A few months ago I got a letter from my insurance company that made my heart jump out of my chest. It's purpose was to tell us that the hospital that Emily's goes to for her cornea surgery and care, was no longer a participating hospital. I went into panic mode...her surgery was coming up soon, so now what? Out of network benefits? What was our deductible? Fighting with the insurance company about which procedure code was covered and which ones weren't? I didn't need this, not now....
That letter lead to a conversation during one of Emily's therapy sessions. It was actually an annual review meeting with Linda her therapist, Andrea the early intervention district coordinator and Terri from the Commission for the Blind. I had mentioned the letter and questioned what services might be out there for us to utilize in a situation like this. There was a suggestion that maybe a social worker might be helpful to us, maybe she could help us tap into local or state resources.
A month or so later, I met with Julie who was assigned to Emily's case. At our first meeting I was encouraged by what might be out there for us. I had already applied back in January of 2008 for SSI (Supplemental Security Income) but we didn't qualify based on income. Everyone I talk to can't understand how we wouldn't have qualified because of the severity of Emily's condition, but apparently you have to basically be living in a cardboard box in order for the state to even look at your case. I can't remember what the income level was for a family of 5 but we were above it...that doesn't mean we can afford hospital bills, prescriptions and various other expenses that we incur because of Emily's condition. Who gets to decide that if you make X amount of dollars a year, you can afford to have an ill or disabled child? ? ? I think that is a bunch of crap, if the government can bail out all these major corporations because they screwed up their business and handled their money poorly, why can't they help a small family pay for their 18 month old's Glaucoma medication, or transplant surgery to enable her to see? I guess we made too much money and should budget better...
Julie had given me hope that she could come up with something we would be able to utilize, but at our next meeting she had nothing. She kept coming up with possible parent support groups, local clubs that might offer medical equipment if needed down the road and random other stuff. The support groups and local club information was great, but that wasn't what we needed. We needed financial help and she wasn't finding any.
At our next meeting, she once again really didn't have any information for me about financial help. She called Terri and spoke to her about a few things related to the commission, but Terri said that alot of the financial help and equipment related expenses that they were able to help provide families with in the past was not available anymore, mostly because of cutbacks in the program and the economy. The only 2 questions that we got answers to were ones that I asked...1 - how does the commission follow Emily through into school and 2 - what if Emily needed glasses, would they still be able to help provide them? I learned that once she turns 2 (which is 4 months from today) we should contact the school district and start the testing and evaluation process to qualify her for preschool....PRESCHOOL? Holy crap...Emily is going to be in preschool next year. WHAT? No, this can't be...this is my baby, my little girl who just started walking 2 months ago, I am sooooo not ready to even think about her going to school. But I guess the process takes a while, so she suggested getting her into the system as early as possible. As for the glasses, apparently the commission now works with Lens Crafters and can provide a voucher for one free pair of glasses per year. Good to know now that the place where we got her glasses last year is gone. Hopefully we won't have to worry about that anytime soon, but at least we know it's there in the event that we do.
Ironically the two bits of information that I found helpful were answers to questions I asked as she was walking out the door. Re: Fundraising...how would that work? So many people have asked me about setting up a fundraiser for Emily, but I have no idea how that would work, or even if I would feel comfortable setting it up for her myself. She told me she would get information for me and let me know what she comes up with. The other thing I mentioned was about the ridiculous cost of all of her medications....then all of a sudden she says...oh give me a list of what she's on and we can work with the pharmaceutical companies on subsidizing or eliminating your out out of pocket expenses.
I hope she can come up with something, we are barely keeping our heads above water with these medical expenses.
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