#80 - Winning Insurance Battles


When you enter the world of differing abilities you also enter the not so pleasant world of insurance. What are the tips and tricks to ease the pain of this experience and most importantly, get your claim approved?

This episode is one you will want to tag, earmark, and save to revisit again and again. It may require more than one listen to absorb all that you are getting ready to learn about the mystifying and often frustrating world of health insurance.

To demystify the world of denied insurance claims and equip us is Karen Fessel, the executive director and founder of the Mental Health and Autism Insurance Project, a nonprofit with a staff of insurance ninjas talking on insurance companies on behalf of the disability community. 

In addition to serving as the executive director of MHAIP, Karen co-moderates the ASDinsurancehelp and ASDMedi-Cal Yahoo users groups. Karen holds a doctorate in public health from UC Berkeley. Her prior work experience includes developing technology assessments and treatment guidelines for the Permanente Medical Group and conducting research projects at the Department of Public Health and UCSF. On the public policy front, Karen co-chaired the autism subcommittee on insurance with the East Bay Autism Regional Task Force and served as a parent advocate on the initial Department of Managed Health Care (DMHC) Autism Advisory Workgroup. She is the proud parent of a 22-year-old son with Asperger's and an 18-year-old daughter.

Mentioned in the Episode:

  • Karen has a doctorate in public health and saw how hard insurance navigation could be as she experienced battles for coverage with her own son who has autism. She knew there was a law on the books to protect people with autism yet she still had to fight for coverage. She learned coverage was possible but it was necessary to know the system which is not possible for many. This spurred her on to help other families over a decade ago which turned into the nonprofit organization the Mental Health and Autism Insurance Project.

  • The easiest way to ensure coverage is to stay in network, however more often than not the network is not adequate and patients must look outside of the network. When out of network it’s up to the parents to submit claims or negotiate single case agreement or network exceptions.

  • Parents must prove the network is inadequate. Doing so requires going down the list of providers in the network and proving they are not an appropriate option.

    Karen shares ideas on how to craft a case

    Kim shares the story of when she did this to get approval for an out of network ABA provider.

  • A self funded / self insured plan is one which has more than 300 employees. They choose and pay an insurance company to cover their employees. If you are on a self funded plan, it can be helpful to have the employer contact the insurance company on your behalf because the employer represents hundreds of customers rather than one. Once a year, the company can make decisions to add coverage which you can request

  • Some insurance companies have autism care managers that will help coordinate claims. You can ask to speak with a coordinator and keep that same person for all of your claims on the mental health side. This may be a way to bypass the front line person who answers the calls. However, speech, OT, and PT are on the medical side and autism is on the mental health side. So you can start by trying with your care manager but there is a chance you may get bounced back and forth between sides. You can request to keep the case manager and even ask for his/her direct phone number.  

  • Be sure to track conversations. Each conversation will have a tracking number. Get it and be sure when they say something you are in agreement with, that they have documented it in their notes. Do the same and put the tracking number and the person you spoke with along with the date/time.

    The online chat feature is very helpful because it documents the conversation for you and can be downloaded.

  • Hot button words to use in the phone calls include things like “injurious to self and others”. Use stories to create the picture. Another way to get their attention is to show how not treating the patient will result in a higher payout in the future. 

  • When claims are denied, be sure to get a written denial letter. They legally must site where in the manual your request is not covered so make sure to have access to the plan manual. Most can be downloaded from the website or your employer can give it to you.

  • The regulator is in the Department of Health Care of the Department of Insurance. For self funded plans they can be found in the Department of Labor. Give the regulator all of the documents that have been gathered showing how hard you tried to meet their requirements. If you get to the point where the regulator is necessary, do not tell the insurance company as this may delay the case further. Just do it. Do know this is a formal grievance so there should be a significant paper trail of how hard you have tried.

  • Adults with disabilities can stay on their parent’s plan as long as the parents are on the plan, assuming it’s in the manual. If it’s not in the manual, talk to your employer.

  • The Mental Health and Autism Insurance Project is a nonprofit organization and your tax deductible donations are greatly appreciated.

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