There has been a lot written about CalOptima, OC's name for Medi-Cal, and most of it has been negative. I am writing today about what CalOptima has done for my family and how it has impacted our lives.
My name is Arlyn Buck, a retired County of Orange employee. My daughter, Lillie, was diagnosed with Type 1 Diabetes in 2004 at the age of 18. She was covered under my employer's insurance until she turned 23. She then transitioned into the old County benefit for low income adults, MSI, for a couple of years until Health Care Reform took effect and she was able to return to my insurance for another year until she turned 26.
As soon as she turned 26, she ended up on MSI again which was a barebones type of coverage and hardly took care of her needs. I was paying out of pocket for a lot of her medicines and it was hard to find doctors who accepted the program. This resulted in a lot of emergency rooms visits as her condition worsened. She was diagnosed with a very painful and debilitating condition known as Gastroparesis. She was in and out of the hospital so much that people thought I worked there. We had been told that she might need a pacemaker placed in her intestinal tract to relieve her symptoms.
In 2014, she became eligible for Medi-Cal/CalOptima and her life was changed. She was finally getting the necessary medications and care from specialists. She was also placed on an insulin pump that kept her from going into DKA, Diabetic Keto Acidosis, our financial situation improved a little as I no longer had to pay a few hundred dollars each month for medicine, and her condition improved somewhat. She was still in and out of the hospital every few days due to the Gastroparesis.
Fast forward to Labor Day, September 7, 2015, I was caring for my father who was very ill in Guatemala. It was my last day with him and I was scheduled to fly to New Jersey where I had been staying with my daughter and son-in-law. Lillie had been staying with her older sister at home in La Habra. I received an inbox message on Facebook asking me to call home, there was an emergency, and I needed to make some decisions. Lillie had been rushed to the hospital and had gone into cardiac arrest, her brain was deprived of oxygen for eight minutes. Her sister and my brother rushed to the hospital while I contacted the airlines to change my flight so I can rush to California. I ended up flying to New Jersey and then to California.
I finally saw my daughter, she was hooked up to machines and unresponsive. I was given very little hope that she would live and if she did she would not be able to live a normal life. Her MRI showed a lot of damage to her brain. She was in that state for at least a week or more. Friends, family, and medical staff came to her room to pray and say their final words to her. I began to plan a memorial service and secretly praying that she live. Lillie woke up from her twilight. Once again we were reminded that she would be severely disabled and would need care 24 hours a day.
Lillie was moved out of ICU and a suggestion was made to move her to acute rehabilitation in the hospital for three weeks. At first, CalOptima denied the request so I contacted a case manager that had worked with my daughter in the past. I also reached out to Supervisor Todd Spitzer, an old friend and mentor, he kept in contact with me, offered to assist if I needed him, and offered encouraging words. The request was eventually approved and Lillie started to show remarkable progress. So much so that a request for a specialized wheel chair was cancelled.
I continued to communicate with the CalOptima case manger and she would call me almost daily to check up on us. She was there to help me navigate the sea of red tape and jump through every hurdle to get the necessary equipment and support for my daughter to have a normal life. Thanks to their willingness to help, Lillie is walking, talking, and living life to the fullest.
It has been a little over seven months since that fateful day and Lillie continues to make progress. We still have a very long and hard road ahead of us but I know that we will be able to make all of our goals with the help of everyone involved. This progress would not have been successful without the help of the great doctors, nurses, and support staff at St. Jude Hospital, our family, friends, Supervisor Todd Spitzer, the Gastroparesis support groups on social media, CalOptima staff, and most importantly, Sheila and Roseanne at CalOptima.
I realize that our case is unique and that not everyone has the same experience or success in getting the benefits needed for their family member. I have learned that we must be our own advocates and that it requires a lot of patience and stamina to navigate the bureaucracy. We still have to keep in mind that the staff at CalOptima are doing their job and following the rules given to them. My opinion is that if we don't like the rules, we must find a way to change them. The Federal, State, and County governments make the rules and we need to let them know what our needs are.
Arlyn Buck, mother and advocate for Lillie Buck.
Voice of OC is interested in hearing different perspectives and voices. If you want to weigh in on this issue please contact Voice of OC Involvement Editor Theresa Sears at TSears@voiceofoc.org