Standard of Care
In light of recent coverage in the media regarding healthcare and insurance companies, I thought our situation may be of some interest. Mostly, as a concerned parent, and registered nurse, I think it is important that all consumers be aware that an insurance company does not have to provide standard of care for its subscribers. I considered myself fairly knowledgeable, yet we are still facing a less than expected outcome for our daughter.
Our 9-year old daughter, Olivia, has moderate cerebral palsy. She is lively, fun, and most of the time, does not believe that she is different from anyone else. Olivia is ambulatory and has been relatively healthy. She enjoys activities that her peers do, including dancing, PE, gymnastics, and swimming. We are so blessed to have her in our lives.
Like many children with ambulatory spastic diplegia, Olivia's tightening of her leg muscles began to affect the growth of her bones. Without proper surgical intervention, Olivia may very well have lost the ability to walk and run in her future.
After much consideration, we consented to our surgeon's proposed solution: bilateral femoral osteotomy. In English: both of Olivia's thigh bones would be broken in two, repositioned, plated/screwed back together, and muscles manipulated. The goal of this surgery is to improve positioning of a person's muscles and legs to improve gait and promote healthy bone maturation.
Since this surgery is standard medical care for the external rotation of Olivia's legs, we did not anticipate any difficulties with our insurance coverage. Our physician office notified United Health Care of the intended surgical plans. I, too, called to verify coverage and notify them of the plans. We received, in writing, that UHC was aware of the surgery and it was a covered benefit for Olivia.
Olivia had surgery March 30, 2007 at St. John's. She did well post-operatively. She left the hospital as planned and went home to recuperate. Physical Therapy Rehabilitation is critical to the success of this procedure. We began as prescribed. Olivia made wonderful progress... working really hard!
The trouble began when UHC's policy said Olivia could only have 20 PT visits; she really needed more like 80 visits. Other folks have had similar situations, and with the proper documentation, exceptions have been made. (I personally know a child who had the same surgery, also has UHC with the same contracted 20 PT visits per year, but was given 100 for the first year, and able to increase if needed!)
Olivia should have been going to PT 3 times per week, intensively, and been finished with rehab in 6 months. She did her home program faithfully and we thought all was going to turn out well. But United Health Care denied our request for review-- FOUR TIMES. Sending the same form letter repeatedly. Olivia's physician and his staff attempted to call, asking for "peer review" of the case, as we were advised to do by an UHC employee. They were put on hold for hours at a time, as was I. No answer other than the form letter was ever provided. Our physician was not allowed to speak with another physician regarding the standard of care for this procedure.
Healthcare really does need reform. Admittedly, so many folks have abused the system, especially concerning out-patient therapies. As a nurse, I have witnessed this first hand. Often, Olivia's diagnosis of cerebral palsy sets off alarm bells. We were not expecting her to receive care that was above and beyond what was needed to make her as strong as she was before surgery. But since we had to private pay for physical therapy, even with financial assistance from St. John's, she did not receive what she needed. She is still in rehab, we are still private paying for her care the best that we can, and she is not back to her pre-surgical abilities.
As I face the prospect of her potential future, I am afraid. She will need surgery in the near future to remove the hardware placed during her March surgery. Will she ever regain her strength? We cannot afford (financially and otherwise) to let Olivia down. She is a remarkable girl, full of spirit and ambition. She dreams of being a pediatrician that helps other children with cerebral palsy.
To be frank: Olivia was treated unfairly, perhaps even discriminated against because of her medical condition. Parents, and consumers need to be aware that insurance companies are not required to provide the standard of care.