EXPLOITATION: BEWARE OF
THE PARENT'S TRAP
Exploitation is the taking advantage of parents
who are vulnerable and willing to do whatever it takes to "cure"
their children who have autism, Asperger's syndrome or other special
needs.
What makes parents vulnerable to being exploited?
When parents are often in shock and denial about
their child's disorder and delays, they can lapse into magical and
fantasy thinking and seek a cure or "silver bullet" to
make their children "normal." This makes them very vulnerable
to offers of help from professionals who claim to have the magical
touch, or miracle cure to help make their children better, cured
or healed. These parents are unfortunately often willing to pay
whatever it takes to get the magical cure to make all things right
for their child.
What do vulnerable parents look like?
Vulnerable parents may engage in a number of the
following activities:
Spend whatever it takes
There is a willingness to spend whatever it takes
to get the "best" treatments, doctors, therapists, programs,
schools etc to "fix" or "cure" their child.
Doctor shopping
Looking for just the right doctor, therapist,
teacher, program which will make things better for their child.
Blame the doctor
Fighting with the child's treating professionals
because the child is not progressing at the rate which the parents
had hoped the child would progress given the "hope and promises"
provided by the professional or program.
Doctor buying
Offering professionals, with "good reputations,"
sums of money, goods, services etc which will entice the professional
to get involved with their child.
Shoot the doctor
Walking away from the "messenger bearing"
professionals who give the "bad news" concerning the developmental
disorder because it is "too much" to emotionally absorb
and seeking out professionals who will have more "positive"
or "optimistic news" to give them about their child.
Guilt-induced hyperactivity
Getting so absorbed in the "treatment"
of their child that they have little or no personal time, for fear
that their child will not progress or regress if they do not dedicate
themselves 150% to the curing and healing of their child.
What does exploitation look like?
Parents who are being exploited often experience
one or more of the following behaviors from the professionals who
are treating their children.
Dual relationship with parents
Professionals are in many states legally and in
all cases ethically not supposed to personally benefit financially
or business wise from involvement with the parents of children who
are or have been under their professional care. Examples of this
could include parents giving money, over and above the professional
fees being charged to provide the services to the child, directly
to the professional or indirectly by paying a third party associate
of the professional. This third party could either be related to
or involved in a business dealings with the professional. Parents
might lend money to the professional or enter into a business relationship
or partnership with a professional or a professional's associate,
such as buying a house or car from the professional, opening a new
company or business with the professional.
The Golden bullet promises
This mean that the professional presents parents
with false, deceptive, or misleading advertising and promises that
their specialized treatment is the "Key" to a cure for
their children. In many states this is illegal and in all cases
it is unethical. A sample state statute for Licensed Psychologists
in Florida states: 64B19-17.002(d) False, deceptive, or misleading
advertising or obtaining a fee or other thing of value upon the
licensee's representation that beneficial results from any treatment
will be guaranteed.
Inordinate lifestyle change
This means that parents being encouraged to make
radical changes in their current family life so that child can receive
the services of the professional. This could involve the family
being uprooted and moved to where the "desired" professional
or program is located, or taking on second jobs or loans to afford
the services of the "desired" professional or program.
It could also involve a professional encouraging a family to completely
disrupt their normal family cycle or routine to meet the inordinate
number of hours of intervention dictated by the "desired"
professional or program.
Guilt letting of parents
This means the professional plays on the guilt
of the parents to manipulate the parent to go to "extraordinary
efforts" to "fix" their child. This is illegal in
many countries and is unethical in all cases. It involves inappropriate
representation of the "power" of the treatment being offered
the child. Hints of this include making the parents think and feel
that no matter what they do for their child is "never good
enough," "done well enough," or "sophisticated
enough" to "fix" the child. A professional may suggest
that parents can never spend "too much money," "too
much time," or "too many personal or physical resources"
on their child in order to "fix" the child, or convince
the parents that only this one particular professional or program
is "right" of their child and that they would be doing
irreparable harm to their child if they changed professional or
program for their child.
Blaming the parents
This means the professional blames the parents,
if the child is not making substantial developmental progress. The
professional does not appropriately inform the parent that each
child is different (principle of individual differences) and that
there is no predictable pattern to expect in the progress a child
will make as a result of being involved in the therapeutic process.
It might involve embarrassing and humiliating
parents verbally and non-verbally by blaming them for the fact that
their child is not progressing or changing quick enough or substantially
enough. The message given in this case is that "of course it
is not the fault of treatment offered by the professional"
but rather the lack of extensive follow through on the part of the
parent that explains the lack of progress. REALITY is - due to individual
differences, the child is not be progressing. This might be due
to being on a developmental plateau or because the prescribed treatment
does not work with this child like it does with others.
Gauging the parents
This means the professional charges exorbitant
fees for services and treatments. These fees are typically not customary
or ordinary in the professional's respective professional field.
It could involve taking advantage of the shortage of trained professionals
or shortage of the desired medication or treatment in a community
and therefore charging sometimes-double, triple and in few cases
eight times as much as what the service or treatment would ordinarily
cost.
What do you do, if you think you are being exploited?
If you feel you are being exploited by any of
the professionals involved in working with your child, first confront
the professional and ask for such exploitation to cease. Second:
if the professional continues to be exploitive then contact the
professional's respective professional association or state licensing
or certifying board and file a complaint.
Principles of Ethics for Medical, Therapeutic and Developmental
Specialists Who Work with Children with Special Needs
Professionals serving children with communications
and learning disorders will embrace the children’s welfare as their
primary professional responsibility. Professionals will respond
promptly and expertly, without prejudice or partiality to the needs
of these children and their families.
Professionals will respect the rights and strive
to protect the best interest of these children whose parents are
vulnerable due to their emotional state of shock, loss, and grief
and as such often have a diminished decision making capacity and
thus are impeded in making appropriate treatment choices.
Professionals will communicate truthfully with
parents and secure their informed consent for treatment. They will
protect families’ privacy and disclose confidential information
only with consent of the parents when required by an overriding
duty to protect others or to obey the law.
Professionals will deal fairly and honestly with
colleagues and take appropriate action to protect these children
and their families from health care and developmental interventionists
who are impaired, incompetent, or who engage in fraud or deception.
Professionals will work cooperatively with others
who care for these children and their families and also advocate
on behalf of these children and their parents with any third party
payer (insurance company, HMO, state agency, or school system) to
insure that all appropriate and needed therapies, treatments, and
programming are provided and reimbursed.
Professionals will engage in continuing study
to maintain the knowledge and skills necessary to provide high quality
care for children with communication and learning disorders and
their families, and act as responsible stewards of the health and
developmental care resources entrusted to them.
Professionals will support societal efforts to
improve public health and safety, reduce the effects of developmental
communication and learning disorders, and secure access to appropriate
early intervention and other treatment services for children with
communications and learning disorders no matter how severe or minor
their disorders may be.
closing thoughts
Dr. Mark Rosenbloom the founder and President
of the Unicorn Children's Foundation, at the November 1998 ICDL
Conference, gave a heart rendering plea for the end and prevention
of the exploitation of parents of children with communication and
learning disorders. Dr Rosenbloom shared with the audience the following
Physician's Prayer that eloquently emphasizes the type of spirit
and attitude, which parents ought to be able to expect of the professionals
who are involved in working with their children.
The physician's prayer
Supreme God in heaven — Before I begin my holy
work to heal the human beings whom Your hands formed. I pour out
my entreaty before Your throne of glory, that You grant me the strength
of spirit and great courage to do my work faithfully, and that the
ambitions to amass riches or goodness shall not blind my eyes from
seeing rightly. Give me the merit to regard every suffering person
who comes to ask my advice as a human being, without any distinction
between rich and poor, friend and foe, good person and bad. When
a person is in distress show me only the human being. If physicians
with greater understanding, give me the desire to learn from them,
because there is no limit to the learning of medicine. But when
fools insult me, I pray: Let my love of the profession strengthen
my spirit without any regard for the advanced age of the scorners
and their prestige. Let the truth alone be a lamp to my feet for
every yielding in my profession can lead to perdition or illness
for a human being whom your hands formed. I pray You, compassionate
and gracious Lord, strengthen and fortify me in body and soul, and
implant an intact spirit within me.
From the writings of Rabbi Moshe ben Maimon
Coping.org is a Public Service of James J. Messina,
Ph.D. & Constance M. Messina, Ph.D., Email: jjmess@tampabay.rr.com
©1999-2007 James J. Messina, Ph.D. & Constance Messina, Ph.D.
Note: Original materials on this site may be reproduced for your
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