It has been suggested to me that the continuing failure of Medicaid to provide my little girl with medically necessary catheters could have ramifications for quality of care and/or access to care issues.
I've emailed CMS to ask if they can help get Hannah the equipment prescribed for her last Friday.
It is just too sad a commentary on how easy it is to victimize a child with disabilities who cannot possibly speak up in their own defense.
Thursday, May 6, 2010
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About Me
- 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.
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