Thursday, July 2, 2009

Over 31 million kids covered under EPSDT are losing their federal entitlement services

The post I'm copying in below is how I feel personally about the things I've been reporting. I can't understand how a country can save money on the backs of little kids who are sick or have disabilities and absolutely no one is paying attention. The most recent figures are from 2007, but they show then there were more than 31.5 million children eligible for EPSDT. EPSDT has to be the least-written about Federal program out there. I searched on the GAO's website, and found three references to it, the most recent from 2007. The Center for Medicaid and Medicare Services hasn't updated their page defining EPSDT for about that same length of time. EPSDT grants more than 31.5 million kids who are sick and uninsured or poor or have disabilities the right to be cared for at home by their parents and friends. It grants them a civil right to every service a doctor says is medically necessary, under the economic supposition that money spent now is less money spent in the future. In fact, study after study has shown that states actually save money on their medicaid budgets by providing home based community services waivers rather than if they had to pay for institutionalization. Moreover, according to a June 2009 report from the Kaiser Foundation,
children represent only 17 percent of total Medicaid expenditures, demonstrating that per capita spending on children is the lowest among all beneficiary groups.
Yet for some reason, the "terrible cost of doing nothing" right now is that these same 31.5 million kids are having their rights stripped away by the states. A May 29 letter written by Disability Rights California succinctly states the basic problem: EPSDT is a federal entitlement, and as such the state cannot eliminate the services it pays for.
EPSDT, like most other Medi-Cal services, is an entitlement, so state General Fund expenditures for EPSDT have been driven by the increases in entitlement for these services that are mandated by federal law. The state cannot eliminate the federal entitlement to EPSDT services unless it gives up all of its federal Medi-Cal matching funds - so essentially this will result in an unfunded mandate to the counties.
But the states are doing it anyway, and nobody in Washington is paying attention. Unless someone does, who is going to help more than 31 million kids get the medical care they need? Here is my post on

The title of your post, "The Terrible Cost of Doing Nothing" applies to something else going on in our country right now, something that violates civil rights while providing a perfect example of why we need public health coverage. Last Friday, a Kentucky newspaper reported that the DHS Office for Civil Rights was investigating whether state medicaid cuts directed at services for individuals with disabilities constituted a federal civil rights violation. At least 17 other states have made the same type of medicaid cuts as Kentucky. Seven states already have pending court cases alleging the same civil rights violation. These 18 states have already received more than $2.5 billion in additional FMAP grants. Technically, Section 5001 of the ARRA says a state can't receive this FMAP funding if they've cut their home and community based waiver programs since July 1, 2008. Any cuts made since then were supposed to be restored before FMAP grants would be released. Adding insult to injury. states like Hawaii have turned their medicaid programs, including EPSDT, over to profit-making insurance corporations. These MCOs make EPSDT decisions based on the profit margin, not the child's need. Title XIX gives children under 21 with disabilities a civil right to any service their doctor says is "medically necessary." First, Title XIX defines a program called EPSDT that allows all children on medicaid to receive any "medically necessary" service (including rehabilitative, arguably habilitative, environmental or technological). It then goes on to create a special set of programs called Home and Community Based Waivers, so that children and adults with disabilities (and a growing number of other special health care needs) can received medicaid based on their care need, not their personal income and assets. It is these waiver programs that are being reduced across the country. EPSDT isn't picking up the slack because either nobody knows about it or knows how to access the funds, or are getting turned down. Meanwhile millions of children and adults with special health care needs, along with their caregiving family and friends, are being threatened with institutionalization. Medicaid proves that neither states nor private companies can make unbiased decisions about medically necessary care for one of the weakest groups in our society. These same entities certainly can't be trusted to make unbiased health care decisions for anyone else. Yet the structure and the laws are there. The civil rights have been granted, the budgets are presumably there (I understand that state EPSDT budgets are supposed to be maintained separately) but Medicaid needs to be administered publicly. I write a blog on EPSDT and the medical civil rights of children with disabilities. All my sources are there.

1 comment:

  1. I saw your comment on Stand with Dr. Dean and searched for your blog. I'm glad I did! You are a great source for info, all in one spot. Thank you!


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.