President Trump’s 2019 Budget Is Devastating for People With Disabilities

WASHINGTON, DC – Earlier this week, the Trump Administration released a budget proposal entitled “An American Budget”. The Arc released the following statement in response to the proposal:

“Yet again, the administration has laid out a plan that shows a complete disregard for people with intellectual and developmental disabilities and their families. This Budget confirms our worst fears about the Administration’s strategy of using drastic program cuts for people with disabilities to help to pay for the tax cuts for the wealthiest individuals and largest corporations, which were enacted through the Tax Cuts and Jobs Act last year.

“The President’s Budget would have a devastating impact on people with disabilities and their families with unprecedented cuts to Medicaid, Social Security, and many other programs that make community living possible for many people with disabilities.

“We spent the better part of last year fighting proposed cuts that could have dismantled decades of progress for people with disabilities in our nation. We remain vehemently opposed to proposals, like these from President Trump, that attack the systems of support that enable individuals with disabilities to live, work, and thrive in the community. The disability rights community will continue to rally our advocates to put a face on these issues. Last year we showed the force of our network and we will remain unified against future threats,” said Marty Ford, Senior Executive Officer, Public Policy, 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.

#HandsOff: Medicaid Saved Spencer’s Life

### This is a new series at The Arc Blog called #HandsOff. Each month, we will feature a story from individuals and families across The Arc’s network about how some of today’s key policy issues impact their day to day lives. ###

Spencer and Erica

Spencer and Erica

My name is Erica, and my son Spencer and I live in Indianapolis, Indiana.  I am a recruiter and Spencer is in the 5th grade.

Spencer is incredible.  He has accomplished so much in 12 years.  He was named the 2014 first ever Great American Museum Advocate by the American Alliance of Museums.  He’s been a huge blues fan since the age of 3 and is the only kid to ever wish to meet BB King.  He’s been to the White House and met Michelle Obama.  His favorite subject to learn about is the civil rights movement.  He loves magic and musicals, but if he had his choice he would spend all day sewing and making puppets.  Incredible, right?  Here is what makes his story even more incredible.  He has done all of this with ½ of a brain.

Before Spencer was even born, he had a stroke.  The stroke destroyed over 2/3 of the left side of his brain. He was diagnosed with Factor V Leiden blood clotting disorder, cerebral palsy, right side hemiparesis, seizure disorder, impulse control disorder and autism.  Early on in the diagnosis I was told he would not walk or talk, and would undoubtedly have behavioral and impulse control issues.  Not only does he walk but he can argue like a Supreme Court Justice.  He functions with the use of only his left hand which leads to a lot of frustration.  That coupled with the impulse control issues has made “behavior” his most difficult hurdle.

In April of 2016 when he was only 10, my worst nightmare as a mother became real.
Spencer was bruised from head to toe from punching himself.  He was destroying our house daily and worst of all, he was saying he wanted to kill himself.  He punched through two windows.

Spencer with Senator Donnelly (IN)

Spencer with Senator Donnelly (IN)

I was faced with the horrific decision of placing him in a 24-hour behavioral psychiatric unit.  He had two five day stays within a month.  It was the hardest time of our lives.

Once he got out of the psychiatric unit, Medicaid covered an additional 25 hours per week of  intensive behavioral therapy. He was already getting a few hours a day covered at school, but getting the right amount of intensive therapy has made all the difference.

The additional Medicaid hours saved his life and at the very least kept him out of a long term facility and allowed him to work on learning coping skills in his natural environment.

Here we are not even two years later and because of that therapy through Medicaid, he is happy, healthy and controlling his anger and impulses.  Medicaid has been a life saver for us.

Spencer is a different kid now.  A much healthier and happier kid.  Most importantly, he’s alive!  We just came back from out 3rd trip to New York in a year.  Two years ago, I couldn’t take him out of the house for fear he would hurt himself or someone else and now he navigates the bustling streets of New York like a native.

I asked Spencer what he would say to the Congress or the President about the importance of Medicaid in his life.  Much more eloquent than I could ever hope to be, here is his response in his own words:

“No problem mom, they can just come to my house.  Yeah.  I’ll show them holes in the wall where I used to punch it.  I’ll show them what used to be my quiet room and how you had to fill it with mats and glass I couldn’t break so I wouldn’t hurt you or myself.  I’ll show them how now that room has no more of those things but now has my sewing machine because I’m a big boy and can control my anger.  I’ll even tell them how I used to punch you because I was so mad all the time.  I’ll tell them I broke your nose.  I’ll show them that now I just have to work on my verbal junk but I don’t hit you anymore.  I’ll show him everything mom and then they will understand.  Just invite them over and I’ll show them. Tell them to bring all their friends.  I’ll show them too.”

Mr. President, Members of Congress:  you are cordially invited to my house at any date and time that works for you.  Bring your friends.  My 12 year old has some things he wants to show you.

Work Requirements for Medicaid Don’t Work for People with Disabilities

Washington, DC – The Arc released the following statement in response to the Trump Administration’s issuance of guidance about how states can include in their Section 1115 waiver proposals requirements some recipients of Medicaid work to receive coverage.

“The Arc opposes this reversal of long standing CMS policy.  The Arc is also deeply concerned that critical policies we have long supported, such as Medicaid buy in programs, habilitative services, and supported employment services, are now being used to justify policies that would allow states to create barriers to Medicaid eligibility.

“Cutting off Medicaid won’t help anyone to work. Medicaid provides vital health care access that is a key ingredient for potential to be a part of the workforce.  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 work to qualify for these programs would create a situation in which people cannot access the services they need to work without working – setting up an impossible standard.

“The notion that this guidance excludes all people with disabilities is misleading. The protections the guidance claims to provide to people with disabilities are inadequate and will likely not protect the rights of people with disabilities.

“This is a bad policy, and we encourage the Administration to rescind it,” 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.

#HandsOff: Jake’s Story

###This is the first installment of a new series at The Arc Blog called #HandsOff. Each month, we will feature a story from individuals and families across The Arc’s network about their experiences with some of today’s key policy issues impacting people with disabilities. ###

Jake and Melinda

The author, Melinda, and her brother-in-law, Jake

My name is Melinda and I live in Monroe, North Carolina. I am terrified that the tax plan that Congress is pushing through will lead to cuts for critical programs that people with disabilities rely on. My brother-in-law, Jake, is 36-years-old and my reason for speaking out.

In 2005, my husband and I invited his 24-year-old brother, Jake, from Alabama to live with us in North Carolina in our home. Jake has an intellectual disability as well as some additional mental health issues. While he has significant challenges in daily living as well as academic skills, Jake has incredible working memory, is completely mobile, and articulates every want and need he has; he strives for full independence in the world.

Though we had just had our second child that year, my husband and I made a conscious decision to take on the role as the support system for Jake rather than continue to expand our family. We wanted to do whatever we could to help him lead an independent, meaningful life, something that did not always happen when he was living in his mother’s basement in Alabama. To accomplish this goal, which is ongoing and cyclical, we have spent the last twelve years learning the process of getting supports and services.

I knew nothing about Medicaid or how it could change the life of someone like Jake until we got him a coveted waiver spot for short-term support. Because of these supports, Jake is able to live by himself in a small apartment directly across the street from our house. He has full access to the community and the supports that he needs. My husband and I help to manage the people that work with Jake, but he is the one that drives his own services. He works every day on the goals he decided would help him towards independence: preparing his own meals, advocating his needs to his landlord and others, spending money within a budget, and maintaining his own living-space. Jake has also made meaningful connections with people in our broader community- people other than his family and support staff who look out for him and value his friendship and contributions.

My family structure is in balance because of Medicaid; without it, Jake’s world looks very different, and frankly, so does mine. My husband can continue working as a high school principal. I can continue working at my job as a clinical social worker and full-time advocate for people with intellectual and developmental disabilities. Our two teenaged daughters have the space they need to grow without always having to share time and attention with their uncle. Most importantly, Jake has the life he never thought was possible.

Clearly, our entire family would be greatly impacted if Jake lost his Medicaid services. The tax plans moving through Congress dramatically reduce the revenue that the federal government uses to pay for critical programs such as Medicaid. Act now by calling your Members of Congress to ask them to oppose this dangerous bill.

Jake and his family

Kevin, Melinda, Jake, Georgia, and Juliet Plue

The Arc Responds to Senate Passage of the Tax Cuts and Jobs Act – Services and Supports for People with Disabilities at Risk

Washington, DC – The Arc released the following statement in response to Senate passage of the Tax Cuts and Jobs Act:

“Today the Senate took a big and dangerous step closer to cutting the services and supports that people with disabilities rely on to be a part of their community.

“The Arc’s longstanding position on tax policy is that it should raise sufficient revenues to finance essential programs that help people with disabilities to live and work in the community. The Arc also supports tax policy that is fair and reduces income inequality; people with disabilities are twice as likely to experience poverty.

“Both the House and Senate versions of the Tax Cuts and Jobs Act fail to meet either standard. By reducing federal revenue by at least $1.5 trillion, the Senate bill turns up the pressure on Congress to cut Medicaid and other programs that are critical to people with intellectual and developmental disabilities.

“Additionally, the repeal of the Affordable Care Act’s individual mandate will have a dire impact on nearly 13 million Americans, including those with disabilities, and will increase premiums for people buying insurance on the health insurance exchange.

“The disability community has fought against threats to vital programs and won several times this year, and we are prepared to do it again. As the House and Senate finalize the bill, we encourage our advocates across the country to act now. We’ve shown again and again this year our strength, and now we have to do it again, or we will be right back where we started in the coming new year,” said Peter Berns, CEO, The Arc.

 

About 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 more than 665 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.

MediSked Applauds Strong Disability Rights Advocacy at The Arc of North Carolina

By Linda Nakagawa, Market Policy Analyst, MediSked

Advocacy is the foundation upon which the disability community has grown into a powerhouse. The future of the movement depends on the many advocates across the country who are engaging on the local, state, and national levels to protect the rights of people with disabilities and support their inclusion in the community.

The Arc of North Carolina uses MediSked products for data tracking in their service delivery. The chapter is also an advocacy leader in the state, and we have long admired their strong commitment to their advocacy work. So we reached out to Melinda Plue, Director of Advocacy and Chapter Development at The Arc of North Carolina, to share some of the advocacy efforts the state chapter and its 23 member chapters have made this year.

The Arc of North Carolina has made use of the comprehensive advocacy toolkit provided by The Arc of the U.S. to play an active role in the fight to save Medicaid this year. Self-advocates and family members wrote powerful letters that were sent to The Arc to hand-deliver for state delegations. At the state level, The Arc of North Carolina has done media campaigns, lobbying, and rallies. The success of advocacy depends on real life stories, heartfelt letters as well as real data to back up the facts on which these issues are based.

Another area where The Arc of North Carolina has been especially active is in grassroots local advocacy and community engagement, in partnership with their member chapters. Some actions include:

  • Barrier Awareness Day: The Arc of Davidson County is hosting Barrier Awareness Day, to give individuals without disabilities the chance to navigate through life as someone who does experience a disability. Participants engage in simulations that mimic mobile, visual, and hearing impairments and are taken out into the community. The event leads residents to really think about the accessibility of their community.
  • Wings for Autism/Wings for All: Many chapters of The Arc in North Carolina participate in Wings for Autism®, a grant-funded program from The Arc’s national office that simulates an airport experience for individuals with autism spectrum disorder and individuals with I/DD. The program gives families the opportunity to experience, at no cost, all the processes involved with air travel.
  • Self-Advocates’ Conference: The Arc of Greensboro, The Arc of High Point, The Arc of Davidson County, and The Enrichment Center in Winston-Salem host a conference for self-advocates around the state. The conference, which is entering its sixth year, is planned by self-advocates and staff from the four chapters and focuses on vital information that self-advocates have identified wanting to learn more about. Beginning in March of 2018, this conference will be a part of the state’s annual Rooted in Advocacy conference, hosted by The Arc of North Carolina, as it has become so well-attended.
  • Self-Advocacy Movement: Self-advocates must be decision-makers during conversations that involve the disability community and for causes they are passionate about: “Decisions ABOUT me should INCLUDE me.” The current board president of the state chapter is a self-advocate, and self-advocates are on just about every board of local chapters of The Arc. The chapters of The Arc are proud of supporting self-advocates to teach them how to get involved on boards, not only at The Arc but for other organizations in their community.
  • Advocacy in Public Schools: Staff resources are dedicated to support families as they move through the special education process. Many local chapters and the state work together to empower families and teach them how to advocate for their children.

To know where advocacy can be most effective, you need to know who you serve and communities in which people with intellectual and developmental disabilities live alongside people without disabilities. MediSked partners with The Arc and supports chapters of The Arc across the country with MediSked Connect – Agency Management Platform. MediSked Connect is a platform that streamlines procedures and centralizes data with tailored workflows, detailed service documentation, holistic health data, outcome tracking and reporting, and integrated billing management that is implemented in a collaborative process with each agency.

This year, more than ever, we have been proud to partner with so many strong organizations as they deliver services in their community and fight for the future of services and supports for people with disabilities.

 

Disability Rights Protected Again: The Arc on Senate Not Voting on Graham-Cassidy This Week

Washington, DC – The Arc released the following statement following news that the United States Senate would not hold a vote this week on the Graham-Cassidy-Heller-Johnson proposal. This was the sixth attempt this year by Congress to repeal the Affordable Care Act and cut Medicaid.

“The Graham-Cassidy-Heller-Johnson proposal recycled the same threats to Medicaid we fought back on time and time again this year. It was an unacceptable approach for those who rely on Medicaid for a life in the community. While there won’t be a vote this week, it doesn’t change the fact that the architects of this bill showed a disturbing disregard for the important role Medicaid plays in meeting the needs of their constituents with intellectual and developmental disabilities.

“The victors in this battle are the advocates across the country who made clear that the disability community staunchly opposes legislation that includes per capita caps or block granting of Medicaid. We thank all the advocates who rallied together and would not be ignored when the civil rights of people with disabilities were at stake. We also thank the Members of Congress who joined us in opposing this bill.

“This year, we’ve fought multiple health care proposals that threatened the health and well-being of people with disabilities. While we celebrate this victory, we remain vigilant and ready to oppose future threats to Medicaid put forward by Congress,” 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.

URGENT- 3 Day Medicaid STILL Matters Campaign-Get Your Story on the Record

The Senate is set to vote next week on the Graham-Cassidy bill, this is the most dangerous of the health care proposals that have been before Congress and it is on the fast track. Like previous proposals, this bill includes the per capita caps on the Medicaid program that would end Medicaid as we know it with a trillion dollar cut over two decades, and allows states to weaken consumer insurance protections such as the ban on pre-existing condition exclusion and the essential health benefit requirement.

The latest revisions to the bill INCLUDES the devastating cuts to the Medicaid programs that over 10 million people with disabilities rely on to live and work in their communities. The process that the Senate has been using since January to repeal and replace the Affordable Care Act has been out of regular order, with no committee meetings, public input or hearings. In a pathetic attempt to make an effort, the Senate Finance Committee has scheduled ONE hearing on Monday, September 25, 2017, details are here.

HERE IS WHAT YOU CAN DO:

Because not everyone will be able to attend the hearing to make their voices heard, The Arc of the United States will be collecting your stories to submit on Monday. The time is now to take action and tell your Senators what these devastating cuts will mean to you and your family and why MEDICAID MATTERS. Take a few moments before 9 AM SUNDAY EST to tell your Medicaid story HERE. We will hand deliver all the printed messages to the Senate Finance Committee on Monday, and send them directly to your Senators. So please act NOW, e-mails must be received by 9 AM EST on Sunday to be printed.

We want to show strong support for Medicaid from all over the nation, and get your story on the record. After you submit your story be sure to take action and contact your Senators to tell them to vote no on the Graham-Cassidy bill. If you have any questions please contact Nicole Jorwic at The Arc of United States: jorwic@thearc.org

The Arc Responds to Graham-Cassidy-Heller-Johnson Health Care Proposal

Architects of this bill are still ignoring the pleas of their constituents with disabilities

Today, U.S. Senators Lindsey Graham (R-SC), Bill Cassidy (R-LA), Dean Heller (R-NV), Ron Johnson (R-WI) and former US Senator Rick Santorum (R-PA) unveiled the latest attempt to repeal the Affordable Care Act. The Arc released the following statement in response:

“While this piece of legislation has a new title and makes new promises, it is more of the same threats to Medicaid and those who rely on it for a life in the community. The Graham-Cassidy-Heller-Johnson proposal cuts and caps the Medicaid program. The loss of federal funding is a serious threat to people with disabilities and their families who rely on Medicaid for community based supports.

“Many of the provisions in this legislation are the same or worse than what we encountered earlier this year, which shows that the architects of this bill are still ignoring the pleas of their constituents with disabilities. The talking points sugar coat it, but the reality is simple – under this proposal less money would be available despite the fact the needs of people who rely on Medicaid have not decreased.  The Arc remains staunchly opposed to legislation that includes per capita caps or block granting of Medicaid. We need Members of Congress to find a solution that actually takes into consideration the needs of people with intellectual and developmental disabilities,” said Peter Berns, CEO of the The Arc.

The Arc on Motion to Proceed in Senate: “All roads from this vote are bad for people with intellectual and developmental disabilities”

Washington, DC – The Arc released the following statement on Senate passage of a motion to proceed that starts debate on health care legislation that will impact Medicaid:

“Today, a majority of Senators ignored the pleas of their constituents and moved ahead with debating disastrous health care proposals that will result in people losing health care coverage and threaten the Medicaid home and community based service system.

“All roads from this vote are bad for people with intellectual and developmental disabilities. One path repeals without replacing the Affordable Care Act. The Congressional Budget Office analysis showed that under that proposal, by 2026, 32 million people would lose health insurance and premiums would double.

“Another option decimates the Medicaid program, and the home and community based supports and services that people with disabilities rely on to do what many people take for granted, including getting out of bed in the morning, eating, toileting, and simply getting out into the community.

“Now is the time for action – it doesn’t matter if this is the first time someone is calling their Senators, or they’ve called them every day in this fight. This is the civil rights fight of our time, and we will remain vigilant to protect all that has been built to ensure the inclusion and equality of people with intellectual and developmental disabilities in our society,” said Peter Berns, CEO, The Arc.