Kristi Gonzales shares good ideas for success

“We had a rough time getting approval for AJ's wheelchair but we had one appeal and won,” Kristi said. 

“When the original request went in, it went through our Children's Hospital Seating Clinic. They were very good and warned us that it would most likely get denied and to start prepping for the appeal.” 

Kristi says the clinic said going through an appeal is “the normal procedure,” but the Gonzales family found it unacceptable. 

“The request went in and months later the denial happened,” Kristi said. “But we were ready… 

“When fighting RARE - you are the specialist. You will know the most about why you need something and how it will benefit your child.” 

KRISTI’S “GO TO” TIPS FOR WHEELCHAIR APPROVAL

• We had numerous support specialists - occupational therapists (OT), physical therapists (PT), a school aid, pediatrician, etc. - write letters stating why AJ needed this chair and how it would help him on a daily basis. We had five letters total - enough to give them facts and reason, but not too much to overwhelm them. The key words are "medically necessary."

• We also provided the insurance company with facts about FOP. We have learned that people don't know enough about FOP, so they don't understand the circumstances around why you need the equipment. The more they know, the more likely they are to do something to help.

• Then I called the insurance company… I asked to speak with the HIPAA (Health Insurance Portability and Accountability Act of 1996) Compliance/Privacy Officer. I asked them for the names, as well as the credentials, of every person accessing AJ's record. By law you have the right to that information. If we would have had to file a second appeal it’s important to know who reviewed the first appeal and if they have the medical background to make a qualified decision for an FOP patient.

• I have learned the insurance company will often (but not always) reverse the decision very quickly rather than admitting that the committee is made of non-medical employees who are looking at "criteria words" when they decide to deny care and equipment. Even in the rare case the decision is made by medical personnel, it is unlikely that the decision was made by a board certified doctor in that specialty; of course they don't want you to know this.

• I also requested the appeal in person. It was recommended to us to bring AJ with us, bringing him face-to-face with the decision makers was something very seldom done, but worth it. (We didn't need do this, but were ready if we needed to.)

• Insurance companies don't want your opinions or your emotions—they want facts. Language like this example is most effective: “Due to FOP, this wheelchair will make his/her condition more manageable and ultimately help reduce the overall costs of treating his/her worsening condition. Finally, with so few cases of the disease in the USA and worldwide, we cannot see how a clinical determination of denial could be reached when it is likely your first-level appeal processes could never have contemplated the unique issues related to his/her condition or the disorder.”

• In the end the insurance company needs to know that this equipment will not only help to improve the patient’s quality of life, but also will hopefully lower the amount of time they will need to be seen by specialists, spend in the hospital, etc. 

While this example was used by our family to get a wheelchair approved for AJ, these steps could be applied to other medical equipment, medicine, etc.