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Building Financial Literacy and Building Acceptance

/in /by The Arc

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 (IDD).

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, which 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 IDD 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 IDD 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 IDD need financial resources. Even as April comes to an end, it’s important to continue developing ways to help people with IDD and their families develop financial skills and build financial resources. Moving towards economic self-sufficiency is moving towards acceptance.

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Building Vocational Success at The Arc of Carroll County

/in /by Guest Blogger

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 (IDD) 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.

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Learn How HealthMeet® Is Promoting Healthy Lives!

/in /by The Arc

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 IDD community and serve people with IDD. Learn more by viewing this video:

HealthMeet aims to reduce health disparities experienced by people with intellectual or developmental disabilities (IDD) so they can live a longer and healthier life. Through free health assessments and training, HealthMeet helps people with IDD learn about their health needs. HealthMeet also offers training to improve public, health professional, and caregiver awareness of health issues faced by people with IDD. 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.

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Supporting the Age Wave: Baby Boomers and Autism

/in /by The Arc

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 IDD, 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 (IDD) and their families to plan for the future. The Center provides reliable information and practical assistance to individuals with IDD, 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.

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Autism Acceptance: Accept Me, Not A Label

/in /by Guest Blogger

By Amy Goodman, M.A.

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 30s, 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.

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 is 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.

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April Is Autism Awareness Month

/in /by The Arc

Child holding face signApril is national Autism Awareness Month and The Arc and the Autism NOW National Autism Resource & Information Center are working to empower people with autism spectrum disorders (ASD) with the information and resources they need to live their lives to the fullest potential. We are also working to help others become more accepting of people with ASDs.

With the CDC declaring that 1 in 68 children may be impacted by autism spectrum disorders, it’s a fair bet that each one of us knows someone with autism or someone who has a family member or friend with autism. That’s why it’s important to dispel all of the myths and misinformation to understand and accept what having an ASD really means. And that’s why The Autism NOW Center exists, to weed through the volumes of information out there and provide high-quality, vetted resources and information to people with autism and other developmental disabilities, their family, friends, colleagues, teachers, employers and others.

To promote awareness and acceptance, we invite you to view and share a new video about Autism NOW and learn more. Also, we encourage you to join in the conversation! Throughout April, we will publish the personal stories and perspectives of people with autism on the Autism NOW blog to generate discussion about autism awareness and acceptance. We invite your comments here and on our social media channels using the hashtag #AutismAware.

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Get in the Game: Sports and Autism

/in /by The Arc

Sports are a huge part of many kids’ lives. Not only is it a social gathering for adolescents to meet friends and learn to be part of a team, it also encourages healthy active lifestyles, and as we know exercise is important for everyone – disability or not. Some parents might think that having a child with autism means playing sports may never be a reality for their child. However, sports can be just as beneficial, if not more, for children with autism.

While many team sports such as basketball or soccer may be a little bit more challenging to grasp due to gross motor coordination, sensory problems or communication issues, individual sports may be the perfect fit. Individual sports like swimming, track and field and karate provide structure and team camaraderie while at the same time being very individualized. This perfect mixture could be very beneficial in allowing the child to fully participate in the activity at their own level while not having the social anxiety that can be brought on from other involved team sports. In a basketball game there has to be that thought process of knowing when the ball is going to be passed to you or who to throw to next. A sport like swimming permits the child to focus in on one skill only helping to keep their attention and reducing that social anxiety that can be brought on in other team sports.

This team aspect, while helping them develop their motor skills, will also help them develop their social skills too by providing the feeling of being a valued member of a group and increasing self-confidence. Individualized sports also eliminate the fear that your child will be picked last for the team or “ride the bench” the whole game, creating a sense of failure and rejection in their heads and turning them away from the sport completely. While a child may come in last in a track race, putting the focus on just finishing the race and having their teammates cheer them on to the finish line can be a great self-esteem booster.

Another great aspect of individual sports is the ability to continue participating throughout one’s lifespan. Individuals with disabilities have a higher prevalence for obesity and one large contributor to that can be a sedentary lifestyle (although other factors are also influential). Encouraging fitness at a younger age will help to find fun inclusive ways to exercise that can be carried on into their adult years too.

The Arc’s programs such as HealthMeet and the Autism NOW Center are great places to turn to for valuable information and resources on fitness and healthy living for individuals with autism and other developmental disabilities. Autism NOW’s website contains printable handouts with dietary recommendations and tips that promote healthy eating habits as well as a Health Promotion Guide containing ideas and suggestions for developing and sustaining a healthy, active lifestyle for individuals with autism.

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My Definition of Autism

/in /by The Arc

April is Autism Awareness Month and The Arc and Autism NOW are taking this opportunity to ask individuals who identify as being on the autism spectrum to answer this question: “What is your definition of autism?” Andrew Reinhardt is working on a Master’s degree in physical science and has a diagnosis of Asperger’s syndrome. Below is his personal definition of autism. Follow the conversation this month online using #autismaware.

Being on the autism spectrum to me was at one point in time a defining characteristic of who I am. It is not anymore. I’ve largely grown out of needing to define myself in such terms. I am a very active individual, albeit not as active socially as I would like to be, but in terms of academics, work and family, I am very happy with my life and define who I am based on these parameters, and others. This has some advantages, since I’ve seen time and again that having a disability, any disability, is not typically smiled upon in the hiring process or beyond in this country. I’ve done best and even have tended to be hired more often when I learned to shut up and only open my mouth about having Asperger’s when it’s absolutely necessary. Since I can pass for an individual who is not on the spectrum, at least at this point in my life, I find that it is better to not bring up such issues at all and play the part of so-called normalcy.

But still, Asperger’s still affects me in highly negative ways, though it affected me in worse ways historically. I specifically avoid shopping at malls, or anywhere for that matter unless its grocery shopping. I prefer to avoid eating out to ordering out. These are habits born out of a general social anxiety, as well as several issues such as what to do with eye contact in crowds, the noise levels, the lighting, so on and so forth. As bad as it is now, it was worse to the point of breaking out in hives during a full blown panic attack before.

This is progress, even if it doesn’t seem like it at times. Historically, I’ve faced several problems worse than this, such as a severe fear of, and sensory problems with, insects, that caused me to run away from them to the point of running in front of cars at times. I also was self-injurious at times when I thought I did something particularly bad, though in hindsight I’m not sure I’ve ever done anything particularly bad in my life. All that said, though being on the spectrum has been a great bane to me throughout the years, it also has provided some good things to my life, for instance my mathematical skills, my analytical skills, and the drive to be more than I am today, the last of which is probably the most important because I’ve met individuals who have the skill, but lack the drive to do anything with it. I contend that because of my life on the spectrum, particularly the hardships it’s caused, I’ve done better as an adult than I otherwise would have.

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Running With A Purpose

/in /by The Arc

This is a guest blog post from Verlaine Brunot, whose brother Jonathan will be completing the Boston Marathon this Monday in honor of Autism Awareness Month. It will be his 9th Marathon overall and his 5th time completing the Boston Marathon.

By Verlaine Brunot, Guest Blogger

My name is Verlaine Brunot and I would like to share with you all a story about the power of perseverance, dedication and willpower. This is a story about my youngest brother Jonathan. Jonathan is severely autistic.

Jonathan Brunot was born on March 14, 1989; a healthy child with an expressive personality. He had lots of eye contact, and his vocabulary built steadily as he began to learn to speak. However, when he was about 2 ½ years of age, he began to regress dramatically. His eye contact became non-existent and the few words and even phrases he had mastered in the previous months slipped away into completely non-verbal interaction. Jonathan would later be diagnosed as severely autistic, a prognosis that meant he could never develop “typical” brain function for his age.

Just. Like. That.

Autism is a lifelong, pervasive disorder. However, no matter how difficult the circumstances; an autistic person is only limited by the limits we put upon them.

Case in point, our amazing mother. She always taught us that Jonathan wasn’t merely an “autistic” individual, but rather we were an “autistic” family. It was incumbent upon us as a family to do whatever we could to help Jonathan navigate through this difficult world.

That is why throughout Jonathan’s adolescence; my mother contacted many different special needs programs to enroll Jonathan in as many extracurricular activities as possible. Since Jonathan wasn’t capable of telling us what new things he wanted to try, we effectively had to “throw him in the deep end” so to speak and immerse him in EVERYTHING.

We signed him up for a bowling league, took him to horseback riding, as well as registered him for a special needs basketball league. These activities gave Jonathan an outlet in order to expend all his energy as well as to help him assimilate “normal” activities like his older siblings. Jonathan was not always enthusiastic or attentive during some of these activities; however our mother was still determined to at least give him as much exposure as possible to these different environments. It was precisely this determination and persistence that prompted my mother to have Jonathan join a special needs running club called ROLLING THUNDER. The selfless volunteer coaches at Rolling Thunder specialized in assisted running with the mentally disabled and they welcomed Jonathan with open arms.

When Jonathan first joined the running club, he struggled tremendously. For the first couple of weeks, Jon could not run more then 10-15 yard without stopping, or getting distracted or wanting to lie down. In fact, Olga began running side by side with Jonathan, at times gripping his belt and effectively pulling him along the trails. Even after 2 months of practices, Jonathan was still not really grasping the concept of running. Olga was nearly ready to have him quit, both as a result of her fatigue from constantly pulling him and Jonathan’s inability to connect with the sport. The leader of Rolling Thunder, Steve Cuomo, encouraged Olga to not give up on Jonathan and worked with her to help Jonathan continue running. That led to the fateful day when Mr. Cuomo introduced Olga to a running coach named Vincent Delcid.

Over the upcoming months, Vincent was able to teach Jonathan to pace himself, and stretch, as well as how to approach hills and to sprint at the finish line. Over time, Jonathan developed a great “coach – athlete” relationship with Vincent during their runs and really began to embrace the sport.

After several months of running, coach Vincent REALLY upped the ante. He could see that Jonathan was really enjoying their runs and was getting faster and faster by the day. Coach Vincent told us that he wanted Jonathan to run the NYC Marathon. Yes, THE NYC MARATHON. 26.2 long, difficult miles across all the boroughs of Manhattan!

To me, this seemed initially like an OUTRAGEOUS, INSANE, EXTRAORDINARY goal to set for Jonathan; but at the very same time there was no way we could doubt the determination of coach Vincent. Between Coach Vincent and Olga, Jonathan had a support system that could NEVER fail.

On November 2, 2008 Jonathan completed his first marathon in 4 hours and 48 grueling minutes (ING NYC Marathon 2008) and he has hit the ground running ever since!

My youngest brother Jonathan has evolved into a gifted runner and a tremendous athlete. He’s an amazingly inspiring marathon runner who shows me strength and courage everyday… and oh yea, he happens to be autistic.

The proudest older brother in the whole world,

Verlaine Brunot

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Autism Is “The Matrix”

/in /by The Arc

April is Autism Awareness Month and The Arc and Autism NOW are taking this opportunity to ask individuals who identify as being on the autism spectrum to answer this question: “What is your definition of autism.” Wendy Katz identifies as being on the autism spectrum. She is living in Louisville, Kentucky and pursuing a career in the human services field. Below is her personal definition of autism. Follow the conversation this month online using #autismaware.

How do I define autism? It is simple but the total truth: Autism is “The Matrix.” Seriously, it sounds cheesy, but I feel that one reason that I truly related to this classic film is for this reason. What is “The Matrix?” It is everywhere and colors everything, it is the world pulled over people’s eyes to blind them from the truth.

Granted in the case of autism, “The Matrix” is a metaphor: my autism is not a veil blinding me from the truth, but it is a tangible reality, which is everywhere in my world, ever so subtly coloring and altering the contours of my reality and woven into my very fabric in such a way that I am not aware of it and cannot see it. And though I am not blinded from the truth, sometimes my altered awareness does blind me to certain realities tangible to others, whose sight is clear.

Sometimes I am not aware, for example, of subtle politics and actions, which might limit my professional advancement. Other times I might miss the flirtations of a “friend” or the tension in some of my relationships. Some other times I simply cannot see the forest for the trees: I may be so blinded or distracted by a truly “loud” sound or smell that I cannot focus on the true interpersonal undercurrents of a situation. To stretch this metaphor, I may not be “blinded” to the truth, but at times I am “visually impaired”.

When people ask me about the differences between say a psychological issue such as depression or OCD and my developmental disability, the answer comes quickly and easily. There is no slightly off neurotransmitter in my brain that can be slightly tweaked to change my experiences. My very BRAIN is a different shape, and as Morpheus says in “The Matrix”, “The body cannot exist without the mind.” Autism isn’t a social impairment or a need for behavior modification: it is an entire reality, which for better or for worse I inhabit.

One way in which my reality departs from “The Matrix” metaphor, is that on rare occasions, it seems to truly be “for the better”. Sometimes I have a way of looking at the world or solving a problem that is so far outside of the box that it is a true gift. Other times, I find myself seeing straight through a truly smooth manipulator because I am immune to his or her charms. Autism isn’t always a curse but isn’t necessarily a blessing either; it is simply the world in which I live.

So which character would I be in the movie, extending the metaphor for “The Matrix”? I tend to pass well enough in everyday life that some think I was misdiagnosed or “beat” my autism or have such a mild case it “doesn’t count”. But the world I live in, the things I see, hear, feel, smell, touch, taste, and EXPERIENCE are still colored by autism. I have one foot in the “real world”, but I am no Neo; I am still bound by the rules of “The Matrix.”

I tended to identify with Trinity: a ballsy girl with a foot in both worlds, unable to shake “The Matrix,” yet at times able to see through it. I find that when I truly focus, though I still see the world through my own eyes, I can almost extrapolate to figure out the world as a neurotypical person sees it. At times, I feel like a lingual translator of sorts, and I find myself able to translate and explain things to people on both sides of “The Matrix.” I consider this both my “savant skill” when people ask and an invaluable gift.

I remember when the movie first came out, people asked me if I would have taken the red pill out of “The Matrix,” rather than the blue one which ended the “trip down the rabbit hole”. I told them that I would not only grab and dry swallow the red pill, but I wouldn’t bat an eye to see Morpheus and would have cried out in relief, “Oh that explains EVERYTHING!”

All joking aside, autism colors everything I do and all of my many accomplishments, failures, worries, hopes, and dreams. When people ask me who I would be if I wasn’t on the spectrum, I find myself unable to even answer the question. I have accepted that I will never know.