"Why is the psychologist
asking for access to all these records?"
Recently there was some discussion
on an Autism support listserv regarding requests for records by psychologists
performing an evaluation of a child. The discussion all started when a
parent asked why a psychologist would need access to "all these
records" and stated that she did not understand why the psychologist would
need copies of "medical records". I was startled to see a
variety of parents and advocates arguing vigorously for the parent that raised
the question not to release any records to the psychologist conducting the
evaluation. The arguments all seemed to boil down to some sort of
resistance to allowing them to fall into the hands of the school system.
Many argued that the psychologist had no real need for access to medical
records, therapists evaluations (OT, PT, SLP, ect.), or even previous
psychological reports. The argument that the school having "all those
records" amounted to providing them with ammunition to "manipulate you
in undesirable ways." A school nurse offered that she did not need
access to such records but only to a summary to let her know what they child's
conditions are and how they need to be dealt with in the school and that
therefore a psychologist had no need for access to original records
either. One advocate even went so far as to offer that a lawyer she
frequently works with routinely councils parents never to sign releases for such
records and that if they already have signed such releases to withdraw them in
writing as quickly as possible. Many parents simply asserted that they did
not understand why the psychologist would need "all those records" and
that the records were "none of their business!"
I'll try to answer the essential
question of why the psychologist should always ask for access to
"all those records" and why it really is "their business" so
that parents can make a more informed decision if they are the recipient of such
a request in the future. I'll also try to make clear how the
psychologist's role as an evaluator is very different from that of the local
school nurse or even the teacher. This is a very disturbing
situation - more so because advocates and others weighed in with arguments that
demonstrate the assumption of an adversarial relationship between the family and
the school. It has been my experience that such a situation has always led
to decreases in the quality of the evaluation of the child and thereby to
greater limitations on how useful the evaluation can be in helping serve the
child. Hopefully a more complete understanding of the evaluation process, what
goes into conducting a comprehensive and professional evaluation, and how
records from various professionals fit into that process will assist parents in
the future.
First, let me give a hypothetical
case illustration that is not unlikely for a psychologist asked to evaluate a
school-aged child. A psychologist is asked to perform an evaluation for a
school (either as the schools psychologist or as an Independent Education
Evaluator) of an 8-year-old girl enrolled in public school. She presents
with aggression, self-injury, limited expressive language, poor socialization,
and nearly no receptive language. She is currently served with a AUT
(Autism) eligibility and her pediatrician has labeled her "Pervasive
Developmental Delay - Not Otherwise Specified" (PDD-NOS). She is
currently receiving Special Education services that include specialized language
instruction designed for students with autism, Speech-Language Pathologist
support weekly, Occupational Therapist intervention weekly, and adaptive
physical education from the school. She is privately receiving
Hippotherapy, melatonin, a Gluten and Casein free diet, and a variety of
mega-vitamin supplements. School records indicate that she started
receiving services at the end of her 3rd year of life and that previous
psychological and other evaluations are consistent in identifying her as falling
in the AUT eligibility category. This would appear on the surface to be a
fairly clear diagnostic picture - wouldn't it?
What many don't appear to understand
is that most psychological evaluations are not written for use by other
psychologists, or even other mental health professionals, but for use by
parents, teachers, administrators, lawyers, and even by the student themselves.
For this reason a psychological report needs to include accurate, objective,
timely, and useful information in a manner in which a reasonably well informed
lay-person can access. When an evaluation is written in jargon or
does not include enough information it is then easy for any of these consumers
to take the wrong information from the evaluation and make decisions based on
this mis-information. Let me give just one example: a
report I read recently stated that the child was the product of a full-term
normal delivery (what everyone hopes for because this presents the fewest
problems in a number of ways for both the mother and child). So, you might
ask, "What is the problem?" Well, that child was the
subject of a lawsuit in which the parents were suing the obstetrician for
negligence during the caesarian delivery of their 2 month pre-mature infant!
Did the psychologist even bother to ask the mother, father, or even the lawyer
that referred the child to him any of this or did he simply start typing his
report over an old one on his work-processor and forget to change that material?
In either case this is unacceptable performance for a "professional".
From a non-litigious perspective accuracy regarding the delivery issue is
important from a futures planning perspective and an evaluation in order to
better serve perspective because there are some specific learning issues that go
along with premature birth. So, quite aside from the legal issues, if this
report remained in the file and the child went to school with it available to
the teachers it might have undercut the appropriate evaluation of that child for
learning problems. This means
that relying only on summaries or non-original materials can potentially
seriously mislead the evaluator by providing false or incomplete information.
Assuming that the examiner can
adequately administer and score/interpret the devices used in assessing someone,
there are two main ways that a psychological evaluation can be inadequate.
In the first, the examiner can fail to review the background material and
previous reports thoroughly. In the second, the examiner can present
a battery of devices (tests) which do not address the areas of concern (either
completely enough or at all). When asked to evaluate a student the first
question that should be asked is "Why?". What is the
"referral question" that the person asking for the report wants
answered - essentially why did they think an evaluation by a psychologist would
be helpful and what specifically are they looking for from the report.
Early in my career I worked in several medical settings with physicians.
Now physicians know a great deal about the biology of behavior and the drugs
that can be used to alter behavior, thought, and emotions but they know darn
little about psychological assessment and formal psychometrics because they just
aren't trained in those areas. I would routinely have physicians write
orders for me to do "projectives" on a child without any rationale or
"context". Now it might be fine for a physician, who knows more
about such things than the nurse, to order blood work and to specify the blood
tests to be run by the nurse or technician - but this does not work for
psychological tests because they need a context in which to be placed and the
physician normally just doesn't possess the training to make the right
selection. Most of the time I would just talk with the physician and ask
them what they were thinking and what question they wanted answered and then
tell them I would do such-and-such tests and that worked out fine.
Occasionally I would run into a real "gunner" who would reiterate
their "order" for "projectives" and instead of butting heads
with them I would read as much about the patient as I could (in order to develop
a context) and do the tests I thought appropriate. More often than not
such "gunners" would thank me for having done the
"projectives" even when none were conducted or included in the report!
The right tool for the right job should be the watch words of anyone
psychologically evaluating anyone under any circumstances.
Does this mean that I look over a
patient, their records, and decide what tests to do for the evaluation and then
just do it? Of course not. A good evaluation is an evolving process
in which questions are asked, records reviewed, hypotheses are formulated,
tests administered, information reviewed, theories de-constructed, additional
assessments done, and both confirming and disconfirming information integrated
into some coherent picture of the person being evaluated. However, there
are indications in both the question and the history that point an aware
evaluator to certain starting points among the vast array of testing devices
available today.
An evaluator should require copies
of all past evaluations (including social, emotional, learning/cognitive,
psycho-motor, neurological and neuropsychological, speech/language, physical and
occupational therapy, and medical) to be made available for review. This
information, the question and the history, provides the context in which the
psychologist operates when designing and conducting the evaluation. This
context is the foundation upon which the selection between various devices and
procedures is initially based by the psychologist. Without a context such
a process is worse than useless - it is a waste of resources (both time and
money) better spent elsewhere. An inadequate foundation renders any
information gathered meaningless - just as any series of words taken out
of context are devoid of a broader meaning. I can not tell you the number
of reports I review annually that have neither a referral question nor a
detailed history of the person being "evaluated".
Now, to return to our hypothetical
case illustration of the 8-year-old girl referred for evaluation. The
evaluator asks for and receives releases to access a variety of records
held by various professionals and agencies in the process of developing a
context in which to place the evaluation. In reviewing these records there
are notes from various professionals regarding rumors that the girl had several
seizures when "very young" but that they did not reoccur and were not
treated nor evaluated by a pediatric neurologist. You also note in the
records that the symptoms of "autism" and "PDD-NOS" were
first noted "late in her 3rd year of life".
One hypothesis that should come to mind for a competent evaluator is
Landau-Kleffner Syndrome.
Landau-Kleffner Syndrome (LKS) is a
form of childhood epilepsy which results in severe behavior and language
disturbances. All children who have LKS have a history of abnormal
electrical activity in the brain and about two-thirds have observable seizures.
Some research indicates that EEGs performed more than 6-9 months after the
initial seizures will reveal no abnormal electrical activity. LKS results
in terrible changes in the child's pre-morbid (before the disease) behavior and
overall functioning. Onset is typically during the pre-school to early
elementary period. With LKS what you
see is a loss of both receptive and expressive language and in many cases a very
significant increase in aggressive behaviors. The child can literally no longer
understand what their ears still hear and their ability to speak is also
severely reduced.
For LKS there appears to be a developing standard
for treatment - an anti-seizure medication (lamictal, depakene, etc.) and
corticosteroids in combination. With LKS, in many children, the
combination of an anti-seizure medication and a course of corticosteroids in
combination results in significant improvement in the language and behavior of
the child. However, despite the cause being neurological and medical
treatment available, the treatment in not solely medical.
While for LKS there is a relatively effective
combination of medical treatments that appear to have a good track record the
addition of SLP and behavioral services are nearly always beneficial to the
child. First, let me say that in my experience working with the children
(and their families), with LKS appropriate diagnosis and treatment by a
Pediatric Neurologist specializing in children and rare disorders is essential.
I have seen too many LKS children who were seen by a generalist neurologist who
totally missed the diagnosis - and on more than one occasion had never heard of
LKS. I have never seen a child with LKS recover significant portions of their
language without some form of medical treatment (almost always the combination
of drugs mentioned before). It is also true in my experience (and there is some
support for this in the literature on LKS) that the longer the delay in seeing
an appropriate pediatric neurologist and getting treatment the lower the chances
of significant recovery of language and improvement in behavior for the child.
However, I have also not seen a child recover their language completely (or
nearly so) without focused support from a highly trained Speech-Language
Pathologist. In those children with LKS there is often a pronounced
increase in aggressive behaviors. Even with good medical intervention
directed by a well informed pediatric neurologist these aggressive behaviors can
continue (hopefully at lower intensity) without adequate behavior management in
place. So, in the case of LKS where there appears to be a clear organic cause
(seizures in the temporal lobe(s)) and some growing consensus on treatment
(anti-seizure plus corticosteroids) there remains the need for non-medical
treatment as well (SLP and Behavior Management).
Caveats - there is no excuse for the lack of an
adequate medical evaluation by the appropriately trained specialist when
children demonstrate significant changes in functioning. This paper is not
intended to convey any other opinion or recommendation. If your child has severe
changes in behavior (or even mild ones that seem odd or difficult to understand)
see your family physician immediately. It is also my recommendation that if
these changes involve language (its loss or degradation), memory, ability to
relate or orient, or involuntary movements of any kind that you seek a consult
and evaluation by a pediatric neurologist immediately. If the pediatric
neurologist tells you that it is not serious then no harm, but if you do not go
........ Remember that, for at least LKS, delays in obtaining appropriate
treatment may seriously reduce the potential recovery for many children.
Why release all those records to the
psychologist? The answer is that without them the psychologist can not
conduct an evaluation that meets the highest standards and which maximizes its usefulness
in serving the child. While I can not claim to have
"re-diagnosed" a huge percentage of children, I can say that if an
additional evaluation has been requested it is usually because of one of two
reasons, either the last evaluation is out-of-date developmentally (kids are supposed
to change) or someone is unhappy or unsatisfied with the last evaluation.
In either situation the evaluator should not rely on synthesized information
(someone else's interpretation of that information) where they are capable of
understanding the original information for themselves. It is the process
of collecting, interpreting, and integrating seemingly disparate information
that is the essence of the diagnostic process. An accurate and
comprehensive diagnosis is essential to developing the most likely to be
effective treatment regimen for the child. Therefore, "all those
records" are not optional and a competent evaluator needs them in order to
serve the child to the highest standards possible. Isn't that what we are all
interested in: serving the child to the highest standard possible?
Dr.
Montgomery is both a licensed psychologist and a Board Certified Behavior
Analyst. He directs the Autism Spectrum Assessment Program, has taught assessment to undergraduate and graduate students,
supervised both post-doctoral psychology candidates and those seeking board
certification in behavior analysis, and reviewed psychological reports for a
variety of agencies and in court. He is available to consult to you as a reviewer of
program standards, professional credentials and qualifications in the field of behavior analysis,
ABA, Functional Behavioral Assessment/ Analysis, and clinical and professional psychology
generally.
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