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The Arc Applauds New Effort to Reduce Red Tape in Medicaid and Other Federal Health Programs

WASHINGTON, DC – Today, the Biden Administration proposed a new rule finally updating the eligibility and enrollment processes for Medicaid and the Children’s Health Insurance Program (CHIP). This is welcome news to people with intellectual and developmental disabilities (IDD) and their families, who navigate a complicated bureaucracy to access the health and community-based services they need for their wellbeing and independence.

This announcement is the culmination of efforts by The Arc and many other organizations and individual advocates to raise the struggles that people face with accessing and maintaining eligibility for these critical programs. In addition to covering basic health care, Medicaid also provides home and community-based services, or HCBS, which make life in the community possible for millions of people with disabilities who often need help with things like eating, dressing, personal hygiene, working, and managing health care or finances. CHIP is an important health coverage program for kids with disabilities who don’t qualify for Medicaid.

This rule, if finalized, would standardize and improve eligibility and enrollment policies, such as limiting renewals to once every 12 months, allowing applicants 30 days to respond to information requests, requiring prepopulated renewal forms, and establishing consistent renewal processes across states.

“The bottom line is these proposed changes are going to help a lot of people navigate getting the benefits they need and keeping them. We frequently hear from people with disabilities and their families how incredibly overwhelming it is to get started, and once they have Medicaid or other federal health benefits, maintaining eligibility is a struggle due to red tape. We look forward to working with the Administration to finalize these changes to improve the lives of people with disabilities and their families,” said Peter Berns, CEO, 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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Guiding The Arc Through Lived Experience With Disability

“Nothing about us without us” is a theme of the disability community, reminding the world that people with disabilities expect and deserve autonomy over their lives. This includes actively participating in the organizational structures that advocate for and with people with disabilities.

With this guiding principle in mind, The Arc established its National Council of Self-Advocates (NCSA) in 2012. NCSA abides by the “nothing about us without us” motto by creating a space where people with intellectual and developmental disabilities (IDD) can provide guidance to The Arc and offer their unique disability perspectives. The council also strives to provide professional growth opportunities to its members, such as access to job opportunities and other leadership roles.

NCSA is led by Chloe Rothschild, a national board member for The Arc, and it is supported by Juan Guerrero, a policy associate for The Arc. As a sibling of an individual with a disability, he understands and values the need to amplify the perspectives of people with IDD. This understanding has motivated him to constantly create new growth opportunities for NCSA’s approximately 300 members.

NCSA’s members are from all over the U.S., and many credit the group for providing a space to meet other self-advocates and freely discuss their thoughts on certain topics. Hearing from one another is essential to personal growth, especially in the advocacy space.

At the beginning of 2022, the council set a goal of providing speaking engagements, both to NCSA Officers and the general council, and they also decided to gather more frequently. Each monthly meeting centers around a topic relevant to self-advocacy, such as employment, voting, interacting with law enforcement, leading with a disability, and more. In a recent session, three council members presented on employees with disabilities assuming leadership positions in the working world. From time to time, members will be called upon to review materials created by The Arc.

General members can apply for a two-year officer position. If elected, they are expected to attend officer meetings, and they are also charged with setting the monthly agenda and preparing presentations for the regular monthly meetings. Recently, the current officers have begun leading and facilitating these monthly sessions.

Using the knowledge and experience gained in this space, NCSA member Mark got the opportunity to speak at the Disability Vote Submit. He was also able to help with The Arc’s toolkit on self-determination, and he helps doctors understand how to work with people with disabilities.

Another member, Nathaniel, advises NCSA has deepened his understanding of the federal policy system. With his newfound knowledge, he plans to serve as a mentor to people with disabilities by pursuing their Bachelors, Masters, or even a PhD.

There’s no better time to join than right now! We’re currently growing and would love for anyone interested in joining to come check us out. The only requirement for acceptance is that you must identify as a person with a disability.

Learn more about NCSA and click here to join as a general member. Current members can also apply for an officer position this fall. We look forward to shaping the future of disability with you!

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The Arc Applauds Federal Student Loan Debt Relief Plan

Washington, DC— With the current moratorium on student loan payments set to expire at the end of this month, the Department of Education and the White House have announced a new plan to tackle student loan debt for millions of borrowers across the country. These new changes will help millions of people with disabilities, if they can access the new programs.

The new changes include $10,000 of debt cancellation for most borrowers ($20,000 if the borrower has Pell Grant loans) and a new income-driven repayment plan for undergraduate borrowers. These new programs may be able to help millions of borrowers with disabilities if the implementation is seamless and accessible to those that are qualified.

Historically, the Total and Permanent Discharge (TPD) program has provided an avenue to discharge federal student loan debt for people with permanent disabilities that limit their ability to work. However, the TPD required borrowers to apply for debt forgiveness and was filled with red tape and complicated, paperwork-heavy processes. Even after the TDP process was improved and automated, eligibility standards continue to be high. Millions who do not meet these standards—including other marginalized groups like those living in poverty and those with language barriers—will need to rely on the Administration’s new relief plan.

“The process for student loan debt relief has long been cumbersome and ineffective for people with intellectual and developmental disabilities, who already must navigate complicated state and federal benefit programs,” said Bethany Lilly, Senior Director of Public Policy for The Arc. “We are relieved that the Administration is taking steps to provide debt relief and make long-needed reforms to existing repayment programs. During this time of unprecedented financial strain, it will be crucially important to ensure that people with disabilities can access these new options.”

The Arc looks forward to working with the Administration to ensure that the new options are as automatic as possible for borrowers and accessible for people with disabilities.

The United States Capitol Building

Senate Leaves Out of Reconciliation Bill a Badly Needed Investment in Disability Services

WASHINGTON, DC – Following the U.S. Senate’s vote today on the Inflation Reduction Act, people with disabilities, their support staff, and families will continue to fight for desperately needed resources for the home and community-based services system that has been strained to the breaking point throughout the COVID-19 pandemic.

Throughout the budget reconciliation process, The Arc and our allies in the disability, labor, and direct care worker communities has been advocating for a historic investment in home and community-based services. But the legislation that just passed the Senate completely left out the needs of the disability services system, and the workforce that is disproportionately women of color, who are long overdue for the recognition and benefits of a raise for their important work. It also fails to address other longstanding needs of people with disabilities, family caregivers, and workers, such as paid leave. The bill does help our community in other ways – it will directly impact people with disabilities and their families by lowering drug prices for Medicare beneficiaries, continuing health insurance subsidies, and taking steps to address climate change.

“We are deeply disappointed that Congress is not taking this historic opportunity to provide people with disabilities and their families the services and supports they need to live as independently as possible.

“Since the start of the pandemic, the disability services system has been teetering on the brink of collapse. The entire care infrastructure already had huge gaps and cracks, and the unprecedented pressure of this crisis galvanized people with disabilities, their support staff, and their families to advocate for the investment needed to help people now and into the future.

“For the first time, many people who don’t have a personal connection to disability became aware of the needs of our community, thanks to advocates willing to share their deeply personal struggles with legislators, the media, and their neighbors. The uprising generated hundreds of thousands of pleas to Congress to enact a care package that would provide more access to services in the community, and pay the people doing the work a fair, living wage.

“We will not stop pushing for what we need because home and community-based services for people with disabilities make all the difference in the quality of life for a person with a disability and their family,” said Bethany Lilly, Senior Director of Public Policy, The Arc.