We tried to appeal the denial today. That didn't work. It is so ridiculous that the insurance can do this. When the insurance company called to tell us that we were still denied they asked do you want to have a level 2 appeal? Well let me see? YES!!!! I will never stop fighting. This is just so completely frustrating. I can see why there are so many people out there fighting mental illness that just go completely crazy. If you aren't crazy to start you will be by the time you're done dealing with the insurance company. Hopefully tomorrow Grace's case will go to someone who can help.
We know our time is limited with the insurance paying for Grace's care. We are so grateful for the time they have paid. Unfortunately it is not enough time. The time has come to get creative. We have set up a fund raiser on gofundme.com. In two days we have raised $540.00. We feel so completely loved and blessed. I will add a link in case anyone is interested or able to help. In addition to that I am also hosting a origami owl party. The consultant is a good friend and is going to donate all of her commission to Grace. What a sweet thing for her to do. Again I will post a link for her website. Just be sure if you purchase anything that at checkout in the drop down box you select Grace's fundraiser. Origami owl has some really cute jewelry. I actually ordered a necklace that is a dog tag that says Grace. I can't wait to get it.
http://www.gofundme.com/4ppzx4
http://owlloveyoualways.origamiowl.com/
In addition to these two fund raisers we are going to do a community fund raiser. We are planning a dinner and action in November. We are just starting to plan. We have been working on this since Tuesday and already have a venue to host the dinner as well as donations for the action. Hilton has even donated a free nights stay to auction off. Also any free gifts earned from the Origami Owl party will go into the auction as well. We are hoping for lots of community support. If you are interested in helping us plan this event please contact me. We need lots of help as well as donations to sell at the auction.
I have to say again how loved and blessed we have felt this week. Our blog hits have gone through the roof. I am so grateful the Grace's story is getting out there. I hope we can bring more awareness to these sensitive issues.
for the Love of Grace
My Beautiful Grace
Thursday, October 10, 2013
Wednesday, October 9, 2013
Denied!!!
Grace is officially denied! Just as I thought the insurance has stopped covering today. The Doctor from the insurance company talked to Grace's doctor. After a very long conversation the Doctor from the insurance agreed that Grace needs long term care but says they will not pay for it. It is so completely frustrating. They know she needs help that she can only get at this facility and yet they will not pay. Our insurance has an unlimited benefit for mental health. What a joke, unlimited until they decide they are done I guess.
We are so overwhelmed by this situation. Talking to Grace this past weekend she even said that she doesn't feel ready to come home. She knows that she needs the help. She wants to get better so that she can come home. My biggest fear is if we have to bring her home that she will be home for a short time before she blows up again and ends up back at UNI. Bouncing her around between treatment centers will slow and back slide her progress.
I am so desperate. I'd cry, but then I wouldn't get anything done at all. So I just write and share my feelings will people who are reading this blog. LAst month because I was away I didn't post anything. We had almost 500 hits for the whole month. Today alone we have had over 850. SO please keep doing what you are doing. Please share the blog, repost on Facebook, pinterest, twitter and any where else that you can. I feel like the more Grace's story is heard that we will be able to get her the help she deserves.
I read a story on CNN today about a boy who was able to sneak onto a flight to Las Vegas. In the story the Dad was pleading for help for his son. He said that his family has tried to get the boys bad behavior under control. I felt for this man. I know what it feels like to feel helpless while your child is out of contriol. What made me the most sad was everyone in the comments totally ripping this family and blaming the parents. This was my response.
I have a child with behavior problems and I have done everything I can for her. My child is in a residential treatment center and we are trying to get her help. My husband has a good job with insurance. We were promised an unlimited Mental health benefit. My child is nowhere near ready to come home, but the insurance has decided she is no longer their problem, and has quit paying. If we can't find a way to pay then I have no choice but to bring her home. Her care is over $10,000 a month. Tell me how any one can pay for that? I have two other children who are not acting out, so I don't think I am a bad parent. I have a child with special needs and no way to help her. Don't judge these parents. They are desperate and trying their best to get help. The dad is right, if he spanks his child then everyone will judge him and he will be in trouble. What is this family suppose to do?
I want to share our story because more people need to understand that mental illness is an illness. Behavior problems often fall into this category. Don't judge others, try to help.
Please keep praying for our Grace!!!
Tuesday, October 8, 2013
I'm Back
Sorry I've been MIA. I haven't forgotten to blog I promise. I went away for a few weeks. Some much need rest and relaxation.
The past almost two months have been very much more of the same. Fighting to keep Grace at Hogwarts. At the same time we are seeing a blow up every three weeks with out fail. You would think this would make the insurance say "well lets get past three weeks before we even think of sending her home". Nope, every time just before we know she is going to blow up the insurance tries to stop paying. It is so frustrating. Every time I feel like I can't fight this battle any longer someone helps me find a way to keep going. I am truly very blessed with an amazing support system in my life. I thank all of you for the strength that you give me. Just knowing that people care enough to read this blog is amazing to me.
While I was away on my trip the insurance company quit paying for Grace's care. Not only did they quit paying, they waited to tell us until 6 days later. We couldn't believe that they could do this, but they did. We had been blessed with some finical assistance from family and friends so we made a payment to Hogwarts. At the same time we appealed the denial. Amazingly we won the appeal. From what we have been told, that almost never happens. Thankfully we could keep going. The crazy thing was they denied coverage 5 days after Grace had a massive melt down. It was the worst melt down any of us had seen and we all thought there was no way the insurance could deny coverage after that. Wrong again. Good thing both Dad and I are good at fighting. Now as we are approaching the three week mark again they are telling us this is the end. This system is so broken. In the news everyday you see stories of people who completely lose it and do something that makes us go "what were they thinking" or "Why were they even able to do that"? The answer is because that mental health is so misunderstood. Its tabo and no one wants to talk about it, let alone fix it. Everyday people who are a danger to them selves or to others are released from institutions because it is so expensive and an insurance company can decide their fate. Many people choose to not take their medications and get judged for that. What so many people don't understand is that many of these people are not diagnosed early enough. We are truly very blessed because we are trying to help Grace early on with all of this. The doctor and therapist have said that early intervention is important for Grace to have a happy and successful life. So we fight, and we will keep fighting.
Grace's team is trying to find the right balance of medication and therapy to help Grace. However this is a long and very difficult process. Also a lot of trial and error. They have to constantly watch Grace's levels through blood draws. I can't imagine having her at home and taking her to therapy 3 times a week, and to several doctor's appointments, as well as taking care of everything else in day to day life. Not only that, but Grace is very hard to hold down when she is having a melt down. I wonder if the insurance company will pay for someone to be here with us to help us when she is blowing up? Simply we can't do this on our own right now. The diagnosis that are being discussed right now are Autism, Bi Polar, TBI, and ADHD. Any one of these alone is a lot to handle, but all of these together is too much.
At this point we feel like we are running out of options. We feel like it is not safe to bring Grace home, and we can't afford to keep Grace at Hogwarts. The monthly cost is so scary. I wanted to cancel my trip that i just went on, but it was already paid for before any of this started. Dad and my therapist and many of you told me and supported me in my time away. I am glad I went and I had an amazing time. Really the time of my life. I feel as if I can face all of my reality once again. At this point we feel our only option is to ask for help. We are starting to fund raise to try and keep Grace at Hogwarts as long as the doctors feel she needs this level of care. I will be honest, its about $10,000 per month for her care. We have set up an account on gofundme.com we are also starting to plan a dinner and action event. (more details to come)
We will fight to do what ever we can to Save Grace.
http://www.gofundme.com/4ppzx4
The past almost two months have been very much more of the same. Fighting to keep Grace at Hogwarts. At the same time we are seeing a blow up every three weeks with out fail. You would think this would make the insurance say "well lets get past three weeks before we even think of sending her home". Nope, every time just before we know she is going to blow up the insurance tries to stop paying. It is so frustrating. Every time I feel like I can't fight this battle any longer someone helps me find a way to keep going. I am truly very blessed with an amazing support system in my life. I thank all of you for the strength that you give me. Just knowing that people care enough to read this blog is amazing to me.
While I was away on my trip the insurance company quit paying for Grace's care. Not only did they quit paying, they waited to tell us until 6 days later. We couldn't believe that they could do this, but they did. We had been blessed with some finical assistance from family and friends so we made a payment to Hogwarts. At the same time we appealed the denial. Amazingly we won the appeal. From what we have been told, that almost never happens. Thankfully we could keep going. The crazy thing was they denied coverage 5 days after Grace had a massive melt down. It was the worst melt down any of us had seen and we all thought there was no way the insurance could deny coverage after that. Wrong again. Good thing both Dad and I are good at fighting. Now as we are approaching the three week mark again they are telling us this is the end. This system is so broken. In the news everyday you see stories of people who completely lose it and do something that makes us go "what were they thinking" or "Why were they even able to do that"? The answer is because that mental health is so misunderstood. Its tabo and no one wants to talk about it, let alone fix it. Everyday people who are a danger to them selves or to others are released from institutions because it is so expensive and an insurance company can decide their fate. Many people choose to not take their medications and get judged for that. What so many people don't understand is that many of these people are not diagnosed early enough. We are truly very blessed because we are trying to help Grace early on with all of this. The doctor and therapist have said that early intervention is important for Grace to have a happy and successful life. So we fight, and we will keep fighting.
Grace's team is trying to find the right balance of medication and therapy to help Grace. However this is a long and very difficult process. Also a lot of trial and error. They have to constantly watch Grace's levels through blood draws. I can't imagine having her at home and taking her to therapy 3 times a week, and to several doctor's appointments, as well as taking care of everything else in day to day life. Not only that, but Grace is very hard to hold down when she is having a melt down. I wonder if the insurance company will pay for someone to be here with us to help us when she is blowing up? Simply we can't do this on our own right now. The diagnosis that are being discussed right now are Autism, Bi Polar, TBI, and ADHD. Any one of these alone is a lot to handle, but all of these together is too much.
At this point we feel like we are running out of options. We feel like it is not safe to bring Grace home, and we can't afford to keep Grace at Hogwarts. The monthly cost is so scary. I wanted to cancel my trip that i just went on, but it was already paid for before any of this started. Dad and my therapist and many of you told me and supported me in my time away. I am glad I went and I had an amazing time. Really the time of my life. I feel as if I can face all of my reality once again. At this point we feel our only option is to ask for help. We are starting to fund raise to try and keep Grace at Hogwarts as long as the doctors feel she needs this level of care. I will be honest, its about $10,000 per month for her care. We have set up an account on gofundme.com we are also starting to plan a dinner and action event. (more details to come)
We will fight to do what ever we can to Save Grace.
http://www.gofundme.com/4ppzx4
Wednesday, August 14, 2013
Stop this ride I want to get off...
This roller coaster is more then I feel like I can handle today. I am fighting as hard as I can, but how long can I keep going like this???
So last Friday Grace had her neuro testing done. Now we sit and wait and wait and wait for the results to come back. I talked to the Doctor's assistant today and clarified that Grace dose for sure have a ABI. It is diagnosed for sure. Grace falls into the mild category. Don't let the mild fool you, it is still pretty serious. I am hoping that having an actually diagnosis will help us fight the insurance company.
We found out that Grace is covered for the next week at Hogwarts. However we do know that the insurance is getting very anxious to get her out. Here is my problem. Grace has done really well this past week. That would seem like good news right? Well the insurance thinks one good week means that she is all better and ready to go home. WRONG!!!! Look at the past several months. She is good for a week or two and then completely crashes again. I have started calling all over to several different agencies to look for help. I have called the county and the state. My biggest concern is how do I bring Grace home when I don't feel it is safe to have her here. She doesn't hit at Hogwarts because she knows she will be put in a small locked room by her self. I can't do that at home. Its child abuse if I do it!!! Go figure. Also if she comes home and hurts her brother or sister, then I am in trouble for not protecting them. WHAT AM I SUPPOSE TO DO???? I feel like I am being set up to fail. I am so ready to scream and cry. I want her home, but not until she has had time to get the help she needs. I really feel like I am ranting today. I am so emotionally and physically exhausted from telling Grace's story over and over and over again. It is not getting me anywhere!!! I just hope that someday the right person hears this and has the right answer for all of this. I am just a Mom trying to save my child.
On the plus side we are going to bring Grace home for two nights. This is to see maybe she is more ready than we think she is. We'll see. I pick her up tomorrow night and we take her back on Saturday morning. Here's hoping we all survive. The good thing is, if we have any problems we just take her back to Hogwarts. At least I know there is help there if I need it. I am really excited to have her home. I hope that it goes well. I think we all need a little hope right now. Please pray for us this weekend!!! One of two things will come from this weekend, One she will do great and we will look forward to bringing her home, or Two it will be awful and insurance will agree to keep her at Hogwarts. I guess we don't have much to loose!!!
Sorry for the ranting and rambling. I am just so drained today.
So last Friday Grace had her neuro testing done. Now we sit and wait and wait and wait for the results to come back. I talked to the Doctor's assistant today and clarified that Grace dose for sure have a ABI. It is diagnosed for sure. Grace falls into the mild category. Don't let the mild fool you, it is still pretty serious. I am hoping that having an actually diagnosis will help us fight the insurance company.
We found out that Grace is covered for the next week at Hogwarts. However we do know that the insurance is getting very anxious to get her out. Here is my problem. Grace has done really well this past week. That would seem like good news right? Well the insurance thinks one good week means that she is all better and ready to go home. WRONG!!!! Look at the past several months. She is good for a week or two and then completely crashes again. I have started calling all over to several different agencies to look for help. I have called the county and the state. My biggest concern is how do I bring Grace home when I don't feel it is safe to have her here. She doesn't hit at Hogwarts because she knows she will be put in a small locked room by her self. I can't do that at home. Its child abuse if I do it!!! Go figure. Also if she comes home and hurts her brother or sister, then I am in trouble for not protecting them. WHAT AM I SUPPOSE TO DO???? I feel like I am being set up to fail. I am so ready to scream and cry. I want her home, but not until she has had time to get the help she needs. I really feel like I am ranting today. I am so emotionally and physically exhausted from telling Grace's story over and over and over again. It is not getting me anywhere!!! I just hope that someday the right person hears this and has the right answer for all of this. I am just a Mom trying to save my child.
On the plus side we are going to bring Grace home for two nights. This is to see maybe she is more ready than we think she is. We'll see. I pick her up tomorrow night and we take her back on Saturday morning. Here's hoping we all survive. The good thing is, if we have any problems we just take her back to Hogwarts. At least I know there is help there if I need it. I am really excited to have her home. I hope that it goes well. I think we all need a little hope right now. Please pray for us this weekend!!! One of two things will come from this weekend, One she will do great and we will look forward to bringing her home, or Two it will be awful and insurance will agree to keep her at Hogwarts. I guess we don't have much to loose!!!
Sorry for the ranting and rambling. I am just so drained today.
Tuesday, August 6, 2013
Back on track
Today was a good day. I feel like we are back on track with Grace. Her therapist is back from vacation. I told him he can't go on vacation again. He was gone one week and our whole world just about fell apart. Back one day though and he is back on top of things. I have been trying to schedule the neuropsychological testing for Grace and that has been so difficult. Everyone is scheduled 4 to 6 months out. When I was talking to the insurance company they asked why I was the one doing it. I told them that the staff at Hogwarts told me that I had to do it. She started to wonder why they were paying Hogwarts if I was doing it? She called the school and they got it scheduled for this Friday. I could not believe that they can do it that fast. Happy Day!!!! This should be very helpful in getting the full picture of what we need to do to help Grace. This testing from what I understand is very expensive and insurance usually won't pay for it that easily. Given the option though of paying for residential treatment vs. testing it was a simple choice for them. I was also happy to hear that we won't have to wait weeks for the results. They will have the results by the first part of next week. Finally everything is coming together. I think I am going to sleep much better tonight!!!!
Happy Day!!!
I am feeling very hopeful and happy today. It is a really nice feeling I have to say.
Sunday we were able to go and visit Grace again. We took a completely different approach to this visit. I decided that it was going to be a fun visit. Grace had mentioned that she needed some chap stick and some undershirts. I had bought those to take to her. I decided to get her a few fun things as well. I had talked to a staff member a while back and she mentioned that the girls were really in to word searches right now. I bought Grace several word search books as well as a suduko book, a coloring book, crayons, and markers. My friend came to visit and had bought a toy for Brother and Sister so she asked if she could get Grace another coloring book for me to take with the other things. It was so fun to see Grace's eye light up. She was so happy she said just to get the visit, but the stuff was a really nice bonus. Our visit was actually so fun. Grace was her normal happy self. I hadn't seen her this relaxed and happy in a very long time. We had fun playing a game together and painting her nails. We took so fun pictures together and just laughed as a family. I can't tell you how beautiful it really was. I love the days like Sunday. I want and hope for more of them.
As great as Sunday was that is not what is making me happy today. Yesterday was a crazy busy day filled with many phone calls to many different people. We are trying to get our support system in place so that we can be ready for the day that Grace can come home. I am so excited because between all the people we have talked to we are coming up with a Great plan. My phone calls were to set up her testing, the school district, Home therapy groups, and dance studios. So her is our very basic plan for now. The school district is concerned that Grace coming home and acclimating back to life and school may be too much for her to handle all at once. I have to say that I see their point. So it has been decided that Grace will do 6th grade online from home. This will give us flexibility to schedule her many therapy and doctors appointments. Also if Grace is having a bad morning or a melt down I don't have to stress that she will miss school. The school district will still oversee her studies and do all of the lesson planning. Really that seems so perfect. We are also going to put Grace in a dance class. We haven't decided what style yet, hence all the phone calls. I am starting to feel like I can actually do this. It just takes time to let everything sink in.
The most amazing thing through all of this has been my own research. I have been wondering about the ABI. What does it mean? What is the difference between ABI* and TBI**? What are the symptoms between the two? I found a website that was a great help. Really when I read the site I thought they had just completely described my child. The page a fact sheet about Acquired Brain Injures in Children. There are four main areas of concern. Sensory and Motor, Cognitive, Language and Communication, and Language and Communication. Here is the paragraph that describes Grace perfectly...
I have called and read the article to Grace's therapist and her Pediatrician today and both said, you just described Grace. It is amazing. This helps us understand the why. What we will still have to work on is how to help her overcome it. I know I haven't found a miracle cure, but understanding goes a long way. I am hopeful that this will mean less medication for Grace. I am not a fan of medication. I know there is a time and a place for it. I just want to try everything to avoid it. Here is hoping that we are able to go down a better path to help Grace.
*ABI- Acquired Brain Injury
**TBI- Traumatic Brain Injury
This article explains the difference between the two injuries.http://www.biausa.org/FAQRetrieve.aspx?ID=43913
Sunday we were able to go and visit Grace again. We took a completely different approach to this visit. I decided that it was going to be a fun visit. Grace had mentioned that she needed some chap stick and some undershirts. I had bought those to take to her. I decided to get her a few fun things as well. I had talked to a staff member a while back and she mentioned that the girls were really in to word searches right now. I bought Grace several word search books as well as a suduko book, a coloring book, crayons, and markers. My friend came to visit and had bought a toy for Brother and Sister so she asked if she could get Grace another coloring book for me to take with the other things. It was so fun to see Grace's eye light up. She was so happy she said just to get the visit, but the stuff was a really nice bonus. Our visit was actually so fun. Grace was her normal happy self. I hadn't seen her this relaxed and happy in a very long time. We had fun playing a game together and painting her nails. We took so fun pictures together and just laughed as a family. I can't tell you how beautiful it really was. I love the days like Sunday. I want and hope for more of them.
As great as Sunday was that is not what is making me happy today. Yesterday was a crazy busy day filled with many phone calls to many different people. We are trying to get our support system in place so that we can be ready for the day that Grace can come home. I am so excited because between all the people we have talked to we are coming up with a Great plan. My phone calls were to set up her testing, the school district, Home therapy groups, and dance studios. So her is our very basic plan for now. The school district is concerned that Grace coming home and acclimating back to life and school may be too much for her to handle all at once. I have to say that I see their point. So it has been decided that Grace will do 6th grade online from home. This will give us flexibility to schedule her many therapy and doctors appointments. Also if Grace is having a bad morning or a melt down I don't have to stress that she will miss school. The school district will still oversee her studies and do all of the lesson planning. Really that seems so perfect. We are also going to put Grace in a dance class. We haven't decided what style yet, hence all the phone calls. I am starting to feel like I can actually do this. It just takes time to let everything sink in.
The most amazing thing through all of this has been my own research. I have been wondering about the ABI. What does it mean? What is the difference between ABI* and TBI**? What are the symptoms between the two? I found a website that was a great help. Really when I read the site I thought they had just completely described my child. The page a fact sheet about Acquired Brain Injures in Children. There are four main areas of concern. Sensory and Motor, Cognitive, Language and Communication, and Language and Communication. Here is the paragraph that describes Grace perfectly...
Social, behavioural and emotional
A child may experience difficulties relating to peers and siblings and have difficulty joining group activities. They may appear very demanding of their parents' or teachers' attention and have difficulty following rules and instructions. A range of behavioural problems may arise after acquired brain injury, which may include: depressed or anxious mood, hyperactivity, distractibility, impulsivity, poor judgment, reduced control of anger and frustration, mood swings, aggression, sleep disturbance, and poor motivation and initiation. When social, behavioural and emotional problems are recognised early in recovery, a number of rehabilitation strategies may be employed in the school and home environment.
http://synapse.org.au/get-the-facts/acquired-brain-injury-in-children-fact-sheet.aspx I have called and read the article to Grace's therapist and her Pediatrician today and both said, you just described Grace. It is amazing. This helps us understand the why. What we will still have to work on is how to help her overcome it. I know I haven't found a miracle cure, but understanding goes a long way. I am hopeful that this will mean less medication for Grace. I am not a fan of medication. I know there is a time and a place for it. I just want to try everything to avoid it. Here is hoping that we are able to go down a better path to help Grace.
*ABI- Acquired Brain Injury
**TBI- Traumatic Brain Injury
This article explains the difference between the two injuries.http://www.biausa.org/FAQRetrieve.aspx?ID=43913
Friday, August 2, 2013
Not Ready!!!!
Wow, things have been really rough. Grace has really been struggling. We went to visit last weekend and she had been in trouble at Hogwarts. When they brought her out to visit with us she was wearing some awful sweats and a t-shirt. I asked why she was wearing these awful clothes? I was told she was on restriction and while on restriction she can't wear her own clothes. Grace got really rude with the staff member who brought her out to me. I told her if she was going to talk to her like that that she could just stay in the awful clothes. She apologized to the staff member, they did let her change into her clothes for our visit after she changed her attitude.
This last week I couldn't make the drive down for family therapy. We did a phone conference instead. I was already a little nervous about therapy because Grace's regular therapist was on vacation. The call started out just with some small talk. Then Grace started to complain about the other girls in her group. She got really worked up very quickly about how awful they all are. Then she started to say how much she hated all of them. I tried to distract her and move to another subject, but she wanted to talk about coming home instead. Grace then got completely stuck on talking about when she would get to come home. I told her that we needed to talk about other things before we would be ready to talk about her coming home. She just lost it and shut down. It was so hard because I couldn't see her and read her body language. Finally I said that I felt that it was best for me to hang up. She just started to scream and beg for me not to hang up. That is when you know that you have to anyway. I just hate seeing or hearing her like this.
After our disaster of a phone call I got a call from another therapist at Hogwarts. I was informed that insurance had denied more time and we needed to be prepared to pick up Grace by the end of the day!!!! I was shocked!!! I really was not excited to go and bring her home when the last thing I heard from her was screaming. I lost it and just started to cry. How could this be happening? I started calling everyone from the school to the insurance company. I finally after tons of phone calls found the right person to talk to and they were able to authorize another day while they figured out what was happening. So in the end what I learned was that the therapist should have never called me and said insurance hadn't come through and he should never had said I was going to have to pick her up. He jumped the gun. What was really happening was the insurance company need some clarification and they place a pending note on her file. What needed to happen was Grace's doctor needed to talk to the doctor at the insurance company. What a mess. I talk to the insurance company today and was told that everything is fine and that Grace is covered through next Tuesday for sure. At that point they need another report to determine if she is still meeting medical necessity. So what is medical necessity? The insurance company wants to know can Grace's care be managed at a lower level? Is she a danger to herself or to others? It is a very small window of what they want in order to justify keeping her there. What I am learning is this means the insurance is getting very anxious to get Grace out of there. I talked with Grace's doctor just last week and the doctor told me that they think Grace needs about 9-12 months of care at Hogwarts. Well obviously the school and insurance company are not seeing eye to eye. Now it feels like we need a miracle. I called the billing office just to see how much self pay would be. Lets just say that one month at a discounted rate would buy a nice used car. That is not going to be an option. At this point I have decided that I need to work with Hogwarts to make the most of the time we have left. In the mean time I have to call and set up tons of meetings for once Grace is released. I have to have a physiologist set up and ready to see here, try to get in home therapy set up, and call the school district to get an IEP for her. Not to mention we are still trying to set up the neuropsychological testing. This is such a crazy system to navigate. The insurance person I spoke to today asked me to please write a book about how to do all of this. Who knows maybe I will? In the mean time I will keep pushing to get the best help I can for my Grace.
Basically what I am figuring at this point is yes Grace will need long term care, however not necessarily from a long term treatment facility. Her care at some point will be managed by us from home. This really scares me at this point. Also it was suggested that if Grace does have a ABI then we need to file for disability for her. Having her on disability would help us with the co pays for her care as well as resources to help us avoid hospital stays. It's one more thing to do, but it may be the most important. Baby steps to figuring this all out.
This last week I couldn't make the drive down for family therapy. We did a phone conference instead. I was already a little nervous about therapy because Grace's regular therapist was on vacation. The call started out just with some small talk. Then Grace started to complain about the other girls in her group. She got really worked up very quickly about how awful they all are. Then she started to say how much she hated all of them. I tried to distract her and move to another subject, but she wanted to talk about coming home instead. Grace then got completely stuck on talking about when she would get to come home. I told her that we needed to talk about other things before we would be ready to talk about her coming home. She just lost it and shut down. It was so hard because I couldn't see her and read her body language. Finally I said that I felt that it was best for me to hang up. She just started to scream and beg for me not to hang up. That is when you know that you have to anyway. I just hate seeing or hearing her like this.
After our disaster of a phone call I got a call from another therapist at Hogwarts. I was informed that insurance had denied more time and we needed to be prepared to pick up Grace by the end of the day!!!! I was shocked!!! I really was not excited to go and bring her home when the last thing I heard from her was screaming. I lost it and just started to cry. How could this be happening? I started calling everyone from the school to the insurance company. I finally after tons of phone calls found the right person to talk to and they were able to authorize another day while they figured out what was happening. So in the end what I learned was that the therapist should have never called me and said insurance hadn't come through and he should never had said I was going to have to pick her up. He jumped the gun. What was really happening was the insurance company need some clarification and they place a pending note on her file. What needed to happen was Grace's doctor needed to talk to the doctor at the insurance company. What a mess. I talk to the insurance company today and was told that everything is fine and that Grace is covered through next Tuesday for sure. At that point they need another report to determine if she is still meeting medical necessity. So what is medical necessity? The insurance company wants to know can Grace's care be managed at a lower level? Is she a danger to herself or to others? It is a very small window of what they want in order to justify keeping her there. What I am learning is this means the insurance is getting very anxious to get Grace out of there. I talked with Grace's doctor just last week and the doctor told me that they think Grace needs about 9-12 months of care at Hogwarts. Well obviously the school and insurance company are not seeing eye to eye. Now it feels like we need a miracle. I called the billing office just to see how much self pay would be. Lets just say that one month at a discounted rate would buy a nice used car. That is not going to be an option. At this point I have decided that I need to work with Hogwarts to make the most of the time we have left. In the mean time I have to call and set up tons of meetings for once Grace is released. I have to have a physiologist set up and ready to see here, try to get in home therapy set up, and call the school district to get an IEP for her. Not to mention we are still trying to set up the neuropsychological testing. This is such a crazy system to navigate. The insurance person I spoke to today asked me to please write a book about how to do all of this. Who knows maybe I will? In the mean time I will keep pushing to get the best help I can for my Grace.
Basically what I am figuring at this point is yes Grace will need long term care, however not necessarily from a long term treatment facility. Her care at some point will be managed by us from home. This really scares me at this point. Also it was suggested that if Grace does have a ABI then we need to file for disability for her. Having her on disability would help us with the co pays for her care as well as resources to help us avoid hospital stays. It's one more thing to do, but it may be the most important. Baby steps to figuring this all out.
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