Amended Budget Proposal Saves Special Olympics – But Not All the Other Disability Program Cuts

Washington, DC – This week, President Trump sent to Congress an amended budget proposal which included money for Special Olympics, reversing an attempt to cut the funding. However, many other cuts that could impact the lives of people with intellectual and developmental disabilities (I/DD) are still in the President’s budget request.

“Funding for the important work of Special Olympics has broad support in Congress and amongst the public. But so does funding for a host of other programs that support people with intellectual and developmental disabilities to thrive in the community.

“It’s not too late for the President to go further and reverse course on his proposal to cut Medicaid, the core program providing access to health care and home and community-based services for people with disabilities. Or his plan to impose work requirements to be eligible for the program. Or any of the other cuts proposed that could impact access to job training, maternal and child health, or caregiver support, to name a few.

“What we invest in reflects our values as a society. There’s a lot at stake for people with disabilities in the budget process in Washington, and there’s still time to make the right investments that keep up the progress we’ve made in access to services and supports across the lifespan, “said Peter Berns, CEO, The Arc.

The Arc is particularly concerned about the proposed cuts to Medicaid, which come in the same form as those included in the 2017 proposals to repeal the Affordable Care Act (ACA) and cut and cap the Medicaid program. Congress rejected this in 2017, but the Administration proposed budget includes replacing both the Medicaid expansion and ACA subsidies with a block grant, and converting the rest of Medicaid into a per capita cap which would deeply cut the program and cap the amount of funding available. The end result of these proposals being put in place would be less money for states, restrictions on eligibility, cuts to services, and growing waiting lists.

The Arc has compiled information about the Administration’s budget request as it pertains to programs that provide services and supports for people with I/DD and their families.

The Arc advocates for and serves people wit­­h intellectual and developmental disabilities (I/DD), including Down syndrome, autism, Fetal Alcohol Spectrum Disorders, cerebral palsy and other diagnoses. The Arc has a network of over 600 chapters across the country promoting and protecting the human rights of people with I/DD and actively supporting their full inclusion and participation in the community throughout their lifetimes and without regard to diagnosis.

Editor’s Note: The Arc is not an acronym; always refer to us as The Arc, not The ARC and never ARC. The Arc should be considered as a title or a phrase.

The Arc Joins Appellate Court Amicus Brief Outlining Critical Importance of ACA for People with Disabilities

Washington, DC – The Arc has joined an amicus brief filed in the U.S. Court of Appeals for the Fifth Circuit in the case Texas v. United States.  The brief supports the constitutionality of the Patient Protection and Affordable Care Act (ACA) and asks the Fifth Circuit to reverse a lower court ruling from the U.S. District Court for the Northern District of Texas finding the law unconstitutional.

The brief outlines how the ACA has been essential to overcoming the disproportionate impact that America’s health care crisis has had on people with disabilities, and how it is uniquely difficult for people with disabilities to obtain affordable and adequate health insurance coverage despite depending on health care services more than those without disabilities.

“This phenomenon has resulted in the unjust reality that the individuals who need health care the most have the most challenging time obtaining it. Removing the ACA’s protections would reverse the gains that people with disabilities have realized since the ACA became law and return those with disabilities to a cruel reality in which affordable insurance lacks the breadth and depth of coverage for vital services and is difficult to obtain,” said Peter Berns, CEO, The Arc.

Specifically, the brief explains how the ACA has expanded access to health insurance for people with disabilities by creating state-based marketplaces for private health insurance; expanding the scope and affordability of coverage by requiring health plans to offer certain essential benefits; prohibiting discrimination against individuals based on health status and exclusions on the basis of pre-existing conditions; and expanding eligibility for and the types of services covered by Medicaid. The brief argues that “declaring the ACA unconstitutional in its entirety will uniquely and extensively harm [the disability] community.”

“The ACA, which makes robust, affordable health care coverage possible for people with disabilities, is at risk in this lawsuit. We can’t go back to a time when people with disabilities and their families lived in fear of losing the coverage they had or went without access to the health care services that made life in the community possible. We remain committed to fighting for these rights for people with disabilities,” said Berns.

The Arc advocates for and serves people wit­­h intellectual and developmental disabilities (I/DD), including Down syndrome, autism, Fetal Alcohol Spectrum Disorders, cerebral palsy and other diagnoses. The Arc has a network of over 600 chapters across the country promoting and protecting the human rights of people with I/DD and actively supporting their full inclusion and participation in the community throughout their lifetimes and without regard to diagnosis.

Editor’s Note: The Arc is not an acronym; always refer to us as The Arc, not The ARC and never ARC. The Arc should be considered as a title or a phrase.

Special Olympics Saved – But What About All the Other Disability Program Cuts in President’s Budget?

Washington, DC – It’s budget season in Washington, DC, and there’s a lot at stake in the proposals for people with intellectual and developmental disabilities (I/DD). In the last few years, the Administration has consistently proposed cuts to programs that impact people with I/DD and their families. From home and community-based services in Medicaid, to imposing work requirements, to a planned and then scrapped attempt to slash funding for Special Olympics, this year’s budget request, if Congress were to enact legislation reflecting the President’s priorities, would be harmful to the lives of people with I/DD.

“If the Administration’s original budget request could cut $18 million from Special Olympics, which provides longstanding community benefit for thousands of people with disabilities, their families, and volunteers, then you should be asking yourself: what else is lurking in these proposals?

“Unfortunately, it’s the tip of the iceberg. The President’s budget proposes $2.7 trillion in cuts over 10 years. There are deep cuts to Medicaid on the table — the core program providing access to health care and home and community-based services for people with disabilities. The cuts come in the same form as those included in the 2017 proposals to repeal the Affordable Care Act (ACA) and cut and cap the Medicaid program. Congress rejected this in 2017, but the Administration proposed budget includes replacing both the Medicaid expansion and ACA subsidies with a block grant, and converting the rest of Medicaid into a per capita cap which would deeply cut the program and cap the amount of funding available. The end result of these proposals being put in place would be less money for states, restrictions on eligibility, cuts to services, and growing waiting lists.

“And once again, the budget proposes work requirements for Medicaid. Applying this policy would have devastating effects on health care coverage — particularly for people with complex health care needs, and likely many people with disabilities.

“What we invest in says a lot about our country and our values. We’ve come a long way in expanding disability rights and including people with disabilities in all aspects of the community, across the lifespan. We won’t go backwards and this budget request takes us in the wrong direction,” said Peter Berns, CEO, The Arc.

The Arc has compiled information about the Administration’s budget request as it pertains to programs that provide services and supports for people with I/DD and their families.

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.

Editor’s Note: The Arc is not an acronym; always refer to us as The Arc, not The ARC and never ARC. The Arc should be considered as a title or a phrase.

The Arc Responds on Federal Court Ruling Striking Down Medicaid Work Requirements

Washington, DC – The Arc released the following statement in response to the federal court ruling against the U.S. Department of Health and Human Services’ approval of Medicaid waiver projects in Kentucky and Arkansas that include work requirements.

“We are glad that this ruling reaffirms what Medicaid is all about – health care for those who qualify, and access to services for millions of Americans with disabilities. Cutting off Medicaid won’t help anyone work. It’s a bad policy idea that just keeps coming back, and we encourage the Administration and leaders in the states considering work requirements to abandon it once and for all.

“Imposing work requirements on Medicaid recipients isn’t going to help anyone become more self-sufficient.  If anything, it will do the exact opposite.  Many people with serious health conditions require access to health care services to treat those health conditions and to maintain their health and function.  Furthermore, Medicaid specifically covers services, such as attendant care, that are critical to enable people with significant disabilities to have basic needs met, to get to and from work, and to do their jobs. Requiring individuals to prove each month that they meet complicated work rules, or are exempt, just makes it harder for people to qualify for these programs and access the services they need to be employed.  The policy serves no purpose other than to remove people from the Medicaid roles,” said Peter Berns, CEO, 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.

Editor’s Note: The Arc is not an acronym; always refer to us as The Arc, not The ARC and never ARC. The Arc should be considered as a title or a phrase.

Trump Administration 2020 Budget Request: Old Ideas and Big Cuts

Today, the Trump Administration released a budget request that if passed by Congress, would put the lives of people with disabilities at risk. The proposal includes deep cuts to Medicaid, the core program providing access to health care and home and community-based services for people with disabilities. The cuts come in the same form as those included in the 2017 proposals to repeal the Affordable Care Act (ACA) and cut and cap the Medicaid program. Congress rejected this in 2017, but the Administration proposed budget includes replacing both the Medicaid expansion and ACA subsidies with a block grant, and converting the rest of Medicaid into a per capita cap which would deeply cut the program and cap the amount of funding available. If enacted, states would receive less federal support to administer Medicaid, resulting in restricting eligibility, cuts to services, and growing waiting lists. Furthermore, it would not adjust to changes in health care, drug costs, aging of the population, or emergencies.

Not only would both a block grant or per capita cap harm people with disabilities, but the proposal also includes applying controversial and harmful work requirements across the country. Arkansas is the first state in the nation to take health care coverage away from people who don’t meet a work requirement. In the first seven months of implementation, more than 1 in 5 people subject to the policy lost their health care coverage. Applying this policy nationally, as the budget proposal would do, would have devastating effects on health care coverage — particularly for people with complex health care needs, and likely many people with disabilities.

Rhode Island Advocate to Testify in Congress on Impact of Restraint and Seclusion on Son with Autism

On Wednesday, February 27, Rhode Island advocate Renee Smith will testify in Congress before the U.S. House Education and Labor’s Subcommittee on Early Childhood, Elementary, and Secondary Education hearing on the use of restraint and seclusion in schools.

The hearing is titled “Classrooms in Crisis: Examining the Inappropriate Use of Seclusion and Restraint Practices”, and Smith was invited to testify because of her now eight-year-old child’s traumatic experiences in school. When Dillon, who has autism spectrum disorder, was in kindergarten and first grade, he and his parents struggled with the school administration for proper, positive supports for him. Restraint and seclusion were repeatedly used to manage Dillon’s behavior, despite the fact that his parents knew other positive methods would lead to a better outcome, and positive reinforcement was a part of the documented individualized education program (IEP) for Dillon with the school.

Far too many times, Dillon was restrained and dragged into the “blue space” – a walled and padded area, with a small opening with a pad cover to keep a child from leaving the space. Again and again, situations escalated to the point where 9-1-1 was called, and if Dillon’s parents didn’t arrive before the ambulance, he would be taken alone to the hospital. The repeated trauma of restraint and seclusion, the threat of going to the hospital, and continued interruptions to his education were having a major impact on Dillon and his family.

“Dillon’s work avoidance, we now know, was in direct reaction to the restraint and seclusion he was experiencing. The more he was restrained and secluded, the less he was interested in school work, which resulted in more restraint and seclusion, a constant downward spiral. It broke my heart when Dillon told us that he no longer trusted any of the adults in that school. Without the school working with us to change this dynamic, we had to do something – we found another public school with a different approach,” said Smith.

Dillon started fresh at a new school, where the behavior program allows children to float between a special education classroom and a regular education classroom for work. There are several cool down spaces and one open space within the office of the school behaviorist. Teachers provide positive reinforcement in their classrooms and one-on-one with their students. Within only two weeks of the new placement, Dillon was in a regular education classroom 100% of the time with supports.

“At his old school, Dillon was trying to communicate that the strategies used were not working for him and not allowing him to develop coping skills for the future. Today, Dillon is doing really well. With the proper supports, he has blossomed as a student and enjoys school,” said Smith.

The Arc Rhode Island (RI) Family Advocacy Network (FAN) recruited Smith to bring this perspective to the halls of Congress. The Arc RI FAN is a newly created office that will lead state-level public policy activities as well as provide training, public awareness and education, and grassroots advocacy building to protect the rights of Rhode Islanders with intellectual and developmental disabilities (I/DD). The Arc has tapped Joanna Scocchi, founder of Rhode Island Advocacy for Children, as the Director. The Arc RI FAN joins a network of more than 620 state and local chapters of The Arc that provide direct support services and advocate for the rights of people with I/DD around the country.

“Dillon’s experience is horrifying, yet it’s happening in schools across Rhode Island and across the country. Nationally, students with disabilities are roughly 20 times more likely than their peers without disabilities to be restrained and secluded. Our kids deserve better – the approach to their education and the environment in which they learn are key ingredients to their success,” said Scocchi.

Supreme Court Reaffirms Commitment to Clinical Standards, Not Stereotypes, In Determining Intellectual Disability in Death Penalty Cases

The U.S. Supreme Court issued a per curiam (published in the name of the Court rather than specific judges) opinion today reversing the Texas Court of Criminal Appeals (TCCA) and finding that Bobby Moore is a person with intellectual disability and his execution is prohibited by the Eighth Amendment to the U.S. Constitution’s ban on cruel and unusual punishment.

“The Arc applauds the Court’s decision today which again embraces the standards-based approach in determining intellectual disability for which The Arc has long advocated. When it comes to matters of life and death, there is simply no room for courts to ground their determinations of intellectual disability in outmoded and baseless stereotypes. The Arc is grateful to the Court for taking a strong stance today to ensure that its precedent on this issue is properly interpreted in jurisdictions around the country,” said Marty Ford, Senior Advisor, The Arc.

This is the second time Mr. Moore has sought relief from the Supreme Court and won. In 2017, in the same case, 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 Court then sent the case back to the TCCA to determine whether Mr. Moore had intellectual disability in light of its opinion. Following the TCCA’s 2018 finding that he did not have intellectual disability, Mr. Moore again petitioned for Supreme Court review. Notably, the prosecutor in Mr. Moore’s case—the district attorney of Harris County—filed a brief in support of Mr. Moore noting that, in light of the Supreme Court’s 2017 opinion, Mr. Moore is an individual with intellectual disability who cannot be executed.

In its opinion today, the Court noted that “Moore has shown he is a person with intellectual disability” and that the most recent TCCA opinion must be reversed because it continued to exhibit “lay stereotypes” of people with intellectual disability despite the Supreme Court’s clear instruction to rely on well-established clinical standards instead. Chief Justice Roberts, in a concurring opinion, noted that while he still believes the original Moore opinion “lacked clarity,” “it is easy to see that the Texas Court of Criminal Appeals misapplied it here…the court repeated the same errors that this Court previously condemned…” Justice Alito, joined by Justices Thomas and Gorsuch, dissented, noting that “The error in this litigation was not the state court’s decision on remand but our own failure to provide a coherent rule of decision in Moore.

The Arc filed amicus briefs on Mr. Moore’s behalf when he first went before the Supreme Court in 2016 and again when his case was remanded to the TCCA in 2017.

In its 2002 decision in Atkins v. Virginia, 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. 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. The Court’s 2017 and 2019 decisions in Moore v. Texas have strengthened this precedent by emphasizing the need to rely on well-established clinical standards—rather than stereotypes—in making intellectual disability determinations in death penalty cases.

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. Moore 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 Responds to Three Month Extension of Money Follows the Person Passing Congress

Last week, the Medicaid Extenders Act of 2019 was signed by President Trump. A three-month funding extension for Money Follows the Person (MFP) was included in this bill. This program moves people with disabilities from institutions into the community by paying for programs not normally covered by Medicaid such as employment and housing services.

“Passage of this bill means individuals with disabilities who have been waiting to transition while funding for the MFP program was in danger, have the opportunity to move out of institutional settings and into the community. If the funding bill did not pass, MFP funds would have run out across the country. This is not only an investment in community-based services, but in the civil rights of people with intellectual and developmental disabilities.

“It is a powerful testament to the value of this program that this legislation was passed so early this Congress, especially after the unsuccessful attempts to cut Medicaid by billions of dollars last Congress. This victory belongs to advocates nationwide who have been actively working to support people with disabilities to live in their communities.  We look forward to working with leaders in Congress who supported this legislation on a strategy for longer or permanent extension of MFP.” said Peter Berns, CEO of The Arc.

The Arc Responds to Department of Education Announcement on Restraint and Seclusion

Today, in response to the U.S. Department of Education’s announcement of an initiative to address the inappropriate use of restraint and seclusion on students with disabilities, Julie Ward, The Arc’s Senior Executive Officer for Public Policy, issued the following statement:

“The Arc appreciates the Department’s new effort to protect students with disabilities from the harmful practices of restraint and seclusion.  We believe this is a step in the right direction to move away from outdated and ineffective practices that are all too frequently used on students with intellectual and developmental disabilities (I/DD). We are hopeful that shining a light on what is happening in our schools, reinforcing the requirements of federal laws, and providing assistance to public schools will benefit all students, including those with I/DD.  However, more needs to be done by Congress to strengthen the federal protections and end these harmful practices. The Arc looks forward to working with the Administration and Congress to move aggressively in that direction.”

Two of The Arc’s Programs to Receive Prestigious Zero Project Awards

The Arc of the United States is pleased to announce two of its programs, Wings for Autism®/Wings for All® and the National Center on Criminal Justice and Disability (NCCJD)’s Pathways to Justice®, have been named 2019 Zero Project Awardees. The Zero Project is an initiative of the Essl Foundation that recognizes and provides a platform for the world’s most innovative and effective solutions to problems faced by people with disabilities around the world. The Arc’s programs are being recognized this year for outstanding contributions towards promoting independent living and political participation, the 2019 Zero Project Awards’ themes.

“The Arc of the United States has long fought to ensure that people with intellectual and developmental disabilities (I/DD) are included in all aspects of society, and that the civil rights of people with I/DD are respected in every context,” said Peter Berns, CEO of The Arc, “We are proud that Wings for Autism/Wings for All and NCCJD’s Pathways to Justice will be recognized as Zero Project awardees this year.”

Pathways to Justice and Wings for Autism are among 76 policies and practices selected by an international group of 3,000 experts who take part in a multi-round voting and selection process. The Arc’s CEO Peter Berns as well as leadership from the two recognized programs will accept the award in Vienna, Austria in February.

Since 2013, NCCJD has endeavored to improve the criminal justice system’s response to victims, witnesses, suspects, defendants, and prisoners with I/DD. The Center’s signature program, Pathways to Justice, offers specialized training and support to develop local, multidisciplinary Disability Response Teams composed of criminal justice and disability leaders, including self-advocates, to improve local justice systems. NCCJD has trained over 5,000 justice professionals in 12 different states since 2015.

“Societies can’t be inclusive without equal access to justice for ALL, including people with disabilities. Pathways to Justice is revolutionizing the way the criminal justice system sees and interacts with people with developmental disabilities, laying the groundwork for inclusive justice to take root and flourish across the country,” said Leigh Ann Davis, Director of NCCJD.

Originated by the Charles River Center, a local chapter of The Arc in Massachusetts, and the Massachusetts Port Authority, Wings for Autism/Wings for All is an airport “rehearsal” program created to alleviate some of the stress that individuals with I/DD and their families experience when traveling by air. The program also provides vital training and educational resources on disability competency to airport, airline, and Transportation Security Administration (TSA) staff and volunteers.

From 2014 to 2018, Wings for Autism has held over 130 trainings in almost 60 airports throughout the United States and has supported more than 18,000 people with autism and other disabilities, as well as their families. Additionally, the program has trained more than 1,800 aviation professionals in disability competency and inclusion.

“The Wings for Autism/Wings for All program has successfully helped thousands of individuals with disabilities and their families enjoy the basic right to travel and live independently. Simultaneously, we’ve supported aviation professionals across the country to create safe and inclusive spaces in airports to better accommodate travelers with disabilities. We are honored to be in the company of so many other great organizations who are also addressing independent living issues on an individual and systemic level as well,” said Kerry Mauger, Program Manager of Wings for Autism.