We have been jumping through hoops over the past month (+) dealing with our insurance company. They denied medication that Casey needed, then soon after that they denied her nursing care. I was beyond stressed about the nursing care. I won’t go into too many details but it basically came down to a few things. We only use 32 hours a week instead of 100+ like some families. This sent up a flag at the insurance company saying if we don’t need it around the clock we must not really need it at all. So frustrating! We want to be Casey’s parents. We want to raise her. We took 32 as the smallest number of hours where we felt she would still get the care she needs as well as time with us. There were a few other really silly things too. Because Casey is not text book or doesn’t have the exact equipment they look for they put her in a non-skilled need. UGH!!! We need VERY skilled. Her nurse now actually said she has worked with many patients, even those with 100+ hours and that Casey, she feels, requires the most skilled care. It’s just so hard to deal with insurance when they don’t actually know Casey and are going on paperwork and generic guidelines alone. Luckily after many hours on the phone with insurance, doctors, Tim’s benefit’s department at work, etc we finally got the issue resolved and Casey has nursing.
While we were working out the insurance issues we also got Casey onto all of the interest lists (Medicaid Waivers) that she qualifies for. Most of these are many years on a waiting list. At least she is on them now. There is one, MDCP, that she was able to get on pretty quickly due to severity. We will actually have her in that program starting 4/29/09. This will be great. MDCP will help cover additional nursing hours, they will help cover equipment, therapies, and a few other items that will really come in handy.
The last step of getting into MDCP requires a 24 hour stay in a nursing center. We scheduled that this morning. We will stay over the night of the 28th then when we check out Casey is in the program. Even though it is a nursing home, we are calling it a vacation. Tim and I will stay with Casey. It will sort of be like a hotel stay. We will still do all of Casey’s care. Ever 2 hours a nurse comes in to see how we are, but other than that Tim and I are doing what we usually do.
Casey had her first water therapy (sort of) yesterday. She went to the therapy center and met her therapist. She was really good, she didn’t complain at all and even bent a little in her legs and arms for Margaret (the PT). After they got to know each other we all went to check out the pool. Casey got to put her feet in. She loves the water. Next week is her birthday and we have lots going on so we will start the following week with weekly visits with Margaret. I can’t wait to see Casey in the pool.
This morning I met with Casey’s team in the school district as well as her current case manager/OT with Easter Seals. We had what is called an ARD meeting. It actually went really well. I was really stressing about it and very nervous/anxious about the outcome. I was very happy to hear that it will pretty much be continued as is. The therapists will change, but the frequency and types of therapies will remain the same. The goals and plans are similar. The new goals are written more directed at education where before it was more just about comfort. She turns three on Thursday and the new therapists pick up right away. We will work with them until school is out for summer. Casey will continue with Margaret during the summer but not with her home therapies. Then when school starts back up in August so will home therapy. She will keep going to see Margaret after school starts back too. The more PT for Casey the better.
We have family coming in for Casey’s birthday next week. We have a few more details to finish up before then. This will be Tim’s mom’s first visit to the new house (yes, that is the correct punctuation- double possive). We are having a small party with Casey’s family and caregivers here at the house. I’m sure she will have a good time. I will post lost of birthday pics.
We still have a couple of busy weeks ahead, but things are finally slowing down. I am looking forward to May when I think we can rest a little. I hope everyone is doing well.