Monday, November 17, 2014

Advocating never ends

I am thankful Abe is doing so well now. He is getting stronger, able to pull himself to a standing position again. He started using a reverse walker although he still needs to build strength for this. The decreased PT to 3x a week instead of 5x a week has helped the family. I am able to make real food on occasion, although dishes and laundry are still backed up. Abe seems to be adjusting to school better now too since he is there at least 2 full days and half days the other 3 days. I finally got the Paratransit Services situation taken care after having a long telephone conversation with the regional manager. He was very helpful and kind. Last week I spent my time figuring out why his Medicaid coverage would be terminated at the end of the month. I made countless phone calls only to just end up getting no where. One lady even hung on me, I even heard the phone slam down. I was not yelling or being mean. I just was explaining who I already talked to and what exactly I needed to do. The mix up was because his DDA case manager had his coverage transferred to another program so he can receive the 80 hours a month of personal care. She had no idea it would be this difficult. I opened the letter on Sunday and by Thursday morning I called again and was told it was changed over and he won't lose coverage. This has been a huge blessing for us because the cost of all his medical care adds up quickly, the fuel, bridge toll, for those of you non Washington people the bridge toll is $4.50. This does not sound like much but when you drive over it 3-5 a week it adds up quickly. This is the discounted rate too, if you pay by mail I think it's $6.50 and if you stop at the toll it is $5.50.  If in the Washington area, anyone reading this is interested or knows someone interested in providing care for Abe he qualified for 80 hours a month of personal care. The person has to be over the age of 18 however. Since we lost respite care upon military retirement this would be nice to have. Back to the title, advocating never ends. I got the Medicaid stuff situated finally now to get him ABA service back. You would think getting ABA service for your child with Tricare insurance it would be simple especially since he has received it since summer 2012 from the same company but it's not. I had to make lots of phone calls to the autism case manager with Tricare, the ABA company and email the provider at Seattle Children's Hospital plus make an extra trip to Seattle for Abe to have IQ and Vineland testing done. The Seattle Children's Hospital physician confirmed an autism diagnosis. When a family retires from the military they lose respite care and ECHO (extended health care coverage) for their special needs kid. A few years ago ABA was not offered to retired military families but parents put their feet down and now it is. Since Abe has Tricare and Medicaid, the ABA company has "limited availability"  and he is on a wait list. I understand companies need to make money to pay their employees, pay for the mandatory health insurance, ect but if a child has a medically necessary need then it needs to be met. I did hear that a lawyer is working on cases for children with autism and Medicaid coverage. Not specifically for my son but for every autism child that has state insurance. Tricare authorized ABA services however I don't think the company wants to take him on as a client again because legally they can't ignore and not bill both insurance companies.  The ABA company did not verbally nor in writing share this information with me. When I tried to get Abe the testing that Tricare requires  for retired military families to receive ABA therapy at CTU in Puyallup since he is an established patient with PT, OT and ST they would not able to because of his Medicaid coverage specifically saying we legally can't ignore that he has the coverage but if he only had Tricare we could schedule and test him. I assume laws that apply to one facility apply across all medical facilities and services. A case manager gave me a long email of resources to advocate for he gets ABA services again. So I have another thing to spend my time doing research and advocating for Abe. He probably really has no idea what I do for him. There are days I wish I could just have a normal life and not spend on my time making phone calls, sending emails/texts and typing out letters all to maximize his potential. I know parents have to advocate for their typical kids but you truly have no idea what advocating for a medically complex kid is like until you have done it. Abe will see neurodevelopment this month and orthopedic surgery next month. His hip is still sublaxed. I really don't know if surgery would be warranted or not right now but based on his x-ray he will be seen in December instead of March which is the next availability. Not sure if this is good thing that the doctor is wanting to see him now or if it's because he is post SDR surgery. On a positive note I asked if appointments can be combined at Seattle Children's and they called me today to schedule both rehab and pulmonary for the same day and although it will be in February instead of January, only one week later than they offered I chose the 11am time so I don't get stuck in 3 hours of traffic. Hopefully it won't take 3 hours to get there but I assume most people would be at work by 1045am so we should be fine.  I still plan to add extra time just in case.  We will plan to combine neurodevelopment and neurosurgery on the same day too if possible. The neurosurgeon felt his VP shunt is functioning well enough for an ARNP to see him for his next annual MRI and reprogramming appointment. His shunt is almost 6 years old but still functioning well. Eventually he might require surgery for a new one due to failure and growth. I heard it's rare for it to function this long without needing to be replaced. We have a lot on our plates right now please pray that his shunt continues to function well and no surgery is required. Other children are frequently having VP shunt difficulties and are in the hospital for it. Seattle traffic in the dark and rain just stresses me out and I really don't want to do it again. I thought I could handle 8am and 9am appointments but not if it takes me 3 hours to get there. We only live 1 hour 20 minutes away with no traffic so with traffic it doubles the time. Thankfully we are safe and Luke only screamed at the appointments and the last part of the way home. I think if he screamed the entire 3 hours of driving my stress level would have been worse. Nope  he slept most of the drive. Driving to Puyallup and Tacoma is nothing like driving to Seattle. I recently looked at the mileage to Poulsbo where he used to have PT, OT and ST and Tacoma is actually a few miles closer. I should sleep my family has been sleeping for over 2 hours now. Luke woke up a lot last night too.

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