Saturday, April 25, 2009

Uploaded 41 documents of published reports in one place

I don't have it organized yet, but this is a good portion of the research library I've been using to try to track what's happening with EPSDT and its federal-promised funding. EPSDT guarantees the funding to keep our children with disabilities at home with us, in our communities, based on the need of the child. So why isn't everyone getting what their children need? And what is happening with these federally guaranteed funds given all the medicaid spending cuts states are rushing through in advance of receiving their federal stimulus funds. What is happening with the money for our children's medical needs?

Disability Rights Action Alert for California

Over 2000 people marched on California's state capitol yesterday protesting a second set of proposed cuts in services for people with disabilities and other special health care needs. Legislation is pending that would function to cut disability community-related services for a second time. I don't have the legislative contacts, but it seems that contacting the California Disability Community Action Network is a good place to start.

Thursday, April 23, 2009

Disability rights action alert for Louisiana

Lousiana is threatening a second set of cuts affecting solely the disability community in Louisiana. In February Governor Jindal (yes, the same Governor Jindal who wants to turn down federal stimulus funds) cut 35% from the budgets of some of the state's programs for individuals with disabilities. A second round of cuts in the state legislature would raise that figure to 7.5% to 12.5 % in cuts for those same programs, plus all other disability programs facing a new 4 to 7 % cut. What's important to remember is that everytime a state cuts $1 from services for its population with disabilities, they are also giving up more than that in matching federal funds. For Louisiana, the state loses $4 in federal funds for every $1 in state budget cuts. How does this make sense???

Do you know your child may qualify for Medicaid based on their disability?

Over the years I've lurked around more internet discussion groups of parents whose kids have similar medical problems than I can remember. One of the things that I've noticed far too frequently is that parents frequently aren't aware that their child can qualify for Medicaid (and hence for EPSDT) all of their own. Every state has what are called Medicaid Waiver Programs. This is a wonderful website where you can look your state up and get the contact information for every waiver program offered in your state. The figures are from 2005, but it gives you a great jumping off point to find out what to look for on your own state's website. Waiver programs don't look at the income and assets of the family -- they only look at the income and assets of the individual. For kids with disabilities, each state has different programs, some including autism-specific programs. Don't assume that if you child qualifies for a Medicaid waiver program, somebody somewhere along the line would surely have told you so. Between the waiver programs and EPSDT, if your child requires skilled care, your child will get it. If they need nursing, they get skilled nursing. If they need a full time attendant, they will get it. Whatever a doctor says is medically necessary for your child, your child will get it. That isn't to say that the state is going to hand you the services as soon as you ask for them. But the start is knowing that your child is entitled to them. The process of fighting for them is worth the effort, because nobody can tell you how far your child could progress if they really truly received all the services they need.

You can't assume that anyone else knows the law

I think that over the past decade or so, the hardest lesson I've had to learn is I can't assume that anyone else really knows about the law. And while I'm talking very specifically about EPSDT, that general statement applies to most of the laws benefiting individuals with disabilities. This tiny little part of federal law gives very distinct, separate civil rights to medical care to our children, rights that they lose after they turn 19 or 20 or 21 (depending on the state, the limit of availability of EPSDT services). It's an ignorance that applies just as much to the people who are trying to help our children, the health activists and the attorneys all over the country fighting their individual cases against the states one by one, as to the state bureaucrats whose job it is to enforce it. The state medicaid waiver programs and EPSDT are supposed to work together to ensure that children with disabilities receive all the care a doctor says is medically necessary. If you need to take your child to a specialist in another state, the cost of transportation, hotel, food and ground transportation is supposed to be provided for the child and a companion. If your child is using a feeding tube and your doctor says one extension tube a day is essential to maintain health and safety conditions, then that is what you should be receiving every month from your medical supply company. And if the doctor says your child is medically fragile and requires 24/7 skilled nursing in your home, then this is what your child should be receiving. This may sound mundane to many people, or simply not a big issue, but there's absolutely no way to say how many children with disabilities could live longer lives if professional nurses were helping with their care? How many children would have a way to communicate with their families if they received the proper treatment, evaluations and technology to enable that communication. To put it simply, how many immobile children would be walking if they had received five or ten hours of physical therapy a week instead of thirty minutes. This is what we, as parents, have to fight for.

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?

Idaho takes a swing at the Olmstead Act

The big thing in state cuts seems to be aimed at reducing the services that allow kids as well as adults with disabilities on Medicaid to stay in their family homes. Back in 1999, the Supreme Court stated people with disabilities could not be segregated in institutions, and the states must fund supports and services that allow these individuals to be cared for at home, in their own communities. It's referred to as the Olmstead Decision, and Idaho appears to be trying to violate it. According to this article, there's a court case in Idaho in response to the state's attempt to cut home services to individuals with disabilities. The article says that approximately 900 individuals with disabilities will be at risk of institutionalization if the state does not reverse its position. It also mentions, and this is the really important figure, that It makes absolutely no financial sense to reduce these services. The state (Idaho presumably) spends $200,000 per year per person in an institution, versus a cost of $20,000 to $50,000 per person per year to provide home based services. If you know anyone in Idaho who could be affected by this court case, please pass this information along to them.

Monday, April 20, 2009

Action Alert for Texas

Essential state legislation to benefit 88,000 state citizens with special health care needs has apparently been put on the back burner. Here are the links to the legislation in question.

Thursday, April 16, 2009

Taking from the weak to give to the strong?

Disability rights and medicaid activists have been counting on wording in the stimulus bill to prevent states from re-directing stimulus funds away from critical areas such as medicaid and education funding.  Here in our wonderful state of Hawaii, for instance, our governor first tried to say she was going to used Medicaid funds to make up other state budget shortages, and when complaints arose, she shifted her position to using stimulus funds destined for education instead.
I've read that Palin is trying to do the same thing in Alaska. 
Whichever way you want to look at it, it boils down to taking money away from our children and family members with special health care needs, and using it instead, to, say, pay some other state bureaucrat salaries.
But apparently the government is now trying to decide that this kind of shifting of funds might be OK.  An online article mentions that the part of the government overseeing Medicaid and Medicare has said it's alright for states to shift the use of stimulus finds away from care for the elderly, and those with chronic medical conditions and/or disabilities to make up for other state budget deficits.
This is wrong.  It's appalling.  It's another example of hugely misplaced priorities.

How EPSDT is supposed to guarantee services from your school

In 2004, a brochure was published by the US Department of Health and Human Services explaining to the parents of children with disabilities how EPSDT would help them. EPSDT - Supporting Children with Disabilities was published in September of 2004. Flip to page 17 and you'll find the following rather extended quote:
A special case of how EPSDT covers medically necessary services occurs in the education system – where many children receive their services. Many children with special needs receive a wide variety of services through the public school system. They range from academic services, such as reading and math instruction, to more health-related services, such as physical therapy and personal care. Trying to figure out who is responsible for paying for which services can be very confusing. However, schools can (and many do) bill Medicaid for reimbursable services under EPSDT. Medical necessity is just as important here as it is outside the school system. According to the federal government, “Medicaid is the payer of first resort for medical services provided to children with disabilities pursuant to the Individuals with Disabilities Education Act (IDEA).”5 In other words, Medicaid eligible children with disabilities are entitled to receive medical services in the school setting, paid for by Medicaid, if two important requirements are satisfied. First, the school/school district must be a participating Medicaid provider. Second, the services must be written into the child’s IEP/IFSP, which automatically makes them considered medically necessary.
My child's school district is a Medicaid provider. Assuming this is true, then how on earth can they justify denying services requested by her doctors over and over again? If you're the parent of a child within the special education system, you may or may not be having difficulties with your school system. Many of us have experienced the feeling of walking into a room with 15 or so teachers, and the only chair left is one that's kid-sized. It usually doesn't bode well for the rest of the meeting. Be that as it may, the point is that the Federal government appears to be saying that our children are entitled to everything that one of their service providers says is medically necessary. The list is extensive, and it's on page 14 of the brochure. Take this brochure and give it to every caregiver and parent of a child with special health care needs. Please.

Tuesday, April 7, 2009

Why isn't the disability community talking about EPSDT?

I'm the mother of a child with multiple severe disabilities. She's legally classified as medically fragile, and she's needed to have her own attorney since she was 3 in order to ensure her federally mandated civil rights weren't violated. I'm going to start off by saying that I think every politician in this country should be appalled by the fact a 3 year old who can't even crawl let alone walk, is blind and having constant seizures needs a lawyer. What have we come to as a society when our weakest members are trodden upon by the very bureaucrats whose job is to help them? I've spent thousands of hours over the past decade researching my daughter's conditions on the internet. Along the way I've joined more Yahoo groups and discussion forums than I can remember, as each new diagnosis led to a new set of questions. About a year into this journey, someone mentioned EPSDT to me. It's an acronym for Early Prevention, Screening, Diagnosis and Treatment, a federal program for children on medicaid defined under our Social Security Act and codified in law. What began as a way to advocate successfully for my daughter's medical care has eventually turned into activism. EPSDT provides all children with disabilities the right to all medical care that the child's doctor says is "medically necessary". There are no ifs, ands or buts about it -- and in spite of various legal attempts by states to narrow the definition of "medically necessary", the statement stands as is, with no conditions. According to a US government written pamphlet on EPSDT, if a doctor says your child needs 24/7 skilled nursing in order to stay at home, then the state medicaid program must provide this. If a doctor says your child needs an augmentive communication device and 2 hours a week of specialized therapy, then either medicaid, or your local school system (if your child is over 3 and your school district can bill medicaid) has to pay for the device and therapy. I'm on one forum where most of the children are functioning below the age of a one or two year old infant. They did a survey recently, and I was appalled to see how few of the families on that list received significant nursing services through their state medicaid programs. The inequality in services not just from one state to another, but sometimes from one city to another in the same state, is atrocious. The election gave many disability rights activists a chance to let their voices be heard. One of the things that became apparent from what was happening on and other groups was that the disability community in some ways had become so fragmented by specialization that pulling together for one goal was a challenge. As a result, for instance, medical marijuana drew more votes than equalizing care for individuals with disabilities did. I'm not commenting at all on the medical marijuana issue. But why should equal care for the weakest members of our society be of so much less importance to the American public? In the past eight months or so the various political issues involving disability rights have been gaining prominence. That hasn't necessarily been a good thing, as much of the prominence has evolved from a growing negative impact upon the disability community. Beginning last summer, I noticed a growing number of moms on the disability forums mentioning their states were cutting services: one state cut diapers, another cut the formula for people who depend on surgically installed tubes in their stomach for their food, and a third cut the personnel services that enable individuals with special health care needs to stay in their homes, with their families, rather than being placed in institutions. Which all gets back to my original question -- why isn't the disability rights community talking about EPSDT? Funds provided through EPSDT are federal and can't be cut. The services can't be cut. Even where states are working hard at limiting what are called medicaid waiver services, the benefits of EPSDT are expected to continue as a "wrap around." So why isn't anybody talking about EPSDT? With all of the disability-related posts on and, there was no mention of using EPSDT to further medical care for individuals with special health care needs. That's why I'm doing this blog. I've been doing research on EPSDT for years now, and want a place to post it all. There needs to be a place where the only criterion for interest is in people with special health care needs, whether they're elderly, have a disability or are suffering from a chronic illness.

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.