uplift, and support their neighbors.”

Interested in participating on a volunteer project with one of our 2020 subgrantees? See if there’s a volunteer event near you in the list below! You can also search the national database for all opportunities to get involved.

A graphic depicting Martin Luther King, Jr. that reads "25th MLK Day of Service - make it a day on, not a day off. January 20, 2020. Volunteer at MLKDay.gov.

2020 MLK Day of Service Partner Organizations

If you’re looking for more information on volunteering and people with disabilities, check out our free resources.

silhouette of a hand casting a paper ballot into a box

The Arc Announces Voter Accessibility Project for Iowa Caucuses

Washington, D.C. – In advance of the Iowa caucuses, The Arc is announcing its new CaucusAbility project to help ensure that people with intellectual and developmental disabilities (I/DD) in the battleground state have the opportunity to participate in our democracy in accessible, fair, and valuable ways.

The Arc will host pre-caucus trainings where Iowans with I/DD can learn how to caucus, practice the process, and also team up with a partner with disabilities or without disabilities to encourage caucus participation and to attend caucuses together.

People with disabilities face voter accessibility challenges and barriers to the caucus process, from crowded gymnasiums to limited seating. The caucuses are also unique in format – attendees may go in with a preference for a candidate, but throughout the event they will listen to other caucus goers make pitches for their preferred candidate. Quickly analyzing and processing the information and making an informed decision in that environment can be daunting. Furthermore, Iowa’s new and untested satellite caucus system for remote participation may be an additional barrier for people with I/DD.

WHO: The Arc

WHAT:  CaucusAbility

WHEN/WHERE:

Wednesday, January 15 Collegiate United Methodist Church Annex, Ames 1 p.m., 5:30 p.m.

Friday, January 17 Sioux City Public Museum, Sioux City 11 a.m., 12:30 p.m.  

Monday, January 20 Iowa City Public Library, Iowa City 10:30 a.m., 12:30 p.m.

WHY: Voter Accessibility

“The Arc is dedicated to a fully inclusive society for people with intellectual and developmental disabilities and that includes the right to civic engagement. Having the support of a partner at the Iowa caucuses and the opportunity to practice in advance will help people in the disability community exercise their right to vote. We know that in 2012, one in five voters with disabilities experienced a barrier at the polls. We believe CaucusAbility helps address some of the unique accessibility challenges Iowans with disabilities experience at the caucuses, despite equal access protections under civil rights law,” said Peter Berns, CEO, The Arc.

The Arc advocates for and serves people wit­­h intellectual and developmental disabilities (I/DD), 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 I/DD 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.