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.

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.

When We Move Forward Together, Anything Can Happen

This is a guest blog post by Mardra Sikora.

A few years ago, my son and I sat backstage during the Broadway Across America national tour performance of Mary Poppins. The cast sang, “Anything Can Happen, if You Let it,” and danced across the stage exuberantly pursuing their point. I believed them, because Marcus would soon be on stage singing right alongside them. This was in 2011 and the opportunity came from an auctioned event. Since then, his ambition to write his own musical and perform on stage has continued to grow. In fact after telling one actor at a community theater that he wanted to play the leading role, that actor reminded Marcus of the quote, “The greatest of journeys starts with a single step.”

The Next Step

MarcusMarcus keeps taking steps. His latest endeavors have netted a short play which is being produced this month at a local public high school. The show is called “Cassie Through the Closet Door.” The role of Cassie was inspired by an actress who Marcus worked with while participating in a project called the Art of Imagination. A program developed by our local chapter of The Arc, the Ollie Webb Center. Marcus has taken beginning acting classes through this program and hopes to move on to advance acting and then classes within the community next. These classes teach craft and understanding theater, but his innate talent is as a storyteller. Coming up next is the release of his children’s book entitled Black Day: The monster rock band, with a read along animated short to follow on DVD this fall.

Dreams Take a Village

There are still some who can’t believe what Marcus can achieve, but frankly Marcus doesn’t care what they think. That is perhaps one key to his continued ambition and potential for success. But it’s more than that, it’s also a community, a team effort. Ask any Olympian if they did it alone. There’s a reason award acceptance speeches are so long, the list of “Thank You’s” include many supporters within their community. Many people have to come together to teach, support, encourage, and enable anyone to reach their dreams.

Menschen cardMarcus also has some great role models breaking the social barriers. Connor Long, is one example of a young adult self-advocate who is following his acting aspirations. He’s already received accolades and awards for his role in the live action short Menschen. Which The Arc is sponsoring shows in cities across the country. The most recent list is at the end of this review, check back for updates. (Be sure to talk to your local arc to bring the show to your town.) Connor is busy with local theater at events and is also in production of his next film project, Learning to Drive, another example of a writer-director with a personal story to tell.

These two young men are just the tip of the iceberg, there are so many self-advocates taking steps to achieve their dreams. With their actions they are teaching communities, and because our communities are growing more inclusive, they continue to move forward. Let us all keep moving forward together, sharing, teaching, and learning that together, “Anything Can Happen, if You Let it!”

Bio: Mardra Sikora believes in the power of words and uses both fiction and non-fiction to advocate for and with her adult son Marcus. You can find her and Marcus on the blog Grown Ups and Downs, Facebook and Twitter as well as on various blog networks including The Huffington Post.

How to Make the Most of This Year’s National Convention

2014 Convention ArtworkMy name is Jill Egle, and as a self-advocate ambassador of The Arc, I enjoy welcoming new attendees to the annual convention. This year is extra special because it is being hosted in my very own hometown of New Orleans, Louisiana. The Big Easy, as they like to call it!

As someone who has attended The Arc’s National Convention in the past, I like to offer new attendees some tips on how to make the most of the convention. Some of my favorite things to do at the convention are to check out Entrepreneur Alley and The Arc Store. Entrepreneur Alley is where other self-advocates showcase their businesses and products. And The Arc Store is a great place to pick up new gear and gadgets. I also recommend you come to my session, on September 30th, from 2-3 pm, as well as the Self-Advocate Symposium that’s being held on Wednesday, October 1st, from 9:00 am until 12:00 pm.

There is a lot of information to take in and a lot of events and programs to sign up for. Some general tips for attending the national convention are:

  • Stay safe and be aware of your surroundings
  • Let others know where you are going
  • Keep your cell phone handy at all times
  • Always keep your bag or backpack close and closed. Keep your wallet or purse zipped up

With this year’s convention being held in New Orleans, you’re definitely going to want to go sightseeing, check out cool places to eat, and do some shopping. One of my favorite things to do is just walk around New Orleans. You could view the old mansions on St. Charles Ave or hop on a street car and go to Audubon Park and see the zoo. There are also several tours you can take part in:

And when you’re looking for good food and a fun time, I suggest heading to Mulates! Besides providing tourists (and locals) the best of New Orleans, Mulates also employs members from a local chapter of The Arc! It’s easy to get caught up in the excitement of being in a new city and attending the convention, but it’s better to be smart about where you’re going and what you’re doing. As you’re out, enjoying the nightlife of NOLA, remember to pay attention to where you are and always be alert.

If you follow these few tips, you’ll have a great time in New Orleans and at the convention.

Take care and enjoy NOLA!

Jill Egle

Extraordinary Gifts…Unique Challenges

May is Williams Syndrome Awareness Month. Below is a guest post from Mike McFall of the Williams Syndrome Association with more information on this rare disorder and the association serving them.

Woman playing pianoWilliams syndrome (WS) is a rare genetic disorder caused by the deletion of 28 genes on one copy of an individual’s chromosome #7. Research is ongoing to determine the function of the genes in the deletion, and utilize that knowledge to help in the development of treatments for the various aspects of WS, but progress is slow. Eventually, it is hoped that research on the WS deletion will lead to treatments to help, not only those with WS, but others with Autism, diabetes, high blood pressure and anxiety disorders.

Williams syndrome affects 20,000 to 30,000 people in the United States. Families of affected individuals encounter major struggles. Individuals born with WS, share many common facial features as well as a constellation of medical, neurological and behavioral characteristics. Medical characteristics must be followed closely by physicians to prevent serious problems. Neurological and behavioral characteristics require therapeutic interventions and special educational strategies to provide the individual with the best chance for a happy and productive life. Most individuals with Williams syndrome have mild to severe cardiovascular disorders, often requiring surgery, and many suffer from kidney, bladder and gastrointestinal difficulties as well. Children with Williams syndrome can experience hyper – sensitive hearing, feeding problems as infants, developmental delays, poor motor skills, and mild to severe learning disabilities. As they grow, individuals with WS struggle with things like spatial relations, numbers and abstract reasoning, which can make daily tasks a challenge. The majority of adults with WS need supportive housing to live to their fullest potential, and few are able to earn a large enough salary to be self-sustaining.

Added to the challenges, though, are the extraordinary gifts of Williams syndrome. Unlike many disorders that can make connecting with your child difficult, individuals with WS tend to be social, friendly and endearing. Parents often say that the joy and perspective a child with WS brings into their lives had been unimaginable, and that their special personalities and perseverance help make dreams come true. Individuals with WS often know many more people in their communities than their parents. Adults with WS contribute to their communities as both paid employees and volunteers, working in restaurants, at senior centers and assisted living facilities, in libraries or as store greeters or veterinary aides. No matter what they are doing, individuals with WS make a special impact, and have a unique ability to quite naturally brighten the days of those around them. Individuals with WS also have a very special relationship with music. For most, there is a passion for music that in itself can help enrich their lives. For some, the passion blooms into a musicality and musical skills that far exceed their abilities in other areas.

Man playing guitarThe Williams Syndrome Association (WSA), Inc. was formed in San Diego, CA in 1983 by a handful of families of children with Williams syndrome. The mission of the WSA is “to help all individuals with Williams syndrome and similar characteristics reach their full potential.” The Association accomplishes its mission by providing a wide range of services – from programs and scholarships to resources and research support. The WSA is the most comprehensive resource for families living with Williams syndrome as well as doctors, researchers and educators. Since its inception, the WSA has touched the lives of more than 5000 individuals with Williams syndrome, from all 50 States and around the world, and lists an additional 8000 professionals, relatives and friends in its database. The WSA provides life-changing enrichment opportunities such as camp programs for youth and young adults to ages 6 – 21, and an annual reunion week for “Adventure Seekers”, adults with WS ages 21 through 35. Every two years, the WSA hosts an international research symposium, and a 5 day educational conference for families, and each year more than 150 social, educational and fundraising events provide opportunities for families throughout the U.S. to gather in celebration of their special children with WS. The Association also provides scholarships for all of its own programs (camps, conferences, and conventions) as well as other specialized enrichment and postsecondary/transition programs, and there is funding available for the non-insured expenses associated with the essential medical treatments required by many individuals with Williams syndrome. Special initiatives help to bring new information and valuable resources to families. Current initiatives are helping to bring assistive technology to students with WS, and housing models and program funding options to parents of adults.

The Williams Syndrome Association is volunteer-driven. It relies on the regular assistance of more than 100 volunteers in 18 geographic regions around the country. Above all, the Association is about family – it understands that families comprise the foundation and supports that we all need to navigate the frustrations and hurtles that life puts in our path as well as celebrate the special joys that come our way. The Williams Syndrome Association works hard to create a 2nd, more specialized family for its members to rely on – sharing in the joys that our children with Williams syndrome bring to us and to those in our communities, and offering supports, advice and resources when they are needed to overcome the medical, neurological, developmental and social challenges that come with the diagnosis of Williams syndrome.

What Should Everyone Know About Abuse?

By Nora J. Baladerian, Ph.D.

As I thought about writing this blog, I wondered, “what do I wish that everyone could know about abuse?” My first thought was I would want everyone who is a person with intellectual or developmental disabilities (I/DD) or their loved one, to know that abuse can happen to anyone… everyone. Having a disability is not a protection. Many parents and teachers have told me, “well, no one would abuse my child/the children I teach… because they have disabilities.” Their belief blinds them to the reality that abuse not only does happen to kids and adults with disabilities, but in fact it happens more to people with than without disabilities.

The most recent surveys confirm this. In February 2014, the National Crime Victim Survey noted that among those between ages 12-15, those with disabilities were victimized three times more than their non-disabled peers. The 2012 National Survey on Abuse and Disability (7,289 responses) found that 70% respondents with disabilities reported abuse in their lifetimes. And, of these, 90% said that it happened multiple times, and 46% said it happened too many times to count.

Of course it is important to study the problem of abuse to know the extent of the problem. Then it is time to take the next step:  Help the survivors, and make efforts to reduce the risk of abuse. This means, make plans to reduce the risk that abuse will happen to each child and adult with a disability. It also means to make sure that each crime victim receives the psychological support they will need. Finally, it means that the criminal justice system should be available to individuals with disabilities… which it is not now.

The 2012 National Survey showed that nearly half of crime victims did not report the abuse, and of these most did not report, believing that their report would not result in any legal action against the perpetrator. Those who reported the crimes, 54% found that their reports did not result in any legal action. This shows that the fears of those not reporting were well-founded. And, this points us in a direction for reform. What can be done to ensure equal justice is available for crime victims with disabilities?

I believe these findings give us the information needed to design a plan of action. A written  plan of action has been in place at least since 1997, when the California Think Tank on Abuse and Disability convened in Los Angeles, CA and created a plan for the state. Perhaps now, these ideas can become reality. The most essential pieces of the plan include:

  1. Give every parent/careprovider/conservator a copy of the “Ten Tips on Abuse & Disability” to learn that abuse does happen, and the steps to take if it does. If parents and careproviders do not believe it happens or can happen, they will not protect their children nor be aware of what they should do and say when abuse is revealed to them. Parents are taught many things, but this essential area is ignored. ENOUGH! Every physician, psychologist (or other mental health practitioners), disability services agency, school, etc. should make sure that parents are aware and ready to protect their child. By simply handing them the “Ten Tips,” a one page guide, the parents’ have been given their first step: awareness, information, and resources.
  2. Every agency/organization providing services to crime victims and/or people with disabilities should receive an annual one-day training on abuse issues: incidence and prevalence, perpetrator information, risk-reduction strategies and support for survivors.
  3. Every law enforcement professional (patrol, detective, investigator, captain; prosecutor, judge, etc.) should receive at least one day of training each year on the aspects of interacting with individuals with disabilities, conducting a thorough investigation, knowledge on specialized interviewing skills, and in particular familiarization with the daily life of individuals with disabilities and the programs/ individuals who serve them. Budgets for training have always been identified as a barrier, but another is the interest level and commitment of those in charge of training. We have to continue to knock at the doors of agencies, until such training is a standard part of their training package.
  4. Every medical professional working with people with disabilities (that’s all of them, I think!) and mental health professional should be required to have at least one day training on working effectively with people with disabilities, with a particular awareness of the role abuse plays in their lives. Specialized therapies for crime victims with disabilities should be a part of the training of all trauma specialists and crisis and disaster responders.
  5. Most importantly, all individuals with disabilities should be provided information about abuse, maltreatment and assault. They should be able to understand what it is. They should have a plan designed for them or with them by their parents/carers, so they know what is happening if an assault happens, what to do before, during and after. The parents and carers should also receive education, information and training on what they should do before and after their loved one experiences violence.

I believe that it is my duty, and that of others, to do what we can within our scope of work and life, to ensure the well being of individuals with disabilities. I don’t know why I believe that, exactly, but it has turned out that that is my life’s work. I do not say that should be everyone’s work!!!  But, I think that within each of our job duties, there is something we can do to be a part of the solution.

The Arc of the US, and the Disability and Abuse Project, among others, have committed to develop resources that are easily accessible.  Visiting their sites monthly would be a good idea to stay up to date on availability of resources.

References:

U. S. Department of Justice, Office of Justice Programs, Bureau of Justice Statistics, (2012)  NCJ240299 Crimes Against Persons with Disabilities,2009-2012.  Statistics Tables. Retrieved on 2/26/14 from http://www.bjs.gov/index.cfm?ty=pbdetail&iid=4884

Baladerian, N., Coleman, T., Stream, J., (2013) Abuse of People with Disabilities Victims and Their Families Speak Out:  A Report on the 2012 National Survey on Abuse of People with Disabilities, retrieved on 4/1/14 from http://www.disabilityandabuse.org/survey

Baladerian, N.,  (2014) from A Risk Reduction Workbook for Parents and Service Providers, Spectrum Institute. Retrieved on 4/4/14 from http://www.disabilityandabuse.org/resources/ten-point-guide-to-abuse-response.pdf

 

Dr. Nora Baladerian is the Director of the Disability, Abuse and Personal Rights Project in Los Angeles, CA; she has worked in the area of abuse of people with disabilities since 1972. She is a former Board Member of the National Committee to Prevent Elder Abuse and Advisory Board Member of the American Bar Association’s Council on Victims. Dr. Baladerian is a Licensed Clinical Psychologist, Licensed Marriage and Family Therapist, Certified Sex Therapist and Board Certified Crisis Responder. She is the Project Coordinator for the Disability and Abuse Project of Spectrum Institute, and from 2000-2006 the Director of the CAN Do! Project, Child Abuse & Neglect Disability Outreach at Arc Riverside.

Celebrating World Down Syndrome Day While Seeking Justice for Individuals with Down Syndrome in Today’s Society

On March 21st, 2014, the world will celebrate the ninth annual World Down Syndrome Day. While people with Down syndrome have made significant strides in education, employment, and independence, there is so much more we can do as a society to ensure people with Down syndrome have the opportunity to enhance their quality of life, realize their life aspirations and become valued members of welcoming communities.

Ethan SaylorThe wrongful death of Ethan Saylor is just one example of the work left to do. Ethan, a 26-year old Frederick man who happened to have Down syndrome, died senselessly in the hands of three off-duty Frederick County Sheriff’s deputies in a movie theater in January 2013. Ethan’s death was tragic and avoidable. NDSS has advocated, alongside the Saylor family, for Governor Martin O’Malley of Maryland to ensure that law enforcement, first responders and other public officials all receive the very best training regarding interaction with people with disabilities and for the US Department of Justice (DOJ) to conduct an independent investigation into the death of Ethan Saylor. Emma Saylor started a change.org petition, which has gained over 370,000 signatures, calling for Governor O’Malley to investigate the death of her brother Ethan. In September 2013, Governor O’Malley issued an Executive Order establishing the Maryland Commission for Effective Community Inclusion of Individuals with Intellectual and Developmental Disabilities. This is Maryland’s chance to lead the way for other states on these critical issues, and ensure Ethan’s legacy lives on forever.

Just a few weeks ago in Atlanta, Georgia, Judge Christopher McFadden overturned a jury’s guilty verdicts against William Jeffrey Dumas. Dumas was convicted of repeatedly raping a young woman with Down syndrome in October 2010. According to his ruling, McFadden claims that a new trial is necessary because she did not behave like a rape victim. Even as we celebrate World Down Syndrome Day, these moments of blatant discrimination deserve our attention. NDSS condemned the judge’s actions and through an op-ed response demanded that the state of Georgia Judicial Qualifications Commission begin proceedings to remove him from office. We can all get involved by supporting a change.org petition calling for McFadden’s removal; and that justice is done with the conviction being reinstated.

Last week in Plaquemine Parish, Louisiana, a mother of a baby, Lucas, who happened to have Down syndrome, was charged with his death after poisoning him—an action that deserves condemnation and for which justice must be sought.

While we can take pause today and celebrate the achievements of people with Down syndrome all around the world, we must be reminded that for us to fully achieve our mission of equality and inclusion, we must ensure that all people with Down syndrome and other disabilities are valued, respected members of their communities. The work and partnership of The Arc’s NCCJD and NDSS is vitally important to making sure people with Down syndrome and other disabilities have the right to a meaningful life in their communities, whether it’s through a career of their choosing, a living arrangement of their liking, recreational activities of their selecting, or just friendships of their electing. We, as the national advocate for people with Down syndrome, want to be sure what happen to Ethan Saylor and other tragic, unfortunate cases never happens again.

National Down Syndrome SocietyNDSS is proud to partner with The Arc’s National Center on Criminal Justice and Disability (NCCJD), a national clearinghouse on criminal justice and disability issues funded by Bureau of Justice Assistance, U.S. Department of Justice, that provides resources, information and referral, training, technical assistance and evaluation for criminal justice and disability professionals and programs. To that end, NDSS continues to be dedicated to issues that prevent harm, abuse, and victimization of individuals with Down syndrome. Unfortunately, we learn about these tragic, unfortunate, and senseless cases involving individuals with Down syndrome every day; and we seek to advocate on the behalf of these individuals and their families as they seek justice. To that end, NDSS continues to be dedicated to issues that prevent harm, abuse, and victimization of individuals with Down syndrome.

The Best Part of Your Day

By Shanell Mouland, Blogger at GoTeamKate.com

KateIf our Kate was to sit quietly beside me on any given day you might never know she was different.  Her eyes are impossibly blue and her blonde hair is cut just above her chin with bangs framing her angelic face.  She is tall for her age; almost four.  For all intents and purposes she could, potentially, appear ‘normal’ if there is such a thing.

If you look closer you will see she that her blonde hair is wild about her head for lack of brushing, because brushing hurts and she wears a well-worn bright red Teenage Mutant Ninja Turtles t-shirt, because change is hard.  In her mouth is a chewy tube that helps her regulate a need to chew and in her tiny hand is Master Splinter, the Sensei of the aforementioned turtles.

She is likely up on her toes, bouncing or spinning.  If she is happy her arms are flapping. She is usually happy. The idea of her sitting quietly is almost humorous to us now.

She may be repeating a comforting phrase.  She has acquired much language even if she cannot always use it properly.

“Wet’s do dis.” (Let’s do this) A phrase she’s pulled from her turtle show, no doubt.

Kate has autism and she’ll be the best part of your day.

Grace, our eldest daughter (5) and Kate’s best friend will often have one hand at the ready, for when Kate sees fit to take off.  She is young and quick and can often capture her sister before me.  You’ll see this scenario play out whenever we are in public.  I’ve often said the four words Grace utters most in public are:  “Mama, she’s getting away!”

My husband and I make every effort to do things as a family.  If we feel Kate will be overwhelmed we obviously give her a pass and she can spend some down time with her grandparents, however, if we feel Kate will enjoy any given excursion, look out, because she is coming.

Our family loves a certain Japanese restaurant in our city.  Do I call ahead and warn them we are coming? No.  Do I announce on social media that we will be there in case someone was planning a quiet dinner?  No.  We attend the restaurant with our family just like you would.

Yes, Kate will most likely not sit in her seat.  She will probably visit most tables in the restaurant anxious to show off her turtle figure.  She will explore the textures of the seats and the tablecloths and the curtains.  She will protest loudly when she is not allowed in the kitchen.  She will make sure each patron eating dinner that evening is fully aware of her presence.  She will call the women, Mama and the men, Daddy and she will hug more than a few.

In our experience, most people will smile broadly and engage our little social butterfly.  Some will shoot us that ‘how dare you bring a child to a restaurant like this’ look and some will stare at us with pity.

As we enjoy our Sushi and Tempura and some great conversation with the folks at table five about autism and our family, the woman at table nine purses her lips and sips her wine annoyed that mid-miso soup she was privy to Kate yelling to the chef clear from our table:  “Dat your hat, daddy?  I have dat hat?”  Her husband seems oblivious to her annoyance and taps on his phone while murdering his teriyaki.

Table five dissolves into laughter at Kate’s cute request for the chef’s hat.  They order more wine and ask Kate which turtle is her favorite.

Table nine gets up and leaves.  They pay their check with a disapproving glance from the Mrs. towards us.

Honestly, who brings someone like that woman out to a public restaurant where a family is trying to enjoy a meal, anyway?

And then I hear:  “Mama, she’s getting away!”

 

Shanell Mouland is a mother, teacher and writer from New Brunswick, Canada. When she isn’t advocating for the rights of individuals with autism she is writing a children’s book called: Sunny and Sinclair. She is actively seeking a publisher because the three full time jobs mentioned earlier take a lot of time away from important things like coffee drinking and relaxing. She can be reached through her website: goteamkate.com.


Learn more about The Arc’s activities for Developmental Disabilities Awareness Month at www.thearc.org/lets-go-out, and join our March 29 event on Facebook.

It Takes a Team

By Bernard A. Krooks, Past President, Special Needs Alliance

Dignity, security and personal fulfillment are essential to the quality of life that all individuals with intellectual and developmental disabilities deserve. But they face a tangled social, political and legal landscape, and it often requires the coordinated efforts of relatives, friends and special needs professionals to help them map their way.

Family members, of course, play a central role, offering emotional support and encouragement, planning for long-term financial security and frequently acting as primary caregivers. For some, they’re an individual’s most effective advocates, reinforcing their point of view with intimate understanding of a loved one’s needs.

Yet all too often, dreams face constraints.  Landmark legislation has recognized the civil rights of individuals with disabilities, and great strides have been made regarding social inclusion. But these hard-won victories are incomplete, and budget debates at all levels of government threaten even the programs already in place. Self-advocates, families and their supporters –advocacy organizations such as The Arc, the Consortium for Citizens with Disabilities, the Special Needs Alliance and many others–must continue their unstinting demand that people with disabilities have the same opportunities as others to lead self-directed, satisfying lives.

Then there are the special ed teachers, speech therapists, psychologists, career counselors and many other service providers who assist those with disabilities on a daily basis to realize their potential. These committed professionals challenge, guide and applaud those they serve in order to build the skills needed for self-reliance. They help provide a foundation for the aspirations of individuals and their families.

As a child with disabilities matures, families must often balance concern for their safety and well-being with a desire to encourage their independence. In most states, individuals are considered legal adults at 18, with full responsibility for their own financial, legal and healthcare choices. Special needs attorneys are sensitive to these deeply personal matters and can guide parents in their deliberations concerning various forms of guardianship, power of attorney and health care proxy, as necessary, and in ways to optimize self-direction.

Then there are financial considerations. The specialized care required by some individuals with developmental disabilities is costly. While many expenses are covered by public programs, there are gaps, and qualifying is usually means-based.  Families, financial advisors and special needs attorneys should begin partnering early to evaluate an individual’s long-term needs, eligibility for benefits, the amount of money necessary to make up the difference between what is covered and what is not, and how to protect those funds while receiving government assistance.

Self-advocates are increasingly shaping their own destinies. It takes a team to assist them with the tools to succeed.

The Special Needs Alliance (SNA), a national non-profit comprised of attorneys who assist individuals with special needs, their families and the professionals who serve them, has formed a strategic partnership with The Arc.  The relationship is intended to facilitate collaboration at the local, state and national level on issues such as providing educational resources to families, building public awareness, and advocating for legislative and regulatory change. 

Reflecting on Wings for Autism

By Sylvia Fuerstenberg, Executive Director of The Arc of King County.

Wings for Autism event registration

Wings for Autism took flight at SeaTac Airport, and it was a great success. I am so grateful for all of the families who took part in our launch, as well as the many volunteers who made the event a success. The commitment of The Port of Seattle and Alaska Airline is phenomenal. They are single minded in making travel inclusive for everyone. The TSA even made going through security a positive experience. When that is true, you know that everyone was committed! Although I could say a lot more about the event, I would rather let some of the parents and event partners tell you about their experience.

From Lisa Okada Visitacion, Mom:

“Phenomenal event. Increasing awareness and understanding. Building confidence and skills. Giving families hope. These are just a few thoughts I had about the Wings for Autism event yesterday. Kelli (and all the other participants) did such an amazing job. Many, many thanks to all the volunteers (there were many!) and staff at The Arc of King County, Alaska Airlines, TSA and the Port of Seattle. We will remember this experience forever and will most likely be flying Alaska Airlines when we travel by air. (I wonder if we can we take along a few of the volunteers, too?!?!)”

Wings for Autism pilot & child

From Jacki Jones Chase, Mom:

 “We got in the plane and they taxied it all over the airport runways. Then they stopped and let the kids, and adults, go check out the cockpit and bathrooms – they really put on an awesome event for kids with Autism!”

Wings for Autism pilots

From Jennifer Wade, Mom:

 “From the moment my family arrived at the airport, there was a friendly, smiling person with a Wings of Autism T-shirt on, guiding us along our way.   Every step of the process we were assured, explained the process and every attempt was made to ensure we were comfortable,  our questions answered and made to feel at ease in what is potentially a stressful situation for any parent /caregiver, taking a child on a flight. A special thanks to our pilot Mark who walked thru the entire waiting area talking to each family, meeting the kids, shaking hands and relaying his own personal story and why the event was so important to him. Having a child with special needs I’ve learned that it’s the support of family, friends, specialist and complete strangers willing to share their own insight and compassion that keeps our momentum going onwards on the path of progress and potential.”

Wings for Autism participant

Ray Prentice, Partner at Alaska Airlines:

“I didn’t realize until this event that a little bit of additional training and guidance, combined with our great caring employees, could totally change people’s lives. Speaking on behalf of Alaska Airlines’ volunteers I can openly share that we had a blast.  We felt a close connection with everyone at the event.”

Wings for Autism participants 2

From Sue Hanson Smith, Partner at The Port of Seattle who traveled to Boston to learn about the event and inspired us to bring it to Seattle:

“Thank you for all for pulling off a spectacular, in some cases, a life-changing event. I am so proud to be part of such a well-organized, energetic, and fun-loving team of professionals! The Arc of King County rocks! Without you we would not have had the families and the special kids to learn from.

Without Alaska Airlines we wouldn’t have been able to provide the “life-changing” experience. Thank you so much for your flexibility and your generosity in providing the airplane experience and memories to these selected families and their children. The t-shirts were the best!

And…TSA was outstanding in their ability to provide an easy, pleasant experience to the families and their children. From all the comments I heard, the first Wings for Autism at Seattle-Tacoma International Airport was a great success and it’s because of all of you.”

Wings for Autism participants