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New York State Exposed: Autism programs losing out?

Updated: 10/10/2013 11:38 PM
Created: 10/10/2013 6:29 AM WHEC.com
By: Lia Lando

In our exclusive series, “New York State Exposed”, we're tackling tough issues that affect your life, family and money. Right now, thousands of families in our community are impacted by autism. That's a challenge in itself. But some claim they're facing another battle when it comes to medical treatment because of how New York State funds programs for children with autism. Some experts say it is costing the taxpayer more in the long run.

Kids diagnosed with autism can and often do have a very bright future, but not without a lot of work. They need special services, treatment and training as early in life as possible and all the way into adulthood. But if they don't get what they need, they end up costing taxpayers millions of dollars and families a whole lot more than just money.

The Kerr family has been forced to take what many would consider an extreme measure. Their oldest daughter has autism and with each passing year, it seems her behavior gets worse. So they recently decided to sell their house in Victor where they've been living as a family for more than a decade and buy two homes in Fairport to separate their daughters.

Dee Kerr said," The episodes are unpredictable. They are very explosive and can be very violent. We knew we had one of two choices, either separate the children or put Sam in an institution and that was not going to happen on our watch.”

Not on their watch because they say there are limited places for kids like Sam to go and they say the facilities that are available, don't have the proper safe trained to help kids with autism. 

The Kerr's say they are fortunate to have the financial means to take control of their daughter's treatment, but they recognize not everyone does.

Dan Kerr said, “It is a lot of money. There was a lapse in our insurance that lasted almost a month and Sam was on medication, so it came out of our pocket. It was a $700 dollar medication for just one of her meds. What does a family do? We're blessed that we can accommodate that."

And for those who can't pay, it's costing the taxpayer. 

The Autism Society estimates the United States is facing almost $90 billion annually in costs for autism, it says that can be reduced by two thirds with early diagnosis and intervention. But it says if we don't act the annual cost could reach as much as $400 billion in ten years.

News10NBC's Lia Lando asked, "Who do we hold accountable for this?”

Lawana Jones, founder of the Autism Council of Rochester, said, “Our elected officials who are able to vote on funding. Those are the folks we need to hold accountable.”

Lawana Jones, founder of the Autism Council of Rochester, says autism is grouped under developmental disabilities when it comes to funding and not a focus in New York State. So kids aren't getting the treatment they need to eventually becoming contributing members of society.

Lando said, “Where is the funding going? Does it need to be redirected perhaps?”

Jones said, “I think we need to look at where is the funding going, how is it being spent, how we can redirect some of those funds to focus more on autism as we know the increased prevalence of autism is about 78 percent since 2008."

Jones says it's all about making sure as many kids as possible with autism learn how to live independently and she's been doing a lot of research on other states that she says have programs proven to work.

Jones said, "For example, Pennsylvania. They have residential programs there that we need to model or we can look at modeling or look at Connecticut, they have autism transition programs which encompass employment, job training skills, lifeskills.”

She says those states are putting autistic kids to work so they're not costing taxpayers and draining Social Security disability and Medicaid.

Jones has a plan called “the Autism Blueprint". That's taken her more than two years to come up with. She says it will help get New York on track. The program is she says she can't get lawmakers to pay attention to it. So News10NBC went to Senator Joe Robach.

Senator Joe Robach said, “I've gone to fundraisers and things and perhaps if there is a proven modality that works you certainly want that to be implemented.”

Robach says he has spent a lot of time trying to help people with disabilities.

Robach said, “We've made great strides both in insurance coverage and other things.”

But Lawana says it's not enough.

Jones said, “Autism is not necessarily a priority. The broad spectrum of disabilities currently is the focus.:

Right now, the Kerrs are focused on doing whatever they can for their family and 11-year-old Samantha.

Kerr said, "She asks every night the same prayer over and over, 'would God please make me normal.'” 

Families all over the state are praying Albany will do something more to help with this growing problem.

At this point, Lawana Jones says she has plans to present her "Autism Blueprint for New York" to Senator Joe Robach and she says Kirsten Gillibrand has agreed to look at it too. We will continue to follow this story and let you know of any new developments. 

News10NBC's Lia Lando will be taking your questions on this story tonight between 5:00 p.m. and 7:00 p.m. on her Facebook page.