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:
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.