I don't write about Hannah much, although she's obviously the reason behind everything I do and write.
Hannah turned ten in October. She tries to talk but the brain damage affects her control of her tongue and throat so we can't understand her. That's also why she only eats from a feeding tube that was surgically implanted in her stomach.
She's legally blind, and in fact her vision can change from one second to the next. It has to do with the brain damage, her eyes are fine. Apparently, though, she's able to use her vision to see a computer monitor screen.
She is considered medically fragile, and has near-constant seizure activity in her brain. She has nurses with her 24/7 to intervene if a seizure starts. The only other option for her would be institutionalization, and I will not allow that.
Her brain has grown, sprouting up like mushrooms around the scar tissue.
Last June, a certified speech pathologist in Los Angeles showed my daughter how to use a touchscreen computer communications device. The therapist told me (and wrote in her report) that with the appropriate technology Hannah could learn how to write sentences and do simple math, not to mention communicate her needs and wants. She recommended the technology that she had observed Hannah using.
Assistive technology and augmentative communications devices are covered under EPSDT. CMS has confirmed that.
UnitedHealth has been spinning a delay that means my daughter still doesn't have this device five months later.
The worst part is that my private insurance approved a four week trial, at the same time the Hawaii Department of Human Services wrote in "informational notes" that voice replacement and communications devices were covered by EPSDT and therefore the responsibility of UnitedHealth.
So Hannah had one here in the house for three weeks. Her nurses kept logs of how many times a day she used it, how many choices she was given, and how often she pushed the right button or the wrong button. She used it more and more and was able to increase her choice field from two options to four and still improve her percentage of correct selections.
For a week after I had to return the machine to the manufacturer, Hannah kept going to the table where we had kept it, feeling for it. She had learned she could use it to talk to us, we had taken it away from her, and we had no way to let her know we were hoping to have it back soon.
My private insurance reviewed the letter from Hannah's doctor, agreed it was medically necessary and approved 80% of the purchase price on December 24. UnitedHealth still hasn't told the equipment company, as of their close of business today, that they will pay the remaining 20%.
The most recent information I have is that they expect to "make a decision" sometime this week.
Decision? What decision? We're talking federal law here, there are no decisions to be made.
UnitedHealth knew my private insurance company had approved the trial. They knew the device was here, and they knew they would be in line to pay the deductible.
On December 28, I emailed David Heywood and Cheryl Ellis to let them know the approval had come in. I finally heard back from Hannah's "case coordinator" at Evercare after noon on December 31 that she was checking on the status.
Dynavox was told a form would be faxed to them on the 28th. As of the 31st, they still didn't have it. Cheryl Ellis told Dynavox they would have the approval before they got into work on the 31st. Instead there was a phone message from someone in their "compliance" department.
The only person being hurt by all these delaying tactics is Hannah.
I can't think of any reason why anybody or any company would want to hurt my little girl by denying her the means of communicating with us.
There's no rational reason for hurting Hannah, which leaves the unpleasant idea that she is being retaliated against for what her mom is writing.
That actually would be violating her civil rights under the Americans with Disabilities Act.
I am tired of being quiet about this. It's a battle I've been forced to fight on my daughter's behalf since August. I still rankle at the memory of a conversation I had about this with someone at UnitedHealth. I had stated that CMS had said they (UnitedHealth) were responsible for the communicator because of EPSDT. The response was something like oh-well-I-guess-we'll-just-leave-it-up-to-DHS-to-decide.
DHS decided, but that still apparently isn't enough to get UnitedHealth to give the go-ahead to the equipment company.
How much longer does Hannah need to wait? Does somebody really think if they try to hurt my daughter, I'm going to stop writing on my blog?
- Disability Mom
- I'm the mom of a child with disabilities. Hannah's first neurologist said she might never develop beyond the level of a 2 month old infant, and there wasn't anything I could do about it. The brain damage was just too severe. Nine years later, she walks, uses a touchscreen computer and I've just been shown she can learn to construct sentences and do simple math with the right piece of technology. Along the way, I discovered I needed to teach myself what Hannah's rights to services really were. Learning about early intervention services led to reading about IDEA and then to EPSDT. I've been waiting for the Obama administration to realize the power and potential of EPSDT for the medical rights - including the right to stay at home with their families - of children with disabilities. The health reform people talk about long term care, and the disability people talk about education and employment, but nobody is talking about EPSDT. So I am.