Ryan's Story by Pat Fero
After my son Casey died on July 4, 2005, I totally discontinued taking calls from families because I did not want parents to perceive that the future of their children with CFS might be this devastating.
However, a North Carolina mom, Lisa, did call me with condolences and questions about accessing better medical care for her son Ryan.
I want to tell you a bit about Ryan, a child I have been following since he was 12.
Ryan was a soccer player who suddenly became too ill to stand. He was in programs for gifted students and excelled in school. Ryan is now 15. Mom and Dad have covered the North Carolina MD's, taken this kid out of state, sought help through Senator Dole's office, and, after numerous complaints against the school district for lack of accommodations, decided to home school.
Ryan has severe dysautonomia. He also has a tic disorder that started after a reaction to a medication. Ryan has a diagnosis of CFS. He is very weak, cannot go to school, has trouble with numbers and reading and sometimes just gets "stuck." Lisa says that when Ryan is "stuck," he literally stops and does not talk. He cannot process information. He needs help to move.
Ryan is often too weak to use a regular wheel chair. Insurance is denying the motorized wheel chair prescribed by an MD, and fitted for Ryan by a medical supply company that originally had a work order *from* the insurance company to go to the home and fit a special chair. Why would that happen?
Once the company fit Ryan and the chair was made, the MD in charge dropped him as a patient. Another MD took over, a specialist, who signed off on the final order form and continues to advocate for the wheelchair. The insurance company sent a Physical Therapist to again determine medical necessity. Now, the medical supply company says that the insurance company is requiring more paperwork. I think that the family insurance company appears to have red flagged his medical care and is questioning everything. Ryan's wheelchair sits in a warehouse in Charlotte, North Carolina.
Ryan has not had a primary care MD since April. The mom and dad are right on the front line to get everything they can to help Ryan, but system and system has closed the door. Most recently, social services has an allegation against the parents, apparently from an MD. Lisa opened her home for the social worker, wanted an advocate there and a copy of the allegations (not the source, but nature). The county insists that they do not have to reveal the allegations and can, without a release, procure Ryan's medical records since birth.
Lisa and her husband Rod, with help from friends and family, have hired an attorney to deal with social services. I am sorry that the family has to go through this invasion, but I am not as concerned about this as I am about other issues. Lisa is a meticulous record keeper and being a social worker herself, she knows her way around the system.
What I am concerned about is the bias, almost reactionary behaviors, perpetrated on this family that started when Ryan got the CFS diagnosis. 4 years ago, I told Lisa to avoid the CFS diagnosis, as it would go poorly for Ryan. Now in 2007, the institutional bias over CFS has the family looking at what I consider medical malpractice and discrimination based on illness. This is familiar to all of us.
Two things are important right now. Would you go to the website that Lisa just set up, take a look, and then e-mail Lisa words of encouragement? A show of support says, HEY, we are watching this storm! Furthermore, Lisa is well and CAN speak for the attempts to make Ryan disappear because she has all the documentation one could ask for to make her case. I think, with support, Ryan's story could help all of us. Lisa tells me that no one should have to endure what her family has for the last 4 years. http://parentsagainstmedicalabuse.com/
Secondly, Ryan needs to get his wheel chair. Lisa might be open to some sort of insurance company action or a petition to tell this nationally known company that it might be in their best interests to pay for the chair. It is just plain stupid to have the equipment sitting in a warehouse when it was designed specifically for Ryan. I am not able at this time to spend more hours working with the family, and my expertise is limited. However, a combined effort from people with CFS who understand these issues would be most appreciated.