Update on the kids

So, enough about ME! This is what's going on with the kids.

Where we're at in the battle with the state for Isabel is that we've RE-applied for DDD services (we applied before and they turned her down because of the wording in the developmental pediatrician's report). DDD stands for Division of Developmental Disabilities. Through them, children can get speech therapy, physical therapy, occupational therapy, and some respite care for their Autism.

Upon applying for DDD one is required to apply for Federal Medicaid Long Term Care irregardless of income. If the child is in immediate danger of being institutionalized then they'll give you the Medicaid and DDD will find and begin appropriate therapies. If the child is too healthy (based on the doctor's report AND the evaluation done by the Medicaid medical investigator) and Medicaid says, "NO" then DDD won't provide any therapies or respite for the child (but they will tell you where to get therapy on your own). This is what has happened with Isabel.

The problem with this is that Shane's medical insurance through American Express (DON'T ever work there if you have a child with Autism) does not cover ANYthing for Autism or Developmental Delays. "How can this be? The state LAW is that insurance companies HAVE to cover therapies for Autism!" is the response I keep getting. Well, I've looked up the stupid law and HIGHLIGHTED the loophole. Self-funding it's insurance (and being a huge corporation) exempts them from the law AND they are taking full advantage of it. Shane begged them. They said, "No." And therapists won't see the child at all unless you have cash ($150. per session for ONE therapy session and she needs three different therapy sessions EVERY week. This adds up to about $1800. per month. And, I have TWO kids that need these so that's roughly $3600. per month that we'd need to come up with JUST for their therapies).

Obviously, Isabel has not been able to get any therapies or other help. The most immediate problem for her is that she has sensory processing problems due to the Autism. One of the ways this manifests is that most foods taste REALLY bad to her (you should see her reaction if I trick her into putting something new in her mouth). She won't eat ANY protein and has stopped growing as a result (I've resorted to putting raw eggs into fruit shakes, protein powders are full of weird diet stuff and are VERY expensive).

According to the doctor, she desperately needs these therapies so he said to RE-apply for DDD. For as concerned as he was during her last evaluation, he hasn't seemed bothered since. He has changed one word in his report. He also refuses to give me documentation of her current evaluation (the report is based on his first evaluation of her). Yes, I've called and called and called and asked and asked and begged. He won't. He's too busy. So I have to hope that the one word change in the report is sufficient enough for the Medicaid medical investigator to change his/her mind about Isabel's condition.

I've also JUST applied for DDD for Cale but I don't think he'll have problems qualifying. The medical investigator can just look at him and the state of my house and see that he IS in IMMEDIATE danger of being sold on E-bay.

The process of applying for DDD takes MONTHS. So, the one word in the doctor's report has cost Isabel about seven months worth of therapies and me my nerves. They say that you CAN reverse some of the effects of Autism through therapy if you do it early enough in the child's development. But NOTHING seems to be set up to provide kids with immediate care. It is taking ALL of my spiritual resources to KNOW that the help is out there (the possibility of REVERSING this) and I just can't get to it.

Children can get DDD services (if they qualify) with the report of a developmental pediatrician from ages 1-5 years old. By the age of 6, however, they need a report from a real clinical psychologist in order to get or keep their DDD services (the cost difference is huge). Isabel will be 6 years old in December. Because of the unresponsive nature of the developmental pediatrician, I'm taking her to see a neuro-psychologist now. She goes in next week for two full days of testing and observation. They will be able to tell me which parts of her brain aren't functioning and exactly what we need to do about it. This, hopefully, will be another mark on her side of the chalk board for the Medicaid medical investigator (if I can get the timing of all this to work out just right).

Incidentally, psychologists don't always bill insurance companies. They often times need ALL the money up front (about $3000.) and then will help try to get the insurance company to reimburse (we had to get the money from our family). If I can get this new report BEFORE the medical investigator comes (I haven't gotten a call from Medicaid to set up an appointment yet) then they shouldn't be able to argue with Isabel's condition.

The angel I spoke of earlier is my new DDD case worker. She is from Puerto Rico, and has such a thick accent that I have to be able to read her lips to understand her (if we're talking on the phone I'm screwed). She moved here to Phoenix because she has two autistic children herself and according to her, "This is the city to live in if you have a child with autism. The resources here are cutting edge, but you have to know how to work the system." She started to cry as she watched my children and then took a deep breath and went into a long, passionate, and very detailed, step by step plan of what to do. It's the FIRST time I've had ANY guidance on this stuff.

She said to take Isabel to this particular neuro-psychologist. We'd have to pay for it up front but that we could get reimbursement from our insurance company if it's labeled under Mental Health (instead of Autism). Apparently, no one with Medicaid will argue with this neuro-psychologist. She also told me to tell Medicaid to send this particular medical investigator to do Isabel's evaluation (she knows her). Medicaid fought me tooth and nail on this one but finally agreed because I have the right to choose who comes. "THEN," she said, "the day that the Medicaid medical investigator comes over, give Isabel a chocolate milkshake. This is poison for an autistic child and the person will see what Isabel is REALLY like." She told me that I live with Isabel in a pretend world. "You control her routine, you control her environment, and you control her diet (gluten (wheat) and casein (milk) free). In the REAL world, children eat wheat, they drink milk, and they don't necessarily live in a controlled environment. LET the Medicaid medical investigator SEE what she is REALLY like!"

So that's the plan. The the current scoop in the saga. DDD comes to see Cale Friday but it'll be another two months before the medical investigator comes. Nothing's fast. Isabel see the neuro-psychologist the 15th and 16th of this month. I'll write an update on Isabel's medical condition after that. Thanks for your support and prayers and thoughts and "good vibes." I love you guys.