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What Is Autism?
“Autism is a general term used to describe a group of complex developmental brain disorders known as Pervasive Developmental Disorders (PDD). The other pervasive developmental disorders are PDD-NOS (Pervasive Developmental Disorder – Not Otherwise Specified), Asperger's Syndrome, Rett Syndrome, and Childhood Disintegrative Disorder. Many parents and professionals refer to this group as Autism Spectrum Disorders.”

How Common Is It?
“Today, it is estimated that one in every 110 children is diagnosed with autism, making it more common than childhood cancer, juvenile diabetes and pediatric AIDS combined. An estimated 1.5 million individuals in the U.S. and tens of millions worldwide are affected by autism. Government statistics suggest the prevalence rate of autism is increasing 10-17 percent annually. There is not established explanation for this increase, although improved diagnosis and environmental influences are two reasons often considered. Studies suggest boys are more likely than girls to develop autism and receive the diagnosis three to four times more frequently. Current estimates are that in the United States alone, one out of 70 boys is diagnosed with autism. Unfortunately, the cause of Autism is still uknown.”

Fight For What You Want
Coverage for the therapies and treatment associated with autism is limited in most states. However, states are starting to mandate more complete coverage for individuals with autism. South Carolina passed a law requiring more coverage a few years ago. If it wasn’t for 3 very determined mothers of autistic children who joined together to write the bill and push it through the legislature, over the governor's veto, it never would have happened. Lisa Rollins, one of the moms at the time had 5-year-old son who was being treated for autism, said, “The treatments averaged about $5,000 per month and weren't covered by her insurance.” "Once he was diagnosed and the insurance company learned that it was as the result of autism, they actually removed the coverage." The insurance companies told Lisa that autism was "strictly an educational issue and that it was not a medical problem." However, Lisa told them, "Autism is diagnosed by a medical physician, it's not diagnosed by a principal." "It is also an organic brain dysfunction. It is not an educational issue…." Insurers denied the South Carolina proposal to cover autism, saying it would cost too much and Governor Mark Sanford agreed, and vetoed the measure. The moms who supported the bill argued that autism is similar to a stroke, Alzheimer's disease, and neurological conditions that are covered by insurance. "They also pointed out to legislators that it was the economically smart thing to do, because those early interventions could make the difference between a child going to a residential care institution or a nursing home facility, for the rest of their lives or being able to be a typical kid and become a contributing member of society." The legislature overrode Sanford's veto in June and the law took effect on July 1, 2008.

Think Outside The Box Of Autism...
Even though health insurance companies do not want to cover your child’s services when they find out your child has autism, they are still entitled to certain benefits. Here are some ways to get those benefits that your child is entitled to: 1. Call your health insurance provider and ask these critical questions: 1) What are my individual and family out-of-pocket deductibles? What are my out-of-pocket maximums before 100% reimbursement begins? 2) How many visits per specialty (ie PT, OT, Speech) does my insurance plan allow per year for out-of-network providers? 3) Are there any limitations on diagnosis codes? 4) Does my plan have mental health coverage?

2. The ideal type of health insurance for a parent of a child with autism is a PPO or Preferred Provider Organization. If you are covered under an HMO and can make a switch through your employer or on your own.

3. Get the details on coverage of specific therapies. Most children with autism will need physical, occupational and speech therapy. They may also need psychological, feeding, social and behavioral (ABA) therapy. Does your insurance company cover these therapies? If so, what are the deductibles? How much therapy is covered per year?

4. Get the details on coverage of supplies and equipment. If your child with autism needs an augmentative speech device or other equipment, the cost may be covered.

5. Know your insurance codes and units. All insurance companies use the same codes for the same diagnoses and therapies -- but there are different codes for different units of time spent on those therapies. Be sure your therapists know which code is appropriate for their service, and how many units to charge for it.

6. Most insurance companies limit therapies when they relate to autism, but parents need to think outside the "autism box" when making their claims. For example, you should ask yourself, "Is your child getting Occupational or Physical Therapy because they have autism or is it because of hypertonia (low muscle tone)? Why should your therapist use the code for autism instead of coding for the actual issue involved?"

7. Organize your paperwork. Keep track of the information about claims you've made, claims that are pending, and grievances you may have filed.

8. If you feel you have the right to insurance coverage based on your policy, and you are running into problems getting that coverage, consider resubmitting, following up on your claim and even filing a grievance. Through a combination of knowledge and assertive follow-up, you may be able to save a great deal of money over time.

9. Once you have a solid understanding of what your health insurance will cover, research your state's offerings. Some states require that insurance companies cover autism-related claims; others offer services through the Department of Mental Health and Retardation. By mixing and matching insurance and state-funded coverage, you may find that many of your child's services are covered.

Equal Rights
Since the cause of autism is still undefined, that means a cure cannot be found. However, there are several different types of therapies that can make living with autism less of a challenge. No individual came into this world asking to be diagnosed with an incurable disorder. Everyone should be treated equally. A diagnosis of a disorder is what it is no matter what label you put on it. Whether it is mental retardation, Alzheimer’s, Down syndrome, or autism every individual should be entitled to the same medical benefits/coverage!