Feds Acknowledge Civil Rights Status of "Medical Necessity" for Children with Disabilities

Letters issued by the federal DHHS Office for Civil Rights to two Hawaii mothers acknowledge children with disabilities have a civil right to medical services that are "virtually unlimited in terms of funding ...  as long as services are medically necessary."

In both cases, OCR gave priority to the children's treating physicians' recommendations for "medical necessity" over those imposed by state or private Medicaid providers.  This action is in keeping with three federal court decisions made late last year, all of which ruled state Medicaid officials or private providers could not deny or limit what a child's treating practitioner said was "medically necessary."

The letters were in response to complaints filed with OCR by the mothers about nine months ago, alleging that threatened cuts in home skilled nursing services violated their daughters' civil rights under EPSDT.  In December, OCR acknowledged that the office's oversight of Olmstead violations extended to rights under EPSDT.  In February, the office opened formal investigations into both girls' cases.

The letters were formal notifications the cases are being closed at this time.  Federal regulators from the Center for Medicare and Medicaid Services have apparently assured OCR that both girls are currently receiving 24/7 skilled nursing from a combination of sources, and therefore at this time the girls are not at risk of institutionalization. 

OCR investigates "covered entities" which can include a state developmental disability program, but not the privately owned, for profit insurance companies also responsible for providing services. However both letters quote CMS stipulating an apparently agreed-upon service coverage by UnitedHealth, the particular company providing Medicaid services to both girls.

Should this situation change for either girl, OCR can immediately re-open the cases.

As of April 30, 2010, both girls are covered by a new federal definition of medically frail children.  42 CFR 440.315(f) states:  

" ...the State's definition of individuals who are medically frail or otherwise have special medical needs must at least include those individuals described in §438.50(d)(3) of this chapter, children with serious emotional disturbances, individuals with disabling mental disorders, individuals with serious and complex medical conditions, and individuals with physical and/or mental disabilities that significantly impair their ability to perform one or more activities of daily living."

 Since one of the two girls is my own daughter, I am publishing the letter we received from OCR.

National disability fellowship awarded to Hawaii doctor linked to federal investigations into Olmstead violations

The Honolulu pediatrician who has received a prestigious Kennedy Foundation Fellowship has links to two on-going Federal inquiries into whether cuts in home services provided to people with disabilities violate the Americans with Disabilities Act.

Dr. Jeffrey Okamoto has been the Medical Director of Hawaii's Developmental Disability Division of the Department of Health.  In December 2008, the Division announced an across-the board fifteen percent cut in home services for people with developmental disabilities.

Federal Medicaid regulators from CMS have been flying into Honolulu regularly since last fall, meeting with state officials to discuss the appropriateness of these cuts.  Discussions and personal meetings have expanded in scope.  I was asked by CMS to provide additional evidence as recently as last month.

In February, the Office for Civil Rights of DHHS opened their own formal investigation into whether the Developmental Disability Division's across-the-board service cuts violate the Americans with Disabilities Act.

Dr. Okamoto intervened directly in my daughter's formal Department of Health appeal against the 15% cut in her nursing services, testifying unexpectedly at the hearing.  Because of that involvement, I have written testimony from Dr. Okamoto that I am willing to share with the public, even though it contains private medical information about my daughter.

He disputed Hannah's neurologist's evaluation and prescription for 24/7 skilled nursing in the home.  In written testimony presented to the Hearing Officer, Okamoto wrote: 

24/7 nursing as being requested by Dr. Griffiths should indicate that Hannah is not safe at home.  This even exceeds the hospital level of nursing provided.  If Hannah is safe at home, then 24/7 nursing should not be necessary.

The written decision of the Department of Health Hearing Officer rejected explicitly all of Dr. Okamoto's arguments.  This included Dr. Okamoto's attempt to link parental training to whether or not a child is safe living at home.

In spite of that written decision, Dr. Okamoto's concept that the safety of a disabled person in their home can be linked to the level of parental training has been expanded upon.  Honolulu civil rights attorney Rafael Del Castillo says he has seen the issue brought up in at least one other case, but by the Department of Human Services.

Earlier today I reported that these threats are being made to families even now, but by representatives from the two for-profit insurance companies that operate Hawaii Medicaid's special programs for people with disabilities.

These issues and complaints remain outstanding. 

The Joseph P. Kennedy Jr. Foundation, which has awarded Okamoto a Public Policy Fellowship, is devoted to furthering the rights of people with disabilities.  One has to wonder if anybody bothered to tell them that Hawaii's entire program of home and community services for the disabled is under a combination of formal, informal and criminal investigations by CMS, OCR and DOJ?

CDREA publishes 11th Anniversary webzine on the failure of the Olmstead Decision

A year ago, both the President and DHHS made a big public hoopla about the June 22, 2009 tenth anniversary of the Olmstead Decision.  That was the Supreme Court ruling that gave people with disabilities a civil right to not be institutionalized.

This year there is a small article on the government's Disability Blog.  Considering that at least twenty-two states have come under some sort of regulatory attack for violating the civil rights protected by Olmstead, it may not be too surprising.

The Children's Disability Rights Education Association has published a three page webzine on the failure of the Olmstead Decision.  We have had some success advocating here in Hawaii and legal documents are linked.

The point was also to put a face on the people who are actually being targeted for state Medicaid budget cuts across the state.

There are three sections:
The Failure of Olmstead
The Victims when Olmstead Fails
Successful Advocacy in Hawaii

We're Site of the Day on About.com's Special Needs Children forum

Please read and consider signing our petition - states are continuing to make cuts in services that have a serious impact on the quality of life of our elderly and our people with disabilities while billions of stimulus funds sit in their bank accounts. Thank you Terri for your help!

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

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.

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.