Letters show Hawaii out of compliance with ARRA and CHIPRA since April 2009

On April 8, 2009, Lillian Koller sent a letter to Governor Lingle asking approval for 41 positions needed for Hawaii Medicaid to "effectively implement" new federal Recovery Act and Children's Health Insurance Act regulations.  A virtually identical letter, asking for the same positions, was sent today by Hawaii Medquest Administrator Kenneth Fink to Lillian Koller.

The implication appears to be that Hawaii has knowingly been out of compliance with the new Medicaid regulations for the past fifteen months.

Both letters state that "these programs can generate in excess of $327 million in new Federal funds for the State if we meet all the requirements".

In our current economic situation, it is difficult to understand why the State would knowingly forego $327 million in funds to benefit children and adults with disabilities as well as the elderly and blind.

Both letters cite the immediate need "to expedite State Plan Amendments and Hawaii Administrative Rules....Both of these bills generate millions of Federal dollars for Hawaii, but we need to be able to do the work in order to be able to access thyese funds.  Due to two vacancies, staff will not be able to execute the provisions of the ARRA and CHIPRA."

Both letters cite possible violation of federal regulations for Medicaid agency personnel training. "Federal financial participation (FFP) is being claimed for training costs at 50%. This office currently has a 43% vacancy rate...If the funding for this position is not approved, the State will not be able to provide the required level of training for existing andnew employees and will not be able to claim the federal funds for its training costs."

Both letters cite a 56% vacancy rate in the Customer Service Branch.  "The average number of monthly calls has dramatically increased due to QUEST Expanded Access (QExA) [QExA is omitted in June 2010 version], and is expected to only further increase as a result of the ARRA."

A recent article noted that DHS had received only 62 phone calls in April 2010 with complaints from UnitedHealth and Wellcare members.  I recently discovered, however, that DHS had no record of my complaints regarding my daughter's services, nor that anything for her had been denied, which casts some doubt on the figure quoted in the Advertiser.

The article also noted that UnitedHealth and Wellcare receive about 15,000 phone calls a month, not all of which are about "problems".  Enrollment in the two companies is only about 40,000.  These numbers may be more representative of the dramatic increase in calls to Medquest's Customer Service about the program run by UnitedHealth and Wellcare that is referred to in both letters.

The letters do not state what the cumulative cost to the state will be for the 41 positions.  I would assume, however, that it is significantly less than either the $327 million to be gained, or even the $15 million a month that UnitedHealth and Wellcare are making in net profit from premiums.

Hawaii -- deficit plus stimulus funds shouldn't equal a bigger deficit, should it?

The Honolulu bureau of the Associated Press ran a great article a week ago on the impact Hawaii's $1 billion budget deficit was having on education and others in need.

According to the official web site for the American Recovery Act, which tracks the money going out to the states as well as what the states admit to having, Hawaii reported receiving $811.9 million by October 30, 2009. 

The feds say they've awarded Hawaii $1.2 billion in contracts, grants and loans.  Over $1 billion of that is in grants.  One source I found said Hawaii had only received about 40% of the funds, but it's approved. 

Not to mention that the $1 billion projected deficit is by 2011, and we're talking money in the bank now with lots more on the way.

I've asked CMS (the Medicaid federal regulatory people) about this and have been met with evasive responses.  Having personally lived in Washington D.C. for 8 years, I can tell you that evasion from government employees is not a positive indication.

So with education being cut by a day a week and elderly and disabled people being threatened with institutionalization, what's the money being spent on?

Medicaid, IEPs and the right to case management services

What is Case Management Here's how the federal regulators of Medicaid recently (June 30, 2009) described case management services for an individual with disabilities:

we recognize the advantages of a team approach to case management services. For example, a lead case manager could coordinate resources and expertise from providers of medical, education, social, or other services for the benefit of the individual in developing a comprehensive plan of care and facilitating access to services. To facilitate this service model, States may set differential rates to reflect case or task complexity that would ensure sufficient payment to reflect the costs that case managers may incur in consulting with other practitioners.

For the parents and caregivers of people with special health care needs, dealing with all the different local, state and federal bureaucrats can be "the death of a thousand cuts." This definition entitles the people we're caring for to an individual (or maybe two) whose job it is to coordinate with all the different government departments -- Medicaid, EPSDT, Department of Education, Department of Health, Department of Human Services, Vocational Rehab -- plus the individual's doctors, therapists and service providers. Who is entitled to case management under Medicaid? Case management is a federally required minimum service to be offered by every state's Medicaid program for children under the age of 21 (EPSDT) (42 U.S.C. 1397jj). Case management is also required for adults and children with special health care needs who are participants in a Medicaid waiver program authorized under Section 1915(b) or 1915(c) of the Social Security Act (see 1915(c)(4)(B) and 1915(b)(1). In Hawaii, this would cover everyone who is still enrolled in the state's DDMR waiver program. And at least in the state of Hawaii, case management is a requirement for all 37,000 aged, blind and disabled individuals who are participants in the state's new Section 1115 QExA managed care program (see Chaper VI, section 28(c)(ii) of the document authorizing the creation of the QExA program). How to obtain case management services A 2004 government pamphlet aimed at explaining to parents how to use EPSDT includes instructions on how to obtain medically necessary items and services directly from your Medicaid provider. The process of obtaining individualized case management services should be as simple as giving your Medicaid provider a letter of medical necessity written by a physician or other appropriate medical or educational professional, and a doctor's prescription for the services. If you live in a state that adheres to federal Medicaid law, that should be it. If you live in a state that does not adhere to federal Medicaid law, or worse, has for-profit insurance companies interpreting federal laws, the process can be full of stress, frustration and never-ending delays. Case Management and your child's IEP Federal law requires "Medicaid to be primary to the Department of Education for payment of the health-related services provided under IDEA." More recently, the federal office that regulates Medicaid published the following in the Federal Register on June 30 2009:

Medicaid reimbursement remains available for targeted case management services and other covered services, which are included in an eligible child’s Individualized Education Program (IEP) or Individualized Family Service Plan, consistent with section 1903(c) of the [Social Security] Act.

A handbook published by CMS in May 2003, and re-ratified by the June 30 ruling, includes a list of services that are the responsibility of the case manager of a child under the age of 21. Some of these include:

1. Making referrals for and/or coordinating medical or physical examinations and necessary medical/dental/mental health evaluations.
2. Making referrals for and/or scheduling EPSDT screens, interperiodic screens, and appropriate immunization, but NOT to include the state-mandated health services.
3. Referring students for necessary medical health, mental health, or substance abuse services covered by Medicaid.
4. Arranging for any Medicaid covered medical/dental/mental health diagnostic or treatment services that may be required as the result of a specifically identified medical/dental/mental health condition.
5. Gathering any information that may be required in advance of medical/dental/mental health referrals.
6. Participating in a meeting/discussion to coordinate or review a student’s needs for health-related services covered by Medicaid.
7. Providing follow-up contact to ensure that a child has received the prescribed medical/dental/mental health services covered by Medicaid.
8. Coordinating the delivery of community based medical/dental/mental health services for a child with special/severe health care needs.
9. Coordinating the completion of the prescribed services, termination of services, and the referral of the child to other Medicaid service providers as may be required to provide continuity of care.

A parent or caregiver can apply to their Medicaid provider directly for a case manager, and expect all these services to be provided for their child. These services could also be provided by the school, which will then bill Medicaid for the services, and for the administrative time spent arranging for them. In 1979, Jimmy Carter formed the first federal Department of Education. In the 14 months between then and the change of Administration in January 1981, the DOE published a blueprint for how schools and Medicaid should work together for the benefit of the student.

Coordination of all services -- outreach activities, screening programs, treatment, and follow-up services -- should be emphasized between school health and other health care providers, and social agencies in the community, to avoid duplicating efforts, increasing costs of services and adding further stress to the child and family. A means by which one care plan, if at all possible, can be used as a principle vehicle for monitoring the provision of services is a priority area for action... Schools should develop a plan ...[to] determine the extent to which health services are being provided, and the degree to which coordination of services between EPSDT and other programs is taking place.

For any child on Medicaid, the IEP should be a single document that incorporates all the services a child receives, whether from DOE, Medicaid, a Medicaid managed care company, or private organizations. And that IEP needs to include the case manager who will coordinate all the services being received. Who can NOT be the case manager? Federal law [42 CFR section 441.18(a)(6)] prohibits "providers of case management services from exercising the agency’s authority to authorize or deny the provision of other services under the plan." This means that the people at Medicaid who authorize and deny Medicaid services cannot also provide case management services. In Hawaii, for instance, UnitedHealth Group and WellCare Health Plans, which authorize and deny services for their Medicaid participants, cannot also provide the case management services for these participants. It would be a conflict of interest.

If you had a company, would you hire back an employee who had stolen $40 million from you?

Because that's what our federal government has done, awarding a national Medicare contract to a company that has just paid $80 million in restitution and penalties to Florida for defrauding their state Medicaid plan, $10 million to the SEC for something else, and even $120,000 to the Florida Election Commission for ""questionable campaign contributions." Wellcare states on its website that the company provides managed care services exclusively for government-sponsored healthcare programs, focusing on Medicaid and Medicare. Some of the states where WellCare is providing Medicaid managed care services are Hawaii, Ohio, Georgia, Florida, Arizona, New York, Louisiana, Texas, Indiana, Illinois and New Jersey. This company that has paid out over $90 million just in the past five months to various federal and state authorities also reported that second quarter 2009 net income was 236% higher than it was in second quarter 2008. That represents a jump from $11.1million in April-May-June 2008 to $37.0 million in the same three months of 2009. Another way to look at WellCare's profit is that the company spent $1.5 billion on medical benefits and receieved $1.8 billion in revenue from premiums. How much of that $300 million profit (just for 3 months) could have been directed back to Medicaid services if these services were not administered by a for-profit company? UnitedHealth Group operates public sector health care programs (i.e., Medicaid and Medicare) in 23 states, under a variety of names. UHG's revenue from premiums for the second quarter of 2009 was $19.7 billion, of which 83.6% was spent on medical services. That's a handy profit for three months of $3.23 billion. That isn't breaking out employee plans from state plans, but in this particular economy, that kind of profit isn't something to be sneezed at. Just in 2009, UnitedHealth Group has paid out over $1 billion in fines to New York, California and Missouri, plus another $62 million in the two preceding years. For profit companies such as WellCare and United Health should not be allowed to administer federally funded programs where their company profits are literally taking necessary medical services away from babies. Decisions on issues such as "medical necessity" should not be left up to a profit-driven company. I live in Hawaii, where our Medicaid program, including EPSDT, is run by WellCare and UnitedHealth Group.

Feds Investigate Hawaii Medicaid Cuts -- News for disability rights advocates

Hawaii's Medicaid program has come under federal scrutiny by one Federal department, and is pending scrutiny by another. The severe budget cuts that Hawaii has been making in its DDMR waiver program, and the way Medicaid is functioning under the new managed care (for profit) system that began February 1, are the objects of this scrutiny. On June 29, I filed a complaint with the Office for Civil Rights of the Department of Health and Human Services (OCR). On August 26, the San Francisco regional office of OCR notified the San Francisco regional office of the Centers for Medicare and Medicaid Services (CMS) of the issues involved. A lot of health and other professionals are relatively unaware of the hugely important role CMS plays in the day to day operation of our state Medicaid and Medicare programs. CMS wrote the last formal interpretation of the Maintenance of Effort (MOE) clause of the American Recovery Act which allowed the states to get away with making substantial medicaid service cuts and still receive stimulus funds. CMS decides how Medicaid and Medicare are supposed to function and issues letters to the states or rulings printed in the Federal Register, and then these items become law for states to follow. CMS isn't set up to handle individual complaints, but is now watching how the Hawaii Medicaid due process system functions, to ensure it functions the way CMS expects it to. As the parent of a child whose home services have been threatened with substantial cuts, I have the security of knowing that the state will have to follow federal law in these hearings. They're not going to be able to just "make it up as they go", as has happened so often in the past. Part of this process is ensuring that EPSDT, which entitles children with special health care needs to a much broader scope of services than normally provided under Medicaid, also functions as intended. From the standpoint of education advocates, this can provide a tremendous opportunity. DHHS has written manuals on how EPSDT and IDEA are supposed to function jointly to meet all the educational, medical and social needs of children with disabilities. They published a brochure in May 2003 with detailed instructions on how state education departments can bill EPSDT for services, and another brochure in 2004 specifically describing how EPSDT services are to be incorporated into the IEP.

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.

Since the Hawaii schools are Medicaid providers, there is no reason for Hawaii's children who are eligible for Medicaid to continue to suffer from DOE denials of services. This issue of the integration of EPSDT with the IEPs will continue under federal scrutiny. Doctors can write letters of medical necessity and submit these, along with a prescription, to the child's Medicaid provider (either Evercare or Ohana). Medicaid is then supposed to provide it via the funding they are receiving from the state. That part of the system isn't functioning well right now - but that's how we can all help get things working correctly here. Linda Nuland-Ames and I have formed the Children's Disability Rights Education Association. Our first activity is an online petition to DHHS Secretary Kathleen Sebelius, calling for full transparency of how states are spending their Medicaid stimulus funds and ensuring that a priority is given to using these funds to replace Medicaid services which have been cut since July 1, 2008. According to DHHS, the states have already received over $28 billion in stimulus funds that can ONLY be spent on Medicaid. My state, Hawaii, has already received over $131 million (with more on the way). No one seems to know how it is being spent, and no one wants to answer my question why it isn't being spent restoring Medicaid service cuts. CMS tells me they are also working to have someone made responsible at the state level for communicating between families that have their services cut, and both the Hawaii Department of Health and Department of Human Services. CDREA will reach out to families whose services have been cut to ensure their concerns are heard and receive the consideration they so urgently deserve. Please join us in these actions. Summer Harrison Linda Nuland-Ames Children's Disability Rights Education Association

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.

Why we need to watch-dog how our states are spending our Recovery Act billion$

Did you know that your state has already received millions, possibly hundreds of millions of Federal Funds that can ONLY be spent on Medicaid. It's a simple "understood" condition of the states getting these new federal grants that are from the Recovery Act, that certain funds can't be spent on anything other than Medicaid, and it can't be put into any kind of reserve or rainy day fund. As of today, the states have received $26 billion just to be spent on Medicaid. These are our taxpayer dollars, and we have a responsibility both to the children and adults with special health care needs that we love and the rest of our national of fellow-taxpayers, to make sure these funds are being spent, shall we say, "responsibly." The information is all online, you just have to navigate through it. I've uploaded a spreadsheet that is up to date as of August 7, 2009, and here is some of what I found: Hawaii has received $223 million as of last week. Of that amount, $130 million can only be used for Medicaid. Hawaii's state recovery website describes how they've used about half a million of it, leaving the other $129.5 million unaccounted for. Alaska has received $103 million. Of that amount, almost $41 million can only be spent on Medicaid. Colorado has received just over $727 million. $235 million can only be spent on Medicaid. Washington has received over $1.4 billion (that isn't a typo). $531 million can only be spent on Medicaid. Kentucky has received $660 million. $352 million can only be spend on Medicaid. Pennsylvania has received $2.1 billion. More than $1 billion of that can only be spent on Medicaid. Yet all of those states currently have class action suits pending against them because they've slashed their Medicaid budgets for home services for the elderly and people with disabilities to the point where thousands, if not millions are being threatened with institutionalization. In this country, threatening someone with institutionalization for their age or disability or other special health care need is a violation of that person's civil rights. Back in 1999, the Supreme Court ruled that people with disabilities had a civil right to remain at home with their families, and in their communities, and that our government had a responsibility to its citizens to pay to ensure that no one was forced against their will into an institution. It's called the Olmstead Decision, and the Office for Civil Rights of the Department of Health and Human Services is responsible for enforcing it. Actually our federal government is currently making it possible for millions of our more vulnerable citizens to stay with their loved ones, even though doing so costs more than rounding them all up in institutions . In what would seem to me to be more of a "Life Panel" than anything else, Medicaid (along with Medicare and the VA) pays out billions to the incredible workforce of nurses, therapists, home care specialists, local medical supply companies and others whose services are medically essential for our elderly, blind, disabled and chronically ill children and parents to remain at home where they can get one on one care from the people who love them the most. Yes, the economy is rotten and the states are all having to tighten their belts. But they've been given an unexpected gift of $26 billion just to help their state medicaid programs. The money is in state bank accounts, ready to be spent. The laws, the institutions, the delivery system are all in place. So why are all these class action suits out there? What's the money being spent on? Each state has their own Recovery Act website. You can find your own state's website by clicking on your state name on this map. The map here will tell you exactly who has received ARRA-related contracts, grants and loans in your state.

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