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.

The Arc Joins Effort Calling on Department of Education to Keep Guidance on Treating All Students Fairly, including Students with Disabilities

The Arc has joined more than 140 national, state, and local organizations, led by The Leadership Conference on Civil and Human Rights, in a letter calling on the U.S. Department of Education (ED) to keep in place school discipline guidance.  This guidance merely clarifies that the ED expects that schools and districts are treating all children fairly and provides practical tools and guidelines for educators to create safe, supportive, and welcoming environments for all students.

In 2014, the federal guidance was issued with documents that provide important information and support for educators who want to create safer and more welcoming schools and important cautions for schools where problems of unequal treatment are not being addressed. The Arc and the organizations signing this letter maintain that rescinding the guidance would send the opposite message: that the ED does not care that schools are discriminating against children of color by disproportionately removing them from school and that ED does not see itself as having a role in helping educators create and maintain safe schools that afford all students equal educational opportunities.

“We know that suspensions and expulsions have been used for far too long and too often in our schools and are used disproportionately against children of color and children with disabilities. This federal guidance helps to stop this trend, and rescinding it would harm the progress we have to make to live up to our commitment to a free and appropriate public education for minority students with disabilities,” said Peter Berns, CEO, The Arc.

My evolving relationship with my sister with Angelman syndrome

By Amberley Romo

It’s now been almost five years since I first wrote about future planning. I was 22, and living in Washington, DC — 1,300 miles away from my family in Dallas.

At the time, my sister Caroline was 18. We were both entering new phases of our lives. I was fresh out of college, and she had just reached legal adulthood. (Her birthday milestones honestly were always more striking to me than my own). Caroline was born with a rare neuro-genetic disorder called Angelman syndrome. The prevalence of AS is estimated to be somewhere between 1/12,000 and 1/24,000.

I was in third grade when we finally discovered my sister’s diagnosis. I know, because my mom tells the story of how I went to school, and told my third grade teacher that I was worried about how I would take care of Caroline when something happened to our parents.

Years later, when my parents took our family out to dinner to celebrate my high school graduation, I have a perfect memory of sitting at the table feeling deeply guilty, and near tears. I was soon to move to DC for college. At the table, my parents expressed how important they thought it was that I go. When I later moved away to college, it was deeply unsettling for about a semester. Everything I had to do every day suddenly only revolved around, well, me.

The years passed, and I thrived in DC. I love that city. It’s my home away from home. But I felt those tugs. Sometimes the feeling was quiet, sometimes it was loud; but it was there. Feeling too far away, feeling too selfish. Feeling the desire to be a present fixture in the lives of my family members — to be a more active part of Caroline’s care network.

I’m now almost 28; she is almost 24. I lived in DC for eight years. Two years ago, I moved back to Texas. For one of those years, I lived in Dallas. It’s hard to explain the internal battle between feelings of obligation and not knowing with any certainty what you really want, personally. But you know what I’m talking about. It’s part of the human experience. It has nothing specifically to do with having a sibling with disabilities. It’s a universal experience. This is just a particularly salient part of how I experience this struggle. None of us can know if we’re making the right choices; We just do what we can, and keep moving forward.

What I can say with certainty is that living in closer proximity to my sister deepened our connection considerably. When living further away, I could still say hi to her on the phone. (Or like when she somehow figured out how to FaceTime with me while I was at work and she was in class).

Amberley and Caroline

But living back home, she would spend the night over at my apartment. We’d make dinner, and watch The Great British Baking Show. She loves to watch my pet rabbits run around. I got back in sync with her nonverbal cues, and she got back in sync with my micro-movements. (I swear to you she can tell when you’ve had a thought, and haven’t even said anything yet — her emotional intelligence is through the roof). It’s these subtleties that were difficult — near impossible, even — to maintain, in a long-distance relationship with her.

Amberley and Caroline

There’s no right decision for me, or for other siblings. But I can say for certain that I don’t regret moving back to be closer.

I was reflecting on these past ten years just recently; I was doing some work in a coffee shop, and a family came in. A mom, dad, older sister and younger brother. The younger brother had Down syndrome. They were all hanging his art on the coffee shop wall. As I understand it, the sister had independently reached out to the coffee shop about featuring her brother’s work, and the other artist currently featured on the wall had volunteered to share space. As I chatted with them, and watched as they arranged his art, I had an odd sense of deja vu. Reflecting on being the sister’s age, and pondering college. (She appeared to perhaps be in high school). These thoughts can feel so isolating, but they are such a deeply shared experience. Meeting them by happenstance reminded me of that.

Growing up feels like continuously uncovering that behind the tapestry is a mess of loose ends. From chaos, comes order (or at least hindsight). When I was younger, I worried about Caroline’s future with a general sense of anxiety. Now that I’m older, I worry about increasingly complicated specifics. We have been having active planning conversations for years, and on some level, it grinds away in the back of my brain nonstop. Despite working so proactively, we still don’t feel close to having an answer, or feeling prepared.

I hope that for anyone reading this, these thoughts inspire thoughtfulness, not paralysis. I accept that we can’t ever know anything for certain. It can be overwhelming, but I fervently hope that other siblings and families don’t shy away from these conversations.

Amberley Romo is a software developer in Austin, Texas. She is part of a project to build a free, open-source, web-based communication app.

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.

Mission Matters: Inclusion and Anti-Discrimination Should Remain in HUD’s Mission Statement

The Arc has joined over 570 organizations, led by the National Fair Housing Alliance, calling on U.S. Department of Housing and Urban Development (HUD) Secretary Dr. Ben Carson to retain references to creating “inclusive and sustainable communities free from discrimination” in the agency’s mission statement. Last week, 164 national organizations – including The Arc – and 409 state and local groups sent a letter to Secretary Carson following news accounts alleging that HUD is contemplating amending its mission statement to remove this language.

“Across the United States, people with disabilities face a crisis when it comes to inclusive, affordable, and accessible housing in the community. Discrimination continues to be a major barrier: over half of fair housing claims filed in 2017 involved discrimination on the basis of disability. Many people with disabilities also face multiple barriers to housing based on their race, gender, sexual orientation, national origin, and religion, or familial status.

“The Arc has been alarmed by recent news reports that HUD may be considering removing anti-discrimination language from its mission statement. We hope this is not the case. Removing this language would send the wrong message. We call on Secretary Carson to keep inclusion and freedom from discrimination front and center in all of HUD’s work, and to retain this important anti-discrimination language in HUD’s mission statement,” said Marty Ford, Senior Executive Officer, Public Policy, The Arc.

The Arc Receives Support from Mitsubishi Electric America Foundation for National Disability Employment Program

Washington, DC – The Arc is pleased to announce that its national employment program, The Arc@Work, has received an additional $122,000 over the next two years from the Mitsubishi Electric America Foundation to support its ongoing efforts to expand its partner program with Specialisterne®. The Arc@Work and Specialisterne®’s program consists of a four-week intensive training curriculum and on-the-job training designed to equip people with autism with the skills and knowledge they need to succeed in entry-level IT jobs. Mitsubishi Electric America Foundation previously supported this project of The Arc with $105,000 in funding from 2015-2017.

The Arc has a partnership with Specialisterne USA®, a 501(c)(3) charitable organization established by a Danish nonprofit organization, The Specialist People Foundation, that works to create meaningful employment for people with autism and similar challenges in the technology sector. The program engages top companies with IT needs interested in hiring young adults with ASD and pairs them with chapters of The Arc that provide the four-week training course, during which participants learn the basics about programming and data management while also improving soft skills. At the end of training, participants are hired into partner organizations as developers, programmers, analysts, and administrators. Employers also receive training on supporting employees with ASD and The Arc@Work and Specialisterne® work together to provide follow-up support for program participants.

Chapters of The Arc in Philadelphia and New York were among the first to adopt the Specialisterne program in 2014, but the program has since been adopted by chapters in Tampa Bay and Washington, DC as well. The 2018-2019 grant from Mitsubishi Electric America Foundation will allow The Arc to expand this crucial program to new regions throughout the country.

“Mitsubishi Electric America Foundation is committed to empowering young people with disabilities,” said Keijiro Hora, President of the Mitsubishi Electric America Foundation and CEO and President, Mitsubishi Electric US, Inc. “By continuing to support The Arc’s expansion of the

Specialisterne employment model, we hope to see increased numbers of young people with autism empowered to enter the competitive workforce and live productive lives,” continued Hora.

The program emphasizes that many young adults with ASD are qualified to work in highly skilled positions and, with employer commitment and support, they can thrive in community-based jobs of their choosing.

“There are many young people with ASD that possess the skills that are in high demand in the tech industry. This program plays matchmaker, and through our chapter network, we can not only connect a population we serve with employment in the community but also raise awareness in a major industry about what people with disabilities can do. It’s an exciting initiative and we are thrilled to have the Mitsubishi Electric America Foundation’s ongoing support,” 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.

The Mitsubishi Electric America Foundation, based in the Washington, DC area, was established in 1991 by Mitsubishi Electric Corporation and the Mitsubishi Electric U.S. companies, which produce, sell and distribute a wide range of consumer, industrial, commercial and professional electronics products. The foundation has contributed more than $15 million to organizations that are empowering young people with disabilities to lead more inclusive and productive lives.

Making The Arc a Name in Giving Back!

Scranton, Pennsylvania already has a claim to fame as the setting for the TV show “The Office.” Now, The Arc of Northeastern Pennsylvania in Scranton is getting its own name out to the public by collaborating in community events honoring Dr. Martin Luther King, Jr., and creating public service announcements.

The Arc of Northeastern Pennsylvania (NEPA) was awarded a MLK Day of Service* grant for 2017. The city of Scranton has long recognized Dr. King’s commitment to service through the Greater Scranton MLK Commission, which promotes Dr. King’s principles of non-violence, equity and love through education and service.

Every year, The Greater Scranton MLK Commission plans a full schedule of programs and special events that honor Dr. King’s life and legacy during the MLK Jr. holiday weekend. This year, The Arc of NEPA saw a fantastic opportunity to add to Dr. King’s vision for a more inclusive world and reached out to the commission to plan a food drive for families in need.

On January 16, 2017, The Arc of NEPA and the United Neighborhood Centers of Northeastern Pennsylvania co-led a food drive to benefit Angel’s Attic Food Bank. The food drive brought together participants from the United Neighborhood Centers and University of Scranton, volunteers from the Aktion Club, a community service group of adults with I/DD; and The Arc Responds, a group of employees from The Arc NEPA who raise funds to help people in the community.

After the Martin Luther King, Jr. weekend, Aktion club members became part of the regular volunteer corps at Angel’s Attic Food Bank, sorting and delivering food two to three times each week. Their efforts were much appreciated in a community where hunger is a significant problem— nearly 22.1% of Scranton families live in poverty according to 2016 US Census data.

The Aktion Club is truly helping to make The Arc NEPA a name in giving back. To help spread the name further, the chapter has also created public service announcements for its NEPA Gives Back Campaign to show how people with I/DD and The Arc NEPA contributes to their neighborhood. One PSA features the Angel’s Attic volunteers and the good work they do in their community.

In time, we hope that The Arc of NEPA’s name will become as common in Scranton as “Dunder Mifflin.”

For more on inclusive volunteering and how disability organizations can build partnerships that serve community needs and strengthen The Arc’s presence in the community, visit http://www.thearc.org/inclusive-volunteering.

*In 2015, The Arc was selected by the Corporation for National and Community Service (CNCS), the federal agency that leads the Martin Luther King, Jr. Day of Service, to plan and execute volunteer projects that unite Americans in service for the MLK Day of Service and throughout the year. To date, 16 chapters of The Arc around the country have organized inclusive volunteer service projects where people with intellectual and developmental disabilities (I/DD) volunteer alongside people without disabilities to provide food to people in their communities who are in need. In total, these projects have brought together over 1,000 volunteers to serve more than 14,000 people in need.