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Pure Friendship for Individuals with Special Needs
Melissa Stuart
Legal & Planning

An 8 step guide to insurance coverage for autism

Health insurance can be an invaluable resource for families with children with autism to help make the often high-cost and high-frequency treatments for their child more affordable.  However, making sure that services and providers are covered can be confusing and time-consuming.  Below are some tips for how to make the process more manageable and to maximize coverage.

1. Know your policy

Make sure you are familiar with your policy and the scope of coverage available.  If you cannot answer the following questions, you should talk with a representative from your insurance provider, your employer’s Human Resources representative or your insurance agent.
  • How does my policy define autism and the services my child needs?
  • How many visits and what types of providers are covered by my policy?
  • What are my out-of-pocket expenses for each visit?
  • What are my total out-of-pocket expenses and deductible for the year?
  • What are the maximum yearly or lifetime benefits allowed?
  • Are my child’s providers considered “in-network”?
  • Does my insurance provider require additional documentation or a treatment plan for claim approval?
  • What is the process for filing a claim?
  • What is the process for appealing a denial?

2. Know the law governing your policy

Each insurance policy is governed by either federal or state law and this can have an impact on your rights and the type of coverage available to you.  For instance, self-funded plans often found with large companies are governed by ERISA and federal law whereas state law governs group and individual policies.  Finally state and federally-sponsored health plans can be governed by an entirely different set of rules.  Knowing what laws apply to your policy can help you make sure you are getting the right coverage.

3. What are mandates?

Mandates are laws that require state-licensed health insurers to offer or include coverage for certain benefits or services.  One of the latest state legislative trends is to enact a stand-alone autism insurance mandate that covers treatment specifically for autism. There are great resources for information on laws relating to insurance coverage for autism including the National Conference of State Legislators and Autism Votes.

4. Work with your child’s providers

Some autism insurance mandates and insurance companies require a treatment plan that outlines the frequency and expected outcomes for different types of services.  Often the law requires that certain providers like a medical doctor or psychologist write the treatment plan.  Work with your child’s providers to develop a treatment plan, make sure it stays up-to-date and that your child’s progress can be measured and reported.

5. Stay organized

When dealing with denied claims, be prepared to be on the phone – a lot.  Having all your information organized and easily accessible can help move the process along.
  • Create separate tabs for each type of service
  • Keep copies of treatment plans, progress notes, bills, Explanation of Benefit forms, and communications with your insurer.
  • Make sure you have copies of your insurance card, policy handbook and contact numbers (phone and fax) for all providers, your benefits coordinator or HR representative, and your insurance carrier.
  • Depending on how detailed you want to be, you can create a spreadsheet or log for each visit length, whether or not the claim was paid, and how much your out-of-pocket expenses were.
  • You should also have a notebook or sheets of paper where you can jot down the date and time and notes for any communications you have with the insurance company.

6. Stay calm

Navigating the insurance system can be frustrating.  If a claim for services is denied, be prepared to talk to many people and tell your story over and over.
  • Make sure you get the name and ID number and if possible, a direct contact number or email for each person you talk to.
  • Take notes about what was discussed during the conversation.
  •  Make sure you understand WHY the insurer denied the claim and what your next step should be to appeal.
Knowing their reasoning can help you craft your response and avoid wasting time.

7. Know the Loopholes

There are a few common ways, some of which have been stopped through autism insurance reform laws, that insurers will deny claims for services relating to autism treatment.  This is why it is so important to know the law. For example, insurance companies have classified Applied Behavior Analysis (ABA) as “experimental” or “educational” as a way to deny coverage.  And while autism insurance mandates have sometimes helped quell this argument by specifically listing ABA as a covered service, the mandates do not always apply to every insurance policy.  Fortunately, the federal Office of Personnel Management, the agency responsible for administering federal health insurance coverage for federal employees, has recently decided that ABA therapy is not experimental or educational paving the way for it to be a covered service.  While the OPM’s decision does not apply to everyone, it does make it easier to argue that ABA should be covered.

8. Know where you are in the process

Because the burden of proof lies with you to show why the claim is a covered service, fighting a denial can be difficult and frustrating.  Part of staying organized and staying calm is to know where you are in the claim review process.  There are both internal appeals within the insurance company and external appeals and administrative remedies that typically must be done before someone can file a lawsuit claiming denial of coverage. If you are still not satisfied after exhausting the insurance company’s internal grievance process, you can file a complaint with the state agency that regulates insurance.  State insurance regulators can serve as intermediaries to resolve specific conflicts and, in some instances, they can facilitate an external review by a panel of independent medical experts. After exhausting administrative remedies through the state’s insurance regulator, you can bring a lawsuit against the insurer.  There are different laws available depending on the type of insurance plan that you have.  Lawsuits may also be brought under contract or tort law theories (i.e., fraud, or bad faith), or under special state insurance laws. If this is an option you are considering, it is important to consult with a licensed attorney.  Typically, courts interpret exclusions narrowly and coverage broadly.  However, while courts may offer protection for consumers, the time, money, and resources needed to pursue litigation against an insurance company is not something many people can afford, especially considering the high cost of treatment. For a great resource on Autism Insurance Reform, see my article in Volume 8 of the Indiana Health Law Review

WRITTEN ON December 24, 2013 BY:

Melissa Stuart

Melissa Stuart is an associate attorney at Cohen & Malad, LLP in Indianapolis, Indiana. She graduated J.D., cum laude from Indiana University School of Law, 2011 and was Editor-in-Chief of the Indiana Health Law Review. Prior to joining Cohen & Malad, LLP, Melissa worked for several years at Riley Children's Hospital in the Christian Sarkine Autism Treatment Center as a Research Specialist.