My daughter, Elizabeth, was diagnosed with spastic Diplegia Cerebral Palsy when she was about a year old, she is 14 now. It took several years, and many tears shed, before Elizabeth was finally able to walk with the aid of a walker, now we are working towards removing the walker. After countless hours of physical therapy and numerous surgeries, we are making heartbreakingly slow progress towards an ultimate goal of seeing Elizabeth walk with little or no assistance. Hard work has become a way of life for Elizabeth, she does not relax, everything is a struggle but she also does not give up and she never loses hope. She and I have met wonderful people, learning from them so we would be able to continue the therapy even without their help. Physical therapy and oral medications can only do so much, and we eventually realized that her condition was degrading; surgery became our only option.
Elizabeth’s muscles began tightening and contracting, she was hunched over, couldn’t straighten her legs, and was holding herself up with her arms, which was starting to hurt her wrists and hands. I had heard about Dr. T.S. Park in St. Louis, MO. He does a surgery called Selective Dorsal Rhizotomy (SDR). The surgeon goes in to the spine, identifies the nerves that are sending the wrong message to the legs and cuts them. After a great deal of research, we decided that the benefit to Elizabeth far outweighed the risk and that this was Elizabeth’s best option. In addition to the Selective Dorsal Rhizotomy, Elizabeth would have her tendons lengthened through a minimally invasive procedure called Percutaneous Myofasial Tendon Lengthening (PERCS). The two surgeries were done in June, 2012. Kansas Medical paid for both of these surgeries, both done in Missouri.
We saw Dr. Park at the 4-month follow-up, where he instructed us to have physical therapy 3 to 5 times a week with the number of visits slowly reducing over a long period. Dr. Park expects Elizabeth to be able to walk with the aid of canes and possibly even be able to walk independently. He reiterated that he would want to see her again at the 12 month follow-up.
Elizabeth should still be getting therapy 3 times a week but Sunflower decreased it to twice a week until December 2014; at that time, authorization will be revoked and we will have to reapply. Elizabeth’s therapist made it her mission to get approval for the last 6 months of therapy, we don’t have high hopes of being approved for more. I go to all of Elizabeth’s therapy appointments so that I can learn how to work with her, I have gone to garage sales and bought exercise equipment so that we can try to replicate her exercises at home; all because I know Sunflower doesn’t care about my little girl and I will have to be able to provide the care she needs at home. We continue to work with our therapists for the short time we have so that Elizabeth doesn’t regress.
Per my follow-up instructions, I scheduled an appointment for Elizabeth with Dr. Park and Dr. Dobbs for March 2014; both appointments were approved by Sunflower. Unfortunately, Dr. Dobbs had to cancel so we rescheduled for April 2014. Since it is a 9 hour drive for us we contacted Dr. Park’s office to reschedule to match our new appointment date with Dr. Dobbs. The approval from Sunflower was good for past the new date but both doctor’s offices decided to resubmit to be safe; Sunflower approved the new appointments as well.
I got approvals for gas, the hotel expense, and meals for Elizabeth and myself. I had to arrange the hotel in advance, and I got everything set-up and ready for Elizabeth’s appointment and confirmed with the doctor’s offices the Thursday before the appointment. The Friday before Elizabeth’s Monday appointment I received a call at 4:30pm from a woman named Laura, a Sunflower employee. Laura informed me that they had cancelled my appointments and that they were no longer approved. Laura could not give me any reasons. In July I was meeting with Elizabeth’s care coordinator from Sunflower who told me that Laura had called me late in the day so that there would be nothing my doctors or I could do to resolve the issue. I was shocked at the lengths these people would go to deny a little girl of her medical care.
Laura called me again few days later and gave me a phone number she said I was to call and set up an appointment for Elizabeth’s follow-up care. When I asked her who is was she said she wasn’t allowed to tell me. I called the number, it was a scheduler at Children’s Mercy in Kansas City, MO. That woman said they do not have any doctors that perform PERCS because “it isn’t a good surgery because it doesn’t work” and that they do not have any doctors that perform Selective Dorsal Rhizotomy. I asked Elizabeth’s pediatrician, Elizabeth’s therapists, and other therapists if they have ever had patients who have had Selective Dorsal Rhizotomy or PERCS by anyone other than the doctors in St. Louis they said no. I was not able to find any other doctors; Sunflower couldn’t come up with anyone either. Elizabeth needed to go to Dr. Park and Dr. Dobbs; they did the surgeries, they are the only experts.
In May I called Kancare for advice, I was told to ask for a “fair hearing”. I sent my information to the Kancare representative so that she could forward it to the appropriate place. I was later told that I would be having a hearing over the phone and given a date and time. I began to realize that I was going to need legal help. Elizabeth’s HCBS case manager advised me to call the Kansas Disability Center. They agreed to help me and provided a lawyer. On May 28th the state’s attorney asked for additional time to prepare his summary stating a brief continuance will not harm any party. Outrageous, we are talking about a 14-year-old child who cannot walk! The only thing more outrageous and offensive than the state’s comment is that the judge agreed and granted the continuance. Then I received a call from Sunflower telling me that if I agreed to one more appointment and never asked again they would approve it. This offer sounds criminal, my daughter’s wellbeing is what is at stake here, she will have Cerebral Palsy for her entire life, short-term solutions are unacceptable.
I was copied on a letter from the judge in August saying that the state’s attorney indicated that he was hopeful of a reversal of the agency action and this matter was placed on hold until September 12th. A letter came dated September 23rd saying they have placed our case on hold again until October 22nd. Again, we wait while Elizabeth suffers.
We are so disappointed in the state. Elizabeth did not ask for Cerebral Palsy, and she does not ask for handouts. We are not taking advantage, we are not moochers, and we contribute. We pay the taxes that fund Sunflower, we abide by the law, and we love our children. As a society, the majority agreed to help those in need by creating programs like sunflower. Sunflower is a service that should exist to help people like us and yet they will do everything they can to deny people the basic medical care they need. It is deplorable to think that Sunflower is such a heartless service and they are deciding my daughter’s fate. The idea that a judge would cast aside a child’s wellbeing and allow her to go without medical care further shows that the state is not capable of moral thought.
Months go by; Elizabeth waits, struggles, and perseveres. Without medical care she will become contorted, she will start to hurt more, and her hope will start to fade. Faith in the system is no longer a variable for us; the system does not work because the people involved are doing everything they can to make it not work. The disadvantages that Elizabeth faces go far beyond mobility; she is ridiculed, stared at, harassed, and embarrassed on a daily basis; far beyond what most people have to deal with. Governments exist for the people; Elizabeth is one of those people and this government has failed her. Sunflower’s actions are criminal, dishonest, underhanded, heartless, and amoral; luckily, no matter what, my daughter does not behave this way.
So now we wait while the state does nothing, judges blindly allow continuances, drag this whole thing out. I guess they must be hoping that I will give up; they can hope all they want, my love for my child is far greater than their love of money.