Friday, July 17, 2009

New documents on Scribd regarding EPSDT and recent CMS rulings

I've just posted quite a few new documents to Scribd. The good news (and I'll write more about it later) is that CMS has now endorsed the following statement it made in May of 2003:
The Early and Periodic, Screening, Diagnostic, and Treatment (EPSDT) provision is Medicaid’s comprehensive and preventive child health program for individuals under the age of 21. ESPDT services include periodic health screening, vision, dental, and hearing services. The Medicaid statute also requires that states provide any medically necessary health care services listed in section 1905(a) of the Social Security Act (the Act) to an EPSDT recipient even if the services are not available under the state’s Medicaid plan to the rest of the Medicaid population.
The Individuals with Disabilities Education Act (IDEA) was passed to “assure that all children with disabilities have available to them… a free appropriate public education which emphasizes special education and related services designed to meet their individual needs.” The IDEA authorizes federal funding to states for medical services provided to children through a child’s Individualized Education Program (IEP), including children that are covered under Medicaid. In 1988, section 1903(c) of the Act was amended to permit Medicaid payment for medical services provided to Medicaid eligible children under IDEA and included in the child’s IEP.
While schools are legally liable to provide IDEA-related health services at no cost to eligible students, Medicaid reimbursement is available for these services because section 1903(c) of the Act requires Medicaid to be primary to the U.S. Department of Education for payment of the health-related services provided under IDEA. Medicaid covers services included in an IEP under the following conditions: • The services are medically necessary and included in a Medicaid covered category (speech therapy, physical therapy, etc.); • All other federal and state Medicaid regulations are followed, including those for provider qualifications, comparability of services and the amount, duration and scope provisions; • The services are included in the state’s plan or available under EPSDT; and • The medical service must be provided to a Medicaid eligible student.
Put this together with the 1980 DOE pamphlet on EPSDT and the schools, and new horizons for getting our kids the help they need have opened.

Friday, July 3, 2009

America's Two-Headed Dog: Layoffs and Cuts to Social Programs

(This is a response I left to an article on The Huffington Post.) What's left out of the debate is the fact that many of these social welfare cuts are actually federal civil rights violations, and that the states have already received new federal grant money to pay for them. According to the ARRA website, by March 31 the states had received more than $15 billion in federal grants to be dedicated to medicaid programs. In order to get that money, the states could not have "eliminated coverage for home- and community-based waiver care that costs more than institutional care" since July 1, 2008. Since the nineties, reports have been published around the country showing that home and community based care services are always a cheaper alternative, program-wide, than institutionalization. The DHS Office for Civil Rights is now investigating whether such "home-and-community-based" services medicaid cuts are violations of the civil rights of individuals with disabilities. Similar civil rights complaints are pending in six states. So what have the states spent the $15 billion on? Here in Hawaii, the "home-and-community-based" program was cut by 65% - $14 million. Hawaii has already received more than $70 million in ARRA medicaid grant funds. But services are still being cut. The GAO recently called for oversight of what's happening with the ARRA funds once they go to the states. Apparently that's where the "transparency" stops. And kids who need those services in order to stay home with their loving families and caregivers are being threatened with institutionalization. It's barbaric. Read the Article at HuffingtonPost

Shirley Hufstedler and EPSDT

If you're not familiar with her name, Shirley Hufstedler was the very first US Secretary of the Department of Education. Jimmy Carter appointed her, and according to Wikopedia, said that if he'd had an appointment to make to the Supreme Court, it would have Hufstedler. During the fourteen months that she served as the Secretary for Education, a brochure on EPSDT was jointly published by Hufstedler's DOE and the Health Care Financing and Public Health Administrations of the Department of Health and Human Services. The 1980 brochure (the date is handwritten on the cover of what I found on the internet) is titled "EPSDT - A How-To Guide for Educational Programs." As a parent who has spent the past seven years advocating separately for my daughter's rights under IDEA and EPSDT, this is strange news. On page 17, it clearly states that there should be only a single care plan for each child, so that services received under EPSDT are clearly delineated in the IEP. It's a fascinating document on how all the civil rights of our kids with disabilities were supposed to be cared for by an integrated system working towards individualized goals and accomplishments for each child. A second document, targeted specifically for parents, was published by DHHS in September, 2004. It says the same thing about joint EPSDT/IEP care plans. If any parent reading this has such a thing, would you please let me know? In other words, home care, nursing care, additional speech, physical or occupational therapies (in addition to those paid for by DOE), assistive technology, all marked as paid by EPSDT, are in your child's IEP?

Thursday, July 2, 2009

New resources uploaded to Scribd

I've uploaded some newer documents to Scribd. 1. CMS in March of this year updated their database for the number of children eligible for EPSDT, at least as of 2007. One report is national in scope, the other breaks it down by state. Figures are provide by the states. There are no budgetary figures at all. Even with the states having the benefit of filling out the forms themselves, the national study still shows that nationally only about 58% of the 31.5 children eligible for participation actually received any service. The older the child got, the lower the chance was that they were receiving services at all. 2. A GAO report published this April discusses the needs for transparency and accountability in state use of ARRA funds, including the FMAP funding for medicaid. Interestingly, the report also mentions that state officials were concerned the additional federal funding didn't include enough money to pay for more state employees to provide oversight of all the new programs. 3. A number of local reports have been published showing that medicaid home and community support programs are much more cost efficient than the only alternative, institutionalization. Reports range from a Washington, D.C. report released in April 2009, to a 2000 report from New York. There's also an NIH report from 2003 showing the same thing. 4. This is an interesting document I found on George Washington University's website, but can't find was it was linked to. It has a state by state listing of language with regard to EPSDT services that must be included in a state's contract with a Managed Care Organization. The wording is great; it's just the lack of monitoring and enforcement that's the problem. 5. Here's an undated working draft from CMS of a brochure on how to strengthen state medicaid waiver HCBS services. 6. A wonderful report from the Kaiser Commission on Medicaid stating in very clear language what the purposes and benefits are of EPSDT. 7. Here's another article from the GWU website, with EPSDT language to be included in every state's EPSDT RFP. Happy reading.

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.

About Me

My photo
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.