Over the past few years since I entered adulthood, I have endured great hardship obtaining coverage for my prosthetic legs. I was a patient at Shriners Hospital for Crippled Children throughout my childhood. Since this hospital is a nonprofit organization, my amputation, prosthetic legs, and prosthetic needs were always covered. I loved this hospital because it was embedded with loving and supportive individuals. Well-renowned doctors, such as Dr. Setoguchi, helped my parents through the coping process, while also offering guidance.
Unfortunately, Shriners Hospital only covers minors. Once patients turn 18, they are discharged. When I was about 17 ½, my mother took me to Kaiser Permanente and we made a request for new prosthetic legs. We were told that I would be covered indefinitely, since I was born there and I had had Kaiser health insurance throughout my life – there were records of my condition.
Months later, my mother and I received a denial letter in the mail. We were both very shocked; we were sure that I would be accepted. We were told that we could appeal the denial, so we did. We were denied again. The only reason given for the denial was that my mother did not have the Prosthetic & Orthotic benefit in her insurance plan. I called Kaiser, and I was told that I could not have that benefit unless I had my own insurance plan. Being a college student, it is not possible to find a job that would give me such a benefit. Also, my mother cannot change her insurance plan because she is a self-employed real estate agent. Her company does not provide health insurance. Additionally, my father passed away when I was younger, so I did not have the option of being under another insurance. I felt extremely helpless.
Shriners Hospital provided me with my last pair of prosthetic legs in November 2012, just before I was discharged. I was told that my future prosthetic legs would be covered by Kaiser, California Children’s Services, or MediCal. My mother and I then went to California Children’s Services to reopen my case. CCS is a program that supports disabled children up until the age of 21. I showed them my denial letter, but they said since that it was in 2011, I needed to put in another request and bring them a denial letter dated 2012. I called Kaiser and found that I could not get an appointment for another couple of months. I was very upset – I needed the letter as soon as possible, and instead I was forced to wait longer. I took the appointment and got the denial letter, but CCS continued to make the process difficult. As a result, I terminated my private health insurance plan in December 2012.
Afterwards, I applied for MediCal. I was denied. How could MediCal deny a disabled person? I found this unbelievable. We were so desperate that my mom had to hire a private representative just to get me MediCal, a basic service that many people easily get. My social services representative had to apply for me four times until I was finally accepted.
I found a place in Santa Monica that I wanted to be treated in. I really liked everyone there; I felt that they were very personable and understanding of the mess that I was in. I continued to follow up with CCS and MediCal.
CCS tried referring me to another vendor, although I specifically told them which vendor I wanted. I called the vendor I was referred to, and I was informed that they would not touch my current prosthetic legs, since they were made by another company (which was Shriners). I was devastated. Something felt wrong with my legs, and I told them that it was an emergency and that I needed urgent care. They told me that they could not do anything about it. I hung up in tears.
That same day, I had an accident with my prosthetic legs at school. It left me unable to walk or drive. I felt helpless with no coverage. CCS still had not given me the authorization for new legs, the vendor they chose said that they would not touch my current legs, and Shriners said that they could not do anything about it since I was discharged. Thankfully, the vendor that I had wanted to work with fixed them free of charge.
Soon after this incident, I found out that the Department of Rehabilitation could cover my prosthetic legs. DOR is a program that helps disabled people get employed. I contacted my DOR counselor soon after that, and we made the request for the C-leg, which is a computerized leg. MediCal/CCS denied my request for these legs. Months later, I found that my MediCal case was terminated for no reason.
Several months later, I met with my DOR counselor and she told me that I was accepted. I was so happy and excited. I needed new legs as soon as possible, so my prosthetists started working on them before the authorization was mailed – they wanted to save time for me. I thought that all my problems were finally over. However, I received an email from my DOR counselor saying that they needed additional documents from me. I was extremely devastated and upset. They told me that I was accepted, and then went back on what they said. I had to find a doctor and obtain doctor’s notes, which was inconvenient for me since I did not even have a doctor at the time. I was informed that they are looking for other bids. I did not wish to start my prosthetic legs all over with another vendor. I had already started my new ones with a vendor that I felt comfortable with.
This situation not only put distress in my life, but also took up a lot of my time and effort. I had had my former legs for almost two years now, so they did not fit me anymore. I got taller and had lost around 30 pounds since then as well. I had severe breakdown of the skin at the top of my legs, where the prosthetic leg brims are. It pained me to wear them for too long. I could not even sit comfortably in chairs anymore. I had to sit all the way on the edge of the chair so that the brim would not dig into my broken down skin. Sometimes my cuts bled and scarred as well. This was emotionally devastating because I felt helpless. It upset my mom even more to see her daughter in pain, and she could not do anything about it either.
I felt extremely vulnerable, so I contacted my local Congress representatives. They responded to me within less than a week. They pushed my case as a priority in DOR, and soon after I was finally given authorization to get new prosthetic legs.