Sunday, August 8, 2010

Feds Acknowledge Civil Rights Status of "Medical Necessity" for Children with Disabilities

Letters issued by the federal DHHS Office for Civil Rights to two Hawaii mothers acknowledge children with disabilities have a civil right to medical services that are "virtually unlimited in terms of funding ...  as long as services are medically necessary."

In both cases, OCR gave priority to the children's treating physicians' recommendations for "medical necessity" over those imposed by state or private Medicaid providers.  This action is in keeping with three federal court decisions made late last year, all of which ruled state Medicaid officials or private providers could not deny or limit what a child's treating practitioner said was "medically necessary."

The letters were in response to complaints filed with OCR by the mothers about nine months ago, alleging that threatened cuts in home skilled nursing services violated their daughters' civil rights under EPSDT.  In December, OCR acknowledged that the office's oversight of Olmstead violations extended to rights under EPSDT.  In February, the office opened formal investigations into both girls' cases.

The letters were formal notifications the cases are being closed at this time.  Federal regulators from the Center for Medicare and Medicaid Services have apparently assured OCR that both girls are currently receiving 24/7 skilled nursing from a combination of sources, and therefore at this time the girls are not at risk of institutionalization. 

OCR investigates "covered entities" which can include a state developmental disability program, but not the privately owned, for profit insurance companies also responsible for providing services. However both letters quote CMS stipulating an apparently agreed-upon service coverage by UnitedHealth, the particular company providing Medicaid services to both girls.

Should this situation change for either girl, OCR can immediately re-open the cases.

As of April 30, 2010, both girls are covered by a new federal definition of medically frail children.  42 CFR 440.315(f) states:  
" ...the State's definition of individuals who are medically frail or otherwise have special medical needs must at least include those individuals described in §438.50(d)(3) of this chapter, children with serious emotional disturbances, individuals with disabling mental disorders, individuals with serious and complex medical conditions, and individuals with physical and/or mental disabilities that significantly impair their ability to perform one or more activities of daily living."

 Since one of the two girls is my own daughter, I am publishing the letter we received from OCR.

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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.