Trump Budget and Health Care Cuts are Devastating for People with Disabilities, Including Soojung’s Family

WASHINGTON, DC – Today the Trump Administration released its first ten year budget proposal, and the numbers are devastating for people with intellectual and developmental disabilities (I/DD) and their families. On top of the more than $800 billion in Medicaid cuts already approved by the House of Representatives, the Trump Administration is planning for $610 billion in cuts to Medicaid; $72.4 billion in cuts to Social Security’s disability programs; and hundreds of billions more in cuts to other effective federal programs that are vital to people with I/DD.

“Where we invest our federal dollars is a measure of our values as a nation. Today the Trump Administration showed its cards, and coupled with the devastating Medicaid cuts already approved by the House of Representatives in the health care bill, the deck is stacked against people with disabilities.

“In the last few weeks, I’ve traveled to chapters of The Arc in Maryland, North Carolina, Wisconsin, and even Alaska. Chapters of The Arc sprang up in these communities and across the country decades ago because people with disabilities and their families were appalled by the segregation of people with disabilities in inhumane institutions, and they were determined to make progress. And we have fought for rights, closed institutions, opened up the community and classroom, and paved the way to employment. Two effective programs built on bipartisan policy over the years – Medicaid and Social Security – have been essential to this progress. Medicaid provides health care and long term supports that help make a life in the community possible for many people with disabilities, and Social Security is far too often the only thing keeping the lights on and food on the table for a person with a disability.

“That these proposed cuts come in the very same package that is proposing the largest tax cuts in our nation’s history is simply obscene. Giving $5 trillion in tax cuts that primarily benefit wealthy individuals and corporations while simultaneously threatening the lives of everyday people defies comprehension.

“This budget – this Trump card – along with the health care cards being played in Congress as we speak, will dismantle decades of progress for people with disabilities and their families. So I’m calling on all advocates to do what they have done for decades, band together to put a face on these cuts. Share your story in your community and with your elected officials, and tell them to reject these cuts, before we go back in time to an era of discrimination and isolation,” said Peter Berns, CEO, The Arc.

In tandem with this budget news, The Arc is releasing a video which shares the story of a Maryland family which risks losing access to critical care for one of their children due to impending cuts to federal Medicaid funding. The video features Soojung, whose 11-year old daughter Alice, has Rett Syndrome and relies on overnight nursing services to be able to live at home with her family. Soojung speaks about the challenges she and her husband faced accessing these services, including having their requests turned down by private insurers. After years of waiting and uncertainty, Alice was finally accepted to a Medicaid program that provides her with nightly nursing services. These services have led to a great improvement in Alice’s health, making 2016 the first year of her life without a hospital stay.

For many families like Soojung’s, their health and lives could dramatically worsen if the Trump Administration’s proposed Medicaid cuts became a reality or if the over $800 billion in cuts over 10 years to federal Medicaid funding, proposed in the House-approved American Health Care Act (AHCA), go into effect. These cuts would not only force states to cut eligibility for their Medicaid programs, but would also diminish the quality and quantity of services that are provided to people who are already enrolled in these programs.

This video is the fifth in a series of videos The Arc is releasing, sharing the personal stories of people with disabilities and their families, and the impact of the Affordable Care Act (ACA) and Medicaid on their lives.

o   Meet Bryan

o   Meet Thelma

o   Calvin’s Story

o   If I could say one thing

 

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 650 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.

What Do Moms Need?

Last week, The Arc was excited to join nearly 50 national organizations that co-sponsored the #MomsDontNeed / #LasMamásNoNecesitan Tweet storm. On Twitter, we called attention to recent actions and policies that threaten mothers and families, and highlighted the kind of supports they and all people truly need to protect and advance their economic security, health, and more.

Moms with disabilities, and moms of children with disabilities, do so much. And across the nation, moms are working harder than ever. With Congress considering legislation to devastate our health care system, and with new reports of major cuts in the works to Medicaid, Social Security disability benefits, and other effective federal programs, so much is at stake – for moms, and for all of us. As The Arc celebrates Mother’s Day, here are three things that we know are vital to supporting mothers and their many contributions.

1. Access to Health Care and Long-Term Supports and Services. Health insurance under the Affordable Care Act can make all the difference in the world. Just listen to Lindsay, mother of toddler Calvin, if you’re not sure why. In addition, for many people with intellectual and developmental disabilities, Medicaid provides a range of essential medical and long-term supports and services that make community living a reality and for many, can be the difference between life and death. Unfortunately, the American Health Care Act (AHCA) – passed recently by the House of Representatives and now before the Senate – shows callous and dangerous disregard for the wellbeing of people with disabilities and their families. Among the bill’s many harmful provisions, the AHCA would decimate Medicaid, erase health insurance cost protections for people with pre-existing conditions, and cause people to lose essential health benefits under state waivers. The AHCA is one bill that #MomsDontNeed.

2. Economic Security. For most moms and families of children and adults with intellectual and developmental disabilities, every penny counts. For example, raising a child with disabilities can be tremendously expensive due to major out of pocket medical and related costs, like adaptive equipment and therapies. For many families, earnings from work aren’t enough to maintain a basic standard of living and cover these often-extraordinary disability-related costs. It’s only possible because of income from Social Security’s disability programs, including Supplemental Security Income (SSI). Unfortunately, recent news reports suggest that President Trump’s 2018 budget will propose major cuts to Social Security disability benefits, as well as Medicaid and a host of other programs – totaling $800 billion in cuts. That’s another devastating idea that #MomsDontNeed.

3. Paid Family and Medical Leave. Moms with disabilities, and moms of children with disabilities, know better than most that time is a precious resource. At The Arc, we hear often from moms and dads struggling to get enough paid time off work: to be with a new baby in the Neonatal Intensive Care Unit; to care for a new baby with disabilities when they first come home; to take their son or daughter to medical appointments, therapies, and after school programs; to attend IEP meetings and other school appointments – and so much more. And while we all love Wonder Woman, let’s face it, moms get sick, too. Moms shouldn’t have to choose between a pay check and a child’s health, or a pay check and their own health. Not moms, not anyone. That’s why The Arc is joining the call for a robust federal paid family and medical leave program. We hope you’ll #JoinOurFight!

The Passage of the AHCA: The Real Life Consequences for People with Disabilities

By: Julie Ward, Director of Health Policy and Nicole Jorwic, Director of Rights Policy

They say that if you want to know about a person, look at how they spend their money; to know the values of a nation, the same is true. The current Affordable Care Act and Medicaid fight is showing a side of the political system that is disheartening and shameful. The American Health Care Act, passed by the U. S. House of Representatives, lowers taxes on wealthy individuals and corporations and pays for it by taking over $800 billion from the Medicaid program which serves low income children, seniors, people with disabilities, parents, and other adults.

The fundamental injustice of transferring wealth from low income people to businesses and wealthy people is compounded by the fact that these deep cuts in Medicaid will not make private health insurance more affordable or available, the stated goals of supporters of the AHCA. Instead the AHCA dismantles the main source of funding for long term supports and services (LTSS) for seniors and people with disabilities. The demand for these services, such as help to stay in a person’s own home, will grow as the population ages. Instead of addressing the need for an LTSS policy in a positive way, it makes devastating cuts and places a per capita cap on the Medicaid program.

An estimated 24 million people will lose their insurance coverage and millions are at risk of losing the supports and services that help them live in the community. Every one of those numbers represents a person. A person who will no longer be able to feel the peace of mind of health coverage, a person who now will worry that their guarantee to services under Medicaid is irreparably changed, a person whose supports to assist them to work are at risk, and a person who now has to fear that their son or daughter will end up in an institution, when they have fought their whole lives to keep him/her in the community.

Medicaid is the main source of funding for over 77% of the supports and services that individuals with intellectual and/or developmental disabilities (I/DD) use to live in the community and has been able to grow because of the widespread bipartisan support. They have had bipartisan support because disability knows no political, or geographical, ethnic, or socioeconomic boundaries. These supports and services provide dignity to people with I/DD by providing help with meals, bathing and dressing, toileting, in-home skilled nursing, and communication support, to name but a few. These supports are critical to people with disabilities to be able to live their lives in the community. In many cases, they can be the difference between life and death.

We fear that because home and community based services are not mandatory services, they will be cut first. States will return to outdated modes of serving people with disabilities, congregating large numbers of individuals in facilities with inadequate staffing and no real-life opportunities. The per capita cap proposal will pave a path backwards to institutional care and segregated services.

The AHCA has many other troubling provisions and The Arc has developed a summary of how the bill impacts people with disabilities.

As the Senate develops its health care reform proposals, we must be constant reminders that the services and supports to people with disabilities and their families CANNOT be what pays for health care reform and tax cuts. Lives depend on it.

“Don’t Take Away Our Independence”: Watch Thelma as The Arc Denounces Massive Cut to Medicaid

WASHINGTON, DC – Today, The Arc released a video which highlights how the House-passed cut to Medicaid funding (which exceeds $800 billion) will negatively impact people with disabilities’ capacity to live independently. The video features a conversation with Thelma, a long-time Washington, DC resident who relies on Medicaid to employ a health aid who helps her perform daily household tasks that she can no longer perform by herself. She, like many others in the disability community, fears that reduced federal funding for Medicaid will limit her ability to hire attendants or access other services she needs to live independently, in the community in which she has lived since her youth.

The video comes on the heels of the House of Representatives passing the American Health Care Act, which included over $800 billion in cuts over 10 years to federal funding for Medicaid programs. This cut would not only force states to cut eligibility for state Medicaid programs, but will also diminish the quality and quantity of services that are provided to people who are already enrolled in these programs. For many people with intellectual and developmental disabilities, Medicaid generally is the only source of funds for them to live and work in the community with friends and families and avoid costly, harmful, and segregated institutions.

“Thelma is part of her community because of Medicaid. And her community is Washington, DC, right in the backyard of where Congress is considering dismantling the program that provides services and supports to Thelma and millions of other people across the country. Every member of the U.S. Senate needs to hear Thelma’s plea, and listen to the thousands of people they represent who have a disability, or have a family member with a disability, or provide services. This is about peoples’ lives – nearly a trillion dollars in cuts will drastically impact the ability of people with disabilities to be a part of their communities. It is unacceptable and The Arc and our network won’t stand for it,” said Marty Ford, Senior Executive Officer, The Arc.

This video is the third in a series of videos The Arc will be releasing in the coming weeks, sharing the personal stories of people with disabilities and their families, and the impact of the Affordable Care Act (ACA) and Medicaid on their lives. The first video featured nine people who rely on the ACA and/or Medicaid, and each one has a personal message for Members of Congress and the Trump Administration. The second video illustrates how Congress’ proposed changes to the ACA and Medicaid would negatively impact Americans with disabilities and their families. The video features an interview with Toby, Lindsay, and Calvin from Fairfax, VA. Calvin has Bilateral Fronto-Parietal Polymicrogyria and Cerebral Palsy and relies on multiple insurance plans to cover his medical and therapeutic treatments.

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 650 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.

The Arc Responds to House Passage of The American Health Care Act: “Shows callous and dangerous disregard for the wellbeing of people with disabilities”

Washington, DC – The Arc released the following statement following the House of Representatives passage of the American Health Care Act (AHCA), with the addition of amendments that take the bill from bad to worse for people with intellectual and developmental disabilities (I/DD) and their families:

“Members of the House of Representatives who supported the American Health Care Act voted against their constituents with intellectual and developmental disabilities. We won’t soon forget those who so willingly ignored the pleas of their constituents who rely on the Affordable Care Act and Medicaid for comprehensive health care coverage and long term services and supports that enable them to live full lives in the community. We must call this what it is – an attack on the rights and lives of people with disabilities.

“The federal government will be walking away from a more than 50 year partnership with states when it comes to Medicaid. Deep cuts and radical restructuring will decimate the Medicaid program. With an over $800 billion cut to Medicaid, states will face difficult choices about what people to cut from the program or what services to roll back. Optional services like home and community based services are likely to be cut. Lives will be lost when people are unable to access the health care and community supports they need.

“The plan that passed the House today is insufficient to keep people with disabilities insured or to support anyone with complex medical needs. If signed into law as currently written, this bill will result in people with disabilities and their family members losing health coverage in the private insurance market and in Medicaid. Coverage also becomes unaffordable as people with pre-existing conditions lose protections against higher premiums.   Those lucky enough to retain their coverage will find that some of the services they need – Essential Health Benefits – are no longer available.  And Medicaid funded long term supports and services, which help people live independently and be included in their communities, will be even scarcer as waiting lists for services will grow all across the country.  Some may end up living in nursing homes and institutions because community services are no longer available.

“The American Health Care Act shows callous and dangerous disregard for the wellbeing of people with disabilities and their families and erases decades of progress.  Now we turn to the Senate, our last line of defense. We intend to work with Senators on both sides of the aisle to oppose this harmful legislation. We continue to encourage disability advocates across the country to reach out to their Senators to voice their concern about this bill,” said Peter Berns, CEO, The Arc.

This week, The Arc released another video illustrating how Congress’ proposed changes to the ACA and Medicaid would negatively impact Americans with disabilities and their families. The video features an interview with Toby, Lindsay, and Calvin from Fairfax, VA. Calvin has Bilateral Fronto-Parietal Polymicrogyria and Cerebral Palsy and relies on multiple insurance plans to cover his medical and therapeutic treatments.

This video is the second in a series of videos The Arc will be releasing in the coming weeks, sharing the personal stories of people with disabilities and their families, and the impact of the ACA and Medicaid on their lives. The first video featured nine people who rely on the ACA and/or Medicaid, and each one has a personal message for Members of Congress and the Trump Administration.

The Arc Video Offers Disability & Family Perspective on Looming Healthcare Reforms

Washington, DC – Today, The Arc is releasing another video illustrating how Congress’ proposed changes to the Affordable Care Act (ACA) and Medicaid would negatively impact Americans with disabilities and their families. The video features an interview with Toby, Lindsay, and Calvin from Fairfax, VA. Calvin has Bilateral Fronto-Parietal Polymicrogyria and Cerebral Palsy and relies on multiple insurance plans to cover his medical and therapeutic treatments.

This family’s story is shared by thousands of families across the country who are imploring Congress to keep the ACA and leave Medicaid untouched to allow their loved ones to continue to receive the supports they need to live full and independent lives. Here are some of the key ways in which the passage of the American Health Care Act (AHCA) will impact Toby, Lindsay and Calvin, and others in the intellectual and developmental disability community:

  • Proposes a more than $800 billion cut to Medicaid over the next decade, the program which provides funding for essential services for people with intellectual and developmental disabilities to live independent and healthy lives;
  • Allows for insurance companies to discriminate against people with disabilities by using pre-existing conditions as a pretext for higher and often unaffordable health care premiums;
  • Places more pressure on states to support an already under-funded program, which will result in smaller budgets, less coverage and fewer services for people with intellectual and developmental disabilities.

“The Arc opposes the AHCA and the proposed changes to the bill, as both will have widespread and terrible consequences for people with intellectual and developmental disabilities and their families. Congress needs to realize that a vote for the proposed health care reform is a vote against the health and wellbeing of their constituents, which include people with disabilities,” said Marty Ford, Senior Executive Officer, The Arc.

This video is the second in a series of videos The Arc will be releasing in the coming weeks, sharing the personal stories of people with disabilities and their families, and the impact of the ACA and Medicaid on their lives. The first video featured nine people who rely on the ACA and/or Medicaid, and each one has a personal message for Members of Congress and the Trump Administration.

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 650 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.

The Arc on House Health Care Bill: “Medicaid Will Be Decimated”

Washington, DC – The Arc released the following statement on the draft legislation that repeals the Affordable Care Act (ACA) and pays for it by decimating Medicaid, a program critical to the lives of people with intellectual and developmental disabilities:

“This legislation ends Medicaid as we know it. If it is enacted, Medicaid will no longer be a state and federal partnership – the federal government will cap what it provides, leaving the states to pick up the pieces. It will have a dire impact on the lives of people with intellectual and developmental disabilities who rely on Medicaid and the Affordable Care Act for their health care, community supports, and as a way to live independently in their communities.

“Thanks to the Medicaid expansion under the Affordable Care Act, millions of people, including people with disabilities, their family members, and their support professionals, have gained access to health coverage. Lives have been saved because people have had access to affordable, comprehensive health coverage. The tax credits and changes to health savings accounts proposed in this bill are not adequate to meet needs of people with intellectual and developmental disabilities or those with chronic health conditions. And we have no idea how much this approach will cost, or how many people will lose coverage as Congress is rushing this bill through before the budget experts can do the math on the price tag in dollars and impact on lives.

“The bottom line is that under this legislation, Medicaid will be decimated. People will lose vital benefits and services that support their basic human right to a life in the community. It will turn back the clock on the progress we have made as a society over the last 65 years. It’s morally reprehensible, and our nation cannot let this happen,” said Peter Berns, CEO of 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 650 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.

Chapters of The Arc are Getting Media Coverage on the ACA and Medicaid

Members of Congress are constantly seeking ways to know what’s going on back home and what their constituents care about. One way their offices do this is by monitoring their local and state newspapers every day. When constituents get published or quoted, members of Congress and their staff pay attention.

Several chapters of The Arc have gotten such well-deserved attention in the last several weeks. They have clearly and persuasively articulated the concerns of thousands of people with intellectual and developmental disabilities (I/DD) in their communities regarding the Affordable Care Act (ACA) and the Medicaid program.

David Thielen, CEO of The Arc of East Central Iowa, had a guest column printed in the Iowa Gazette at the end of December regarding the effects of block granting Medicaid. He made the point that there are only three main levers when costs are shifted to cash-strapped states under a block grant – reducing eligibility, limiting services and supports, and cutting reimbursement to providers. Three weeks later, he followed up with another guest column published in the Cedar Rapids Gazette explaining the tangible benefits of the ACA to individuals with I/DD. These include improvements to long-term supports and services, tax credits to improve affordability of health insurance, banning discrimination based on pre-existing condition, ending annual and lifetime caps, and requiring plans to provide a comprehensive set of benefits including rehabilitative and habilitative services and devices.

Robert Hage, President of The Arc of New Jersey wrote a letter to the editor on January 15 that appeared in five local news outlets. He discussed the increased access to private insurance and Medicaid expansion provided by the ACA, and noted that “repeal may make a good soundbite – but what Americans with I/DD need now is more than talk – they need action that keeps the promise of the ACA.”

Three other chapters were interviewed in news stories in January, including a television interview. Nancy Murray of The Arc of Greater Pittsburg at ACHIEVA was quoted in the Pittsburgh Post-Gazette regarding Medicaid block grants, “Right now, [this] is the No. 1 concern among disability advocates. We are scared to death.” In an article in the Wisconsin State Journal, Lisa Pugh of The Arc Wisconsin reinforced the few, stark options that states would face under a block grant, “Any form of a reduced funding structure from the federal government means likely one of three things: cuts to programs, cuts to benefits, or elimination of certain populations of people in Medicaid.”

Heather Denman, Executive Director of The Arc of Harrison and Rockingham, appeared in a segment on Virginia’s WHSV 3 to highlighted the ACA’s provisions on ending annual and lifetime caps on health insurance coverage, eliminating pre-existing condition discrimination, and providing funding for services outside of institutions. “The biggest piece is just taking something away and not having anything that is there to replace it and worrying about people who have preexisting conditions,” she stated.

The Arc is proud of its network of over 660 chapters across the country who work hard everyday advocating for people with I/DD and their families. We are pleased to see more and more in the press as a result of this as informed and passionate spokespersons.

The Arc on the ACA: “For People with Disabilities This is a Matter of Health, Independence, and So Much More”

Washington, DC –  As the U.S. Senate passed a budget resolution that begins the process of repealing the Affordable Care Act (ACA), The Arc released the following statement and background information on why the law is critical for people with intellectual and developmental disabilities (I/DD):

“Repealing the ACA without a replacement turns back the clock to a time when too many people with disabilities were discriminated against in the health insurance market. For those who were lucky enough to find affordable coverage, many were faced life and death care decisions because of arbitrary financial limits under those plans, or were stuck with service or support options that segregated them from the community.

“All people with disabilities need comprehensive, affordable care – the ACA took our country a giant step forward toward accomplishing this goal. The Arc has long supported expanding Medicaid coverage to adults and raising the income eligibility.  Due to those changes, millions of Americans, including people with disabilities, gained access to affordable, comprehensive health care.

“This is about people’s lives – their health, independence, financial stability, and so much more. The clock is ticking for millions of Americans, including people with disabilities,” said Peter Berns, CEO, The Arc.

The ACA made significant progress in expanding access to health care for individuals with I/DD. The ACA allowed states to extend their Medicaid programs to childless adults earning up to 138% of the federal poverty level. This change has provided coverage to individuals with I/DD and other disabilities and chronic health conditions who were not otherwise eligible for Medicaid, were in the waiting period for Medicare, or did not have access to employer sponsored health insurance because they were not working or working in low wage jobs without benefits.

  • The ACA provided federal money to support Medicaid expansion. The additional federal contribution to expanding Medicaid has helped many people with disabilities access health care.  It has also enabled states to continue and expand programs that provide supports and services to people with I/DD.
  • Several provisions of the ACA were designed to assist states to rebalance their long term supports systems, allowing more people with I/DD to receive the services and supports they need while living in the community instead of costly and outdated institutions. These include the Community First Choice Option (CFC) and the State Plan Home and Community-Based Services Option (also known as 1915(k) and 1915(i).
  • The ACA reversed years of discrimination against people with disabilities and chronic health conditions through its insurance reforms. Prior to the ACA, when people with disabilities or chronic health conditions tried to purchase health insurance in the individual market they often could not obtain coverage at all because of their pre-existing conditions; others faced sky high premiums, or were only granted very limited coverage.  

Learn more from The Arc’s ACA fact sheet, and sign up for our Disability Advocacy Network to know when to take action when it matters the most.

Happy Birthday to Two Essential Lifelines!

Millions of Americans with disabilities appreciate the vital contributions of the Medicaid and Medicare programs. They provide access to health care and vital home and community based supports (HCBS). Needless to say, they are essential lifelines for people with disabilities.

As we mark the 50th Anniversary of these important programs we have much to celebrate. Did you know that today for the first time in its history, home and community-based services (HCBS) accounts for a majority of Medicaid long-term services and supports (LTSS) spending? This anniversary gives us the opportunity to celebrate the fact that millions of Americans with disabilities have access health care thanks to Medicare and Medicaid. That’s right, MILLIONS of people. Approximately 9 million low-income seniors and younger people with disabilities are covered by both Medicare and Medicaid, including. These dually eligible beneficiaries have complex and often costly health care needs and rely heavily on these program. The harsh reality is without these lifeline programs, their medical needs would not be met – that alone is a cause to celebrate these essential programs.

For people with intellectual and/or developmental disabilities (I/DD) Medicaid and Medicare are especially critical. Nationwide, state and federal Medicaid together provides over 77.7% of the funding for supports and services for people with I/DD. This effective and cost efficient program is essential for people with I/DD, enabling them to live and work in the community.

Medicaid has evolved over the years just as the needs of people with I/DD. We urge Congress and the states to ensure that it can meet the future health and LTSS needs of people with I/DD and other disabilities. Please join The Arc in wishing Medicare and Medicaid a Happy Birthday – cheers to another 50 years of essential supports for people with I/DD across the nation!