Wednesday, 01 December 2010

• Confessions from Householdsix

  

  Amanda, with Confessions from Householdsix shares her story with us.  I grew up in a military family, so I was a little familiar with family insurance coverage.  Even given that, I was still surprised at the lack of coverage and support for military families raising one or more autistic children.  Amanda has two sons with an autism spectrum diagnosis.  This is her story, her words.  Thank you, Amanda, for sharing with me and my readers. 

  Our story starts when Zach was a toddler – about 15 months old. He still talked mostly in cave man grunts. He spent LOTS of time lining up his Matchbox cars just so. He needed routine. I just knew he was “different.” These differences became more pronounced to us both as parents when Zach started daycare about that same time. We got to see him with other children his age, and the song from Sesame Street came to mind, “One of these things is not like the others….” Zach was more aggressive at daycare because he couldn’t verbally express his needs and wants to the other kids. Everyone, including our pediatrician said it was “just a phase. He’ll out grow these behaviors.” As the behavior issues got worse, despite that we are consistent, older generations in our families would say, “he just needs spanked.”

  We tried EVERYTHING. We were living 3 hours from our nearest family. My husband was constantly working, sometimes months at a time with no days off thanks to the change in the military after 9-11. To say both of us were burnt out was an understatement. We had a couple babysitters, but who could afford them?

  Finally, when Zach was 3 1/2, we had relocated, he was having issues in preschool, and I got our family doctor to get us a referral to a child psychologist for Zach’s behavior issues. My husband was deployed at the time, and of course everyone thought that was the issue. No one seemed to want to hear that he had always been a “difficult” child – even from infancy. Zach was diagnosed with oppositional defiant disorder (ODD). We did a combination of group and family therapy for that for 4 years. There was no change, except in our bank account. At that time, we had even switched to the military insurance thinking we’d have better coverage, but not so much. We were driving an hour one way, and paying $100 a visit for mental health care for our son. You can do the math. That’s one group therapy session a week, and one family session once every six weeks or so when they could get us an appointment.

  I asked for re-evaluations during those 4 years. I was told that they wouldn’t find anything different. We even went totally out of pocket, scraped the money together, and drove to Philly to take Zach to Drexel to be evaluated by their autism department in the fall of 2007. At that time, they didn’t think there was enough to overturn his current diagnosis. They did ask us to bring him back in 6 months, but the time came and went, and we couldn’t afford it.

  We finally caught a break in the summer of 2008. An AGR (Active Guard/Reserve) position opened up. This was going to greatly reduce our medical bills with my husband being active duty. And it has for our more routine care. To get Zach diagnosed, we still had to go back to Drexel in January 2010 where he was diagnosed with Asperger’s. If we waited for our insurance, we were looking at about a 2 YEAR wait for the developmental pediatrician. We made the decision again to go to Philly and go out of network and out of pocket.

  After Zach’s diagnosis, I had to change his Exceptional Family Member Program (EFMP) paperwork, since he was already in there for the ODD. We were waiting to get an IEP from the school to get all of the paperwork for the Army with EFMP finalized (it was April 2010). After that got changed, then we had to enroll in the Extended Care Health Option (ECHO). ECHO is the ONLY way to get autism services covered for military kids. You HAVE to be active duty status to get this coverage. From my understanding, they only cover ABA therapy and respite care. We have caps too. No matter how many family members you have who need ECHO services, you’re limited to $2,500/month, $36,000/year. You also have a monthly copay based on rank.

  Once enrolled in ECHO, we got a case coordinator. She then got us set up with ABA therapy. Once all the referrals got to where they needed to be, it was August 2010. Zach was diagnosed in January 2010. That’s how much red tape there was from diagnosis to treatment. We have just started ABA therapy, and we need to look into respite care. No one has even told us which office on post or through Tricare handles respite care should we need it.

  I’ve looked into local Autism/Asperger’s groups, but I don’t feel like we belong. A lot of them talk about health care coverage, but in the military it’s so different than in the civilian world. I’ve navigated both. There are other reasons as well, but with the autism rate in military kids at 1 in 88, I’d like to see the military offer some sort of way for all of us parents to communicate with each other, even if it’s virtual by Facebook page, forum, etc.

  Our younger son Aaron, was referred for a speech evaluation in April 2010. He finally got the evaluation in June 2010. He was recommended for a full evaluation for autism. Our school’s intermediate unit (the agency who takes care of all these evaluations for kids 3-5), is telling me it will be at least October 2010 before he gets the full evaluation. If he is evaluated and receives a diagnosis of having an ASD like Zach, then we have to go through all of the same paperwork – EFMP and ECHO. If Aaron needs services as well as Zach, then we’re also looking at having to share the caps set forth by our insurance between two kids.

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