When the state threatens to institutionalize your kid

This country has come to a sorry place indeed when state government employees are so accustomed to discriminating against Americans with disabilities that they would threaten a mom with institutionalizing her child during a formal hearing. That's what happened to me on September 9, at the formal appeal hearing with Hawaii's Department of Health over cuts they are trying to make to my daughter's nursing services. In all fairness, what was specifically said, multiple times, was that children "like your daughter" don't live at home, they live in institutions where the costs are lower. The costs are lower because the children then don't require one-on-one nursing all day, they're just one of a dozen or more that a nurse covers in her rounds. Shaken, I finally asked the state employee if he was threatening to take Hannah away and institutionalize her. He said no, but continued to refer to children "like Hannah" being typically cared for in medical settings, not their family home. Hannah is medically fragile, and her brain is in status seizure for 90% of the time she's sleeping. During the day, her brain has seizure spikes almost constantly. Her diagnoses are a bunch of acronyms like CSWS, ESES, MISDs, CP, GERD, and then there's the cortical blindness and inability to eat through her mouth, all due to brain damage at or before birth. But at age 10 she walks, talks (although it's extremely difficult to understand her), uses a touchscreen computer for learning, and a recent evaluation says she's ready to learn basic sentence structure and math. The only way to make her one of a dozen kids on a nurse's rounds is to lock her in a cage so she can't move about, and hope she doesn't have a full-blown seizure and die before the next one. And doing so against my will is violating my daughter's rights as an American with disabilities, as a child on Medicaid, and as an individual with developmental disabilities participating in a state waiver program authorized under Social Security Act Title XIX, Section 1915(c). Hawaii, like many other states, has been flagrantly targeting children as well as adults with disabilities for major cuts in the services paid for by Medicaid that allow them to remain at home with their families and in their communities. This is happening in spite of the fact that the federal government has already given the states more than $28 billion that can only be spent on Medicaid, and was intended as stimulus funds to bring immediate relief to state populations. At Hannah's hearing last week, the state testified that they were allowed to make across the board cuts to Medicaid service budgets because state law said they could only pay for services as they had the state and federal funds to do so. I asked why Hawaii wasn't spending any of the $170 million they had already received as Medicaid stimulus funds to restore services, rather than insist on cutting them. (Actually I made a mistake -- the federal government has made $171 million available to Hawaii so far, but the state has only banked about $131 million of it.) The employees of the state Department of Health mumbled to each other, and responded they weren't prepared to answer the question. The state also testified that they ordered the cuts in December 2008 because if they hadn't, the Developmental Disabilities Division would have run out of funds by the end of the fiscal year (June 30, 2009). So I asked why, if they found themselves running out of money in December, they didn't simply restore the $14 million they had cut out of the FY2009 budget, which represented about 65% of the Division's total budget. Nobody had an answer for that question either. That's when I decided that we need to get our federal government to pay attention to the rampant discrimination against Americans with disabilities that is taking place. There is such a simple way to correct it -- the CMS issued a letter to the states in July 7, 2009, which let the states off the hook for cutting medicaid services in order to receive their stimulus money. Just rescind it, and make sure the states are actually spending their Medicaid stimulus funds, especially to restore previous cuts in home and community based services. Please take a look at our petition and consider signing it.

Are 10 of our 50 states committing daily violations of the civil rights of our citizens with disabilities?

I've been having to devote time to my little girl's seizure issues, and my own struggle with our state waiver program over proposed cuts in her nursing hours. So I missed the comment from UCP from my last article and didn't see it until now. I hadn't had a chance to post yet about Alaska's HCBS programs being shut down by CMS, which brought to ten the number of states with either civil suits pending or ongoing federal investigations over cuts made to HCBS services. That means twenty percent of our state governments are possibly committing daily violations of the civil rights of their citizens with disabilities. This is just dead wrong.

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.

New lawsuit filed in Pennsylvania alleging Olmstead violations

Pennsylvania has now become the sixth state I've learned about that has a pending court case based on violations of the civil rights of individuals with disabilities.

Two Federal Judges React in Two Completely Opposite Directions Regarding Medicaid Home Services Cuts

In the past six months, federal judges in both Tennessee and Hawaii have had to rule on whether cuts in home and community support services (including PAs, and skilled nursing) pose a violation of the ADA and Section 504. In Tennesee, the judge has granted injunctive relief to the plaintiffs. Here's a summary of the case presented by the National Health Law Project. Here's a summary of the decision by the Hawaii federal judge, stating she lacked subject matter jurisdiction on the matter since the plaintiffs had yet to suffer harm. I'm not a lawyer, but this doesn't make a whole lot of sense to me.

Hawaii Receives $70+ Million in Federal Medicaid Funds While Maintaining Service Cuts

According to the Federal Department of Human Services website, Hawaii received $70,573,033 in Federal Matching Funds (FMAP) for Medicaid prior to March 31, 2009. Hawaii's state medicaid Director, Dr. Ken Fink, has confirmed that Hawaii has been pulling on the funds available through the ARRA's section 5001, which will provide the state with an additional $360 million just for medicaid prior to October 2010. So why is Hawaii refusing to reinstate home and community based service cuts implemented since last July of 2008? Why are parents and caregivers being threatened with having a third round of cuts in the services that enable their children to remain at home and in their communities? Where is Hawaii spending the money? First, I want to clarify that Dr. Fink has stated I am wrong in my earlier posting suggesting Hawaii was violating the Maintenance of Effort (MOE) requirement for receiving the additional federal medicaid funds as stipulated in the American Recovery Act (ARRA) passed earlier this year. Second, I want to clarify that I continue to doubt the extent to which Hawaii's medicaid cuts are allowed under the MOE requirement. Hawaii needs to reinstate all the cuts made to home and community based services and waiver programs as soon as possible, since the deadline for compliance with the MOE is July 1. The latest word by CMS, the government agency responsible for policing and defining states' use of the 5001 federal funding, states clearly that:

several states have made or proposed changes to programs that help seniors and people with disabilities live independently; CMS guidance clarifies that any changes to such waiver programs that would result in fewer people being enrolled would violate the MOE requirement for the increased federal Medicaid funding. As a result of this guidance, states will have to reverse these cuts or rescind these proposals, at least until December 31, 2010

The state of Hawaii has eliminated all of its home and community based waiver services except for the program for the developmentally disabled, and radical service cuts in that program are placing the state in potential violation of the ADA and the rights granted under the Olmstead decision. Interesting, a Performance Report printed by the DDMR division of the Hawaii state department of health in September of 2008, showed FY 2009 expenditures dropping 65% from FY 2008, from more than $20 million annual to only $7.2 million annually. That's a $14 million cut in the services that enable adults and children with special health care needs to remain at home, with their families. On the other hand, the state seems to be requiring an additional $10 million over FY2008 for administrative positions, mostly related to what the state budget keeps referring to as the "proposed Division-wide reorganization." Do we know anything about this reorganization? Why is DDMR disappearing? Who is going to take over providing the financial supports for the home and community care our citizens with special health needs require? The only answer I can come up with is that Hawaii's two new medicaid managed care companies are supposed to be picking up the slack from the waiver programs. The only problem with that solution is that the definition of a "budget neutral program" is completely different for a medicaid program authorized under Section 1115 of the Social Security Act than it is for a medicaid program authorized under Section 1915. And that difference results in a shift in expenses from actual services to employee salaries and insurance corporation profits. Back in 2006, the UCSF National Center for Personal Assistance Services issued a simple explanation of the different budgetary ramifications for 1915(c) waivers as opposed to 1115 programs:

Like 1915(c) programs, 1115 programs must be budget neutral. However, for 1115 programs this means that the program cannot cost Medicaid any more than the state would have spent in the absence of the waiver1, 26 whereas 1915(c) programs should not cost more than providing state plan services, such as nursing home care, to the same population.

In other words, Hawaii's new 1115 Managed Care Medicaid Organizations can't spend any more funds than they would if there were no waiver participants. Excluding from the budget neutrality calculations any funds for an individual, say, with developmental disabilities on a 1915 waiver, is going to reduce precipitiously the budget compared with what would be allowed counting all those previous HCBS waiver participants back into the figures. But all of this was originally calculated before Obama was elected and the ARRA was even being dreamed about. So what is Hawaii spending the money on? It's not on the children and adults with disabilities who desperately need to remain at home with their families and communities. The CMS specifically states that:

To be in compliance with the MOE, a state cannot have done the following after July 1, 2008: ... Eliminated coverage for home- and community-based waiver care that costs more than institutional care, which could make it harder for some individuals to qualify for waiver coverage.

All of the 1915(b) waiver participants who have been switched to an 1115 program can no longer receive all the services they were entitled to previously. Which is why the insurance company giants operating Hawaii's medicaid MCOs are telling parents not to ask for more in home nursing care because if it's cheaper to throw the kid in an institution, that's what they'll do. This would seem to me to be about as blatant a violation of the MOE requirement as you can have.

Is Hawaii violating Federal Requirements for Receiving ARRA Funding?

Hawaii is due to receive an estimated $360 million in additional federal funds for medicaid from the American Recovery and Reinvestment Act (ARRA). The state should have already received over $70 million of those funds. However, the ARRA requires that states must meet a set of requirements in order to receive this funding, intended to protect the civil right of children and adults with disabilities to remain in their homes with their families. Hawaii appears to have violated some of these requirements. On February 1, 2009, Hawaii wiped out four of its five 1915(c) HCBS waiver programs. The chart distributed by the state showed that only the developmental disability (DD) program remained, and only until 2011. On February 1, 2009, Hawaii dumped all its medicaid participants into two managed care organizations: Evercare run by United Healthcare from Minnesota, and Ohana, owned by Wellness of Florida. What that meant in legal terms is that all the previous HCBS waiver participants were switched without their knowledge from a program with the protections of Section 1915(c) of the Social Security Act, to a Section 1115 experimental project (with a 5 year lifespan) run by two for-profit managed care corporations. In so doing they lost federally defined and protected civil rights to medical choice and staying in their homes. On January 20, Hawaii's state medicaid director sent an email to various state legislators stating that:

The DD/MR long term care services are being preserved as a 1915(c) waiver and are not incorporated into the 1115 waiver of QUEST and QExA

On February 1, 2009, this same "robust menu of services which includes Skilled Nursing, Respite and Personal Care services" were cut by anywhere from 15% to 70% for virtually everyone in the DD waiver. This included children within the age bracket covered by EPSDT. (As an aside, what nobody knew was that the two MCOs had been told that any services in place on February 1 could not be changed for 90 days. So if you (a parent or caregiver) had made an informal appeal before February 1, your family member's services could not be cut for at least 90 days. Nobody told us that, though, until after February 1 had come and gone.) Now the state is admitting they are considering another 15% cut in DD service budgets. State DD officials are telling parents to go to their new medicaid MCO to access EPSDT funds for home support services. According, once again, to Hawaii's state medicaid director,

Any EPSDT service required to be medically necessary will continue to be provided.

But a parent was just told by their representative at one of the MCOs that since institutionalization of her medically fragile child would only cost $7,000 a month, the family had better not ask for skilled nursing services that exceeded that. The parent has letters from two of her child's doctors stating 24/7 skilled nursing is medically necessary, and even a prescription for 24/7 nursing from one of them. Meanwhile, the Center for Medicare and Medicaid Services (CMS) in Washington, D.C. issued a follow-up statement in April 2009 clarifying what's called the "Maintenance of Effort (MOE)" requirement states need to meet in order to receive their additional federal medicaid funding under the American Recovery Act (ARRA). According to that statement:

To be in compliance with the MOE, a state cannot have done the following after July 1, 2008: 􀂄 Made it harder for an individual to qualify for nursing home care or home- and community-based waiver services. 􀂄 Eliminated coverage for home- and community-based waiver care that costs more than institutional care, which could make it harder for some individuals to qualify for waiver coverage. 􀂄 Removed individuals currently receiving services through a home- and communitybased waiver program or reduced or eliminated home- and community-based waiver slots that were approved but not filled as of July 1, 2008.

Hawaii has violated all three of those provisions. According to a document published by the Kaiser Foundation in March 2009, Hawaii was expected to receive an estimated total of $360 million in additional Federal medicaid funds between October 1, 2008 and December 31, 2010. According to this same report, Hawaii should already have received at least $70.6 million in these funds from the feds. What's the money being spent on? Why is Hawaii apparently being allowed to flaunt federal regulations? Why are our children being threatened with institutionalization by the representatives of EPSDT? Who's going to put a stop to this? A Primer in the Different Types of Medicaid Waiver Programs A 1915(c) waiver program refers to Section 1915, item (c) of the federal Social Security Act. The definition is:

“medical assistance” ..... payment for part or all of the cost of home or community-based services (other than room and board) approved by the Secretary which are provided pursuant to a written plan of care to individuals with respect to whom there has been a determination that but for the provision of such services the individuals would require the level of care provided in a hospital or a nursing facility or intermediate care facility for the mentally retarded the cost of which could be reimbursed under the State plan. For purposes of this subsection, the term “room and board” shall not include an amount established under a method determined by the State to reflect the portion of costs of rent and food attributable to an unrelated personal caregiver who is residing in the same household with an individual who, but for the assistance of such caregiver, would require admission to a hospital, nursing facility, or intermediate care facility for the mentally retarded.(my emphasis)

Hawaii's state medicaid director stated in his email that

Section 1915 (c) (4)(B) of the Social Security Act does allow for the reduction of the number of hours and days for respite care provided under Section 1915(c) (2) D) if the total cost of care exceeds the cost of care in a Nursing Home. Thus, the DOH does have the authority to reduce respite services if the conditions of Section 1915(c)(2)(D) are affected.

What Section 1915(c) (4) (B) of the Social Security Act actually states is that:

(4) A waiver granted under this subsection may, consistent with paragraph (2)—

(A) limit the individuals provided benefits under such waiver to individuals with respect to whom the State has determined that there is a reasonable expectation that the amount of medical assistance provided with respect to the individual under such waiver will not exceed the amount of such medical assistance provided for such individual if the waiver did not apply, and

(B) provide medical assistance to individuals (to the extent consistent with written plans of care, which are subject to the approval of the State) for case management services, homemaker/home health aide services and personal care services, adult day health services, habilitation services, respite care, and such other services requested by the State as the Secretary may approve and for day treatment or other partial hospitalization services, psychosocial rehabilitation services, and clinic services (whether or not furnished in a facility) for individuals with chronic mental illness. (my emphasis; this paragraph doesn't state what Hawaii's medicaid director said it did)

Except as provided under paragraph (2)(D), the Secretary may not restrict the number of hours or days of respite care in any period which a State may provide under a waiver under this subsection. (my emphasis)

Are "respite care" and the long-term care services required to maintain an individual with special health care needs at home the same thing? They are not, so I don't understand how potential reductions in "respite care" (intended to give the caregiver a break) should have any impact on long-term care supports required by the caregiv-ee. Paragraph (2) (D) referred to above states:

(2) A waiver shall not be granted under this subsection unless the State provides assurances satisfactory to the Secretary that—..... (D) under such waiver the average per capita expenditure estimated by the State in any fiscal year for medical assistance provided with respect to such individuals does not exceed 100 percent of the average per capita expenditure that the State reasonably estimates would have been made in that fiscal year for expenditures under the State plan for such individuals if the waiver had not been granted.

However, in 1999 (after the 1991 writing of the above paragraphs in the Social Security Act), the Supreme Court released what has become known as the Olmstead Decision.

In Olmstead v. L.C. and E.W., 119 S.Ct. 2176 (1999) the Supreme Court stated loud and clear that the denial of community placements to individuals with disabilities is precisely the kind of segregation that Congress sought to eliminate in passing the Americans with Disabilities Act (ADA).

According to the Supreme Court, the rights to community support services extends to individuals already living in the community but at risk of institutionalization because of a lack of appropriate community supports:

Since the Makin [a district court case in Hawaii] decision numerous courts, including the 10^thFisher v Oklahoma, have confirmed that individuals “at risk of institutionalization” can successfully pursue an Olmstead lawsuit. In addition the U.S. Department of Health and Human Services, Office of Civil Rights (the federal agency responsible for ensuring that states comply with the Supreme Court decision in Olmstead) has confirmed that the mandate of Olmstead applies to people living in the community, but at risk of institutionalization because of a lack of appropriate community supports. (See HHS, Olmstead Circuit Court of appeals in Update #2, letter to state Medicaid Directors, July 26, 2001).

That review of the Olmstead Decision goes on to note that:

Olmstead is not a case based on the federal Medicaid law. The Supreme Court decision did not directly change Medicaid law. What the Court did do is make it clear that the state must operate its programs in a manner that complies with the ADA integration mandate. Of all state programs, the Medicaid program is the one most likely to be impacted by the Olmstead decision, because it is a major source of state financing for long-term care for people with disabilities. Furthermore, the Medicaid program is structured so that it is much easier to obtain long-term care in an institution than to receive similar supports in the community. This structure creates an inherent tension as far as operating the Medicaid program so that it complies with Olmstead.

"Inherent tension" is putting it mildly.

A second type of medicaid waivers are those authorized under Section 1115 of the Social Security Act.

These are managed care medicaid programs. There are several descriptions online of the differences between Section 1915(c) and Section 1115 waivers, but the following is very to the point:

these Waivers are research and demonstration Waivers......When states accept the 1115 Waivers, there must be an evaluation process to ensure that those whom the original Medicaid law intended to include receive benefits and services

The budgeting distinction between the two types of waivers has enormous impact on the provision of the long term care services provided to Medicaid participants:

Like 1915(c) programs, 1115 programs must be budget neutral. However, for 1115 programs this means that the program cannot cost Medicaid any more than the state would have spent in the absence of the waiver¹,²⁶ whereas 1915(c) programs should not cost more than providing state plan services, such as nursing home care, to the same population.

An enormous source of tension with Section 1115 "demonstration projects" is that they allow profit-making companies to administer EPSDT. The National Health Law Project has published a list of 30 questions that all should be answered "yes" in evaluating whether a managed care project is meeting EPSDT requirements.

National Health Law Program wants to know if your child's services have been cut since July 2008

In late March of 2009, the National Health Law Program published their analysis of certain aspects of the American Recovery and Reinvestment Act with relation to medicaid. They make the following statement:

If your state is considering implementing a Medicaid policy that is more restrictive than its July 1, 2008 rules, please contact us. In particular, we understand that members of Congress are monitoring the extent to which states are proposing service cutbacks. Please contact us if service cutbacks are being proposed or implemented. We are also interested in hearing from advocates in states that may obtain enhanced FMAP but use it for non-Medicaid purposes, i.e. on highways or other infrastructure projects.

In other words, if any of your child's services received through medicaid (and I would ask if that shouldn't include EPSDT services provided by your school) have been reduced since July of 2008, then your state isn't eligible for that nice chunk of federal money coming it's way. It's what NHelp refers to as the "maintenance of effort requirement" of ARRA. Individual states will lose their new federal funding if the federal government discovers they've cut disability services (and particularly waiver services) after July of 2008. The states obviously don't want that to happen, but as my roster of the "hall of shame" has grown to 15 states, it appears not a lot of attention is being paid to this requirement. Please, please let NHelp know if there have service cuts in your state (or county) since July 2008 that haven't been reinstated. It's so important for our kids and their futures. NHelp's contact information is:

NOTE: Please be advised that NHeLP cannot provide legal advice to individuals. We are not a direct service agency. The following websites may assist you in locating legal resources in your community:

• LSC Directory-legal help in civil (not criminal) matters for low-income people.
• Protection & Advocacy System--provides protection of the rights of persons with disabilities through legally based advocacy
• The American Bar Association website provides useful links to lawyer referral services and pro bono legal help for the poor.

Los Angeles Office (Main Office)

2639 South La Cienega Blvd Los Angeles, CA 90034-2675 ph: (310) 204-6010 fx: (310) 204-0891 nhelp@healthlaw.org

Washington, DC Office

1444 I Street NW, Suite 1105 Washington, DC 20005 ph: (202) 289-7661 fx: (202) 289-7724 nhelpdc@healthlaw.org

North Carolina Office

211 North Columbia Street, 2nd Floor Chapel Hill, NC 27514-3503 ph: (919) 968-6308 fx: (919) 968-8855 nhelp@healthlaw.org

Health Consumer Alliance hca@healthlaw.org

Disability Rights Action Alert for National Health Care Reform activities

Two national disability groups have released petitions on the internet. Each petition addresses a different aspect of national health care reform, and both petitions affect the medical civil rights of our children. Please help spread the word of both petitions to all the groups that you participate in. The petition sign up sheets can be submitted over the internet, or you can print them and take them to your local meetings. These both have tremendous implications for our children's futures, and we need to get involved and let our voices be heard. The National Organization to End the Waitlists is focusing their efforts on the waiting lists for entry into the Medicaid waiver programs that plague so many states, and prevent hundreds of thousands of our kids from receiving the medical rights they're entitled to. If you're not familiar with the Medicaid waiver programs, qualification is based on the income and assets of the individual with the disability, and don't take into account any assets or income of the family. A primary focus of the waiver programs is to provide the appropriate in-house medical supports that will enable our kids to stay at home while receiving the appropriate professional medical supports. Once our kids get into these programs, they are pretty much there for life, which for me, at least, provides a sense of relief about my daughter's future. Nowait is also pushing that once an individual is finally placed in a medicaid waiver program, their medical rights don't follow them if these move to another state, and sometimes, just another country. Their petition is here: http://www.gopetition.com/petitions/noewait.html The Center for Self Determination's goals are much broader: reform Medicaid to ensure that home professional supports are available for those who need them. They're speaking for the wider community of individuals with special health care needs, which includes the elderly, people sufferering from chronic health problems, as well as our kids. I've uploaded to Scrib the Executive Summary of their goals. Signatories already include all the major disability and senior citizen rights groups. The more in-depth reports upon which this summary is built are all linked to here. Their petition is here.

Why cutting state Medicaid budgets is a terrible economic decision

In 2003, the national office of ARC published an article focusing on the economic impact of cutting the state Medicaid budget. Considering the number of states currently attempting to do the same thing, the article's explanation of the mathematics of cutting state Medicaid budgets is extremely timely. The basic logic is that for every dollar of state spending cut, the state loses at least $1 in federal funding. It's because the federal government matches state medicaid spending, by percentages ranging from 53% to more than 80%. (The acronym for the federal matching funds percentage is FMAP). So in 2003, in Hawaii, for every dollar the state spent on Medicaid, it received $1.43 from the Federal government. This sums it all up:

In 2001, Hawaii spent $308 million of state dollars and $455.8 million federal dollars on Medicaid. This resulted in $743 million in new business activity in the state leading to the creation of more than 7,000 new jobs. Every $10 million cut in Hawaii’s state share of Medicaid spending could lead to a loss of $29 million in state business activity, resulting in 286 jobs lost in the state. Source: Families USA, Medicaid: Good Medicine for State Economies; January 16, 2003.

This could be summed up as the "cut off your nose to spite your face" approach to economics. What it also means is that for every $10 million the state (in this case Hawaii) cuts from it's Medicaid budget, the community of individuals with disabilities and special health care needs actually loses $2.43 million worth of services. The states forget to tell us that when they are going on and on about how they have to make the cuts someplace and we all need to just take it on the chin, or grin and bear it, or whatever platitude you're hearing from your state officials. The federal Stimulus bill enacted by Congress on February 17 of this year added $86.6 billion to the FMAP for the states. Each state's share of federal funding increased by at least 6.2%. Here's the list of how much additional FMAP funding each state is due to receive. The question is, with all the state cuts in medicaid funding happening across the country, what is going to happen to this potential increase in federal funds? Especially since

States would only be eligible for the FMAP increase if they ensure that their Medicaid eligibility criteria and enrollment/renewal procedures are no more restrictive than those in place on July 1, 2008.

So how narrowly are we going to define "Medicaid eligibility criteria and enrollment procedures"? In Hawaii, for example, the state put into effect substantial cuts in personal services (including skilled nursing) for children with disabilities under the age of 13. The letter sent out to parents on July 3, 2008 stated services were going to be re-evaluated for cuts for any child in a home based waiver program under the age of 13 and receiving more than 29 hours of services per week. Then in December, Hawaii cut another chunk from the personal services received by these same children, along with other participants (regardless of age) who were enrolled in the state's Medicaid 1915(c) waiver program providing Home and Community Based Services. I haven't heard anything about these services being reinstated. And I've already uploaded news articles showing another seven states are also in the process of completing first and in some cases, a second round of medicaid cuts. A lot of these cuts are aimed at the home services that allow our kids to stay at home with us. And in the middle of all this, what is happening with the funds for EPSDT? Mention of the program is strangely missing from the vast majority of articles I've been able to find on cuts in services for children with disabilities. I am not an economist. And right about now I'm beginning to wonder if the states need forensic economists in order to figure out where the EPSDT funding is being spent now and what's happening to it in the greater scheme of states cutting medicaid related services. EPSDT cannot be cut. Whether the services are provided through medical providers or your school district, your state absolutely cannot cut any service a doctor says is medically necessary for your child. If your child needs formula because he or she feeds through a tube, it can't be cut. If your child requires 24/7 skilled nursing, it can't be cut. If your child requires diapers, or specialized bathing equipment, these expenses cannot be cut. But they are. So what has happened to the EPSDT funds?

More documents uploaded to SCRIBD

I've just uploaded another twenty documents to SCRIBD. Just click on the SCRIBD widget at the top of the left column to access them.