50th Anniversary of the Fair Housing Act

by T.J. Sutcliffe, Senior Director, Income & Housing Policy

This April we mark the 50th anniversary of the Fair Housing Act – a powerful law that fights housing discrimination and opens doors for people with disabilities across the U.S.

What is The Fair Housing Act?

The Fair Housing Act prohibits discrimination in the sale, rental, and financing of housing based on race, color, national origin, religion, sex (gender), familial status, and disability. The Fair Housing Act bars discrimination in any aspect of selling or renting housing or to deny a dwelling to a buyer or renter because of the disability of that person, a person associated with the buyer or renter, or a person who plans to live in the residence. For example:

  • The Fair Housing Act requires landlords to allow tenants with disabilities to make reasonable access-related modifications to their private living space and common spaces (landlords are not required to pay for the changes).
  • The Fair Housing Act requires landlords to make reasonable exceptions in their policies and operations to afford people with disabilities the opportunity to use and enjoy their housing. For example, a landlord with a “no pets” policy may be required to grant an exception for a tenant who uses a service animal.
  • The Fair Housing Act prohibits lenders from imposing different application or qualification criteria on people with disabilities, or inquiring about the nature or severity of a disability (except in limited circumstances).
  • The Fair Housing Act requires that new multifamily housing with 4 or more units be designed and built to allow access for people with disabilities.

Our work to advance fair housing goals continues

It’s been five decades since President Lyndon B. Johnson signed the Fair Housing Act into law. There’s much to celebrate, but also much work to do. People with disabilities want to live in the community in a home that they rent or own. However, far too many find that discrimination limits their options: over half of all Fair Housing Act complaints involve discrimination on the basis of a disability.

Unfortunately, in 2018 the Department of Housing and Urban Development (HUD) has delayed implementation of a new rule and tools to help local governments uphold the Fair Housing Act. We’ve also seen proposals in Congress to halt HUD’s implementation of this new Affirmatively Furthering Fair Housing rule. And just last month, news outlets reported that HUD was considering eliminating references to “inclusive and sustainable communities free from discrimination” from its mission statement.

What can you do?

We must remain vigilant and active to ensure that the Fair Housing Act’s promise continues to advance for the next 50 years, and to fight against rollbacks of this vital law.

Sign up for alerts from The Arc to take action to protect fair housing and more.

If you suspect discrimination, you can file a complaint with HUD online or by calling 800-669-9777, or TTY 800-927-9275. You may also file a lawsuit in court. Contact your local fair housing agency for guidance and help filing a complaint.

 

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 I Support The Arc of the United States: Autism Acceptance and Inclusion in Action

By: Nicole Jorwic, Chris’ Sister, Director of Rights Policy, The Arc of the United States

Nicole and Chris JorwicMy home state of Illinois still has seven state-run institutions for people with intellectual and developmental disabilities (I/DD) open. In 2018, 37 states still have institutions where people with I/DD live institutional lives away from their families and communities. Some may recall the horrible investigative reports that showed the terrible conditions in institutions, but fail to realize that they still exist — and that state and federal government dollars are still funding them. The Arc of the United States was founded by families like mine trying to eliminate the need for those institutions, and to get their family members with disabilities back home and included in their communities. While we have come a long way, there is still much to do from state capitals to DC.

The families that started The Arc movement were the examples that my parents emulated when they fought to ensure that my brother Chris, who had been diagnosed with autism, was the first student with the diagnosis included in our school district in the early 90’s. The self-advocates — the beating heart of The Arc — are the ones who my brother is following in the footsteps of when he advocates in our state capital for better wages for Direct Support Professionals, or presents at local school districts about how to better support students with autism. The policy staff of The Arc of the United States, who I am honored to call colleagues, have been fighting this fight for decades — some since before my brother was even born.

The legacy of The Arc of the United States was just one part of the reason I was glad to join the team as Director of Rights Policy almost three years ago. But more than that, it was about being a part of a movement that was bigger than any one person, family, or diagnosis. Since January of 2017, I have truly seen the power of that movement. This past year has been a whirlwind. I stood in awe at every rally, event, presentation, hearing and protest, at those who were willing to put their bodies on the line —  screaming, shouting, and sharing their most personal stories about why Medicaid matters in their lives and the lives of their loved ones. With my brother’s permission to share his story, I was sometimes part of that large chorus that ultimately was able to stave off the attacks last fall and SAVE MEDICAID… for now.

The “for now” part is what keeps me up at night. As a family member and advocate, it is also why it is more important than ever that we grow the movement to ensure that the general public understands why inclusion and acceptance matters, and that they join the fight to ensure the progress that we have made in the disability community is not stalled by conversations of “cost savings” and “reductions.” We have to talk about the fact that institutions remain open, and how those dollars would be better spent in the community. We have to educate the general public about what Medicaid is and does. On the policy level, we have to talk to state and federal legislators about the fact that the Federal Medicaid law which we fought so hard to save needs a face lift. Right now, services in institutions, nursing homes, and other more segregated settings are mandatory — while home and community-based services (HCBS) are optional under the law. So, all those billions of dollars of cuts would have cut those community services — while those seven institutions in my home state of Illinois would have stayed open.

These are complex issues, but the basic fact remains that everybody benefits from people with disabilities being part of the fabric of their communities. That doesn’t come by keeping people locked away in institutions, or segregated into different classrooms. It comes through conversation, inclusion, and acceptance that we are all better together.

Since it is also Autism Acceptance month, I also want to talk about my brother Chris and why inclusion and acceptance matters in our lives. You see, it is my brother’s voice that I hear during every tense Capitol Hill meeting, frustrating debate, and late night in the office. This is a little ironic since my brother doesn’t use his voice to speak. Chris types to communicate, and this really only started when he was 21 years old — almost 20 years after he lost his speaking voice. At the time when he started sharing the “20 years of observations and opinions,” my grandpa asked him how he had learned to read and write. And Chris answered with his signature sarcasm, that he “learned to read in his classroom like everyone else”. That is why inclusion matters, that is why acceptance goes light-years beyond awareness. If my parents — like all the parents who started The Arc — hadn’t insisted that Chris be included with his peers, who knows if he would have ever found his ability to communicate. That would have been a loss to our family, our community, and the world.

Chris always says it better than I can. Here is something he wrote: “Every voice matters and deserves to be heard. I would like to say that autism is not a tragedy or a disaster, it is a challenge and I am lucky to have a family that is up to it. I would be happy to talk to political leaders about how they spend our money and why they should talk to leaders like me, who have the experience and history to understand where the money and resources should go and what awareness and acceptance really looks like. And to my brothers and sisters in autism, who have families who see only your diagnosis, I fight for you.”

Chris and I are fighting, and we hope you join our movement today, so that we can continue the fight that started The Arc of the United States over 65 years ago — the fight for acceptance and inclusion in all areas of life for people with disabilities.

When Will Employment First Be a Reality? This Autism Acceptance Month, It’s NOW in Wisconsin

The Arc Wisconsin celebrates a major victory in Wisconsin, the passage of a ground-breaking Employment First bill that will hold state agencies accountable to update and improve policies, set benchmarks and report on their progress to increase the number of people with disabilities in Wisconsin working in competitive integrated employment. One of The Arc Wisconsin’s leading advocates for this legislation was Ashley Mathy of Rhinelander who has autism. In recognition of Wisconsin’s progress and Autism Acceptance Month, Ashley shares with us in her own words why this new law is so important to her and the thousands of people with disabilities in Wisconsin.

By Ashley Mathy

Ashley Mathy - Employment First

Ashley Mathy from Wisconsin, who has autism, stands with Governor Scott Walker after he signed the state’s Employment First law on March 28.

Hello, I am Ashley Mathy a self-advocate who has PDD, NOS (Autism spectrum). I have a simple answer to a question. The question is “When?”. Before I answer, please consider- as you know, the month of April is Autism Acceptance month. Education and awareness of Autism are so important to me personally because of my daily struggles with anxiety, social challenges and much more. So many people look at autism behaviors as strange versus accepting the person and all the wonderful gifts and abilities we can offer this world. On the positive side my challenges with Autism have given me the personal experience needed to share my stories, challenges and successes with so many people. Throughout this journey, it has made me realize that Autism doesn’t define me…it is just a word. The truth is I am a fighter. I am a warrior. I am a leader. I am a friend. I am a daughter. Doctors and teachers believed that I would not be able to work in the community and college would not be a likely option. I have proven doctors and teachers wrong by showing them I can overcome any obstacle that is put in front of me. I believe that you never know how strong you are unless you are put to the test…Autism was my test. Christopher Robin says: “You’re are braver than you believe, stronger than you seem and smarter than you think” and who can argue with a Winnie the Pooh expert!! Today, I assist in the Dean’s office at Nicolet College, speak around the State of Wisconsin for disability advocacy and market Soap Sisters which stands for “Sister of Autism Princess”, (a company that my sister and I started) and take classes at Nicolet College.

Ashley Mathy - Employment First

Ashley shared her employment story with many state legislators, including Representative James Edming pictured in this photo in the Wisconsin Capitol, to help get Wisconsin’s law passed.

I am so proud and excited to be part of promoting the Employment First Law. Integrated employment for people with disabilities is by far my biggest advocacy goal. I personally know so many people with special needs that want to work AND contribute to their community, PLUS they want to make a positive impact in this world. We have so many talents they we can bring to the table such as being a reliable employee, positive can-do attitude and very hard worker. People with disabilities have that “fire” to get the job done to the best of their abilities while making every attempt to overcome any obstacles in a job.

Personally, I struggled with finding the right job for my skills and abilities. I got caught between the priorities of all the agencies helping me find a job. After much determination, I found several jobs that are a perfect fit for me. With the passage of the Employment First bill, the agencies will be required to work together and develop a joint plan with the same goal in mind; securing employment for people with special needs. This teamwork will be a powerful tool for Wisconsin to move forward and for individuals to take their rightful place in the community and workforce.

I believe the key to success in life is everyone working together towards the same common goal. The passage of this Employment First Bill and the determination of people with special needs along with the support of employers and agencies… will make a difference in lives, and ensure a WIN- TOGETHER! The answer to the question of, “When?”. My simple answer is, NOW- RIGHT NOW.

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.

How The Family and Medical Leave Act Saved My Family

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.

By: Debbi Harris

As we celebrate the 25th anniversary of the Family and Medical Leave Act (FMLA), I am compelled to reflect on the early and difficult birth of our son, Joshua, and the challenges that my family and I faced in securing the leave we needed to care for him. The FMLA allows covered employees to take up to 12 weeks of unpaid leave for certain family and medical reasons, generally with a guarantee to keep their job and benefits afterward. This Act has been invaluable for many people with disabilities and their families – and as you’ll learn from my story, its protections can sometimes mean the difference between the life and death of a loved one.

Josh and Debbi

Josh and Debbi
Photo by Jerry Smith

Josh was born in January of 1993, about 8 weeks before he was due. Complications immediately prior to and during labor led to an emergency C-section. With my husband Victor by my side, we learned upon his delivery that Josh had experienced a grade IV brain hemorrhage in utero, and had suffered from anoxia and hydrocephalus at birth as a result. The next few months in the NICU became a rollercoaster of medical ups and downs, as doctors tried to stabilize Joshua’s initial condition, while, at the same time, treat the morbidities that come with prematurity, along with the unanticipated medical effects of what would later emerge as Joshua’s disabilities.

At the time, I was working full-time as a technical writer and Victor was a full-time applications developer, under contract. We didn’t qualify for any financial supports and were unfamiliar with programs like Medicaid – but we were able to rely on the private insurance I received through my employer to provide Josh’s life-sustaining medical care. We also already had two children at home, making it imperative that both of us remain in our jobs to earn enough to support them, as well.

In the first year of his life, Josh had 10 surgeries and as many Pediatric Intensive Care Unit (PICU) hospitalizations for respiratory and shunt infections. Victor and I tried our best to juggle our jobs with daycare, Kindergarten, and Victor’s duties in the U.S. Marine Corps Reserve, all while bearing the anxiety and sadness of watching our youngest son go through this terrible ordeal. We spent countless days and nights at the hospital, often bringing our other boys along and letting them play with their toys underneath the giant metal PICU crib that held their little brother.

Despite the new stresses in our lives, I was determined to make up for any lost time at work and to meet my professional obligations. I never missed a deadline, even if that meant reporting to the office late at night and staying until the early hours of morning. It was exceedingly difficult. Still, my supervisors lacked compassion for our situation, and I feared what the loss of my job would mean for Josh – if we were to lose the health insurance that was, in those very moments, sustaining his life.

Fortunately, about a month after Josh was born – February 5, 1993 – the FMLA had become law. With the pressures at work mounting, and Joshua’s medical outcomes becoming less clear, I knew the FMLA would be my family’s last recourse to getting the time we needed to support our son.

At the time, the FMLA was new and awareness about the law was often low, including at my company. As I began to explore how to request time off through the FMLA, it became apparent very quickly that I would receive little to no support from my corporation in my decision. Even more shocking, my boss and some of my colleagues were openly critical of my need to take that time, implying that my son’s condition would simply create a lasting burden for the organization. Lack of knowledge created unwarranted fears and tension. My hope was only to have the time and resources to keep my son alive, and to give him the opportunity to thrive. Our family’s experience with Josh was a clear example of the need for the law.

Thankfully, I was ultimately able to use FMLA leave – but only after being required by my employer to first use up all of my vacation, sick time, and long- and short-term disability. Afterwards, when Josh was perhaps a year old the FMLA protected me from losing my job and our health insurance, meaning that Josh could continue to receive his vital medical care.

Josh’s needs were still critical when he first came home from the hospital at almost four months old. He was technology-dependent, needed constant skilled nursing assessment, and was discharged on ‘in lieu of hospitalization’ status. While he was prescribed home care nursing, it was difficult to find consistent, trained home care nurses, which forced me to decrease my hours to half-time and, ultimately, to work from home two days a week. After a trying period, my husband secured a job that provided us with benefits and enough income to support our family, which allowed me to resign from my job to care of our children full-time.

Without the protections offered by the FMLA, I cannot say whether Josh would still be with us – which is why I am grateful for the protections it offered us and why I will continue to speak out in support of its policies. As I reflect on our experience in fighting for leave in the months and years after Josh’s birth, I cannot help but think of how different our situation would have been if we were allowed paid family leave. The FMLA gives families like ours a chance to take care of their loved ones without bearing the repercussions of losing out on employment or health insurance. As the FMLA enters its 25th year, I believe that the next step – paid leave – should be a protected right of all working individuals.

#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.

#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

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.

 

Attack on SSI: House Approves Cutting Off Basic Income for Adults with Disabilities and Seniors

Washington, DC – Today, the U.S. House of Representatives voted 244 to 171 to revive a failed former policy that cuts off Supplemental Security Income (SSI) benefits for certain people with disabilities and seniors. The legislation targets SSI recipients with outstanding arrest warrants for alleged felonies or alleged violations of probation or parole. Federal law already prohibits payment of SSI benefits to people fleeing from law enforcement to avoid prosecution or imprisonment, and the Social Security Administration has a process in place to notify law enforcement of the whereabouts of such individuals. The original policy ended due to class action litigation.

“This bill is unjust, cruel, and unnecessary, and shows total disregard for the day to day economic struggles of most SSI beneficiaries. SSI benefits average $18 per day and are the only personal income for nearly three in five beneficiaries. Cutting off these modest SSI benefits will cause significant hardship and will only make it more difficult for people to resolve old, outstanding arrest warrants. The Senate should reject this tried and failed approach,” said T.J. Sutcliffe, Director, Income and Housing Policy.

Based on experience with the former policy, H.R. 2792 would not help law enforcement to secure arrests, but instead would target people whose cases are inactive and whom law enforcement is not pursuing. Most of the warrants in question are decades old and include warrants routinely issued when a person was unable to pay a fine or court fee, or a probation supervision fee. Many people are not even aware that a warrant was issued for them, as warrants are often not served on the individual. Some people will be swept up because of mistaken identity, or paperwork errors, which can take months or even years to resolve. Many people will face barriers to clearing their records based on the nature of their disabilities or their current circumstances, for example, an individual with Alzheimer’s in a nursing home.

Resolving an old arrest warrant can often involve significant time and expense, such as when a person has moved and lives far from the jurisdiction that issued, but never pursued, a decades-old warrant. Anecdotally, a very high percentage of people affected by the former policy were people with mental impairments, including people with intellectual disability.

The proposal uses savings from cuts to SSI under H.R. 2792 to pay for legislation to reauthorize the Maternal, Infant, and Early Childhood Home Visiting (MIECHV) program.

“Home visiting helps to improve maternal and child health and increases access to screening and early intervention for children with disabilities. Reauthorization of this valuable program should not be paid for by cutting off SSI for people with disabilities, seniors, and their families,” said Sutcliffe.

As highlighted in a fact sheet by the Consortium for Citizens with Disabilities, here are two stories of people harmed by Social Security’s former failed policy: Rosa Martinez, the lead plaintiff in one of several class action law suits brought against the policy, and a juvenile survivor of childhood abuse:

  • Mistaken Identity: Rosa Martinez, the lead plaintiff in Martinez v. Astruewas, in 2008, a 52-year old woman who received notice from SSA that she was losing her disability benefits because of a 1980 arrest warrant for a drug offense in Miami, FL. Ms. Martinez had never been to Miami, never been arrested, never used illegal drugs, and is eight inches shorter than the person identified in the warrant. Despite an obvious case of mistaken identity, Ms. Martinez was left without her sole source of income while she cleared up the error on her own, without any help from SSA. It was only after filing a lawsuit that Ms. Martinez was able to receive her benefits.
  • Juvenile Survivor of Childhood Abuse: A young man in California with intellectual disability and other mental impairments had his SSI benefits stopped because of an Ohio warrant issued when he was 12 years old and running away to escape an abusive stepfather. The 4’7” tall, 85-pound boy was charged with assault for kicking a staff member at the detention center where he was being held until his mother could pick him up. Many years later, he had no recollection of the incident.

More stories of people harmed by SSA’s former failed policy are available from Justice in Aging.

 

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.