Tuesday, April 21, 2009

January 2009 report highlights state inequalities in federally mandated medicaid care

The University of California's San Francisco Center for Personal Assistance Services published a study in January 2009 that fairly effectively condemns the way the states have mauled and mishandled the medical civil rights of individuals in our society with disabilities. I stumbled across it researching something else, and it's actually the reason I started this blog. The states appear to be openly violating or threatening to violate the Olmstead decision. The inequalities in medical care from one state to another are appalling, and even within a single state can be monumental. This paragraph from the article sums it up:
Widespread inequities in access to Medicaid HCBS exist across states. The average number of Medicaid HCBS participants was 9.4 per 1,000 population, but ranged from 3 to 15 per 1,000 population in states in 2005 (a five fold difference across states). Annual HCBS expenditures per capita averaged $118 in 2005, but varied from $30 to $363 in states in 2005 (a 12 fold difference). The limited access to services and spending in some states creates hardships for individuals who need services in those states and may lead to unnecessary institutionalization. Federal policies should increase access to HCBS and ensure equity in access to Medicaid HCBS across states, which would require additional federal and state funding and setting uniform eligibility and need standards for HCBS.
HCBS means Home and Community Based Services. These are the services that have developed as a result of the Olmstead decision and which enable our family members with special health care needs to stay in their homes, with their families. But again, here's what the UCSF report states:
Medicaid home and community based services (HCBS) has been the focus of widespread efforts by the federal and state government to expand access for several reasons. First, there is a growing demand by individuals to remain in their homes for as long as possible rather than to live in institutions. Second, the Supreme Court ruled in the Olmstead case in 1999 that individuals have the right to live at home or in the community if they are able to and choose to do so, rather than to be placed in institutional settings by the government. Third, a number of subsequent lawsuits against states have encouraged states to expand access to HCBS. Finally, in the past decade, the federal government has provided a number of initiatives and resources to assist states in complying with the Olmstead decision and in rebalancing their services from institutional to HCBS. In spite of these efforts, there are inequities in access to services and many individuals have unmet needs for HCBS.
The legalities seem perfectly clear to my brain which is why I don't understand why state and federal bureaucrats aren't doing anything about this problem. Federal law and the Supreme Court say the elderly and developmentally disabled citizens of our country are entitled to the services that allow them to remain in their homes instead of being institutionalized. Yet as the Hall of Shame shows, states all over the country are cutting back on these services. And that's on top of existing inequalities, as reported in the UCSF document. In 2005, prior to the report and all the current cuts,
Annual spending on Medicaid home and community-based services averaged $12,627 per person in 2005, but this ranged from $5,822 to $37,052 in states and varied across the different programs.
Obviously the amount of care received for less than $6000 a year is substantially different than the level of care received for more than $37,000 a year. With such gross inequalities in federally defined medical care, how can we continue to ignore the further cuts which are going on now? For all its great points, the report only mentions EPSDT one time. Children on medicaid under the age of 21 (or 20 in some states) are automatically eligible for EPSDT funding. EPSDT is supposed to cover home health services. So if states are cutting these services, and EPSDT funding is sitting in the state's treasury to pay for these services, how are these cuts happening?

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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.