Health Insurance Case Manager and Therapy Update

Who needs sleep anyway? Blogging my health insurance situation is important enough to lose a few winks (or hours). Says the lady at 3am who will be quite the cranky person in a few short hours when she has to wake up!

Anyhow, Chianna had a therapy appointment today at 4:30. I was working up until the last minute, when I realized that her shoes weren't on and her hair was a tangled mess. So off I run to put her shoes on and comb our her tangles as quickly as possible without hurting her or pulling all her beautiful hair out! Then rush to the car, and rush to the therapy office, which is about a 15 - 20 minute drive. Rush in, to find that for the 2nd time in two weeks, her scheduled therapy appointment will not be happening because the insurance approval from Staywell hasn't come through yet! It has been 2 weeks! So I am upset with the therapy place because someone who was supposed to call me didn't; nor did they return my message yesterday when I called them to confirm the appointment either! At least, the occupational therapist that was there at the front desk offered to do some quick stretches with Chianna and showed me some new ways to stretch her that I really like a lot, so it was not a total waste, and I am so thankful for that!

So, I march off super, uber pissed off, doing my best not to take anything out on Chianna or let her even know I was mad because she doesn't understand these things and it will only confuse her. How do you hide this level of frustration? I do not know, I think I have perfected the smile through gritted teeth.

I get in the car and call my Staywell / Wellcare Case Manger, you know, the one that was none too helpful the first time around. But I figure, its better than some dimwit in 'customer service' [term used lightly] who will not likely even give me the correct information at all. And actually by dimwit in customer service, I don't mean any ill will or negativity towards any individual, they are only as good as the structure and policy around them, and when that makes it impossible to do their job properly, its hard to assume they should be caring and knowledgeable. Luckily, our case manager was on another call and the person who answered the phone in that department asked if he could help me. His voice alone was pleasant and comforting, so I thought I'd give it a shot. I guess, I have to look at it as what might be the silver lining in the situation - at least I hope it turns out well. He seemed like a big help to me. He is assigning me a new case manager, one who deals with long term therapy. (Yes, you can ask why didn't they do that in the first place? And also say "DUH" - loudly and obnoxiously, too.) He said that didn't make sense at all that they take so long to approve more therapy sessions when she needs constant care. I also explained to him the therapy problem I was having and that the previous case manager didn't really resolve any situation for me, because the place that she found for therapy is 45 minutes away and didn't have therapy available on the same days, but that even if they did that a 45 minute drive each way after school is too hard on Chianna both mentally and physically, and doesn't allow time for her school work, dinner, bath and bedtime. He agreed with me, and sounded much more empathetic and compassionate and understanding of my situation than the case manager they had assigned me did. She was just a strictly "by the book" type of thing and I was definitely upset about the lack of help. Hopefully this person I spoke with wasn't just a "yes man", because I've spoken with plenty of those type people at insurance companies before. And more importantly, hopefully the new case manager, or case nurse we are assigned can REALLY HELP us, not just give me lip service and quote their guidelines. Maybe they might be able to get her out of network therapy covered after all, maybe even they can get her orthotics covered out of network too, but if none of that happens, then hopefully at least we can get a steady stream of approvals so that when I finally get appointments for her to see her speech and occupational therapists, that we can keep them! It shouldn't be too much to ask!

I should be getting a call from a new case manager within the next few days, so as usual, I will try to keep the blog updated with the situation!

Botox Update

I know, I just posted about Botox, so I am going to include a short update on Chianna's progress over the last 5 days. The morning after the Botox, Chianna woke up saying that her arms and legs were sore where the shots were. The doctor had said this might happen but was not very common. She said if it did, to give her Children's Tylenol or Motrin and it should take care of it. I gave Chianna some pain medicine and her pain went away and didn't return, so we were all good.

On Friday we left for Orlando to visit the family and to attend the burial of our Nonie and Papa. It was not a fun trip, but we now have some closure and know that Nonie and Papa Nick are together forever and that is a comfort. At least we got to spend time with the family and Chianna and I got to meet some of Myke's cousins that we had not met before.

We stayed at a hotel near Baba and Pa's house and on Saturday and Sunday we immediately saw some improvement in the range of motion on Chianna's right arm, she was able to push the elevator buttons with her right hand much quicker, easily and more accurate than before. When we noticed that, Myke asked her to give him five and noticed the increased speed, and strength that she was able to hit his hand with her right arm. Once she realized this, she was wacking everyone five whether they were prepared for it or not! I guess this is the only time that hitting and smacking will be allowed in our family! Chianna is very proud and excited and was eager to tell anyone and everyone she saw this weekend about her "ordeal" in the hospital. She wisely explained to friends, family and even some strangers that she had shots in her arm to help her muscles get stronger and that is why her arm is so strong and fast now!

On Sunday, she started complaining that her ankle hurt. She spent Sunday and Monday complaining it hurt and limping or hopping around. I called the doctor's office Monday afternoon and again today when I didn't hear back. Yesterday at camp, she said she didn't want to do anything since it hurt so much. Today she stayed home from camp (not because of the ankle, but because the field trip was ice skating and she wasn't going to be able to handle that.) This morning she said it still hurt.While waiting for the doctor's office to call back, I called the physical therapist, and he offered to come by today to look at her ankle and see if it is anything serious. Just like the broken car that doesn't act up when you take it to the mechanic, he arrived this afternoon and she was perfectly fine! But, at least he was able to confirm that it was nothing serious and likely just a side effect of her using her muscles differently and possibly causing some stress on her ankle joint  because of it that will take some getting used to. He did some stretching with her and observed that her ankle  flex had gained a few degrees in flexibility since he saw her just on Friday and of course observed the fast and hard "fives" that she is giving everyone these days. He seemed quite happy with the progress.

When I spoke with her doctor, after she called me back, she said that she really needs to be wearing her AFO and SMO braces for support. Unfortunately, her braces are not ready yet, which seems to be another side effect of our lacking health insurance situation, the prosthetic places that are covered don't put our the best product. We had her braces made quite a few months ago, I think it was in March or April that she was initially measured for the braces. They arrived the middle of June during the last week of school. It took a really long time to get them, the first day I sent her to school in them, she came home limping and could barely walk, her feet and ankles were all red and scraped in many places because the braces were not molded and fitting her properly. I took them back 3 times before seeing the doctor last month who wrote a specific set of instructions to the orthotist on a prescription and said if these changes can't be done, remake the brace. So about 2 or 3 weeks ago we went back to the orthotics place and they ended up re-casting a mold of her right foot and ankle to make a new brace. She made the follow up appointment to pick them up for yesterday, saying they would definitely be ready by then when I questioned her about it, and said she was having it expedited. Well yesterday morning, I received a phone call that they were not in, in fact, they were just finished and had to be shipped from Washington state and won't be in until next week! Some expedited service that is! I am lucky that I don't have a job where I would have had to have taken off work for the day or afternoon since I didn't even have any notice that it wasn't in. So, the point being that the doctor is upset that she doesn't have her braces yet, because that ankle brace is very important to keep the stress off of her ankle.

Her physical therapist showed us what the AFO and SMO should look like, as made by an orthotist that he recommends, and the look of them are like night and day. There are a number of things wrong with the design aspects of Chianna's current brace compared to the one that is made better.

So, we will see what happens with the AFO/SMO situation and the Botox too.

Botox Time

Chianna had Botox injections done last week to treat her Cerebral Palsy. I am going to do my best to keep updating the blog on her continual progress with the treatment. One of the issues we have is that after the Botox injections are done, they only last about 3 - 4 months, so we need to capitalize on the time frame and get her 3 sessions of both physical and occupational therapy per week.

Saying that is going to be challenging is an understatement!

The procedure for the Botox went very well. It is done under IV sedation with an ultrasound guidance to make sure the right muscles are targeted. The purpose of the Botox is to resolve the issue of tightened muscle tone that affects Chianna's right arm and right leg. She cannot flex her right foot, she cannot bend her right wrist, or turn her palm to face up; plus, her right arm is usually bent and her fist held up. The Botox targets the muscles that are tight and stronger because of these movements and the Botox in a way "paralyzes" the stronger muscles so that the weaker muscles can be worked out to get stronger so that they have a fighting chance to balance everything out once the effect of the Botox wear off. I hope I did a good job explaining that!

We arrived at Joe DiMaggio's Children's hospital in Hollywood last Thursday morning and I cannot say enough nice things about the facility and the staff there. They really catered to Chianna and made her feel welcome, special, and cared for. Even the person that called in advance to tell us what time to be there made sure to tell us that she could bring a toy, stuffed animal, or something from home to keep her company. She opted to bring her special Fox named Happy. I am sure she will not have any scary hospital memories or thoughts based on this place. We arrived to waiting room with a large screen tv playing cartoons. Everyone there from the check in to the nurses and doctors were so nice. When we went into the outpatient area to her bed, she was given the remote to her own tv and each nurse in the area came over and introduced themselves. Shortly after that a patient liaison came over and sat with her for quite a while. Soon Nutmeg, the resident dog arrived and came over too for some petting and loving. The nurses put a numbing cream on the spots where they might need to put the IV so that it wouldn't hurt and while they were putting the IV in, the liaison blocked Chianna's view of the IV set up with her IPad, and they played some games. Chianna didn't even know the IV went in. After that, while we waited for the procedure time, they gave Chianna sun catchers to paint and take home with her. We were able to go into the procedure room with Chianna and stay with her until she fell asleep. That was the only hard part, the IV meds sting when they go in for about 10 - 15 seconds until she is put under and she cried, she has such a high tolerance for pain, that she very rarely has ever cried when hurt, so it must have really hurt. The 10 - 15 seconds was horribly long for Myke and I and I am quite sure it hurt us more than it hurt her. The whole procedure was only 15 - 20 minutes. The doctor sent Myke and I to get coffee, and by the time we did that and came back they were all finished and we were able to sit with Chianna until she woke up, which was only about 15 or 20 minutes later.

The doctor spoke with us and said that everything went fine and that the effects will take about 24 - 48 hours and the optimum effects are in about 3 - 4 weeks. She went over stretching exercises for us to do with her daily and after an hour in recovery, we were on our way home!

I will do my best to keep posting about the results that we see with Chianna's progress!

Health Insurance and Therapy Update

I have not been able to find the time to update what is going on with therapy and Chianna's health insurance but I figure I had better get at least a short update in before the task becomes monumental.

We were assigned a case manager from Staywell who informed me that if any therapy is available within 60 minutes driving time (each way) that the insurance company has fulfilled their obligation and will not allow any out of network coverage. And the therapy providers don't have to have therapy available on the same day.

So evidently, we are supposed to be able to take multiple days off of work to drive her round trip up to 2 hours to a therapy provider. I explained that not only is that not feasible to take off work, but that Chianna cannot handle the long drives and the time spent for that plus therapy takes away from our family time, not to mention that once school starts, she has homework to do each night and getting home from therapies [exhausted] at 6pm or later and then attempting to do up to an hours worth of homework, eat dinner, have a bath and be in bed by 8pm is rather impossible.

The case manager was very uncaring to any of those facts and just stuck to the facts that are listed in our policy, standing by her company rather than even looking into helping us in any way.

Typical.

So, Chianna started with a physical therapist who comes to the house. We started about 2 or 3 weeks ago now, and he is absolutely wonderful. I am so glad that I feel it is worth every out of pocket penny we are paying him. The fact that I don't have to run around and rush to drive to get her somewhere in time is such a relief and he even comes on weekends!

Chianna really likes him and so far, we are off to a great start with that, despite having to pay in full.

I am still trying to coordinate getting Chianna the OT and Speech therapies twice a week, and it is yet to happen, but hopefully once school starts, we might be able to get a schedule together.

I Spent The Entire Afternoon on the Phone About Chianna's Health Insurance Today

How can anyone say no to her? Staywell Health Insurance sure is trying to.

After all of the back and forth today with the insurance company and doctors offices, my conclusion is that the insurance companies purposely make it impossible to get coverage so that the members give up and then they don't have to pay out.

Currently I believe what is happening is that the medical review division of Staywell that communicates with doctors, and only doctors (not members) has different information and does not communicate with the customer service division that I am only allowed to talk to.

The referral lady at our pediatrician's office gave me the phone number of the person she deals with in the medical review division. I called this nurse named Sandy. I first left a message explaining who I was and to please call me back because I am getting conflicting information. I didn't hear back, so I figured I'd call again since I really don't want to stew over this all weekend. I wish I had recorded the conversation with this woman, who has got to be one of the bitterest, evil human beings I have ever spoke to. Yes, you read that right. On top of everything I am dealing with, this woman decides to be a bitch. And I don't use that lightly, I wish I had recorded the spiteful tone coming out of this "woman's" mouth. And she is a 'nurse'? Pitiful.

Here is a summary of how the conversation went:

Me: Hi, is this Sandy? My name is Shari McConahay
Sandy: I got your message earlier but I didn't have time to call you back.
Me: I'm sorry to call again, but I am anxious to get this situation resolved.
Sandy: (cutting me off) Well, your daughter has already had A LOT of therapy.
Me: Ummm, no, she hasn't had a lot of therapy. That's why I'm calling.  
Sandy: She gets Speech and OT.
Me: No, she gets speech, but not OT or PT.
Sandy: Well then we are both misinformed because ATA says she is getting speech and OT.
Me: Who is ATA?

Sandy: The American Therapy Association, that is where you get your therapy from.
Me: No, we get therapy at All Aboard Therapy
Sandy: ATA is the one who approves it, we don't even do that here.

Me: And the referral dept at her pediatricians office said you said she only gets 24 speech sessions?
Sandy: Yes, and she's used them up, she doesn't get anymore.


Me: She is getting speech, but she hasn't has 24 sessions, so I don't even know why I am being told she has reached any limit.

Sandy: Well then good for you, she still has sessions left!
[Yeah, good for me, Lady!]

Me: I don't understand, why did the supervisor I spoke with at Staywell this afternoon (I provided name and reference #) tell me we get 24 session every 60 days and then it renews every 60 days? I confirmed that it does not run out.
Sandy: We aren't Staywell, we are Wellcare and she only gets 24 sessions it is not continuous coverage forever as long as you want.
(I still am not clear the difference between Staywell and Wellcare, but when I login to our account online, from Staywell, it changes to Wellcare. Her insurance card says Staywell Kids.)
Me: OK, well I am getting 2 different stories and it is not fair that I am stuck in the middle.
Sandy: Well I know what I know and that is you only get 24 sessions. I can't talk to you anymore because I am the only nurse here, and I have other phone calls to answer that are coming in right now.
Me: Well, I am having an emergency here and I need help. How do I find out about getting my daughter approved for out of network coverage for the occupational and physical therapies?
Sandy: We don't approve out of network coverage, that never happens. And there are providers in your area. I told the doctors office to write a prescription for physical therapy.
Me: There are not providers in my area, I actually sent in a letter detailing each of the providers that are listed on the website and the reason that they cannot see my daughter.
Sandy: (Cutting me off before finishing the sentence.) Yeah, I read that, but there are providers.
Me: Can I speak to a supervisor?

Sandy transferred me to a manager's voice mail. I left a message and I hope I can talk to the manager on Monday. I also hope she takes my complaint about Sandy and what an awful person she was to deal with.

I can not tell you the horrid, evil tone this woman had! And I feel I have to add, I was not rude to her at all, she must be upset with something that she deems it necessary to take out on others but she is clearly in the wrong profession.

I then called back the Staywell customer service division that I spoke to and ended up getting no where. They reassured me that "they know for sure" that she gets continual therapy, 24 session every 60 days and that I have to have the doctor's office call back on Monday to request a new authorization to go out of network. They assured me that they do approve out of network providers when it is necessary. It's like I'm talking to two different companies here - and they even call themselves by different names. The company is state run, and it is really messed up. They did tell me that I could have the doctor's office call them instead of the provider line. But I have a feeling that won't go well. We will see what happens on Monday.

In the mean time, I called the UCP and Easter Seals to inquire about advocates. I am calling our local news stations to tell my story. I have already wrote all my politicians, I'm doing that again. I am filing a complaint with the state board for health insurance too. Any other ideas, please let me know.

I don't know how long this is going to take to get my daughter the therapy she needs. It has already been 8 months since she has had the therapies recommended by her doctors. If coverage does run out, or I cannot get the correct therapies for her, the price to pay for them out of pocket is over $1,100 a month. I am going to look at fundraising money so that we can get her the therapy she needs. 


Here is Part 1 of This Insurance Problem


Part 2 of My Insurance Problem


Part 3 of My Insurance Problem

Please share my story.
Thanks,
Shari McConahay
Mama Bear

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Update:

After yesterday, I realized that it will take too long to sort out this insurance crap, and Chianna has already gone 9 months without physical or occupational therapies. We are going to have to get Chianna her therapy without the insurance. But we need help in order to do that because it will cost over $1100 a month. Any small amount will help. Please share our story. Thank you. 

http://igg.me/p/153715?a=799470

Trying to Get Chianna Therapy

The reason I called Staywell today was partly because of another reason: I received a phone call from the referral dept at Chianna's pediatrician's office telling me that she can't receive anymore speech therapy because she has used up the 24 visits she has for her lifetime! When we first were put on Staywell I called them and asked what type of therapy coverage they had and they told me it is 24 visits per 60 days, but I specifically asked and they confirmed that it is renewed every 60 days. Now they are telling the doctor's office one thing. When I called today they supervisor assured me that is not the case and the they do cover 24 sessions per EVERY 60 days. I have been back and forth on the phone between her pediatrician's office and Staywell and we are each speaking to a different department that the other is "not allowed" to speak to and getting a different story. Someone, please help!

My Next Post on This Topic is:

I Spent The Entire Afternoon on the Phone About Chianna's Health Insurance Today

Previous Posts on This Topic:

Trying to Get Chianna Therapy

What's Wrong With Health Insurance in the US?

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Update:

After yesterday, I realized that it will take too long to sort out this insurance crap, and Chianna has already gone 9 months without physical or occupational therapies. We are going to have to get Chianna her therapy without the insurance. But we need help in order to do that because it will cost over $1100 a month. Any small amount will help. Please share our story. Thank you. 

http://igg.me/p/153715?a=799470

Staywell Insurance Problems - Out of Network Coverage

So, I am currently on hold while I type this with Staywell health insurance, the insurance that covers my daughter. Since I last wrote, I have been going through Herculean efforts in attempt to get coverage for out of network therapists through Staywell for my daughter's physical and occupational therapy. They first asked for a letter from her pediatrician. It took me a month of back and forth with the doctors office to get the letter. Then Staywell tells me that they don't need a letter, they need the doctor to call to get the necessary forms they have to fill out. It took several phone calls and several hours for her doctor's office to do this.

To digress, my daughter has Cerebral Palsy and needs speech, physical and occupational therapies to give her a chance at a better life, to help her learn to use the weakened right side of her body. The longer she goes without therapy, the more her muscles stiffen and the less help the therapy is. Although C.P. is not progressive, without the necessary therapy, she gets worse.

Staywell does not have enough providers in our area for therapy. Since the doctor's office submitted all the information Staywell requested on June 14, 2012, I have called Staywell several times to check on the status. My last call to them was on Wed. June 27th. First they told me that the Dr. had to call again because they are missing information. I asked what information is missing and she tried to tell me the doctor's office had to call. I explained that they are making it impossible for my daughter to receive the therapy she needs because the doctor's office cannot continue to call spending hours on the phone. She put me on hold, came back and said she was sorry, she saw the doctor's office did send in the necessary info and that the case was in review. She said it should only be a few more days since it takes about 14 days.

So I called today to check the status. First I was told there is no record of any request. After I told her there had to be since I have called about it several times, she found it, and tells me that they need more information and for the doctor's office to call. I freak out and ask to speak to a supervisor. She tried not to get me a supervisor, but did after I threatened to show up at the office with attorneys.

Now I am speaking with the supervisor, and they are telling me that the medical review division closed out the case on June 20th with the reason "no authorization was necessary". She is telling me that the doctor's office needs to call back because that department doesn't speak to members, only doctors. That the information on the original request didn't say the request was for an out of network specialist. WHAT!!! It definitely did and my letters to them and the doctors information did as well. They purposely give people the run around so that they will give up because no one can spend the time on the phone and on hold and calling the doctors offices, insisting that they help me.

She told me that the only thing to do is have the doctor's office call back and submit a new request, make sure it says out of network coverage and ask for expedited, it will take only 3 days.

We will see. To be continued. . . . .

Next posts on this topic:

Trying to Get Chianna Therapy

I Spent The Entire Afternoon on the Phone About Chianna's Health Insurance Today

Previous Posts on this topic:

What's Wrong With Health Insurance in the US?

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Update:

After yesterday, I realized that it will take too long to sort out this insurance crap, and Chianna has already gone 9 months without physical or occupational therapies. We are going to have to get Chianna her therapy without the insurance. But we need help in order to do that because it will cost over $1100 a month. Any small amount will help. Please share our story. Thank you. 

http://igg.me/p/153715?a=799470

What's Wrong With Health Insurance in the US?

What's wrong with health insurance in the US? Well as you might guess, I'm gonna' tell you what's wrong! If you've followed my rants, you know all about the horrible nightmare I had with AETNA insurance company and how bad AETNA sucks. When I put that horrible experience behind me, I thought that I might be done with insurance problems, but I was wrong.

When we made the decision to adopt a special needs child, I did all the research on the health insurance and put everything in place to make sure that Chianna would receive health insurance coverage under my HMO policy through work just as the law states - adopted children are entitled to all the same coverage as biological children. Little did I know at that time that biological or adopted, health insurance doesn't cover all of the necessary therapy that any child with Cerebral Palsy needs.

So after we completed our adoption, Chianna was under the HMO I had with AETNA and the monthly premiums just for her were over $400/month. AETNA representatives on the phone straight up lied to me in their well known policy to "make the customer shut up and get off the phone". They said that after the first 60 days of therapy that they do cover all I would need was a doctor's letter stating that she would need to continue with therapy and that she would be approved for more therapy. Under the insurance policy, they also don't really cover the therapy sessions since the co-pay they charge is the same rate as a non-insured patient can receive - $50 per thirty minute session. Chianna was recommended to have two 30 minute sessions per week for speech therapy, occupational therapy, and physical therapy. I'm not sure who can afford $300 per week in co-pays, but it sure ain't us. Especially when paying over $100 per week already in her health insurance premiums. However, the reps at AETNA also told me that our policy had a $1,000 per year out of pocket maximum so that once we reached that total in co-pays, her therapy would be covered at 100%. So, we made the decision to invest the $1,000 to meet the out of pocket minimum, putting it on credit cards that were already almost maxed from our trip to Vietnam and all the other adoption expenses. Not only did AETNA neglect to make it clear that the out of pocket maximum was within the annual year, not a fiscal year from the date started (we were already in August at the time), they told me that she would be eligible for more therapy once the initial 60 days that they cover (but don't really cover because of the high co-pay) was over knowing the whole time that they DON'T EVEN COVER ANY THERAPY AT ALL FOR CHRONIC CONDITIONS, like Cerebral Palsy. What!? They don't cover therapy at all for something like Cerebral Palsy? Anyone else see something wrong with this picture? Not to go off on another tangent here, but for those who don't know, Cerebral Palsy is not a progressive disease - symptoms can actually improve over time with therapy, surgery in some cases, and other treatments too. Chianna has a right sided weakness from the C.P. and it mostly affects her balance and she has very little use of her right arm and hand. The therapy she is needs can help her become more independent by gaining a large amount of mobility in her right arm and hand and becoming more stable to prevent tripping and falling. I have seen first hand how much the therapy she has received to date has helped with this, allowing her to start to use her right hand as what is called a 'helper hand'. Her speech is also affected by muscle weakness, and thus the need for speech therapy too.

So after a long battle with AETNA over the coverage, the lies and spending countless hours trying to get simple errors on their part corrected, appeals, supervisors and almost $3000 in co-pays in 7 months, I finally found out that since they don't cover chronic conditions at all that Chianna would be eligible for the State of Florida insurance program for kids called Healthy Kids.I switched her to Healthy Kids and removed her from my HMO, and her monthly premium was reduced from over $400 per month to $135 per month AND her therapies were covered at $5 co-pay per thirty minute session. Why doesn't anyone tell you this? I have no idea and would do anything to get back the hours on the phone, writing letters, crying, pulling my hair out and going gray with the little hair I had left.

Once we were moved over to Healthy Kids, I called them and explained that my daughter had Cerebral Palsy and needed multiple therapy sessions per week and doctor visits, braces for her ankle and foot, etc. etc. The rep took my information and moved us over to a branch within Florida Healthy Kids called Children's Medical Services or CMS. Under CMS, the premium was only $15 per month and there were no co-pay fees at all! Plus we were able to get all the therapy the doctors recommended for Chianna. This gave us a big break in the costs since we had already spent so much and needed to recover. We did spend a lot of time taking her to therapy sessions and either Myke or myself always sat in on every session so that we could continue to practice and reinforce what was taught in therapy. The therapy place we were set up with and I was hesitant to leave was a full 30 - 45 minute drive from our house we made twice a week and the each time this was about a 3 hour process, so the goal of getting Chianna therapy was definitely achieved, but it definitely took up a lot of time; time we gladly gave up for her therapy though and so happy and thankful to be getting it. She was also receiving horse therapy once a week on Saturdays, which was amazing for her and definitely helped with her balance and core strength.

To give you an idea of the timeline, we dealt with AETNA from June 2009 - February 2010 when we switched to Healthy Kids CMS and had CMS up until October 2011. At that point I realized what else was wrong with the state insurance program. So here is where I get even a little more personal and reveal some normally private information. I normally would not share this and have debated for several months blogging about this at all, but I feel my story needs to be told - that MANY families stories need to be told and for the sake of hoping that someone who reads this will be able to make a change in the US health care system, which is definitely very, VERY broken. During 2010 and part of 2011 Myke and I were not making very much money from our family business, taking pay cuts to try to help it along. When we started a new business in 2011 and were able to take a higher salary, Healthy Kids moved us off of CMS and back to a different plan called Staywell under the Healthy Kids.  It turns out that all the therapy Chianna was getting under CMS was based on being financially needy, not medically needy. A family of three cannot make more than $3,180 per month in order to qualify for CMS. First of all, that is a really low amount of money to be making, and second of all, why is this coverage based on financial need instead of medical need? Clearly a family that makes even $3500 or $4000 a month can't be expected to also incur the expenses of therapy co-pays, right? So the Staywell Healthy Kids plan we were switched to is the one with a monthly premium of $135/month and co-pays of $5. Still a very fair price to pay. However, this plan is only accepted by very few therapists and in fact, she has not had physical or occupational therapy since October 2011 because I have not been able to find therapists under this plan that accept the insurance, or even see children - the insurance is called Healthy KIDS! We finally just got speech therapy started about 2 months ago, and that is going great - it is with a speech therapist we love and saw when Chianna first came home and she is making tremendous progress. But (of course there is a BUT) that progress is hindered because the insurance only covers 9 sessions at a time. Chianna gets 2 thirty minute sessions per week. The insurance does not allow the therapist to request more therapy sessions until after the 9th session is completed. So our therapist put in the request the same day as our 9th session and then they took over 3 weeks to approve new sessions, so instead of her getting continual therapy like is recommended and prescribed for a patient with Cerebral Palsy, she it is basically looking like 4.5 weeks on and 3.5 weeks off. Consistency is really important with therapy so that regression doesn't happen, but that doesn't matter to the insurance companies. I guess I should be happy that we are able to get her any therapy at all, but when it comes to my baby, I want the best for her, I want her to be able to overcome as much of this handicap as possible and with children that have C.P., time is ticking, the older they get, and the more they grow, the harder it is for the therapy to be effective. Next time we have to get approval for 9 more speech sessions, I will be calling the insurance company to find out if there is anything we can do to make the approval process any quicker, but in the mean time, I have another issue I am dealing with.

I called the insurance company last month and explained to them that I have spent several hours a week for the last 6 months making phone calls going through their list of providers for physical and occupational therapy, leaving messages, waiting for return calls, pushing buttons on automated phone systems, etc. and none of them are seeing new patients or have openings, and half on their list don't even see children at all. They told me that if I get a letter from Chianna's pediatrician stating that her therapy is medically necessary and that since nothing is available in network, request to go out of network. I wish I would have known this months ago! So, that is where I am at now, I called her pediatrician's office and have now been going back and forth with them for over 2 weeks, because instead of just writing me the letter, they started to try to find therapists in network. I don't know if they feel they need to qualify that part of the statement in the letter or what, but I keep explaining that I don't need them to find therapists for me, that I just need a letter because once they submit the letter to Staywell insurance, it will likely be 2 - 3 weeks before they answer as to whether they will approve the request. Just to be clear, I love her pediatrician and the office, this is not a complaint against them, its just adding to the time consumption and frustrations and ultimately the delay in getting my girl the therapy she needs. If would have known that they would call all the therapy places on the list for me, it would have saved me hours of time and 6 months!

So now that I have let the cat out of the bag, I will try to keep the blog up with updates on our insurance situation. I know that we are not the only family facing this problem and I hope that if I speak out, it might help others as well as start to mend a broken healthcare system.

Next challenge after this one is seeing if Chianna qualifies under the insurance to receive Botox, which her physiatrist is recommending. More on that in another post. . . .

Until next time, wish me luck, patience and sanity!

My next posts on this topic:

Staywell Insurance Problems - Out of Network Coverage

Trying to Get Chianna Therapy

I Spent The Entire Afternoon on the Phone About Chianna's Health Insurance Today

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Update: 6/30/2012

After yesterday, I realized that it will take too long to sort out this insurance crap, and Chianna has already gone 9 months without physical or occupational therapies. We are going to have to get Chianna her therapy without the insurance. But we need help in order to do that because it will cost over $1100 a month. Any small amount will help. Please share our story. Thank you. 

http://igg.me/p/153715?a=799470

Ms. Know It All?

I could not wait to share this conversation I had with Chianna last night. As I was tucking her into bed she tells me:

"Mommy, 'Ching' means 'thank you' in Nicky's language." (Nicky is a friend in her class from China.) I asked "Do you mean in Chinese?" She says yes. I said well actually I think that 'xie xie' means thank you, not 'ching'. She insists it is 'ching'. And then tells me that is what it said on tv and that she is going to say that tomorrow and that she is going to talk to Nicky about it! I am afraid that 'ching' is going to be interpreted as something else, so I am trying to persuade her not to do that and told her that we would look it up online tomorrow, etc. etc. And she says (very indignant):

"Mommy, I don't know a lot of things, but I know what 'ching' means."!!!!!!

Happy Valentine's Day!

Personalize funny videos and birthday eCards at JibJab!

Chianna loves her Uncle Brian!

Personalize funny videos and birthday eCards at JibJab!

May the Force be With You this Valentine's Day! Chianna hand picked this one!

Personalize funny videos and birthday eCards at JibJab!

Chianna created this one!

Personalize funny videos and birthday eCards at JibJab!

Papa & Chianna definitely go together like Peanut Butter & Jelly!

Personalize funny videos and birthday eCards at JibJab!

De De & Chianna: cousins and friends forever!

George Washington

Chianna learned about George Washington in school today. I asked her what she learned about and we talked about how he was the 1st president. She said that she would want to switch places with him and change the rules so that parents had to do homework and not kids. The fact that we already had to do homework when we were kids didn't change her mind.

Dinner, Anyone?

In a rare event, I made dinner tonight. I made fish for Chianna because she loves fish. As we were eating, I asked her if it was good. She said "not too much". In her matter of fact and honest way. Before I could ask what was wrong she finished her sentence with "because you don't cook good." (OUCH!) I started to get offended, but calmed myself and said that its ok to say you don't like it, but its not really nice to say I don't cook good. She just looked at me with a blank stare, shrugged one shoulder and said "well, it is". (ROUGH, HUH!?) Myke and I both commended her on telling the truth, but I don't think she functions any other way, which is a good thing, even when the truth hurts! LOL So now, here comes the real kicker. I asked, "well what could I have done different to make it taste better?" And she, again rather matter of factly said, "look at Daddy cook."

Bumble Bee

Yesterday Chianna decided to name our new car "Bumble Bee" (after the Transformer). She had previously named her little blue Mini car Bumble Bee, but she clarified that she changed her car's name to "Dinosaur". She then named Myke's car "Lion" and Baba & Pa's car is "Dr. Seuss"!

Boys Germs vs. Girls Germs

So here is the latest Chianaism from Chianna.

She has been wanting to bring her stuffed animal reindeer, Rudolph to school since we have been back from Christmas break. Rudolph is very special because Santa brought him to Chianna even though she didn't specifically ask Santa for him, but saw Rudolph in the store after she saw Santa. She is impressed that Santa and the Elves knew about her wanting Rudolph and delivering! : )

Evidently there is a time when they have recess that they are allowed to bring out a toy and play and share it. Last week we told her she could take Rudolph to school with her on Tuesday and she was counting down the days, because it was a MAJOR event to her. She even didn't want to sleep with him on Monday night for fear of forgetting to put him in her backpack Tuesday morning! This deer comes every where so that was shocking.

So, Tuesday night we pick her up from school and I asked her all about Rudolph's day at school. She was telling me all about it and said that she only let girls touch her deer "because boys have germs". So I giggled with her a little and smiled and said that was ok and she decided to elaborate that girls have germs too, but boys' germs are yucky and she doesn't like boys. She will only like boys when she is older and gets married when she has a boyfriend.

Of course this is all news to Daddy who is perfectly happy with boys being yucky and germy in her eyes!

The Day The Internet Fought Back

I received this email from FightForTheFuture.org and figured I share it as a good way to end the blackout on my blog. Not that I post to it everyday anyhow, but it's just the principle.

"Today was nuts, right?

Google launched a petition. Wikipedia voted to shut itself off. Senators' websites went down just from the sheer surge of voters trying to write them. NYC and SF geeks had protests that packed city blocks.

You made history today: nothing like this has ever happened before. Tech companies and users teamed up. Tens of millions of people who make the internet what it is joined together to defend their freedoms. The free network defended itself. Whatever you call it, the bottom line is clear: from today forward, it will be much harder to mess up the internet.

The really crazy part? We might even win.

P.S. Show this video to as many people as you can. It works! http://fightforthefuture.org/pipa/

Approaching Monday's crucial Senate vote there are now 35 Senators publicly opposing PIPA. Last week there were 5. And it just takes just 41 solid "no" votes to permanently stall PIPA (and SOPA) in the Senate. What seemed like miles away a few weeks ago is now within reach.

But don't trust predictions. The forces behind SOPA & PIPA (mostly movie companies) can make small changes to these bills until they know they have the votes to pass. Members of Congress know SOPA & PIPA are unpopular, but they don't understand why--so they're easily duped by superficial changes. The Senate returns next week, and the next few days are critical. Here are two things to think about:

1. Plan on calling your Senator every day next week. Pick up the phone each morning and call your Senators' offices, until they vote "no" on cloture. If your site participated today, consider running a "Call the Senate" link all next week.

2. Tomorrow, drop in at your Senators' district offices. We don't have a cool map widget to show you the offices nearest you (we're too exhausted! any takers?). So do it the old fashioned way: use Google, or the phonebook to find the address, and just walk in, say you oppose PIPA, and urge the Senator to vote "no" on cloture. These drop-in visits make our spectacular online protests more tangible and credible.

That's it for now. Be proud and stay on it!"

You can also see my article for South Florida Internet Marketing Association on the SOPA Protest: SFIMA Blog

SOPA Protests Black Out the Internet and My Blog Today

For more details on what this is about and why, see my article on the South Florida Internet Marketing Association Blog

Dr. Martin Luther King Jr. Day

I'm not sure about everything that was covered in Chianna's school about Martin Luther King Jr. but evidently this is what she got out of it: 
1. He'd dead.
2. It's a sad story.
3. He was good.
4. He was shot in the head by a bad man. (YIKES!)
5. There is a statue of him that she wants to see. (likely because she probably thinks it shows what happens when you get shot in the head?)

Anyone else think that "shot in the head" is a bit graphic for 1st grade? I didn't really probe any further to find out who told her that, I just figured I'd stop the conversation there before it got any worse with more questions that I can't or don't want to answer to a 6 year old.

Daddy Is In Big Trouble!

Chianna learned some where that when she is asking something from daddy, she should turn her head to the side, smile, and say "pleeeease" really sweet while blinking her eyes. She tells me tonight: "I have a special eye thing, I do it on daddy, you should try it too, Mommy."

My Little Anthropologist

So as you may know or have guessed, Chianna loves dinosaurs. It is her favorite thing. She got this awesome set of play dinos from Uncle Jack & Auntie P for Christmas and it had all different little dinos in it and a few cavemen too. She announced to Uncle Jack as soon as she opened it that she would not be playing with the people, she only wanted the dinos. (Hey, at least she is honest, I guess?) So the other day she opened it and was pretty insistent about not wanting the people. So Myke and I convinced her to keep the people and pretend they are riding the dinos or something like that. Evidently she was mostly upset because she didn't want to have to pretend play that the dinos ate the people! So I thought I would remind her (although I knew she already knew) that people didn't live the same time as dinosaurs did. She said "I know Mommy, it is just a toy." In a very "duh" tone. I thought it was pretty hilarious. Soon she will be schooling us all on the history of dinosaurs. I'm pretty sure she will discover what really happened to them.