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Advocating For Your Child: Navigating Through Your Health Insurance

By: Dino M. Scanio, Pediatric Orthotist

The face of healthcare has changed dramatically in the last five years due to legislative influence and a spiraling economy. This has forced health insurance companies to reexamine their policies and how they provide coverage. Under examination, your health insurance company may need to make changes to save money. Their potential savings will come from issuing denials and/or limiting coverage. This is especially true when it involves coverage for children. What do you need to know in an effort to ensure proper coverage for your child?

Health Insurance Plan Documents

Your insurance plan documents are the documents of truth. As a parent of a special needs child, it is important to read through the insurance plan documents. Make sure that a service is a provided one before you seek care. BUT just because it is stated in your policy as a provided service DOES NOT mean it will be approved. The trend with health insurance companies is to deny services and hope that you will not proceed with an appeal. If you give up, it will save the insurance company money.


It is important that your paperwork is in order prior to obtaining medical services/treatment or DME (Durable Medical Equipment). Make sure the prescription is properly filled. This will reduce the “red flags” that health insurances companies rely on as an easy way to issue a denial.

The prescription MUST have:

  • Beneficiary’s Name
  • Physician’s Name
  • Date of the order and the start date, if the start date is different from the date of order
  • Detailed description of the item
  • The prescribing practitioner’s National Provider Identifier (NPI)
  • The signature of the ordering practitioner
  • Signature date

Medical Necessity

To support your effort as a parent advocate, it may behoove you to have your child’s physician provide a statement of “medical necessity”. This is a letter that explains the diagnosis/condition, why the prescription was written and the expected positive outcomes as well as any negative effects the patient might incur if the prescription is not filled. The letter must be signed by the physician and must include their credentials. Medical necessity letters are vitally important when seeking nursing care.

The components of a medical necessity letter:

  • Identifying information: child’s name, date of birth, insured’s name, policy number, group number, Medicaid number, physician name, and date letter was written
  • A statement of who you are; the child’s primary care physician
  • The date you last evaluated the patient
  • The diagnosis of the patient. Think carefully about what diagnosis to include (include as many as possible) as some diagnoses may be an exclusion. One insurance refused to cover PediaSure for a child with a diagnosis of autism because it was an uncovered diagnosis; however, on appeal, they covered the PediaSure for the same child for a diagnosis of chronic constipation, a covered diagnosis
  • Pertinent medical history (e.g. for a wheelchair approval, it would be appropriate to state that the child has cerebral palsy with severe motor impairment)
  • Document pertinent medical, developmental, or evaluative information. For the child with poorly controlled asthma for whom you are requesting a nebulizer, you would summarize what treatments have already been in place and how many ER visits and hospital admissions the child has had in the past year
  • Document why the requested evaluation/treatment/equipment is medically necessary. This is critical to the process, but unfortunately, the definition of the medically necessary varies from insurance to insurance. Medicaid’s definition of being medically necessary is:
    • Reasonably calculated to prevent, diagnose, or cure conditions in the patient that endangers life, causes suffering or pain, physical deformity or malfunctions, or threatens to cause a handicap; and
    • There is no equally effective course of treatment available for the recipient which is more conservative or less costly
  • A summary statement. In this statement, try to emphasize the logical conclusion (e.g., a nebulizer is medically necessary for this child with a diagnosis of asthma. Since this insurance covers the diagnosis of asthma and durable medical equipment is a covered benefit, it would be appropriate to approve funding for this child’s nebulizer)
  • Signature, professional qualifications, and contact information in case the reviewer has questions

Digital Photographs and/or Video

Pictures and video speak louder than words so it may be advantageous to take a few digital photographs/videos of your child. For example: if your child is unable to walk appropriately without leg braces then make a video of your child attempting to walk without braces and make sure you include the process of putting on the braces and how they improve your child’s gait. Another example is the need for nursing care to manage a wound. Make sure to take digital pictures of the wound site.

Preauthorization/Determination of Coverage

When coverage is questionable, you should be able to ask for a preauthorization for the requested services/prescription. Some insurance companies will say this is not necessary but it is in your best interest to request one. This will be your ammunition for the appeals process if services are denied. All preauthorization statements will include a disclaimer to the effect of “this is not a guarantee of payment/coverage” because insurance companies are looking to save money, NOT SPEND it.

Now you have been given the information to make you a better advocate for your child and some insight on navigating through murky waters of insurance trends. So what do you do if services are denied? Consult your insurance provider and request their guidelines for the appeals process. Insurance companies hope that the policy holder will not appeal or give up during the process because it is such a mundane task. GIVING UP WILL SAVE THEM MONEY at the expense of your child’s health! If your appeal is denied, you may have the option to request a doctor to doctor appeal, an external review or mediation. This information will be outlined in your plan documents but if further assistance is needed, you can request help from the State or Federal Insurance Commissioner. You can also file a complaint with the Commissioner which will require them to assign an investigator to your case.

We as policy holders cannot and should not allow insurance companies to dictate care. It is humanly wrong for them to say when, how and why or why not health services are provided. Doctors are experts that have the right to make decisions based on the interests of their patient. They are held to a high standard by a medical code of ethics. In my opinion, if a doctor orders it, then it should be covered by the insurance company. Be your child’s advocate and fight against the tyranny of the health insurance companies.

“It is important to remember that you do have rights which are described in your insurance policy handbook. A health insurance policy is a contract between you, the policy holder, and the insurance company. A denial is a “contract dispute,” and your appeal must be based both on the reason for the denial and provisions in your insurance policy, contract or Summary Plan Description.” –Patient Advocate Foundation


Dino Scanio is a pediatric orthotist in Tampa, Florida and the clinic director and founder of the FOOT Foundation. He is also the father of a son with mitochondrial disease. The article shared above was written before his son’s official diagnosis of mitochondrial disease and has been published previously in Florida Crossroads Magazine and in the UMDF newsletter. For more information on the FOOT Foundation, please visit www.footfoundation.org.