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

/in /by The Arc

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 (IDD), 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 IDD and actively supporting their full inclusion and participation in the community throughout their lifetimes and without regard to diagnosis.

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The Arc Responds to House Passage of American Health Care Act: “Shows Callous and Dangerous Disregard for the Wellbeing of People With Disabilities”

/in , , , , /by The Arc

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 (IDD) 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.

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

/in /by The Arc

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 (IDD), 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 IDD and actively supporting their full inclusion and participation in the community throughout their lifetimes and without regard to diagnosis.

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The Arc Responds to Execution of Ledell Lee in Arkansas: “A Dark Day for Justice”

/in /by The Arc

Washington, DC – On April 20, the state of Arkansas carried out the execution of Ledell Lee, ignoring the pleas of advocates and legal experts across the country. The Arc had urged Arkansas Governor Asa Hutchinson to commute this death sentence pending a full clinical evaluation to determine whether Mr. Lee had intellectual disability (ID). Following his execution, The Arc released the following statement:

“Today is a dark day for justice not just in Arkansas but across the country. The execution of Ledell Lee betrays the values of our legal system. If an evaluation of Mr. Lee had shown that he had intellectual disability, he would have been granted the protections of Atkins v. Virginia and subsequent Supreme Court decisions – protections that prohibited the use of the death penalty. Governor Hutchinson ignored the advice of legal experts across the country and Mr. Lee’s trial lawyers failed to properly investigate whether he had intellectual disability. These actions combined led to a gross miscarriage of justice that we will not soon forget,” said Peter Berns, CEO of The Arc.

In a letter to the Governor, The Arc noted that the evidence presented by the neuropsychological expert in this case supports the conclusion that if Mr. Lee underwent a full evaluation, he would likely have met the three prongs of an ID diagnosis.

This evaluation was vital in this case because in its 2002 decision in Atkins v. Virginia, the U.S. Supreme Court recognized the special risk of wrongful execution faced by persons with ID and banned the execution of persons with ID as cruel and unusual punishment under the Eighth Amendment. Subsequently, in Hall v. Florida (2014), the Court rejected an arbitrary cutoff for IQ scores in making the intellectual disability determination and emphasized the importance of courts consulting clinical standards in their analysis. Most recently, in Moore v. Texas (2017), the Court rejected Texas’ use of stereotypical and outdated factors—rather than well-established clinical standards—to determine intellectual disability in death penalty cases on the grounds that they “create an unacceptable risk that persons with intellectual disability will be executed.”

The Arc has deep sympathy for the family and friends of the victim in this case, and we supported appropriate punishment of all responsible parties. The Arc did not seek to eliminate punishment of Mr. Ledell or others with disabilities, but rather, to ensure that justice is served and the rights of all parties are protected. The Arc is committed to seeking lawful outcomes for people with ID and will continue working to ensure that the U.S. Supreme Court rulings on this issue are abided by in jurisdictions across the country.

The Arc advocates for and serves people with intellectual and developmental disabilities (IDD), including Down syndrome, autism, Fetal Alcohol Spectrum Disorders, cerebral palsy and other diagnoses. The Arc has a network of over 650 chapters across the country promoting and protecting the human rights of people with IDD and actively supporting their full inclusion and participation in the community throughout their lifetimes and without regard to diagnosis.

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The Arc on CBO Score of American Health Care Act

/in /by The Arc

Washington, DC – The Arc released the following statement in response to the Congressional Budget Office’s report on the American Health Care Act, the plan to repeal the Affordable Care Act:

“The numbers are in, and they are devastating for people with intellectual and developmental disabilities. The Congressional Budget Office’s (CBO) score of the American Health Care Act confirms what we already knew – this bill is dangerous and the price we will pay is the health of millions of Americans including those with disabilities. We were promised a replacement for the Affordable Care Act, yet the plan laid out by this bill is insufficient to keep people with disabilities insured or support anyone with complex medical needs. The numbers underscore how dire the situation is, estimating that by next year 14 million more Americans would be uninsured and by 2026, 24 million will be without insurance.

“This bill is paid for by permanently altering the federal/state partnership of Medicaid, the primary health insurance program for people with disabilities. 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. Medicaid also is the single largest source of funding for the long term supports and services people with disabilities depend on to live and work in the community, and to avoid even more costly institutional care.

“The American Health Care Act will undo all of that by cutting $880 billion from Medicaid in the next decade, leading to 14 million fewer individuals being covered by Medicaid by 2026. Lives have been saved because people have had access to affordable, comprehensive health coverage, including long term supports and services. It isn’t hard to imagine what the outcome

will be as this program is cut and restructured. CBO anticipated that, in response to changes made by the bill, states could ‘cut payments to health care providers and health plans, eliminate optional services, restrict eligibility for enrollment, or (to the extent feasible) change the way services are delivered to save costs.’ Supporters of this bill are putting the health, wellbeing, and freedom of their constituents with disabilities at risk.

“This bill shows complete disregard for the health of people with disabilities. Claims that this bill makes health insurance more affordable are simply untrue. Look at the numbers, they show the reality of what this legislation will do,” said Peter Berns, CEO of The Arc.

The Arc advocates for and serves people with intellectual and developmental disabilities (IDD), including Down syndrome, autism, Fetal Alcohol Spectrum Disorders, cerebral palsy and other diagnoses. The Arc has a network of over 650 chapters across the country promoting and protecting the human rights of people with IDD and actively supporting their full inclusion and participation in the community throughout their lifetimes and without regard to diagnosis.

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

/in , , /by The Arc

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 (IDD), 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 IDD and actively supporting their full inclusion and participation in the community throughout their lifetimes and without regard to diagnosis.

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The Arc on Leaked Draft Executive Order That Would Impact People With Disabilities Legally Residing in the US and Seeking to Legally Immigrate

/in /by The Arc

Washington, DC – In light of a recently leaked draft Executive Order that would impact people with intellectual and developmental disabilities (IDD) who are legally residing in the United States as well as people with IDD who are hoping to legally immigrate, The Arc released the following statement:

“We are facing a civil rights crisis in our nation and people with disabilities are in the crosshairs with the latest draft Executive Order being circulated in the White House. The Executive Order, if finalized and signed by the President, would discriminate against immigrants with disabilities, making it harder to legally enter or remain in the country. To deport individuals with intellectual and developmental disabilities who are in our country legally or prevent them from immigrating, goes against the values of our nation.

“At The Arc we believe people should have a fair opportunity to legally enter and reside in the United States and become a citizen, without restrictions based on disability. This includes those needing protection as refugees, asylees, and victims of human trafficking.

“Focusing on an individual’s need for support is a form of discrimination against people with disabilities we have seen before. But Congress, in the past, addressed the problem by ensuring that people with intellectual disability are provided accommodations as they try to enter our country legally, become citizens, and achieve the American dream like their peers without disabilities. Broadening the criteria for excluding or deporting immigrants based on need for support will harm people with disabilities and their families who have much to contribute to our society.

“If a family is otherwise eligible to enter or remain in our country, they shouldn’t be turned away or turned out because their child or another family member has a disability and may need to access government services to live and participate in the community.

“We urge President Trump to reject this Executive Order. We also call on Members of Congress, as they have done in the past, to stand up for people with intellectual and developmental disabilities and their families as they seek inclusion in America,” said Peter Berns, CEO of The Arc.

The Arc advocates for and serves people with intellectual and developmental disabilities (IDD), including Down syndrome, autism, Fetal Alcohol Spectrum Disorders, cerebral palsy and other diagnoses. The Arc has a network of over 650 chapters across the country promoting and protecting the human rights of people with IDD and actively supporting their full inclusion and participation in the community throughout their lifetimes and without regard to diagnosis.

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The Arc on Commutation for Death Row Inmate Abelardo Arboleda Ortiz in Final Days of Obama’s Presidency

/in , /by The Arc

Washington, DC – The Arc commends President Obama for commuting Abelardo Arboleda Ortiz’s sentence from death to life in prison without the possibility of parole. Mr. Ortiz’s diagnosis of intellectual disability should have ruled out the death penalty per a 2002 Supreme Court ruling, Atkins v. Virginia. While the Court’s prohibition of the execution of defendants with intellectual disability could not be clearer, many states continue to define intellectual disability in a manner that significantly deviates from clinical standards, resulting in inconsistent application of Atkins and a miscarriage of justice for many defendants.

“With this decision, President Obama not only ensured justice for an individual with intellectual disability, he also affirmed the Supreme Court’s Atkins v. Virginia and Hall v. Florida rulings. We thank him for ensuring that justice was finally served in this case.

“Sadly, this is one of many cases where an individual with intellectual disability was wrongly being sentenced to death despite the protections promised by the Supreme Court. We have much work to do to ensure access to justice is accessible for all citizens. The Arc remains committed to ensuring the rights of people with intellectual and developmental disabilities, and we will continue our legal advocacy work to make sure that the Supreme Court ruling on this issue is followed in jurisdictions across the country,” said Marty Ford, The Arc’s Senior Executive Officer of Public Policy.

The Arc has been involved in this case for years, having filed two amicus briefs in support of Mr. Ortiz, the first in 2010 in support of his appeal before the Eighth Circuit Court of Appeals and the second in 2015 in support of his petition for writ of certiorari (request for review of the lower court’s decision) before the United States Supreme Court. Most recently, in December 2016, The Arc submitted a clemency letter to President Obama requesting the commutation of Mr. Ortiz’s sentence.

“In this case, the pursuit of justice was a team effort, and The Arc was a leading player. At every step of the way, from the circuit court to the Supreme Court, The Arc had Mr. Ortiz’s back, pitching in to draft a key amicus brief and fighting for his rights in support of our legal team. This is the right decision not only for Mr. Ortiz, but for the future of legal advocacy for people with intellectual and developmental disabilities,” said Amy Gershenfeld Donnella, attorney for Mr. Ortiz.

Read more about this case on The Arc’s blog.

The Arc advocates for and serves people with intellectual and developmental disabilities (IDD), including Down syndrome, autism, Fetal Alcohol Spectrum Disorders, cerebral palsy and other diagnoses. The Arc has a network of over 650 chapters across the country promoting and protecting the human rights of people with IDD and actively supporting their full inclusion and participation in the community throughout their lifetimes and without regard to diagnosis.

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Justice for Abelardo Arboleda Ortiz in Final Days of a Presidency

/in /by The Arc

By Shira Wakschlag | Director, Legal Advocacy & Associate General Counsel for The Arc

“In this case, the pursuit of justice was a team effort, and The Arc was a leading player. At every step of the way, from the circuit court to the Supreme Court, The Arc had Mr. Ortiz’s back, pitching in to draft a key amicus brief and fighting for his rights in support of our legal team. This is a win for not only Mr. Ortiz, but for the future of legal advocacy for people with intellectual and developmental disabilities,” said Amy Gershenfeld Donnella, attorney for Mr. Ortiz.

The Arc is thrilled to announce that President Obama has commuted the sentence of Abelardo Arboleda Ortiz—an individual with intellectual disability—from death to life in prison without the possibility of parole.

The Arc has been involved in this case for years, having filed two amicus briefs in support of Mr. Ortiz, the first in 2010 in support of his appeal before the Eighth Circuit Court of Appeals and the second in 2015 in support of his petition for writ of certiorari (request for review of the lower court’s decision) before the United States Supreme Court. Most recently, in December 2016, The Arc submitted a clemency letter to President Obama requesting the commutation of Mr. Ortiz’s sentence.

In the brief before the U.S. Supreme Court, The Arc argued that:

In implementing this Court’s decisions in Atkins and Hall, both judges and clinicians must carefully evaluate whether a defendant satisfies the clinical definition of intellectual disability according to the consensus of the scientific community…In finding that Mr. Ortiz is not an individual with intellectual disability, the district court mistakenly relied on irrelevant testimony regarding Mr. Ortiz’s adaptive strengths rather than relevant testimony regarding his adaptive deficits, thereby rejecting the scientific community’s well-established guidelines governing intellectual disability. Broad acceptance of the district court’s mistaken reasoning would deprive individuals with intellectual disability of the protections and supports to which they are entitled under state and federal law and the U.S. Constitution.

This is a major victory in protecting the rights of individuals with intellectual disability in the criminal justice system and in fulfilling the promise of Hall v. Florida and Atkins v. Virginia. In Atkins, the U.S. Supreme Court recognized the special risk of wrongful execution faced by persons with intellectual disability and banned their execution as cruel and unusual punishment under the Eighth Amendment. In its more recent 2014 Hall decision, the Court reinforced its earlier decision that people with intellectual disability not be executed, requiring that consideration of evidence beyond IQ tests be taken into account when determining intellectual disability. While the Court’s prohibition of the execution of defendants with intellectual disability could not be clearer, many states continue to define intellectual disability in a manner that significantly deviates from clinical standards, resulting in inconsistent application of Hall and Atkins and a miscarriage of justice for many defendants.

The Arc has deep sympathy for the family and friends of the victim in this case, and we support appropriate punishment of all responsible parties. The Arc does not seek to eliminate punishment of Mr. Ortiz or others with disabilities, but rather, to ensure that justice is served and the rights of all parties are protected. The Arc is committed to seeking lawful outcomes for people with intellectual disability and will continue working to ensure that the U.S. Supreme Court rulings on this issue are abided by in jurisdictions across the country.

Learn more about The Arc’s legal advocacy work on behalf of people with intellectual and developmental disabilities.

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

/in /by The Arc

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 (IDD):

“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 IDD. 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 IDD 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 IDD.
  • Several provisions of the ACA were designed to assist states to rebalance their long term supports systems, allowing more people with IDD 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.