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.

Building Financial Literacy and Building Acceptance

In April, we mark both Autism Acceptance Month and National Financial Literacy Month. Since we celebrate them together, let’s focus on how increasing financial literacy promotes acceptance and inclusion of people with autism and other intellectual and developmental disabilities (I/DD).

Economic self-sufficiency is one of the goals of the Americans with Disabilities Act (ADA), along with equality of opportunity, full participation, and independent living. As we approach the 25th anniversary of the ADA in July, we still have a long way to go to achieve the goal of economic self-sufficiency. Nearly one in three people with disabilities age 18 to 64 lives in poverty, more than twice the rate of working age people with no disability (DeNavas-Walt & Proctor, 2014). Correcting that financial disparity will require a lot of hard work on many fronts.

One step that we can take in our communities is to make training available to increase financial literacy of people with disabilities and their family members. As a part of its Real Economic Impact Network, the National Disability Institute has created the Financial Education Toolkit that includes an array of tools and resources to promote financial literacy education. These tools teach core concepts in areas such as understanding what money is, budgeting and spending responsibly, and establishing and working towards financial goals.

As we improve financial literacy, we also need to work with people with I/DD and their family members to put those concepts to work in a way that improves their individual financial situations. The Center for Future Planning provides critical information that people with I/DD and their families can use to stabilize their financial situations now and to plan for the future.  The Center provides families with resources on what public benefits are available and how to organize private funds in Special Needs Trusts and ABLE Accounts without putting public benefits at risk. ABLE accounts are not yet available, but we expect they will be soon in many states.

To participate in all aspects of community life, people with I/DD need financial resources. Even as April comes to an end, it’s important to continue developing ways to help people with I/DD and their families develop financial skills and build financial resources. Moving towards economic self-sufficiency is moving towards acceptance.

Building Vocational Success at The Arc of Carroll County

April is Autism Acceptance Month, and in honor of the launch of The Arc’s new initiative TalentScout, we at The Arc of Carroll County wanted to highlight some of the programs we are implementing to improve the lives of people with intellectual and developmental disabilities (I/DD) in the workforce.

 

Preparing for Success

The Arc of Carroll CountyFor the past 16 years, The Arc of Carroll County has had several educational partnerships to provide support to high school students and students in the Post-Secondary Program. One of these is VOICE, which teaches how to work with others, understanding the role of a job coach, and employer expectations. Another, TCP, focuses on the school-to-work transition and consists of locating job leads, filling out applications, interviewing, and being independent on the job.

Over the summer, we offer the Summer Youth Employment program for eligible high school and post-secondary participants. Through the program, participants have the opportunity to work in community businesses over the summer with the support of a job coach. This is paid employment, and plans are person-centered to identify unique supports for each person served.

A service we offer specifically for adults on the spectrum is Job Hunters. Coursework covers developing job skills, cover letter and resume writing, dressing for success, and other abilities. While the class itself is 10 weeks, it doesn’t end there! After the course is done, we continue to work with you until you become successfully employed. Last year, we successfully helped a student named Conner develop his skills and secure a job at the Westminster Home Goods for the holiday season. Now, Conner has made huge strides (all the way across the world!) and is residing in Japan looking for work teaching English to Japanese students.

 

Continued Support

The services don’t stop once someone has found employment. If specialized skills are required, we provide customized training to meet individualized employer needs. Program Coordinators and Employment specialists continue to work with individuals to liaise between the employee and employer to optimize vocational success.

Our Vocational Program, which follows a Place-Train-Maintain model, provides support, instruction, training, and supervision if necessary to maximize independence in the workplace. Some of the ways we do this are through job sampling, shadowing, and enclaves. One of the most unique parts of this program is Supported Enterprise, which assists individuals who are interested in starting their own small business through developing business plans and identifying funding sources. Our hope is that these participants may one day end up at Entrepreneur Alley during The Arc’s National Convention.

We believe that everyone has a right to meaningful and gainful employment, and that community services through The Arc’s chapters are a paramount tool in achieving this.

Learn How HealthMeet® is Promoting Healthy Lives!

In 2012, The Arc launched the HealthMeet® project because we believe people with intellectual disabilities (ID) should have access to high quality, comprehensive, and affordable health care. HealthMeet® offers free community-based health assessments to people with ID at selected chapters in California, Massachusetts, New Jersey, North Carolina, and Pennsylvania. Over 1,500 people have been assessed through the HealthMeet initiative and 9 percent of those participants reported to have an autism spectrum disorder. At The Arc, we believe that Autism Acceptance is promoting healthy lifestyles.

Overall, HealthMeet® has been a positive experience for participants and chapters of The Arc involved in the project. The health assessments provide an opportunity for participants to be assessed in the areas of vital signs and body composition, respiratory health, vision, hearing, oral health, and foot and mobility issues. Participants also feel empowered to take charge of their health by engaging in dialogue with health assessors about the status of their health and recommendations for follow-up care. As Erika Hagensen of The Arc of North Carolina has noted “health is not a taboo topic, it’s an empowering topic.”

The chapters of The Arc involved in HealthMeet® have leveraged community resources and developed partnerships with local entities such as public health departments, nursing schools, and medical schools. HealthMeet® has also been a learning experience for many of the healthcare professionals that conduct the health assessments because they now feel more equipped to serve people with ID. Through HealthMeet®, healthcare providers have developed better communication skills that will ultimately help them serve the participant’s healthcare needs.

To learn more about how The Arc is increasing health opportunities for people with ID view this video:

If you are a healthcare provider, national organization of healthcare providers, caregiver, chapter of The Arc, or service provider (not affiliated with The Arc), we ask that you join our effort to increase your knowledge of the I/DD community and serve people with I/DD. Learn more by viewing this video:

HealthMeet aims to reduce health disparities experienced by people with intellectual or developmental disabilities (I/DD) so they can live a longer and healthier life. Through free health assessments and training, HealthMeet helps people with I/DD learn about their health needs. HealthMeet also offers training to improve public, health professional, and caregiver awareness of health issues faced by people with I/DD. HealthMeet is supported through at $1 million cooperative agreement with the Centers for Disease Control and Prevention. For more information on the HealthMeet project, contact Jennifer Sladen at sladen@thearc.org.

Supporting The Age Wave: Baby Boomers and Autism

Since 2010, baby boomers in the United States have been turning 65 at the rate of approximately 10,000 a day. Some of these new baby boomers are people with autism. At the same time, over 3.5 million adults with autism and other developmental disabilities are living with family members. In nearly 25 percent of these households, the family caregivers are over 60 years of age. During Autism Acceptance month, we should address the challenges that the age wave creates for people with autism and their family members.

To start, people with autism over the age of 65 should learn about benefits that may be available to them in the disability and aging service systems. Learn about what public benefits the person with autism may be eligible for and apply for the appropriate benefits. In addition, Area Agencies on Aging (AAA) can help you access services and support available to seniors. AAAs offer a variety of home and community-based services such as respite, meals on wheels, and transportation. Visit www.ncoa.org for more information about additional benefits available to seniors.

Supporting aging parents of people with autism is another critical issue that needs to be addressed. In addition to the health and financial issues that all seniors face, caregivers are often overwhelmed by concern about what the future will look like for their son or daughter once they can no longer provide support. Although planning for the future can be challenging and emotional, it is necessary and possible.

Discussing these major life transitions and putting a plan in place may actually alleviate some of the stress experienced by adults with autism, their caregivers, and other family members. The Arc’s Center for Future Planning offers information and resources to adults with I/DD, aging caregivers, and other family members.

During Autism Acceptance Month, here are some ways you can access more help:

 

The Arc’s Center for Future Planning aims to support and encourage adults with intellectual and developmental disabilities (I/DD) and their families to plan for the future. The Center provides reliable information and practical assistance to individuals with I/DD, their family members and friends, professionals who support them and other members of the community on areas such as person-centered planning, decision-making, housing options, and financial planning. Visit the Center’s website at futureplanning.thearc.org for more information.

Autism Acceptance – Accept Me, Not A Label

Amy Goodman

Amy Goodman

Autism is not something to be feared, nor is it solely defined by medical jargon or categories. It needs to be accepted as the way an individual thinks, feels, and expresses themselves; nothing more, nothing less. An individual who happens to have a diagnosis needs to be accepted as a human being first and foremost. The expression of their autism may come in many forms and whatever that may look like, it needs to be accepted as part of the person and part of what motivates them.

If we start by accepting autism as part of the person and not let their autism be what defines them, then we can be free to be who we want to be. I have taken on the challenge and embraced my autism. I do not let it run my life; therefore, I have broken some barriers and set an example that individuals on the autism spectrum can be accepted for who they are and what they can contribute to society. Let’s celebrate not only acceptance but that autism is not a disability but differently abled. Think positive and find unique solutions to problems, always remember this; there is more than one way to do things and no one correct way to do something. By accepting autism, individuals are embracing and empowering themselves to be who they always knew they would be.

Ever since my diagnosis, in my mid 30’s, I have learned so much about myself and how it is possible to influence others just by being there and listening. Sharing my story has made such a difference in my life and now I have a new found talent that I would like to tell others about. As part of my job as Director of Autism Now, I was a contributor for Talent Scout, our toolkit for employers, that reflects the opinions and voices of people on the spectrum. I will also be available to do consulting services as well. That will include such things as being a public speaker at conferences, giving presentations, being a leader in the autism community, as well as telephone or e-mail consultations. For more information on that I can always be found at agoodman@autismnow.org, info@autismnow.org, or 202-600-3489.

Acceptance is what it’s all about – accepting someone for who they are, for the difference they can make in someone’s life, and accepting them as a human being first. Always a person first and never a label or diagnosis; don’t fix what isn’t broken, let the person with autism tell you what they need and want, and always let them make their own choices for themselves. That’s what it means to accept autism, being free and being me.

 

Amy Goodman, M.A.

Amy Goodman is currently the Director of Autism Now at The Arc of the United States. She has an undergraduate degree in Early Childhood Education and a Master’s degree in Special Education with a minor in autism. She is an individual on the autism spectrum who enjoys helping others to understand what it is like to live with a developmental disability and has a passion for helping others in their journeys with their children with unique abilities to live life to the fullest as independently as possible. She likes to be a self-advocate and fight for the rights of individuals with intellectual and developmental disabilities as time permits. She also has a passion for reading, crossword puzzles, square dancing, and parrots and owls.