Self -Determination Through the Eyes of a Client

Posted on February 28, 2012 by Ellen Victor

I recently had the pleasure, on my radio show Special Needs Long Island, to meet Mandy Shenkman, an individual with developmental disabilities who works with The Center for Family Support, an organization that, in part, helps people with developmental disabilities work within self-determination.

According to the Self Advocacy Association of New York State (SAANYS) (another recent radio show guest),“Self-Determination (SD) is an idea that came from people with developmental disabilities and their families who wanted more control over their supports and services. While SD can be achieved in many ways, one important way is through a new option offered by OMRDD called the Self-Determination Pilot Project.”

Mandy Shenkman, a self-determination client of The Center for Family Support, had this to say:

I’ve been with CFS for 11 years. Linda and Mary are my wonderful support team; they believe in me. 11 years ago Linda was the only MSC who believed that self-determination was real. She went through the struggle of getting me approved. Now, more and more people feel that self-determination is for them. Linda and I were the pioneers. Mary knows that self-determination provides me with choices on how to live and work in the community. Having choices gives me freedom and control. When I was unhappy with one of my life coaches, Mary helped me fire her. I don’t think I could have done that without her support.

I am so proud to be a Grassroots Presenter in the New York State Self-Advocacy Association. I talk about my life at conferences, training programs, colleges and on the radio. Linda and Mary are my agents.

Mary works with me each month to complete the paperwork for Self-Determination. Linda makes sure I am living a full and active life.

I’ve been working 2 or 3 days a week since 1998. I wanted to add another day to my work week. My supported work agency refused to help. Linda and Mary respected my request. Their efforts to find me another job were successful. I love all my jobs.

Mary and Linda are my teammates, my partners, my Circle of Support and my friends. I am lucky to have them.

Alexander Does Have Angels

Posted on February 15, 2012 by Ellen Victor

I had the pleasure of meeting 3 great founders and supporters of Alexander’s Angels, a 501(c)(3) organization whose mission is to promote a better understanding of people with Down Syndrome.

Esther Gomez-Nieto, the President and Founder (and whose grandson Alexander was the impetus for the organization) refuses to take credit for the astounding amount of money that Alexander’s Angels has raised and contributed to numerous Down Syndrome organizations. But as anyone knows who has run a fundraiser for a nonprofit event, it takes an enormous amount of time and energy. There are so many great causes, and just limited funds and time. Yet, Alexander’s Angels, through Esther and fellow members Janet Dolan and Michael O’Connell, have raised about $300,000 in just the last few years. Most of the money goes towards other advocacy, service and research organizations.

Coming in March, there are three exciting events being planned. On March 4th, at 3PM, the New York Islanders are hosting Alexander’s Angels. Purchasing tickets will go towards a great cause and be sure to be a fun filled Sunday afternoon.

On March 19th, all Long Island Friendly’s will donate a percentage of your check to Alexander’s Angels. Please be sure to mention the organization before you order. I’m planning on stopping by right after my radio show, Long Island Special Needs Radio, that Monday night.

To coincide with World Down Syndrome Day, and starting right after the United Nations celebration of the day, there will be an art show by artists with Down Syndrome downtown New York City (details on the Alexander’s Angels website).

Tweet Support #YouMightBeAnAutismParentIf

Posted on December 31, 2011 by Ellen Victor

Twitter? Isn’t that where everyone talks about what they had for breakfast? That’s the reaction I often get whenever I mention Twitter as a great support system for parents of children with autism.

A twitter hashtag (#) is a way to find tweets that have a common subject, in this case, #autism. Anyone who searches for #autism will find a whole community on Twitter interested in the same subject matter. You’ll find humor, resources and sharing.

According to this article in the Washington Times, the YouMightBeAnAutismParentIf hashtag became popular several weeks ago, and is still going strong, with tweets both funny and heartfelt.

Check it out!

Autism: Tips for the Holidays

Posted on December 21, 2011 by Ellen Victor

Just a very quick post to direct my readers to this page at Autism Speaks. There are more links on that page to websites that have tips for helping families and their loved ones with autism have a happy holiday, found here at Autism Services Foundation, and for reducing holiday stress found here at Autism Spectrum Therapies.

Above all, have a happy and safe holiday!

Congrats to Nassau Knights, Special Needs Football Team

Posted on November 30, 2011 by Ellen Victor

The Nassau Knights, Nassau County Police Activity League’s (PAL) flag football special needs team, played and won against a group of Kappa Sigma fraternity members from Adelphi University.

According to Newsday, the team of 14-28 year olds with varying disabilities, played its only game against another team this season. One of the team’s coaches, Harvey Pollack, stated they usually divide into two teams and play each other, as there are no other special needs teams to play against.

The Nassau County Police Activity League is the only PAL in the country to have a Special Needs Unit.

Way to go! Congrats to both the Nassau Knights, and the Kappa Sigma Fraternity.

Shopping Made Easy with Disabled Children

Posted on November 22, 2011 by Ellen Victor

A visit to the supermarket can be difficult for parents of a child that have children requiring a wheelchair. It can be very challenging to push both a shopping cart and a wheelchair, but shopping carts have never been able to offer the security of a wheelchair before Caroline’s Cart helped to overcome this challenge.

Special Needs Long Island Radio Show

Posted on November 6, 2011 by Ellen Victor

I’ve got a new gig!

I’m pleased to announce I am now co-hosting Special Needs Long Island, a weekly radio program dedicated to the special needs community on Long Island. My co-host is Jeffrey Silverman, Director of Special Needs Planning for the Center for Wealth Preservation in Syosset, New York.

Every Monday night, from 6:30 to 7PM, we feature guests from special needs organizations, professionals practicing in the field and individuals with special needs.

Please tune in 1240 AM WGBB or on the web at www.am1240wgbb.com (click on Listen Live)

Broadway Roars: Autism Friendly Performance at Lion King

Posted on September 12, 2011 by Ellen Victor

Broadway is becoming autism friendly! The Theater Development Fund (TDF) has started a new program known as the Autism Theater Initiative to make theater more accessible to children and adults on the autism spectrum and their families.

The Lion King has been chosen as the first ever Broadway autism-friendly play with a special performance and reduced prices for its October 2 matinee. The show sold out quickly, but we can expect if the results are good, that it will be repeated. You can sign up for information on future performances here.

According to the NY Times, some of the modifications made for this special performance include less strobe lighting and softening of the sound in some places. Many autistic persons are sensitive to light and sound.

The entire theater has been bought out for this performance. Although many Broadway productions have the ability to modify shows for hearing and sight impaired people, those modifications are made during regular performances. According to Lisa Carling, T.D.F.’s director of accessibility programs:

“We wanted to create an environment that was welcoming to children and their parents so they could come in and not be afraid of judgment from other theatergoers who might not understand why a child is doing repetitive movements, or rocking back and forth, or why a child might need to wear headphones or get up in the middle of a song and take a time out in the lobby.”

What a wonderful idea. Let’s hope that more shows follow, and that The Lion King has much success.

NY to Require Insurance Companies to Pay for Autism Treatments

Posted on June 27, 2011 by Ellen Victor

Via a press release issued by Chairman of the Senate Mental Health and Developmental Disabilities Committee Senator Roy McDonald:

The New York State Senate today approved legislation to enable individuals with autism spectrum disorders to receive insurance coverage for screening, diagnosis and treatment. The bill (S.4005A), sponsored by Senator Charles J. Fuschillo, Jr. (R, Merrick), would save tens of thousands of dollars in out-of-pocket expenses spent by families caring for individuals with autism and address insurance companies’ refusal to cover costs for autism treatments and therapies.

Autism Spectrum Disorders affect individuals of all ethnic, racial, and socioeconomic groups. The Centers for Disease Control (CDC) estimates that 1 in 110 children, including 1 in 70 boys, are currently affected with autism.

The legislation requires insurance companies to provide coverage for the screening, diagnosis, and treatment of autism spectrum disorders, including behavioral health treatments, speech therapy, occupational therapy, and physical therapy. Insurance companies would be prohibited from terminating coverage or refusing to renew, adjust, amend, issue, or execute a policy solely because the individual has been diagnosed with or received treatment for autism spectrum disorders.

Understanding Autism: It’s Not Monkey Business

Posted on May 22, 2011 by Ellen Victor

Teco, a young bonobo chimpanzee, is exhibiting signs of autistic behavior, according to BoingBoing. His famous father, Kanzi, uses symbols to communicate with humans. Both chimps can be found at The Great Ape Trust, a nonprofit foundation whose tag line is “Insights through Collaborations with Apes.”

Researchers immediately noticed that Teco was not acting like normal baby chimps. He did not bond with his mother, did not make eye contact and he became agitated when his surroundings weren’t exactly as he wanted them to be. Sound familiar? Furthermore, Teco is showing some repetitive movement, another very human sign of autism syndrome.

Here are a few more questions, answered by Teco’s caretakers: Q &A.

Teco

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