ASO ACTION ALERT: Ohio Autism Insurance Parity

[Guest guest]

Dear Autism Insurance Parity Advocate:

We have just received word that the House Insurance Committee will be holding another hearing on Autism Insurance Parity on Tuesday, April 1, 2008 at 2:30pm at the Statehouse Room 121.

With apologies for the short notice - we need your help! We need parents that are willing to come to Columbus to testify. We would like at least 2 parents to testify.

Following my signature are copies of the testimony given by parent Tamara Heydt and ASO President and parent Barb Yavorcik at one of the last hearings. Your testimony should share your story of problems receiving coverage for autism treatments and reinforce the points made by Tamara and Barb.

Please contact a at ebbt@... if you have submitted written testimony for a previous committee hearing and are able to attend to read your testimony or if you have not previously submitted testimony and you are able to testify. If you have submitted testimony and are unable to attend, we may have another parent read your testimony. a will be coordinating Tuesday's parent testimony. We will confirm with you regarding whether you will be testifying no later than Monday, March 31. Either way, we hope you will be able to attend.

If you are not going to testify, you can still come to the hearing to support those that are. We need strong support at the Committee hearing. I know that the Autism Awareness Rally is the next day - so if you are unable to make the rally, perhaps you can attend the Insurance Committee hearing.

Thank you for working with us to pass autism insurance parity!

Sincerely,

Barbara C. Yavorcik

Co-President

Autism Society of Ohio

For the Autism Insurance Parity Committee:

Barb Yavorcik, Doug Krinsky, Marla Root, Petrill, Jacquie Wynn, Rep. Jon , Rep. Ted Celeste, Lori Peacock, Andie Ryley

TESTIMONY OF TAMARA HEYDT

127th General Assembly

Regular House Session

House Bill 170

Tamara Heydt – Parent of 2 children affected with Autism

Good afternoon.

My name is Tamara Heydt. I live in Grove City, Ohio with my husband and our 4 children (2 sons and 2 daughters). Our boys, Garrett and Gavin, have autism.

In the past couple of years the word “autism†has been popping up in television commercials, magazine ads, and billboards. Media stories and magazine and newspaper articles have increased dramatically. It is wonderful to see all the awareness finally coming to light. Yet, we must understand that autism is more than just a word; more than just a household name we hear when we turn on our radios or see when we flip through a magazine. Autism is a medical disorder and it affects 1 in 150 people.

Autism is a complex disorder of the human body’s central nervous system. It is characterized by 3 defining features:

1. Problems with social interactions

2. Impaired verbal and nonverbal communication

3. A pattern of repetitive behavior with narrow, restricted interests.

While there is no cure, there are several treatments available to individuals with autism. One such treatment is an intensive, behavioral intervention called Applied Behavioral Analysis, or what those of us in “autism-world†refer to as ABA. It is by far the most effective treatment for autism and research backs this up. In fact, in 1999 ABA therapy was endorsed by the Surgeon General of the United States as the most appropriate form of behavior therapy for children with autism. ABA is often used in conjunction with other therapies such as speech therapy, occupational therapy, and physical therapy.

My sons use ABA along with speech and occupational therapy. Without these therapies my boys would not be where they are today.

Garrett is 11 years old. When he was younger, he was not able to hold a functional conversation. He had the vocabulary but he didn’t know how to put it all together. He wouldn’t look at me. He obsessively collected small items, such as jewelry beads and different colors and textures of string and yarn—something completely bizarre for a 3 year old! When he started preschool, the other children noticed that Garrett seemed different and strange. No one wanted to be friends with him. We started ABA, speech and occupational therapy when he was four. After 7 years of ABA, Garrett is able to verbally communicate his needs effectively. For the first time in his life, Garrett has a best friend. He has aspirations of becoming a zookeeper when he’s an adult. He will be a productive member of society.

Gavin is 9 years old. His symptoms of autism are more severe. My husband and I knew something was wrong when he was about 15 or 16 months old. He had not developed any language. He still wasn’t walking. He constantly cried unless he was alone in a corner. He frequently banged his head. At 19 months old when he finally started walking, it progressed into toe-walking, a common sign of autism. He would not look at us. He would not smile. It was like he was a shell of a beautiful little boy, but there was nothing inside. After 7 years of ABA, Gavin can now dress himself with help of only a verbal hint. He can brush his own teeth. He no longer bangs his head. He smiles. He looks at me. Because of ABA, my once nonverbal son can now speak words. We can hear what his voice sounds like. He can finally say, “I love you, mom.â€

It has been a long, hard, continuous battle to get the boys where they are today. It has been years of ups and downs, progressions and regressions. It tests our family mentally, emotionally and spiritually. It tests my marriage. It tests our family financially.

Therapies in the treatment of autism are very expensive. Our ABA program at home costs over $60,000 per year. This includes 40 hours per week of 1:1 therapy (about 8 hours per day), consultation fees, training fees, and materials and supplies.

Speech therapy and occupational therapy each cost approximately $65 per hour for one hour per week of therapy.

When the boys were first given the diagnoses of autism we were devastated, but we were also head-strong, determined and hopeful because we were told there were treatments available. I immediately started working on getting the boys into ABA, speech and OT therapy. I reasoned that since autism was a medical disorder, our insurance would pay for the treatments. Why wouldn’t it? Health insurance pays for other neurological disorders such as spina bifida and multiple sclerosis, and other diseases like diabetes and cancer. However, I was given a 2nd crushing blow in the same week—our insurance company would not cover the treatment of autism.

In order to finance ABA therapy my husband had to sell part of his business, a business he and I have worked on for the past 18 years. We depleted our savings. A friend of ours graciously gave us money to help offset some of the cost. I started working at night, as a nurse, to help pay for costs.

After months and months of phone calls and meetings, I was fortunately able to find alternate methods of funding, but not until we paid over $60,000 out of our pocket! The funding we have now is not only unpredictable, but is also a burden on taxpayers.

I cannot fathom why my insurance company will not pay for the treatment of autism. Why is autism excluded? I pay almost $10,000 per year in insurance premiums. The entire point of having health insurance is to cover the expenses incurred due to medical reasons. (Remember, autism is a medical disorder.) Taxpayers should not have the burden of paying for my sons’ treatment. It should be the responsibility of my health insurance company.

It is unfair, unjust and discriminatory to exclude a person from receiving treatment because he or she has a diagnosis of autism. The health insurance industry needs to open their eyes and recognize and understand this as a true medical disorder. They need to take the responsibility of providing coverage for all services related to the treatment of autism. Our children deserve it and it is their right to receive a chance at living a normal life.

I have talked with so many families that are in the same situation as mine. Families that have done the right thing and saved and invested for retirement only to spend it all on therapies that should have been covered by health insurance. I’ve also spoken with families that simply do not have the funds to cover treatment and are not able to access alternate sources of funding due to long waiting lists or unavailable funds in their counties. These children are not receiving treatment that is readily available to them simply because of monetary issues. This is unacceptable!

I am asking all of you here today to please support House Bill 170 and give medical parity for the treatment of autism. The decision you make affects every single person living in the state of Ohio and we are all counting on you.

Thank you.

TESTIMONY OF BARBARA YAVORCIK

Good Afternoon.

My name is Barbara Yavorcik, I am president of the Autism Society of Ohio. I have been a board member of ASO for 6 years, am past president of the Northwest Ohio Chapter of the Autism Society of America, and most importantly, I am the parent of a 19 year old son named , who has autism.

I am here to testify in support of H.B. 170, the Autism Insurance Parity Bill.

Autism is the most common of the Pervasive Developmental Disorders, affecting an estimated 1 in 150 births, according to the latest report from Centers for Disease Control Prevention, issued earlier this year. Roughly translated, this means as many as 1.5 million Americans today are believed to have some form of autism including over 57,000 Ohioans. And this number is on the rise.

Based on statistics from the U.S. Department of Education and other governmental agencies, autism is growing at a startling rate of 10-17 percent per year. At this rate, the ASA estimates that the prevalence of autism could reach 4 million Americans in the next decade.Autism knows no racial, ethnic, social, family income, lifestyle, or educational boundaries and can affect any family, and any child.

Research indicates that early diagnosis is associated with dramatically better outcomes for individuals with autism. With targeted, early, intensive interventions, children with autism can make remarkable progress which will improve the quality of life for the individual and family and will reduce the need for future services and treatments. Early intensive intervention provides dramatic cost savings over the lifespan of an individual with autism. Yet many Ohio families have been denied medical insurance coverage for treatment for their children with autism. Their medical insurance policies specifically exclude coverage primarily for autism treatment. Imagine this scenario: You are in your child’s doctor’s office and you just received a diagnosis of autism for your child. You ask “What do we do next?â€. The Doctor tells you that there is hope, and that your child can be treated and get better. She tells you that the treatment is available locally at the area children’s hospital, and you can start treatment in the next month. She would be glad to refer you to the program. You start to feel hope. Then you find out that your insurance isn’t going to cover this medically necessary treatment… vital treatment prescribed by your doctor… treatment that will help your child…and the clock is ticking because this treatment must begin as soon as possible to work within the best “window of opportunityâ€. While you are still reeling from receiving the diagnosis, you begin the process of finding a way to pay for this all important treatment for your child – treatment that should be covered by your own medical insurance. You are forced to consider taking an early withdraw and hefty penalty on your retirement account, selling your house, having a yard sale of your furniture, calling relatives and begging them to help you, quitting your job so that you can be eligible for Medicaid, and making appointment after appointment with state and county agencies to find other funding for your child’s medical treatment, the medically necessary treatment that your child needs. The sad fact is that an elderly stroke victim can receive speech therapy, but a five year old with autism cannot. Treatment for autism is life enhancing and medically necessary – so why isn’t treatment for Autism covered?

One of the recommendations of the Ohio Autism Task Force, created by the Ohio Legislature in HB 95, and comprised of government and community representatives, was that “health insuring corporations and such other insurers as may be applicable in Ohio be prevented from excluding coverage for services provided to individuals with autism.†They go on to note: “Many health insurers in Ohio exclude coverage of services for the treatment of autism. The taskforce believes that this exclusion is based on outdated notions of what autism is and whether manifestations of autism can be treated. Other states have moved proactively by prohibiting such exclusions. Some major insuring corporations have changed their policies regarding the exclusion of autism. The state of Ohio can prompt other health insurers to modify their policies by implementing legislation which prohibits this exclusion.â€

There is a nationwide trend underway to help individuals with autism get medical coverage through their health insurance. Many other states have adopted legislation similar to HB170. Most recently, South Carolina, Texas and Pennsylvania passed autism insurance parity legislation.

Sixteen years ago, I was in my doctor’s office looking for answers as to why my beautiful three year old son could repeat commercials verbatim, could name all of the major league baseball teams, identify the flags from 100 different counties – but couldn’t hold a conversation, wouldn’t make eye contact, didn’t know how to play pretend games and didn’t ask the question that three year olds use to drive parents nuts - why. I was told he was a boy, not to worry, he was a late talker, he’d be fine. However, I knew something was wrong and when I took him to the doctor, he was diagnosed with autism. Then, not only did I have to find appropriate treatment options for my son, I had to fight for our medical insurance to cover those treatments. My son has graduated from High School, is currently employed part time and on a path to full time employment – all because he had the treatment he needed. But paying for that treatment was a constant struggle and a drain on our resources. Today, as president of the Autism Society of Ohio, I continue to hear this same story of families struggling to pay for treatment – over and over throughout the state. How sad that nothing has changed in sixteen years.

You have the power to change this to a success story throughout Ohio. Please support House Bill 170 to give medical parity for the treatment of Autism. 1 in 150 children born in Ohio every day are counting on you to make sure that they and their families can access the treatment options that will make a difference in their lives.

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