Re: SOS Rally this Sat

[Guest guest]

>Hi ,

>Congratulations!!!

>I know it took a lot of dedication and hard work to appeal Medicaid.

>I think you are a great resource to parents in Georgia on how to navigate

>the Medicaid system. If you are not already a member I think it would be

>great for you sign up to the GA-Parent Listserv. The listserv is an

>excellent resource to parents all over Georgia.

>Let me know if you need help joining the listserv.

>Lets keep in touch.

>Heidi Fernandez

Hcf67@...

Date: Tue, 4 Nov 2003 19:02:40 EST

Subject: SOS Rally this Sat

To: dfreels@...

MIME-Version: 1.0

Please share with families.

Thank you, Heidi Fernandez

FOR IMMEDIATE RELEASE:

Contact: McConnell Heidi

SOS Kids Spokesperson SOS Kids Spokesperson

tanyamcc@...

heidijmoore@...

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Dear Heidi, , Heidi et al:

While I appreciate the efforts toward organizing the rally tomorrow, I am

very confused as to what the expected outcome will be.

I am a subscriber to the magazine *Making a Difference* which is published

by the Governor's Council on Developmental Disabilities (GCDD).

I have contacted the magazine staff a number of times, expressing a very

sincere and committed interest to submit an article detailing the changes

that should now be in place within the Department of Community Health (DCH)

as a direct result of a legal case between my nine-year old son Jimmy and

Georgia Medicaid.

Jimmy suffers from mid-brain injury that has impaired his mobility,

balance, and speech. Though he is still not yet sitting up or walking, he

has experienced tremendous gains through a (somehow controversial)

treatment called Hyperbaric Oxygen Therapy (HBOT).

Georgia Medicaid denied HBOT reimbursement. We requested a hearing before

an Administrative Law Judge (ALJ) and lost because the ALJ said HBOT for

pediatric brain-injury was not covered by the Georgia Medicaid plan;

however, the Federal statute which created the Medicaid program for

children [found at US 42 § 1396d®(5)] specifically states

Medicaid-recipient children are entitled to:

" (5) Such other necessary health care, diagnostic services, treatment, and

other measures to correct or ameliorate defects and physical and mental

illnesses and conditions discovered by the screening services, whether or

not such services are covered under the State plan. "

We appealed the ALJ decision to Dekalb Superior Court and the decision was

reversed for two reasons: The ALJ's " findings of fact " were wrong (the

pediatric neurologists consulted by the state were found to be in error),

and Georgia Medicaid and the ALJ were also found to NOT be in compliance

with the Federal Medicaid law.

Under the leadership of Roy , supposed friend of people with

disabilities, the Attorney General of the state of Georgia then appealed

the Dekalb reversal to the Georgia State Court of Appeals.

The Georgia State Court of Appeals upheld the Dekalb reversal, finding the

state in noncompliance with the Federal Medicaid law. The Appeals Court

declared every reason for denial was invalid:

" Based on the information available, our physician reviewer is unable to

determine the medical appropriateness of the requested services. There is

no documentation from the Undersea and Hyperbaric Medical Society to

support the use of Hyperbaric Oxygen Therapy for this diagnosis. "

--from the first Georgia Medicaid denial letter, dated May 23, 1999.

" Our physician panel has determined that HBOT in Cerebral Palsy is

experimental/investigational and is not a generally accepted practice at

this time. "

--from the second Georgia Medicaid denial letter, dated November 30, 1999.

" Based on this review the original decision has been upheld for the

following reason: THERE IS NO SCIENTIFIC DATA TO SUPPORT THE MEDICAL

NECESSITY FOR HBOT IN THIS CASE "

--from the third Georgia Medicaid denial letter, dated January 12, 2000

(capitalized emphasis original to denial letter).

What this means is that Georgia Medicaid can no longer deny services to

children for the following reasons:

1. " experimental and investigational "

2. not " medically necessary "

3. not " the standard of medical practice "

4. it's not covered by the state Medicaid plan

This also means that Medicaid-recipient children in Georgia are entitled to

any and every treatment that is " necessary to correct or ameliorate " their

condition--no matter what the state budget is.

Now, if you were to ask any caregiver of brain-injured people--children or

adult--what is most helpful, most likely they would say " Nothing. " Speech

Therapy, Occupational Therapy, and Physical Therapy don't help

brain-injured people gain lost function--unless it's used in conjunction

with HBOT.

Hyperbaric Oxygen Therapy has been demonstrated to improve over 95% of

EVERY brain-injured person (child or adult) who has received it--for

whatever the brain-injury be it cerebral palsy, autism, stroke, alzheimers,

multiple sclerosis--pick a neurological disorder and HBOT will help.

In my experience, the reason why HBOT is not accepted by Neurologists is

because their particular branch of medicine delivers palliative care. For

the most part they're in the maintenance business and for neurologists it

is literally inconceiveable that something could be done to improve a

brain-injury.

Unfortunately, neurologists hold the credentials of expertise when it comes

to brain-injury--even though they know nothing about *recovery* from

brain-injury.

My eyes were opened widest on this issue while hearing the sworn testimony

of the state's expert witnesses at Jimmy's Medicaid hearing. Two pediatric

neurologists, one of whom is the Chief of Pediatric Neurology at the

Georgia College of Medicine, both said under oath that there was no

relationship between cerebral blood flow and cerebral metabolism.

(HBOT HBOT works by forcing the growth of new capillaries. Obviously linked

to cerebral blood flow is metabolism. If brain tissue is metabolizing that

means it's functioning and thus fully recoverable and viable tissue.)

(If I had had my wits about me that day, Jimmy's attorney would have picked

up the Bible they had sworn-in on, turned to the 14th chapter of

and asked the neurologists, if there's no relationship between cerebral

blood flow and metabolism, why is it that the Baptist died when he got

his head cut off?)

More importantly, because brain-injured people eventually become wards of

the state (to one degree or another) HBOT can save the state of Georgia

hundreds and hundreds of millions of dollars--maybe even billions.

It could also save a lot of heartache--and the need and necessity and pain

in the rear and disruption of schedule caused by having to go down to the

state capitol to hold a rally that probably won't have much effect anyway.

What everybody here needs to remember is this, so far as our children go,

since they are Medicaid recipients, there is no limit to what resources

they are entitled to. Secondly, because we as parents never stop looking

for anything and everything that will help our kids, because of Paragraph 5

of the Medicaid law, if and when we find something, the state is legally

obligated to pay for it.

Nobody else in the state of Georgia has to go through this because of the

case law now in place in Jimmy Freels vs. Georgia Department of Community

Health. Please take advantage of it.

Third, it will be illegal for the state to charge a fee to participate in

the Beckett Deeming Waiver anyway. A deeming waiver is a deeming

waiver. Parental income is waived--or it's no longer a deeming waiver.

Even when the state learns that they cannot charge a fee, they cannot then

decide to eliminate the Beckett Deeming Waiver. Once a state, any

state, elects to enact a part of the Medicaid program, it is against

federal law to then go back and eliminate participation in that part of the

program.

This has already been tested in the courts.

What is bothersome to me is that I have made numerous calls or emailed

either *Making a Difference* or GCDD and yet have never received a return

call from either *Making a Difference* or GCDD.

We're either all in this thing together to make a difference or we're not.

If the state were wise, they would (hopefully) take advantage of the

lessons learned from Jimmy Freels vs. Georgia Department of Community

Health. Getting this information out through *Making a Difference* and GCDD

would surely help.

First of all, HBOT offers immediate and tremendously substantial cost

savings--which would eliminate the need for budget cuts.

Second, HBOT can prevent future expenses. For example, right now there's a

physician in Mexico City (a 3rd world country no less) who is taking

premature babies from the delivery room to the hyperbaric chamber located

across the hall for just one 45 minute session of hyperbaric oxygen, and

these children then never have neurological problems.

No cerebral palsy.

No autism.

No nothing.

No neurological problems.

His name is Dr. E. Cuauhtemoc , and I have given his name, address,

email address, and cell phone number to the folks at the CDC and NIH whose

job it is to find a way to eradicate conditions like cp from humanity, but

nobody there seems to be interested.

(Much of this will be discussed in hearings before the United States

Congress in March, 2004. See

http://www.hyperbaricmedicalassociation.org/IHMA/bulletin.html)

Maybe the Georgia Department of Medical Assistance would be interested--if

only to save some money.

I don't know that I'll be able to attend the rally, but I do wish people in

the disabled community would take advantage of what they have.

mailto:medicaidforhbot-subscribe

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Freels

2948 Windfield Circle

Tucker, GA 30084-6714

770/491-6776 (phone and fax)

720/269-5289 (efax, sends fax as email attachment)

mailto:dfreels@...

http://www.freelanceforum.org/df