May 2018 #HandsOff Blog – A Policy & Advocacy Internship with The Arc

#HandsOff is a series on The Arc Blog. 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.

By: Peter Contos

Peter ContosAs my Paul Marchand Policy Internship at The Arc’s national office in Washington, DC comes to a close, I want to reflect on the importance of advocacy.

Advocacy has always been an important part of my life. My brother and I were raised to try and understand life from various perspectives, and through this I gained an appreciation for people coming from all walks of life. My mother is a speech language pathologist, and many of her students have disabilities. It was through connecting with her students, along with supporting a family member with autism, where I found my calling in disability advocacy.

I was incredibly lucky to attend public schools that were relatively inclusive. My high school offers a class which pairs students from the general and special education curriculums, in subjects like cooking and art. I was fortunate enough to be in the class my senior year, and the relationships that blossomed throughout were very important to me. That class represents one of the most fulfilling and enjoyable moments of my academic career.

Throughout high school, I was also a part of the Miracle League, a baseball league accessible to kids and young adults with a range of disabilities. The enthusiasm and joy that the game brought to players, volunteers, parents, and fans was undeniable, and it was in those moments where I knew advocacy was the right path for me.

Through volunteering with The Arc of Northwest Wayne County (MI) for the past six years, I have attended the Disability Policy Seminar (DPS). DPS is an incredible opportunity for self-advocates and allies to come together to learn more about important policy issues, and the advocacy we can use to support key programs. This year’s DPS featured a few sessions that really empowered me to continue my advocacy work. In the opening general session, we heard from Rebecca Cokley from the Center for America Progress, and Mike Oxford from ADAPT, both of whom have extensive experience as advocates. The personal stories they told were incredibly powerful, and through them, I learned about the tools they use to communicate their priorities. I also attended the Update on Employment Policy session, where we heard from a representative from the Department of Labor and a key Senate staff member, Michael Gamel-McCormick, about the work they are doing to make sure there are enough incentives and training available for employers to hire people with disabilities.

My favorite part of DPS every year is the Hill visits. This year, I was able to meet with three Congressional offices. Using a combination of statistics and personal stories, the group that I attended with effectively advocated for a variety of programs, including Money Follows the Person, but also to protect vital programs like Medicaid and Social Security, along with continuing to promote equity in educational opportunity.

I’ve continued my advocacy through action post-DPS by attending a rally on Capitol Hill opposing cuts and restructuring of the Supplemental Nutrition Assistance Programs (SNAP, formerly known as food stamps). This rally was well attended by disability advocates and coalition organizations, and it was an opportunity to listen to stories about the importance of SNAP — including several by Members of Congress sharing their personal experiences with the program.

I will be graduating from college in June, and I look forward to continuing my advocacy fight wherever I end up. I plan to use the knowledge and tools that I’ve gained since moving to DC to mobilize the communities I am a part of in my future.

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