Thursday, January 7, 2010

How Hannah Got Her Dynavox

On Monday I posted on here as the frantic mom of a disabled child.  After five months going back and forth with UnitedHealth, DOH and DHS, my private insurance carrier had approved the "medical necessity" for Hannah's Dynavox purchase and all UnitedHealth had to do was sign off for the 25% deductible.

Late last year, Hawaii's Department of Human Services had already put   in writing that devices like the Dynavox were covered by EPSDT, and that UnitedHealth was responsible for paying out for EPSDT services and items.

After I posted, I received two emails from UnitedHealth calling into question the approval from my primary carrier.

Tuesday morning Dynavox emailed me that my private carrier had had at least two phone calls from UnitedHealth the previous afternoon, related to the Dynavox.

I then filed a complaint for retaliation under the ADA with the Department of Justice Civil Rights Division, and copied the federal regulators I've been communicating with in CMS (Centers for Medicare and Medicaid Services) and the DHHS Office for Civil Rights.

Late Tuesday afternoon UnitedHealth agreed to pay the deductible.

It still took them almost 24 hours to fax Dynavox the piece of paper needed in order to order my daughter's communicator. Dynavox is in Pittsburgh, so another day had gone by with the only victim being my daughter.

This morning I had the confirmation from Dynavox that all paperwork was received and her machine is being sent out to her today.

If you are the parent of a special needs child who is covered by medicaid, you can use your child's legal rights under federal Medicaid law to obtain medically necessary technology. Here in Hawaii, this has a huge significance because it means we don't have to go through the Department of Education. A pamphlet for parents published by the CMS in 2004 describes the simple process for a parent to obtain medical services through their Medicaid insurance carrier.

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About Me

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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.