“Reading should not be presented to children as a chore or a duty. It should be offered to them as a precious gift." Kate DiCamillo
Friday, March 30, 2018
SLICE #30- A very troubling morning
About two years ago, Zay started exhibiting some pretty disturbing symptoms. He was hospitalized two different times over the course of a year, and finally diagnosed with serious mental health condition. The good news is that it's treatable with an injection which he has to have once every three months. The bad news is that if he doesn't have the injection, he will wind up in the hospital again. And each time he relapses, it will be more serious, and the return to normal will be more tenuous.
Last Friday, Zay was supposed to have his injection. He took time off work and went to take care of it. The nurse at the clinic told him he couldn't have the shot because his Medicaid had been cancelled. He needed to take care of that before they could give him the injection.
I was leaving work when Zay called to tell me what had happened. His solution was to do nothing. "I'm feeling ok," he said. "I just won't take the shot." I freaked out a little. I knew that he was feeling ok because he was taking medication, and that if it wore off, he would be right back at square one, with another hospitalization.
I hung up, and immediately called Megan, his case worker, who is pretty young and pretty inexperienced. She told me that Zay is an adult and that she would need to talk to him. I did get her to tell me that the shot would last two more weeks, so that we would be ok for a little longer. She and Zay had agreed that he would go to the Medicaid office on Monday and take care of it. I doubted that he would be able to do that on his own, but as she said, it was really none of my business.
On Monday, Zay went into work late again. This time, he was trying to go to the Medicaid office. The one closest to our house told him he would have to wait over two hours. He didn't want to miss that much work, so he left. He called Megan, who gave him a phone number to try.
All week I was on pins and needles. Zay needed his shot and we were running out of time. Finally, on Wednesday night, he gave me the phone number. "Every time I call," he says, "they put you on hold and you just wait and wait and wait. I can't do that at work, I'll get in trouble." I told him that I would try to call.
On Thursday morning, I got through to Medicaid, after holding for almost an hour. Courtney, the woman I talked to, had to first get permission from Zay to talk to me. Luckily, he answered his phone right away. Courtney thought that Zay's Medicaid had been cancelled because he makes too much money. She said we would have to go to the Medicaid office, where they would either reinstate his insurance, or they would offer us other options. She said if we went at 8:00 one morning, the wait shouldn't be too long. Courtney also said it would take up to two weeks to reinstate any kind of insurance.
After that, I called Megan, the caseworker again. Megan still couldn't talk to me. Zay talked to her, but then couldn't remember what she said, so that he could tell me. I had Zay do a three way call, so that we could all be a part of the conversation, without violating any of his rights. I explained the insurance situation and she said our only option would be to pay out of pocket. She told me it would be $1000. I swallowed hard and said I could take that out of my savings account. She also said that the Mental Health Center would not do anything for him unless we had some kind of proof that we were trying to straighten out the insurance.
An hour later, she called back and said she had been mistaken, that the shot would be $2700-$3000. Because it was so expensive, she had asked if there was an alternative that they could use, just this time. The doctor said that there was, and that it would be free, but that it would only last one month. Megan told us to come in to get that shot tomorrow. She said we could also talk to the doctor, if we wanted to.
This morning, Zay missed yet another half day of work. We were at the Medicaid office before they opened at 8. We sat there for almost two hours, watching people come and go, and Zay checking his watch every two minutes, before a woman finally came out and said Zay is no longer eligible for Medicaid because he makes too much money. He would have to apply for another kind of insurance, but he couldn't do that until Monday, because the system was down and she had to release his case.
From the Medicaid office, we went to get Zay's shot, at an office on the other side of town. Last night he said, "I want you to go with me, because I want you to see what I go through every time." This time was no different. Zay went in to get his shot while I sat in the waiting room. Almost immediately, Zay called. He wanted me to come in and explain the situation to the nurse. She tried to tell me the shot couldn't happen today because the doctor wasn't there to write the order. I couldn't reach Megan to find out who she had talked to the day before. Finally after the nurse saw that I wouldn't back down, and after a little help from a friendly receptionist who hunted down a doctor, Zay had his shot.
Two hours later, I can't stop thinking about this whole situation. What is wrong with our health care system, particularly for people with mental health issues, who probably can't take care of themselves? Why aren't the caseworkers who deal with my son more proactive? Why would the system prefer to have a patient hospitalized, maybe for as long as a month, rather than just give him a $1000 shot, insurance or not? Why isn't Medicaid easier to access and understand? What about people like Zay who don't have people like me? Who takes care of those people?
A really troubling morning…
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I'm so sorry that you had to deal with all that, Carol. Insurance can be SO SO frustrating and short-sighted and expensive and so many other things. Good that Zay has you, but yes, what DOES happen to other people who don't have people who advocate for them and CAN take the time to take care of things. It's a troubling system to say the least.
I know what happens to the ones who don't have an advocate for them, they get lost. What a horrendous ordeal for you and for your son. I know how frustrating it is when the caseworker can't talk to you because of privacy issues. The whole medical care issue is such a disaster. I hope the knots you've run into become untangled, but I imagine there is very little hope for that happening.
It sounds like this is more than a troubling morning, but troubles you are helping Zay deal with on a daily basis. I hope that writing helped you to release some of the weight of this ordeal.
He is so lucky to have you. This sounds like it is more than a frustrating morning and can affect your life often. Good luck to you and your son in the future.
I was sad to hear about your experience. It seems so unfair. Something has to change. I can sense the frustration, the worry, and the love in your post. I hope things work out for Zay and keep being the strong support you are for him.
Something needs to change, but under our current administration, it's not likely. Such a frustrating system. In spite of trying your best, there were roadblocks every step of the way. I hope Zay appreciates you and that the two of you can work out the kinks soon. What a difficult situation.
Oh, the frustration! It's maddening! So sorry you are dealing with this but I know Zay appreciates your assistance. I pray everything is worked out and he gets the shots he needs.
Wow. This is exactly what is wrong with healthcare in our country. Zay is so lucky to have you, and like you, I fear for those like him who don't have a you to help! Thank you for sharing this vulnerable, frustrating slice of your life!
I want to shake my phone in frustration.
I am so sorry you and your son go through this.
I have been the overseer of care for my parents for many years now, and the broken system never fails to frustrate and disappoint in new ways.
I face those struggles in getting my children an appropriate education. ADD that cannot be medicated for other health reasons.
Your slice absolutely conveys the total frustration of just trying to HELP and make things WORK. Nailed it.
How lucky the timing of your spring break. It would have been nearly impossible to accomplish all of that with a full workday. It's unfortunate that Zay had to miss so much work to resolve the issue. Like you, it leaves me with a million questions and is quite troubling. I'm glad you have the issue settled for now, and hope there's a resolution for the future quickly.
I read this yesterday and came back today. The broken system that hinders those trying hard to do the right thing, work, address health issues... it is frustrating even to comment on. I am glad you were available to help your son and hope a better solution can be found so it is not a recurring issue. Why can’t a country with all the resources we have do a better job at healthcare? Thank you for the support you offer your son and for caring about others who need help.
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