The Stage is Set for the Next Threats to the Civil Rights of People with Disabilities with President Trump’s Latest Executive Order

Washington, DC – The Arc released the following statement in response to the Trump Administration’s “Executive Order on Economic Mobility”:

“Over the last year, people with disabilities, their families, and other advocates have fought again and again against overt attacks on access to health care and supports and services that make life in the community possible.

“After failing to decimate Medicaid, this Administration announced this week that it intends to open up a new front in this effort – one that aims right at those most in need, the poorest in our country, who have the most to lose.

“If you read between the lines of this executive order, it is a blueprint for sweeping changes that penalize people who are unemployed, across multiple programs. From Medicaid, to housing, to food assistance and other programs – this will result in new barriers to eligibility and denial of critical services. The call for increased economic opportunity is not backed up with provision of tools for individuals to succeed.

“We fundamentally disagree with the notion in here that some eligible people are more ‘deserving’ of benefits than others. This is also part of a pattern. From an Administration budget request that would have been devastating to people with disabilities, to a state by state effort to cut people off Medicaid, to a tax law that jeopardizes critical programs, we are still in the fight of our lives and remain ready to advocate for the civil rights of people with intellectual and developmental disabilities,” 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.

Why a Federal Balanced Budget Amendment is Bad for People with Disabilities

Almost everyone agrees that they should have balanced budgets, that is, that they should not spend more money than they take in. It makes perfect sense for individuals, so why not for our federal government?

Actually, there are several reasons why requiring a balanced budget for the federal government would be a very bad idea. For starters, let’s consider the assumption about individuals having balanced budgets.  If this were really the case, we would not be able to get home mortgages, student loans, or finance the purchase of a car. We would not be able to borrow money for such sound investments in our future.  

Requiring a balanced budget makes no more sense for the federal government than it does for individuals. The federal government needs the flexibility to do things like respond to natural disasters, public health epidemics, military threats, demographic changes, and economic downturns, among other things. What appears to be a commonsense approach is actually very bad public policy.

What is a Balanced Budget Amendment (BBA)?

Balanced Budget ScaleA balanced budget amendment is a proposed federal constitutional rule requiring that the government not spend more than its income in a given year. Most state constitutions have balanced-budget provisions and most of these make an exception for times of war or national emergency, or allow the legislature to suspend the rule by a supermajority vote. The U.S. Constitution does not require a balanced budget. Some members of Congress are looking to change that by passing legislation to add an amendment to the U.S. Constitution.

Why is a BBA Harmful?

It will result in cuts to Medicaid, Medicare, Social Security, and other large programs. Programs like Medicaid, Medicare, Supplemental Security Income (SSI), and Social Security are a large part of the federal budget. They are projected to grow in the next several years primarily due to the aging of the population. Since these are very popular and critical programs, Congress has been unable to make direct cuts to them and some Members are now looking to try less direct methods, including a BBA. 

Social Security and Medicare are particularly vulnerable to cuts because a BBA prohibits spending from exceeding revenues collected in that year. These programs operate with trust funds that collect dedicated payroll taxes designated for specific programs which are partially paid out in future years to meet projected population needs. For example, in years when Social Security collects more than it pays in benefits and other expenses (which it has done every year since 1984), the Treasury invests the surplus in interest-bearing Treasury bonds and other Treasury securities. These bonds can be redeemed whenever needed to pay benefits. The trust fund balances allow benefits to be paid when the Social Security program’s current income is insufficient by itself. Under a BBA, the $2.9 trillion in Treasury securities held in the Social Security Trust Fund would not be available to help pay benefits to the baby boomers for retirement or disability since almost all of it was collected in prior years.  

It would harm the economy.  A BBA would likely cause significant harm to the economy, making recessions both deeper and longer. In an economic slowdown, revenues (mostly taxes) fall while spending for unemployment and other benefits increases. A BBA would force policymakers to cut federal programs, raise taxes, or both when the economy is weak or already in recession, the exact opposite of what good economic policy would advise, according to the Center on Budget and Policy Priorities.

It is extremely hard to change.  An amendment to the Constitution is a dramatic step that takes a lot of time to enact. Unlike typical legislation, once a constitutional amendment has passed, it is extremely difficult to undo. 

What is Happening in Congress?

There are two BBA bills that have been introduced in the House of Representatives by Representative Bob Goodlatte (R-VA) – H.J. Res 1 and H.J. Res 2 – that Congress may vote on. While both versions are very harmful, H. J. Res 1 is the most drastic one since it essentially prohibits tax increases (by requiring a three-fifths vote in the House and the Senate) and limits spending to 20 percent of the economy (gross domestic product(GDP)). The House may vote on one of these bills as soon as next week.

Key Points for Advocates 

People with disabilities, their families, and advocates can:

  • Speak concretely about how their lives will be upended if the dramatic spending cuts forced by a BBA were to happen. What would happen if Medicaid, Social Security, and other programs were severely cut?
  • Call out the contrast – Question how Members of Congress can call for such drastic action to reduce deficits when they recently voted to add over $1 trillion over 10 years to the nation’s deficits in the tax law enacted on December 20, 2017.  See House votes here and Senate votes here.
  • Share what many leading economists believe – a BBA to the U.S. Constitution is very unsound economic policy. 

For more information, see:

Joe Damiano Says #HandsOff – Learn His Tips for Effective Advocacy

This is a new series at The Arc Blog called #HandsOff. Each month, we 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.

Joe DamianoMeet Joe Damiano! Joe is 23 years old and is a very active advocate in his home state of New York. Joe is the outreach director for The Arc’s National Council of Self-Advocates, a board member for a local non-profit, and the former chair of a self-advocacy group called the Collaborative of New York.

For the last several years, Joe has attended the Disability Policy Seminar in Washington, DC and participates in the lobby day to meet with his Members of Congress and talk about issues that are important to people with disabilities.

Here is what Joe had to say about his advocacy and his advice for others who want to get involved to tell Congress #HandsOff important programs:

How did you get involved in advocacy? What is your favorite part of being an advocate?
I’ve been doing advocacy my whole life! Once of my favorite examples of my advocacy work is when I was about 16, my dad took me to Albany, to the state capitol in New York to advocate for a bill to stop using the “r” word. It really resonated with me as a person with a disability. I heard that word in school a lot and I didn’t want people to use it anymore.

My favorite part in general is attending learning sessions like at the Disability Policy Seminar so I can learn about the latest issues. My favorite part about meeting with legislators is getting my point across.

Why do you think it’s important for people with disabilities to be strong advocates for programs like Medicaid and Supplemental Security Income (SSI)?
Programs like Medicaid and SSI help people with disabilities. Sometimes these programs are people’s only lifeline. They pretty much can’t live without it. It helps them to be independent. If Congress takes these programs away, many people will be impacted. If you’re not an advocate, those benefits may get taken away.

What advice do you have for self-advocates who want to get started in advocacy?
The first thing and the biggest thing, I would say, is find your local self-advocacy group. Self-advocacy groups can help you with tips on how to present to your legislators and how to get your message across, give you a chance to go to lobby days, and opportunities to meet with your legislators. They really help.

You can learn about upcoming meetings for The Arc’s National Council of Self Advocates here.

What tips do you have for self-advocates meeting with their legislators for the first time?
I made a presentation with tips for self-advocates meeting with their legislators. You can see it here.

One of the biggest things you have to do is have a group discussion, with whoever you are going with, to identify the issues you want to bring up at the meeting. It’s always good to invite other people to be part of the process, as long as they are people who support you. It’s always good to have other people be involved.

Be clear on what you what you want the legislator to achieve and make sure you have stories on that topic. Sometimes you meet with a legislator or aide that don’t understand the issues or that we have disabilities – you just have to be patient and educate them.

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.