Today I was involved in another hearing before an
Administrative Law Judge regarding Regional Center funding for a child with
autism. It was, once again, surreal. The “fair” hearing is held
after Regional Center denial of funding for neurofeedback. The parents decided
to press their demands, and they invited us to help make their case. Since the
parents had already experienced five training sessions with their child, they
came armed with lots of reports of progress. I came with my Power Point presentation
on autism, and also armed with all the relevant books:

Symphony in the Brain

Introduction to Quantitative
EEG and Neurofeedback

Understanding, Diagnosing,
and Treating AD/HD in Children and Adolescents

Getting Rid of Ritalin,
and

The Byers
Neurotherapy Reference Library, Second Edition
The Regional
Center advocate came first. This is the person who was first hired as an advocate
for the parents and then transmutated into an advocate for the Regional Center
against the excessive demands of aggressive and strident parents. The parents
used to be represented by a Regional Center advocate at these hearings, but
with budget cuts and all, parents are now generally serving as their own advocates.
They are then caught up in a process in which everything that happens is novel.
They are treated as non-professionals, and suspected of being biased observers.
As a result they are usually left twisting in the wind in a process that they
could not possibly master on first exposure.

The Regional Center person reported that denial
was based on the fact that neurofeedback was still considered experimental.
A second argument was on the basis of cost-effectiveness. A neurologist was
quoted as saying that the treatment had “no conclusive empirical support,”
and was experimental in nature.

The parents (whom I had not met previously) then
had their turn to describe the wonderful things that had been happening to their
child within only the first five training sessions, performed on a once-a-week
basis. The report on the first session was such that very little training could
have taken place due to the child’s resistance. He had to be held in the
chair by both parents. By session five, this seven-year-old now takes leads
the parents into the building, summons the elevator, runs to the EEG Institute
office, grabs Sue by the hand and leads her to the treatment room. Many positive
changes have been noted by the parents, probably only memorable now while these
changes are fresh in mind. Teachers have started to report changes. One sends
home a daily written report. All teachers have been kept in the dark on the
neurofeedback, so they remain “blind” to the training.

The child is involved in numerous other therapies,
among them behavioral interventions, speech and language training, social skills
training, gymnastics and sensory integration work. Favorable reports are starting
to come in. Given what we know, this places the issue of cost-effectiveness
into almost ludicrous relief. Asked the RC advocate meekly at the end of my
presentation in the rebuttal phase, “Just how do you know that the gains
are due to neurofeedback, given all the other things that are being done?”
“It is the speed of response, which we track session to session, not month
to month….” She was an early civilian casualty….

The judge was a kind, almost grandmotherly presence,
completely disarming. And she was open to what I had to say. She did not ask
me to cut the presentation short. I realized that this is the kind of person
who is persuadable. With respect to cost-effectiveness, we must consider the
societal cost of not solving the problems as well as the cost of solving them.
She admitted readily that I had given her new insight into autism, which she
appreciated.

I also neutralized the medical testimony on the
record: Showing her the thick Byers book of neurotherapy related references,
along with the other books, dealt tangibly with the matter of whether there
was research available, or whether we were dealing with the fevered imaginings
of an isolated ideologue.

Regardless of how this particular hearing comes
out for the family involved, it is clear to me that this kind of advocacy is
now worthwhile. Even if we don’t bring the edifice of resistance down
on first assault (military metaphors being now in vogue), it is clear that we
have shaken the foundations. If I had it to do over again, I would have brought
another advocate along, a practitioner who could have looked them in the eye
and said that neurofeedback allows me to accomplish things that I could never
accomplish before.

It is also true that published outcome studies would
be perfectly satisfactory for a setting such as this. It does not have to be
randomized controlled trials (RCTs) to satisfy an administrative law judge.
It was Carl Sagan who said “large claims demand strong evidence.”
There are, however, two ways to win this. In our case, the changing scientific
climate means that our claims are no longer as outrageous as they may have seemed
ten years ago. So strong evidence (in the form of large-scale RCT’s) is
actually no longer needed. Just evidence that would allow a judge such as this
to follow her heart and assent to this new therapy. We are in fact close to
the tipping point that we have been hoping for, where neurofeedback is accepted
and recalcitrants will hazard simply being left behind in the eddies and backwaters.

This entry was posted on Friday, April 4th, 2003 at 10:36 pm and is filed under Uncategorized. You can follow any responses to this entry through the RSS 2.0 feed. You can leave a response, or trackback from your own site.