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Disability Discrimination Complaint Filed Over COVID-19 Treatment Rationing Plan in Washington State

/in , , /by Pam Katz

SEATTLE – As COVID-19 cases increase, the experience in other countries and predictions of U.S. health officials is that there will not be enough acute care services or equipment, such as ventilators, to meet the demand of patients with the virus who require intensive treatment.  Health care professionals in the United States are already developing protocols for responding to COVID-19, including treatment rationing that will determine who will and will not have access to life-saving treatment.   

Self Advocates in Leadership (SAIL), Disability Rights Washington (DRW), and The Arc of the United States (The Arc) filed a complaint with the U.S. Department of Health and Human Services Office for Civil Rights (OCR) about their grave concerns that the plans being put in place discriminate against people with disabilities in violation of federal disability rights laws, including the Americans with Disabilities Act (ADA), Section 504 of the Rehabilitation Act (Section 504) and Section 1557 of the Affordable Care Act (ACA) and place their lives at serious risk.  We call for OCR to take immediate action to address this discrimination and assist local jurisdictions and providers to develop non-discriminatory approaches before there are lethal consequences to application of these illegal policies.

The complaint focuses specifically on the plan released Friday by the Washington Department of Health and the Northwest Healthcare Regional Network that even those who developed the plan admit “is not going to be pretty.”

“I know already that intellectually disabled people get denied care because of being seen as lacking value,” said Ivanova Smith, Chair of Self Advocates in Leadership and individual complainant in the letter filed today with HHS OCR. “I deserve the same rights as anyone else. These policies discriminate against me and put my life at risk.”

Published descriptions of the goals and flow charts in the WA DOH and NHRN plan mirror the existing policy of the state-run University of Washington Medical Center (UWMC), which gives priority to treating people who are younger and healthier and leaves those who are older and sicker—people with disabilities—to die.    

A Seattle area patient of the University of Washington Medical Center explained that “I am concerned that a doctor will see my diagnosis of cystic fibrosis in my chart and make lots of erroneous assumptions about me. Cystic fibrosis often comes with significant breathing difficulties and a life expectancy of 30 years,” said Rose, not her real name due to fear of retaliation. “However, tests show that I have better breathing capacity than most people without cystic fibrosis and although I’m 28 years old, I have never been hospitalized and I am not anywhere close to dying. If I get COVID-19 and need intensive treatment like a ventilator, I fear the person making decisions about who gets treatment and who doesn’t will see my file among dozens or even a hundred or more people all competing for limited spots and my diagnosis will stand out and be used to exclude me from getting treatment despite what my individual medical tests and record say.”

Rose’s case shows how this plan will have a heavy impact on people with disabilities.  While medical knowledge of COVID-19 is constantly evolving, it is known that having an underlying medical condition heightens the effect of the virus. The conditions frequently mentioned include compromised immune, respiratory, cardiovascular and endocrine systems. All of these are common symptoms of many different physical disabilities and when significant enough form the basis of the disability on their own.

“The disability community is a broad, inclusive community where individuals with a variety of unique life experiences join forces to fight the many ways they are similarly discriminated against. We will not sit by as members of our community are left for dead. We stand up for those with preexisting disabilities and those with newly acquired disabilities who are impacted by COVID-19. We implore OCR to rein in and provide urgently needed guidance to the health care professionals who are prepared to relegate members of our community to die,” said David R. Carlson, Director of Advocacy, Disability Rights Washington.

“As COVID-19 sweeps our country, we are reminded once again that for far too long, the lives of people with disabilities have been undervalued. It is cruel that a person with a disability seeking medical treatment during this pandemic may not receive the care they need or they may be left to suffer or die because they are seen as less than or other. It is urgent that the federal government make very clear right now, on the front end of this health emergency, that it will swiftly enforce federal laws that protect against medical rationing plans discriminating against people with disabilities. We know this is just the beginning, and that there are many more days and months to come. The federal government must get it right, now, from the start. The lives of millions of people with disabilities across the nation are at stake – and those lives do have value,” said Peter Berns, CEO, The Arc.

The complaint stresses that OCR has a very brief moment to intercede. “If OCR fails to act swiftly to clearly and firmly articulate the violation of civil rights implicated by the rationing plan about to be unveiled in Washington, there will be no way to undo the lethal outcome of the discriminatory plans that have been formulated without OCR’s guidance. We request that you enforce the obligations of the healthcare professionals in Washington to develop non-discriminatory approaches to the delivery of care before it is too late.”

“Even in the midst of the current crisis, Washington State must abide by its obligation to not discriminate against people with disabilities. The complainants are on the front lines of a vital civil rights struggle. Their lives are at stake. I urge the HHS Office for Civil Rights to take swift action to protect them,” said Ari Ne’eman, Visiting Scholar with the Lurie Institute for Disability Policy at Brandeis University.

Complainants are represented by their counsel who are available for comment:

David Carlson, Disability Rights Washington

davidc@dr-wa.org

Shira Wakschlag, The Arc of the United States

Wakschlag@thearc.org

Sam Crane, Autistic Self Advocacy Network (ASAN)

scrane@autisticadvocacy.org

Jennifer Mathis, The Bazelon Center for Mental Health Law

jenniferm@bazelon.org

Cathy Costanzo and Alison Barkoff, Center for Public Representations

ccostanzo@cpr-ma.org; abarkoff@cpr-us.org

Samuel Bagenstos

sbagen@gmail.com

Woman on escalator wearing a face mask; she's holding a cell phone in one hand and her suitcase handle in the other

COVID-19 Legislation First Step in Addressing Crisis for People With Disabilities, Families

/in , , , , , /by The Arc

Washington, D.C. – People with intellectual and developmental disabilities (I/DD) are facing threats to their health and wellbeing due to the global COVID-19 pandemic, and the legislation passed by Congress and on its way to President Trump’s desk is a start in addressing their needs in this crisis.

The legislation includes:

  • A 6.2% increase in federal reimbursement for state Medicaid programs (FMAP), which will help state governments in their efforts to combat the pandemic;
  • Emergency requirements for all health insurers to cover testing;
  • Expanded nutrition assistance and crucial waivers for the Supplemental Nutrition Assistance Program and school meals;
  • Expanded unemployment insurance; and
  • Limited paid sick day and paid leave provisions that do not explicitly include caregivers for people with disabilities.

“This crisis is going to have a major impact on people with intellectual and developmental disabilities, their families, and caregivers, and this legislation is a good first step in meeting their needs. As this crisis evolves, more will have to be done at the federal level for all Americans, particularly those with disabilities, their families, and caregivers,” said Peter Berns, CEO, The Arc.

The Arc is working hard with legislators to ensure that the next package more directly covers the unique needs of people with disabilities, their families and the direct support workforce:

  • An additional FMAP increase that creates a grant program to support access to home and community-based services and to support the direct support professional (DSP) workforce with better pay during the crisis, and greater flexibilities in hiring and service provision.
  • A permanent reauthorization of the Money Follows the Person program, or MFP, which gives funds to states to move people with disabilities out of segregated settings and into the community. There is a real threat to unnecessary institutionalization. The flexibilities and funds from permanent MFP will support states to continue transitions to the community and away from congregate settings.
  • Economic stimulus with increased asset limits. For people with I/DD receiving Supplemental Security Income (SSI) and/or Medicaid, strict asset limits must be maintained to receive the benefits. We strongly support stimulus for low income individuals, but because of the asset limits, people with I/DD may end up with too much money in the bank, jeopardizing their SSI and/or Medicaid. Asset limits should be increased or paused to ensure that people with disabilities are able to benefit from the stimulus without jeopardizing their benefits.

“Without addressing these issues, the lives of people with disabilities and their families could be altered with no turning back. People could be placed into institutions and other congregate settings in violation of their rights and posing risk to their health. Families could be more pressed to choose between a paycheck and health and well-being. And our current DSP workforce crisis could get even worse, impacting day to day life for millions of people with disabilities. We have an opportunity in the coming days to address these big issues, and we are urging Congress to act swiftly,” said Berns.

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 a microscope

Coronavirus Relief Bill: The Arc Fights for Disability Community

/in , , , /by Pam Katz

The Arc is pleased that Congress is recognizing the unique and vital needs that people with disabilities have when facing the COVID-19 pandemic. The emergency relief bill introduced in the U.S. House of Representatives today includes important and specific measures that would help mitigate the potentially catastrophic impacts of the novel coronavirus on millions of people with disabilities.

As we grow increasingly concerned over the threat of COVID-19 to people with disabilities, their families, and the workforce that supports them, we are encouraged that the House bill includes increased federal reimbursement for state Medicaid programs, which will help the uninsured gain access to COVID-19 testing, emergency requirements for all health insurers to cover testing, expanded nutrition assistance, and paid sick days and paid leave.

We are glad to see that the paid sick time and paid leave provision could be used to care for loved ones who are “otherwise in need of care.” That would cover workers who take time off to care for a loved one with a disability who has lost their primary source of care due to the new coronavirus.

As the legislation moves through Congress, we are advocating for specific funding to support the direct support professional workforce that supports people with disabilities, whose wages largely come from Medicaid, and that they are covered by both paid sick days and paid leave policies put in place by this legislation. Further, people with disabilities must be able to have access to a 90-day supply of medication and medical supply re-fills.

“This bill addresses many of the needs of people with disabilities in this global crisis. As the coronavirus relief bill moves through Congress, the paid sick days and paid leave policy must include funding to cover our direct support workforce,” said Peter Berns, CEO, The Arc. “We fear that without appropriate action by Congress and President Trump, the coronavirus pandemic could lead to further exacerbation of the workforce crisis and the unnecessary placement of people with disabilities and aging adults into institutions and other congregate settings in violation of their rights and posing risk to their health.”

Two green vending machines, one with food and one with drinks, next to each other

Getting Creative With Fundraising at The Arc of Iowa

/in , /by Pam Katz

The Arc of Iowa was struggling financially with local chapters closing, memberships declining, and a growing need for advocacy related to managed care moving into the state. They wanted to build a social entrepreneur program that would help augment current fundraising and membership dues. The program needed to increase the awareness of The Arc of Iowa, engage existing chapters, and be a program that could be grown in both rural and urban communities. In what felt like a do or die moment, the board and director took a leap and spent every dime on building 28 vending machines that were placed in four communities across the state. We chatted with the Executive Director of The Arc of Iowa, Doug Cunningham to learn how the program works.

What does the manpower behind the vending machines look like? How do you fund, place, stock, and maintain them?

We partnered with Goodwill to assist with staffing statewide. One individual can stock three to four machines a day. They sort products based on a checklist, package them, and take them to the location. They then put the items in the machines, count the items, clean the machine, and digitally fax the inventory back to the State Office each day. We placed machines in the Goodwill Service Centers and on their store floors, programs that serve individuals with disabilities, and local businesses. They recruit workers with varying abilities and we train them to stock and service the machines. They even donated space in their local service centers to warehouse products. The sales are GPS monitored and we can see when machines require service or stocking from a central location. The machines cost between $4,000 to $7,000 a piece and require about $1,500 in coins and stock to set up. The machines are expected to have a useful life expectancy of 10 to 15 years.

Where does profit from the machines go?

Annually the machines generate about $5000 to $7000 a piece. Merchandise costs about 35% of what we can sell it for and labor is an additional 20%. We give the local sites 10% of the revenue and we used the remaining proceeds to build a new interactive website, a new statewide fund raising tool that local chapters can use,  training for self-advocates, fund a liaison at the State Capital, pay affiliation dues, and to further grow the vending program.   

How the initiative resulted in new or amplified relationships with other organizations/companies throughout the state?

One of the biggest challenges that the vending machines helped us overcome is getting out of our state offices and forcing us to work in the local communities. There was a disconnect between the state office and the local chapters. The vending machines required us to know the staff in Goodwill, our local chapters, and other agencies that allowed us to place machines in their facilities. It also gave us a unique way to inspire donors to invest in The Arc of Iowa again. In fact, a donor ended up paying off $70,000 of our machines and challenged the community to assist which generated another $25,000 in gifts.   

What are your hopes for the long-term growth and sustainability of the program?

We currently have 28 machines across the state which generate $90,000 annually. We hope to have hundreds of machines that generate an endless and consistent stream of revenue that can promote advocacy for years to come. After three years, and the generosity of donors, the machines were profitable and now provide a steady stream of revenue every day.  

How can other chapters explore and implement similar revenue-creating ventures?

The company that builds these machines can ship and set them up internationally. This opportunity is still in its infancy, and we made mistakes—however, there is room in the profitability to make those mistakes and learn from them. To make the program successful you need to think big. Build lots of machines and the infrastructure around it. The more machines you have, the better the value and the more efficient you become. Be interdependent with your local chapters for the highest impact. To make The Arc relevant, the community needs to see us. These machines, staffed by people with disabilities and used as big marketing machines, can promote awareness and foster financial independence for your chapter. Please feel free to reach out to me at doug@thearcofiowa.org for further questions.

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The Arc, Allies, and Self-Advocates Finally ‘Stop the Shock’

/in , , , , , /by Kristin Wright

WASHINGTON – After too long of a wait, The Arc celebrates a victory in our seemingly never-ending fight to underscore the value and human dignity of the lives of people with disabilities. After years in limbo, the Food and Drug Administration announced Wednesday it will finally ban the use of the electric shock device that has inflicted painful abuse on residents of the Judge Rotenberg Educational Center (JRC) in Canton, Massachusetts for decades. JRC is an institution for children and adults with intellectual and developmental disabilities and mental health issues.

By the FDA’s own count, as many as 50 JRC residents wear the shock device. Staff members use remote controls to administer shocks for perceived misbehavior. JRC uses the barbaric and inhumane practice, despite substantial evidence that the shocks are painful and traumatizing to residents.

“The Arc and The Arc of Massachusetts, alongside several disability rights organizations and empowered self-advocates across the country, fought for decades to ‘stop the shock’ and to end abusive and cruel practices masquerading as ‘behavioral treatments.’ People with disabilities deserve to live free from fear and torture. The FDA’s decision, years in the making, to ban the use of the electric shock device is a hard-fought victory and a testament to what is possible when disability advocates fight their hardest for change and for the civil rights of people with disabilities. We hope the ban is a significant step in ending the use of all aversive procedures on people with disabilities, who deserve to be supported with dignity,” said Peter Berns, CEO, The Arc.

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Public Charge Rule Discriminates Against People With Disabilities

/in , , /by The Arc

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 (I/DD) 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 I/DD.

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

This Black History Month, We Salute Lois Curtis

/in , , /by Pam Katz
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

/in , , /by The Arc

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 (I/DD). The President’s budget proposal is a clear threat to people with I/DD 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 I/DD in the U.S., including children and families seeking quality and fair education.

TOP THREATS TO PEOPLE WITH I/DD 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 I/DD, 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 I/DD, 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 I/DD, 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 I/DD 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 I/DD 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 I/DD.
    • 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 I/DD.

    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 I/DD 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 I/DD. 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 I/DD.

“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 I/DD, 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

/in /by Pam Katz
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 I/DD 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 I/DD 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 I/DD-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 I/DD 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 I/DD 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  

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Proposed Medicaid Restructuring Will Harm Disability Community

/in , /by The Arc

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.