The Arc Responds to Bipartisan Health Care Legislation

Washington, DC – The Arc released the following statement in response to Senator Lamar Alexander (R-TN) and Senator Patty Murray (D-WA) releasing bipartisan health care legislation:

“The Arc commends Senators Lamar Alexander and Patty Murray for their bipartisan work on health care. Together they have developed legislation that continues the cost-sharing reduction payments that help low income people access affordable health insurance for two years. Stopping these payments raises concerns about insurers significantly raising premiums or dropping out of the market place. A short-term extension will help stabilize the market place.

“The Arc encourages Congress to continue to work in a bipartisan manner on health care issues. People’s lives are at stake and we need a solution that supports all citizens including people with intellectual and developmental disabilities and those with significant medical needs. We appreciate the leadership shown by Chairman Alexander and Ranking Member Murray of the Senate Health, Education, Labor and Pensions Committee,” said Peter V. Berns, CEO of The Arc.

The agreement that Senators Alexander and Murray announced would also partially restore federal funding to the Department of Health and Human Services for consumer outreach and education and enrollment assistance. These services, which were cut earlier this year, help people enroll and understand the different plan options available. Restoring funding for these programs will be critical to ensuring the expansion of health care coverage and to reduce the number of uninsured people.

The bill also makes changes to the Section 1332 state waiver process. Section 1332 was included in the Affordable Care Act (ACA) to give states the option to experiment with other health coverage models as long as they maintain access to high quality, affordable health care, and maintain the consumer protections in the ACA. The proposal would keep the consumer protections in Section 1332 but streamlines the administration of the waiver.

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.

President Trump Moves to Destabilize the Affordable Care Act (ACA)

The Arc is deeply disappointed by two recent initiatives of the Trump Administration regarding the Affordable Care Act (ACA). The first is the Administration’s decision to end cost sharing reduction (CSR) payments, a decision which will be devastating to the health insurance marketplace created by the ACA. CSRs were included in the ACA to help ensure that people earning less than 250% of the federal poverty level ($60,750 for a family of four in 2017) can afford out of pocket expenses such as deductibles and co-pays. The money is provided to the insurance companies to help them offer the required affordable coverage. CSRs are different from the premium tax credits also required by the ACA to help individuals and families afford the premiums. The tax credits are available to people earning up to 400% of the federal poverty level ($97,200 for a family of four in 2017).

Health insurers urged the Trump Administration to continue the payments to help keep premium costs down and to keep health insurers selling in the marketplace. The Congressional Budget Office estimated in August that ending the CSR payments would cost taxpayers $6 billion in 2018 and $21 billion in 2020. This is because the premium tax credits would go up when premiums are raised by insurers to offset the loss of the CSR. This move is consistent with the Trump Administration’s desire to undermine the ACA by driving more insurers out of the marketplace and discouraging people from signing up for coverage.

Last week the President also signed an executive order directing federal agencies to find ways to offer health insurance products that do not comply with the consumer protections in the ACA. These protections include ending pre-existing condition exclusions, ensuring that people with health conditions do not pay more, ensuring health plans cover adequate health care services, and other protections. These changes are particularly critical to people with chronic illness and disabilities who needs these protections to have access to affordable care that meets their needs. Promoting cheap and skimpy plans will hurt people who have more health care needs. It can also draw healthier people to the inadequate plans outside of the marketplace. These changes could make health insurance more expensive in the marketplace.

The executive order also directs agencies to figure out how to allow insurance plans to be sold across state lines. Currently health insurance plans are regulated on the state level. State insurance commissions are responsible for ensuring that the insurance sold in the state is sold by reputable and financially secure companies and meet the insurance requirements in the state. This type of change would bypass the state insurance commissions in addition to allowing plans that do not include the ACA protections.

The executive order does not immediately make these policy changes but directs the agencies to find ways to do so. These policy changes are in addition to the Trump Administration’s decisions to shorten open enrollment, slash advertising about open enrollment, shut down the healthcare.gov website for periods of time during open enrollment, and slash funding for health care navigators who help people with questions. Together these actions create additional barriers to enrollment.

The newest changes in the executive order and relating to the CSRs will depress enrollment, increase costs, and be particularly harmful to people with chronic illness and disabilities. The changes do nothing to improve access to affordable health care. Instead, it is expected that people with pre-existing conditions will be paying more for less in a destabilized health insurance marketplace.

The Arc Responds to President Trump’s Health Care Executive Order “Extremely dangerous for people with disabilities”

Washington, DC – The Arc released the following statement in response to President Trump’s Executive Order Promoting Healthcare Choice and Competition Across the United States

“President Trump, through the new Executive Order “Promoting Healthcare Choice and Competition Across the United States”, is urging his Administration to find ways to circumvent critical protections of the Affordable Care Act including pre-existing condition protections and requirements for adequate health benefits. If the agencies implement this order, it would undermine the health insurance marketplace and drive up the costs of premiums for people with chronic illnesses and disabilities. This is extremely dangerous for people with disabilities who have relied on the Affordable Care Act to receive quality and affordable health care. The Arc vehemently opposes health care policies, like this, that are detrimental to people with intellectual and developmental disabilities.”  said Peter Berns, CEO of The Arc.

“Don’t Take Away Javi’s Chance at a Future”: Watch a Parent’s Plea to Eliminate Proposed Medicaid Cuts

WASHINGTON, DC – Today, The Arc released a video which highlights how the House-passed cut to Medicaid funding negatively impact people with disabilities’ ability to live independently. The video features a conversation with Linda and her son, Javi, from Chapel Hill, North Carolina. Javi has autism and Ehlers-Danlos syndrome, a condition that affects connective tissues in the body and causes joint dislocations, bleeding, pain and fatigue. He has had multiple painful surgeries over the past decade and requires medication and other therapies to live independently. Due to his Medicaid-funded medical treatment and supports, Javi was able to attend college and graduate with skills that he can take into the workforce. If federal Medicaid funding is cut, Javi risks losing the supports he needs to be able to work in the community and live at home.

Recently, the House of Representatives passed the American Health Care Act (AHCA), which included over $800 billion in cuts over 10 years to federal funding for Medicaid programs. The Arc is launching this video amidst negotiations in the Senate on this bill, and on the heels of the Trump Administration releasing its first budget proposal with includes an additional $610 billion in cuts to Medicaid.

The AHCA 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.

“I lay awake at night worrying. Without Medicaid, I don’t even see a future (for Javi),” says Linda in the video. “If I were to say one thing to the President and Congress I would say: Don’t take away Javi’s chance at a future.”

“Javi is living a life of his choosing, contributing to his community and thriving. These drastic cuts to Medicaid could take it all away from Javi and the millions of other people with disabilities who rely on daily supports and services to be in the community. The AHCA takes away independence, dignity, and decades of progress. We must now rely on the Senate stop this catastrophe,” said Marty Ford, Senior Executive Officer, The Arc.

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.

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 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.