Tag Archives: Autism Spectrum Disorder

Bill proposed in State Assembly to cover GPS tracking devices for kids with autism


| aaltamirano@queenscourier.com

Handout

Staten Island Assemblymember Matthew Titone introduced a bill in the State Assembly that would require insurance companies to offer GPS device tracking coverage for children with Autism Spectrum Disorder (ASD).

The bill comes after autistic teen Avonte Oquendo was laid to rest.

Avonte was last seen at the Center Boulevard School in Long Island City on October 4, when he ran out of the school, located just across from the East River. His body was found on January 16, washed up in College Point.

“The tracking devices are crucial in finding lost children quickly and safely,” said Titone. “Unfortunately, such devices can be expensive and difficult to maintain.”

Titone also added that insurance companies would be responsible for covering the costs of the equipment and monitoring services.

In January, Senator Charles Schumer introduced a bill called “Avonte’s Law” which will create and fund a program to provide voluntary tracking devices and increase support services for families of children with ASD or any other developmental conditions in which bolting is common.

Later that same month, the Department of Justice agreed to take existing funding which already helps track seniors with Alzheimer’s and expand it to children with ASD.

The funding will become available to police departments or other local law enforcement groups that would be able to provide tracking devices to parents, schools and legal guardians interested in the program.

 

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Op-ed: Let’s be their voice


| oped@queenscourier.com

U.S. SENATOR CHARLES SCHUMER

The heartbreak and agony that Avonte  Oquendo’s family has had to endure is one that I can’t even begin to imagine. Over the course of the past few months, Avonte became more than just a face on a missing poster. New Yorkers came together to search for Avonte and pray for his safe return; we felt like he was a child we knew personally. While we cannot change the past, we must take the necessary steps to prevent this from happening again—and that’s why I am introducing “Avonte’s Law.”

Avonte’s running away was not an isolated incident; running away or wandering among children and teens with Autism Spectrum Disorder is more common than one may think. In fact, nearly half of children with autism over the age of four have attempted to wander. Often times, these children wander due to being over-stimulated by loud noises or bright lights – something that is a particular challenge for children with autism in New York City.

I recently met with Vanessa Fontaine and Doris McCoy, Avonte’s mother and grandmother, as well as Michael Rosen, the Executive Vice President of Autism Speaks. Mr. Rosen shared personal stories about his son, Nicky, who has autism and is nonverbal. He spoke about Nicky’s experience with wandering. I listened intently when Mr. Rosen said that Nicky once ran out of the house and made his way into the neighbor’s living room to watch Disney movies—a fascination of Nicky’s. Thankfully, Nicky was found safe.

Our children are too precious for us to wait another day when life-saving technology and precautionary measures are right at our fingertips. Technology such as GPS or Radio Frequency(RF) tracking is on the market now, and they allow parents, schools and law enforcement to locate a child if he or she wanders or goes missing. The Department of Justice runs a very successful program that provides tracking devices to individuals with Alzheimer’s disease who have similar wandering tendencies. So, after Avonte went missing, I urged the Department of Justice to use their existing grant funds to allow children with autism access to these life-saving tracking devices – this past week, they did just that.

The program would be completely voluntary for parents, but it would be a major stress reliever for the thousands of parents of children with autism. Most importantly, though, this technology has the power to save lives.

That is why when the world learned of the tragic fate of Avonte Oquendo, I drafted legislation that will create a permanent program with dedicated federal funding to provide tracking devices for children with autism, as well as training and education for parents and communities. The legislation, “Avonte’s Law,” will allow Avonte’s memory to live on while helping to prevent any more children with autism from going missing.

Attorney General Eric Holder announced that the Department of Justice will allow existing DOJ grant funds to be used for children with autism. This is terrific news, as it means that localities can soon put federal funds towards these life-saving tracking devices as well as education for law enforcement that deal with this issue on a daily basis. This is a major step in the right direction, and I will continue to work on this very important issue until “Avonte’s Law” is passed, which would provide a more solid stream of funding to help children across New York and the rest of the country.

We must be the voice of children with Autism Spectrum Disorder.

Schumer was elected to the U.S. Senate in 1998. Following the elections of 2006, Majority Leader Harry Reid appointed him to serve as Vice Chair of the Democratic Conference, the number three position on the Democratic Leadership team and a position he continues to hold. In 2009, Schumer was selected as the Chairman of the Senate Rules Committee, which oversees federal elections, voting rights, campaign finance, and the operation of the Senate complex. He also sits on the Committee on Banking, Housing, and Urban Affairs; the Judiciary Committee, where he is Chairman of the Subcommittee on Immigration, Refugees, and Border Security; the Joint Economic Committee, where he is the Vice Chairman; and the Joint Committee on the Library.

 

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Senator Charles Schumer introduces ‘Avonte’s Law’


| aaltamirano@queenscourier.com

Photo courtesy of Senator Charles Schumer's Office

A day after autistic teen Avonte Oquendo was laid to rest, one politician announced legislation that could help prevent a similar tragedy from happening.

Avonte, 14, was last seen at the Center Boulevard School in Long Island City on October 4 when he ran out of the school. Almost four months later his remains were found washed up in College Point.

There have been conflicting reports on how the Rego Park teen, who cannot verbally communicate and is supposed to be supervised at all times, managed to leave the school.

Senator Charles Schumer announced Sunday he will be introducing a bill called “Avonte’s Law” which will create and fund a program providing voluntary tracking devices and increase support services for families of children with Autism Spectrum Disorder (ASD) or any other developmental conditions in which bolting is common. The program would only include children whose parents choose to use the devices.

“The tragic end to the search for Avonte Oquendo clearly demonstrated that we need to do more to protect children with autism who are at risk of running away,” said Schumer. “Thousands of families face the awful reality each and every day that their child with autism may run away. Making voluntary tracking devices available will help put parents at ease, and most importantly, help prevent future tragedies like Avonte’s.”

The bill would create a new grant program within the Department of Justice allowing the agency to award funds to local law enforcement agencies or organizations wanting to provide tracking devices for children with Autism. The funds would also help provide training and other resources to schools allowing them to be prepared to react to a situation like Avonte’s.

The new program would be modeled from the federal program already being used to help track seniors with Alzheimer’s.

“Avonte’s Law” will authorize $10 million in federal money to purchase the voluntary tracking devices and training for parents, schools and local law enforcement. The program would be run by the police department or other local law enforcement and would provide training on how to use and maintain the devices. 

The tracking devices could be worn as non-tampering wristwatches, anklets or be clipped onto belt loops or shoelaces. The devices could also be woven into specially designed clothing.

“The tragic fate of Avonte Oquendo hit home with parents in New York and across the country,” said Liz Feld, president of autism advocacy organization Autism Speaks. “We need to raise awareness and increase education so that tragedies like this never happen again.”

 

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A mother’s story: The challenges of living with Autism


| aaltman@queenscourier.com

THE COURIER/Photo by Alexa Altman

Edna Luna’s curly-headed, big-eyed little boy was always a little different.

The way he related to the world, his cognitions, were unlike those of other children.

Concerned, Luna took her toddler-aged son, Winter, to see a doctor, who diagnosed him with Pervasive Developmental Disorder (PDD) – a nebulous term for any delay in progression.

Displeased with the doctor’s unspecific diagnosis, Luna’s desperation took her to the Internet, searching through countless testimonials of parents in similar situations.

“My child doesn’t respond when spoken to.”

“My child is hypersensitive to noise.”

“My child doesn’t interact with other children.”

The screen said “Autism.”

Luna is a single mother living in Flushing with her two sons, nine-year-old Winter and 19-year-old Nathaniel (Nate), both of whom are Autistic.

She too is Autistic.

According to the Centers for Disease Control (CDC), one percent of all children are classified as living with an Autism Spectrum Disorder (ASD). Parents of one child with ASD have a two to eight percent chance of having a second child who is also affected.

For Luna and her two sons, routine is essential.

Winter awakes at 6:30 every morning. He attends third grade at Robin Sue Ward School, after which Luna picks him up and the pair run errands or walk the links at a nearby golf course. Wherever they go, Winter needs fair warning. There can be no surprises.

Some nights, Winter wakes up at 3 a.m. Through the wall, Luna hears her son reciting lines from movies or conversations he heard throughout the day. She says it’s his way of making sense of the world.

“At the end of the day you’re exhausted,” said Luna. “A lot of the things you feel during the day you had to keep to yourself. Just connecting to the world is a challenge.”

And other people aren’t kind.

“They see you reprimand your child and people get rude,” said Luna. “Sometimes people talk to him and he won’t talk back. If it’s too loud, he won’t sit still. Sometimes he just gets frustrated and has a meltdown.”

Luna wishes others could relate and that people understood ways to connect with affected children.

There are days when Nate refuses to leave his room, spending the entire day playing computer games.

An interest in computers evolved into expertise. Nate can take apart and reassemble hard drives, motherboards and monitors. He also taught himself how to build guitars.

“Anything he gets into, he’s an expert,” said Luna.

Constant teasing in school caused Nate to develop anxiety – occurrences unnoticed until students showed up at Luna’s door to tell her what had been happening.

Edna says Nate can appear angry and disrespectful, even lazy. Luna feels he needs constant supervision.

When Nate was 11, he expressed his struggles to his mother – the frustrations of social interaction, resorting to mimicking the actions of his classmates.

Luna justified his behavior. After all, it had been how she acted in school.

As her own Autism diagnosis, unseen for almost 30 years, became clear, she questioned life-long mannerisms previously perceived as normal.

As a child, Luna arranged her mother’s bobby pins in a long, straight line across the dresser, a compulsion she continued for years. When overwhelmed, she repeatedly flapped her hands at chest level — a practice she would later discover was called stimming. At night, Luna opened the window to her fifth-floor Astoria apartment, sat on the ledge and dangled her feet outside. She felt no danger, no fear – a symptom, she now knows, of Autism.

Luna also admitted that her childhood had been rather friendless.

“I never spoke to anyone,” she said. “I was a loner.”

Now Luna works as a part-time makeup artist and occasionally sings at restaurants around the borough. Several health issues make it difficult for her to hold a full-time job and her sons could need her at any minute.

Her passion, however, lies in her charity work. Budget cuts to local programs have driven her to work even harder.

My Charity 4 Kids, an organization in conjunction with Savannah’s Family Workshop and Volunteer One, assists children afflicted with Autism, Asperger Symdrome and blindness. Luna hopes to create workshops for parents, helping them adjust to raising a developmentally-disabled child.

While she admits to not being an expert, Luna says there’s a certain knowledge you gain from raising an affected child and from living with Autism yourself.