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Public Charge Rule Discriminates Against People With Disabilities

Washington, D.C. – The Arc is deeply concerned that the Department of Homeland Security’s discriminatory public charge rule is now in effect.

The new policy could have terrible impacts on people with intellectual and developmental disabilities (IDD) by allowing the federal government to deny admission into the U.S. or an application for a green card based solely on a person’s disability and the use or expected use of public benefits like Medicaid. Medicaid is the only funding source that covers long-term services and supports for many people with disabilities. Home and community-based services are not covered by private insurance. The rule also dramatically expands the list of public benefits the Administration considers a strike against you, and the negative consequences start at a much lower level of assistance.

The new policy also creates fear among immigrant families already in the U.S. that rely on public services – fear of jeopardizing their immigration status by utilizing the critical benefits they are legally entitled to. This is not only unfair and counter to the purposes of these programs, but can create bad economic outcomes and harm public health. We have already seen evidence of the intimidation and harmful consequences  of the new regulations. The Kaiser Family Foundation says nearly half of community health centers report that many immigrant families declined to enroll in Medicaid in the past year, and nearly a third of centers report that some patients dropped or decided not to renew coverage – even for their children.

“People with any type of disability should have equal opportunity to enter and live legally in the U.S. The public charge rule is cruel – and amounts to clear cut discrimination. We call on Congress to immediately intervene,” said Peter Berns, CEO, The Arc. “The Arc and our allies have been fighting for a long time against exclusion and bias based on disability and we will continue to do so on the ground and in the courts.”

The Arc and a large coalition of national disability advocacy groups 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.

While implementation of the rule had been halted by preliminary injunctions in various courts across the country, the U.S. Supreme Court has now stayed both the nationwide and state injunctions in two decisions, the most recent issued last Friday. Though the rule is now in effect across the country, litigation is ongoing, and The Arc will continue our work to honor and protect the human and civil rights of all people with IDD.

A woman in a floral bathing suit lays in a beach chair by the pool, smiling

This Black History Month, We Salute Lois Curtis

A woman in a floral bathing suit lays in a beach chair by the pool, smiling
Lois relaxing by the pool

This Black History Month, we celebrate the life and legacy of our African American heroes. They endured, persisted, and paved the way – for us all.

The Arc salutes Lois Curtis. Ms. Curtis’ bravery and refusal to live behind the dark walls of a state institution led to the landmark U.S. Supreme Court Olmstead v. L.C. decision in 1999. The case established that unjustified segregation of people with disabilities is a form of discrimination under the Americans with Disabilities Act – and that people with disabilities have a right to live in the community rather than institutions.

More than 20 years after Ms. Curtis returned to the community, she is living life to the fullest.

“I am doing pretty good,” Ms. Curtis tells The Arc.

She lives in her own home near Atlanta, Georgia. Ms. Curtis, 52, has a new and blossoming passion for singing and song writing. She enjoys writing original songs and her own versions of Motown hits. Ms. Curtis records at a local recording studio and takes keyboarding lessons. She is also invited to sing for groups in the Atlanta area.

Ms. Curtis says singing makes her feel good and reminds her of good memories with her mother.

These days, Ms. Curtis travels often with her family and direct support professional. She enjoys vacationing in Florida and her family is currently planning a trip back to Miramar Beach.

She loves church, going to the movies, shopping, getting her nails done, and going out to eat. Her favorite cuisine is Mexican.

Ms. Curtis’ longtime direct support staff Pertula Mark says it is a joy to see her happy. There are some tough days when Ms. Curtis talks about her time living in the institution or runs into people she knew at the facility.

Despite the pain of the past, Ms. Curtis, Olmstead co-plaintiff Elaine Wilson, who died in 2005, and attorney Sue Jamieson inspire us all to keep fighting for inclusion, community living, and equality for people with disabilities.

Thank you, Ms. Curtis!

Close up of U.S. dollar bills

The Arc Strongly Opposes Administration’s Budget Proposal

Washington, D.C. – The Arc strongly opposes President Trump’s 2021 federal budget request announced this week that includes sweeping cuts to programs that are lifelines for people with intellectual and developmental disabilities (IDD). The President’s budget proposal is a clear threat to people with IDD who need and rely on programs like Medicaid and other social service safety nets for basic survival and life in the community. The budget proposal reaffirms that the Administration’s priorities are not aligned with the well-being of millions of people with IDD in the U.S., including children and families seeking quality and fair education.

TOP THREATS TO PEOPLE WITH IDD IN WHITE HOUSE BUDGET PROPOSAL:

  1. Cuts to Medicaid and Social Security – President Trump promised to protect these programs on the campaign trail in 2016, but once again he is proposing to cut them – this time by about $1 trillion over the next decade. Medicaid, the primary health insurance program for people with IDD, would bear the brunt of this cut. The Administration proposes taking away health care from low-income working adults, a group that also includes many direct support workers for people with IDD, and encourages states to select per capita caps or block grant models to fund Medicaid for fewer people, limit services and supports under the program, and reduce eligibility.
  2. Cuts to Other Important Programs – President Trump’s budget request sharply reduces, or even eliminates, several programs that improve the quality of life for people with IDD, and help provide food and shelter:
    • Supplemental Nutrition Assistance Program (SNAP) or food stamps cut by nearly 30% over ten years.
    • Department of Housing and Urban Development cut by 15%, including zeroing out the Community Development Block Grant program and the National Housing Trust Fund, making it harder for people with IDD to find affordable housing.
    • Developmental Disabilities Act programs are also on the President’s chopping block. His budget proposes cutting Projects of National Significance (PNS) by 92%. PNS provide grants, contracts, and agreements for projects that create opportunities for people with IDD to participate in the community. The budget also requests cuts to State Councils on Developmental Disabilities by almost 30%. State Councils conduct advocacy and training and also promote the self-determination and inclusion of people with IDD.
    • Community Services Block Grant and the Social Services Block Grant are eliminated in the budget proposal. Both provide grants to communities to fund a wide range of services, including resources for people with IDD.

    Click here to see a listing of discretionary programs and their proposed percentage cuts.

  3. Discriminatory Education Programs – President Trump’s budget proposes a $5 billion school voucher program to support parents to choose any school for their children using public funding. But for students with disabilities, there is often no choice at all. Voucher programs allow schools to circumvent the Individuals with Disabilities Education Act (IDEA), forcing students with IDD to forego the rights and protections they would have attending public school. Moreover, private schools are free to choose not to accept students with disabilities, or not to accommodate the disabilities of children they accept, which history has taught us is likely to occur.
  4. Left Out of Paid Leave– The Administration proposes a new benefit for states to provide at least six weeks of paid family leave to new mothers and fathers, including adoptive parents. It leaves out the vast majority of people who take leave in the U.S. for family caregiving and medical reasons, including people with disabilities who need leave to address their own health and people who need leave to care for a family member with a disability or illness. We need paid leave policies that are inclusive of the needs of people with disabilities and their family members.
  5. Extending Tax Cuts – The President’s budget would permanently extend the 2017 tax cuts and the challenges they have created for people with IDD. Under current law, most individual income tax and estate tax provisions from the 2017 Tax Cuts and Jobs Act are scheduled to expire after 2025. Since the law passed, the bulk of the tax savings has gone to the wealthiest 10% of Americans and, rather than paying for themselves, the tax cuts have blown a huge hole in the revenue side of the federal budget, contributing to a projected $1 trillion deficit this fiscal year, and prompted calls to cut Medicaid, Social Security, and other programs vital to people with IDD.

“President Trump’s ‘Budget for America’s Future’ attempts to create an especially challenging future for Americans with intellectual and developmental disabilities. As we have seen in his past budgets, proposed cuts to spending fall disproportionately on people with disabilities who depend on a number of federal programs for their health and well-being and to stay engaged in their communities. We ask that the President and leaders in Washington devise fiscal plans that help make life in America better for people with IDD, not worse,” said Peter Berns, CEO, The Arc.

A woman with blonde hair wearing a blue dress poses, smiling, against a wall with her arms gently crossed at the wrist.

Serving a State: An Interview With the Only Chapter in Oklahoma

Lisa Turner, Executive Director of TARC

As the only chapter of The Arc in the state of Oklahoma, TARC has both a unique opportunity and challenge. Around 60,000 Oklahomans have intellectual and/or developmental disabilities–and are spread across almost 70,000 square miles. The chapter employs a range of strategies to help as many people as possible. Read more about their work below.

Tell us what it’s like being the only chapter of The Arc in your state.

As the only affiliate of The Arc in Oklahoma, TARC takes an active role in convening organizations serving the IDD community for events, like the upcoming listening session in Tulsa. TARC participates in numerous statewide initiatives that impact the lives of those we serve. We are active in public policy and advocacy and recruit and train others across the state to join our efforts.

What communication strategies do you employ to reach as many people as possible throughout the state? (emails, print products, online groups, etc)

TARC recently conducted a statewide community needs assessment to identify the unmet needs of individuals with IDD and their families and caregivers. Focus groups included self-advocates, family members or caregivers, community partners, and funders. Through this process, unmet needs were identified, helping to refine TARC’s strategic plan and guiding us to form more partnerships and collaborations.

In addition, we work with partners around the state like the Developmental Disabilities Council, People First, and other like-minded organizations to help generate awareness about IDD-related events, advocacy opportunities, and public policy issues.

How do you structure your programs and services to be available to as many people as possible?

TARC is stepping up communication and marketing strategies to develop the infrastructure, partnerships, and tools to inform as many people as possible about the needs of the IDD community and services available. TARC just opened a new office in Oklahoma City to increase our presence at the State Capitol and engage in opportunities for more partnerships, services, and funding.

Do you partner with other providers and organizations to maximize your ability to serve the community? If yes, how so?

TARC recently received the 2019 Goodwill Community Partner of the Year Award for convening several providers and nonprofits to host a transition resource fair for self-advocates. We also support two People First chapters, are active in Oklahoma People First, and the Oklahoma Self-Advocates Network. Together, we co-host IDD awareness events at the Capitol and in our community. We also invite participants from employment agencies to join us for MLK Volunteer Service days.

How does being the only chapter in the state affect your funding streams and strategy for engaging with sponsors, grants, and donors?

TARC contracts with the State of Oklahoma to provide residential advocacy and monitoring for adults residing in state-funded group homes in all of Oklahoma’s 77 counties. For much of our organization’s history, funding has come from the Tulsa area, where we are located. We recently began expanding our relationships with funders and sponsors across the state since our reach really is statewide through our advocacy work and our state contract.

Do you have any advice for other chapters who are merging to cover a larger area, or who are also the only chapter in a large geographic area?

Collaborations and partnerships are key! Consider collective impact models to enhance your advocacy efforts and voice. Together we are stronger.

Lisa Turner, TARC Executive Director

lturner@ddadvocacy.net