Archive for the ‘Exposing the Flaw of the Obstetric Compensation System’ Category

Exposing the flaw of the Obstetric Compensation System From the one who “should not exist” By Masayo Furui (Representative of the Society for the Health and Life of People with Cerebral Palsy)

2008-11-26

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The Obstetric Compensation System came into effect onJanuary 1, 2009.  The system is supposed to “prevent, or lead to the prompt settlements of, disputes by compensating for no-fault liability of medical institutions”.  The government justifies this system by proclaiming it as the savior of the ailing obstetric medical care.  They say that by preventing “cerebral palsy (CP) lawsuits”, this system will reduce obstetrician’s currently high exposure to potential lawsuits and put a stop to the obstetrician shortage.  The people who drew up this system carefully removed the words “no-fault liability” from the naming of this new system.  They must have felt uncomfortable with the word “fault”.  However, in doing so, they have turned a blind eye to the fundamental problem of labeling a disability as a fault.  We need to reconsider this flawed system which is based on such fundamental problem.

What our society has learned and can learn from people with CP

In the early 1950’s, there were only a few medical institutions that could make a definitive diagnosis of CP.  In those days, being diagnosed with CP was more devastating than being diagnosed with a fatal illness. On the train home after being told that I have CP, my mother was about to jump from the running train with me in her arms.  My grandfather was the one who stopped her and told her that “this child is as much our family as any”.

Now, more than a half a century later, my mother, who contemplated suicide with me in her arms, suffers from impairments due to a traumatic brain injury caused by a car accident.  She also has depression, tumors, and dementia, and is in need of long-term care.

During that half a century or more, I, the one people thought “should not exist”, lived as a person with CP in the local community, making relationships with people around me, and saying what needs to be said.  I gave birth to three children and raised them.  Like many others with severe disabilities, I acquired the skills and knowledge needed to lead an independent life; utilizing the technologies and services available to get the care I need.  With the proper skills and knowledge, it is possible to lead a “normal” life regardless of physical abilities.  This lifelong achievement of mine is what my mother ultimately relies on now.  My mother left my father a few years back and is now living with me.  My father had been the care taker of my mother, but after he was suddenly diagnosed with Parkinson’s disease, he did not know what to do.  He felt taking care of my mother was too much for him and started sending her to short-stay nursing homes.  My mother became worried about her quality of life and so, decided to come live with me.

Most elderly people who need care do not know how to live with their disabilities.  Worse still, they were perfectly “normal” all their life, and now suddenly they feel “abnormal”.  This causes embarrassment, confusion, and panic.  This is where I think we can help.  People with CP are like “experts” at being disabled.  We can show them the ropes.  I know that people who became disabled recently will see us and think “I’m not as bad as them”, and that’s OK.  That’s the first step.  We’re used to that kind of attitude.  We can laugh it off.  That’s been the story of my life for more than 50 years.

I have seen people who worked too hard on rehabilitation and made their conditions worse.  I have seen people completely lose self respect from an inferiority complex.  I have seen many kinds of people.  From my experience, the first thing I told my mother was “to be forewarned is to be forearmed”.  I encouraged her to use a powered wheelchair when she was still somewhat able to walk.  My house is mostly wheelchair accessible (it is hard for me to live otherwise).  This environment allowed my mother to continue to do what she can.  Many of the elderly give up trying to use a powered wheelchair, because they cannot get use to them (it’s not as easy as it looks!) and their houses are not wheelchair accessible.  Until recently, despite her dementia and inability to walk, my mother went to her weekly doctor’s appointments by herself.  So today, her daughter with CP changes her diapers and arranges for her daily care, allowing her to live with her family with dignity.

 There has been many recorded cases all overJapanwhere people with CP are taking care of their elderly parents and teaching them how to live with their disabilities.  This is why several researchers advocate that people with CP are the ones who can guide our aging society and teach us how to live with disabilities and to lead an independent life utilizing available resources.

From a young age, people with CP have often been treated as the ones who “should not exist”.  People with CP had to fight against this treatment.  We learned to accept ourselves as who we are and discovered the meaning of life.  This is why, inJapan, people with CP were often the ones representing and speaking out for people with disabilities in various situations including disability rights organizations. Japanis the only country in the world where people with CP have continued to be the driving force of the independent living movement.

After all that we have been through, in fighting discrimination and proving our worth, this new system is trying to single out people with CP and position us once again as the ones who “should not exist”!  This system was thrown together hastily as a quick-and-dirty fix in a half-hearted effort to curb the nations growing concern over the falling birth rate and obstetrician shortage.  It seems the despair people feel towards their future and dejection in their lives has reached a breaking point.

Is CP a 30 million yen burden?

In 1966,HyogoPrefecturewas promoting their “campaign to stop the births of unfortunate children” blatantly calling children with disabilities as unfortunate.  At the time, it is said that there were comments like “while a non disabled person make 200 millions yen during his/her lifetime, a person with CP creates a debt to society of more than 200 million yen”.  These are words that people with disabilities will never forget and that haunt us till this day.  When society tries to eliminate differences, people with CP are always the first to be targeted.

A mother’s cry, “My child does not have CP!  It’s Polio.” shows the devastation people feel at the mention of CP.  The more people fear CP the more the “price” of CP hikes up.  CP has become the scapegoat in this world where private insurances set “prices” on people’s fears in the form of compensation amounts.

The new Obstetric Compensation System tells us that having a child with CP is like drawing a shot straw.  It tells us that because any one of us may be the ill-fated one that ends up with a child with CP, we should all chip in to save the unfortunate few.  And a curse is placed on having CP yet again, as the ones who “should not exist”.

This system claims its purpose is to prevent CP lawsuits, but the fact is, it is just a shameless campaign to say that “CP is a 30 million yen burden”.  It is not the lack of money that causes the endless murders of children with CP by their parents.  It is the shame, devastation and despair towards the children’s future that lead them to such atrocities.  The new Obstetric Compensation System will only intensify these feelings.

Victims of pollution claim that monetary relief alone cannot give victims back their lives.  I actually had a chance to talk with victims of pollution in the past.  They explained that while they continue to feel like “victims” and are treated as “victims” from others and society in general, it is very difficult for them to construct their own lives and move forward.

 

An absurd screening and outrage to humanity in the name of science

In the past, CP was thought to be primarily caused by hypoxia (low oxygen level) during delivery.  This is why obstetricians have been blamed for malpractice.  However, in recent years, it has become clear that hypoxia during delivery count for less than 10% of the causes of CP and that CP often stems from congenital reasons.  Therefore, to claim that most CP is caused during delivery is false.  It has also become known that the probability of CP in full-term delivery is rare and constant.  This means it is possible to predict the number of compensation claims if coverage is limited to these rare cases and build a profitable indemnity insurance scheme.  However, this logic completely ignores bioethics.  What gives us the right to screen out babies based on chromosomal abnormalities, premature births, and low birth weight?

Are we saying that giving birth to these babies, who are not covered by this system are the sole “responsibility” and “choice” of the parents?  Are they not to be supported by our society?  Is this not negligence on the part of the social security system and just a way of pinning responsibility on just the people involved?  Isn’t this replacing medical ethics with economics?  The Obstetric Compensation System is leading us in this direction under disguise.

There are even greater worries for our society.  It seems natural to expect the public to hold some critical opinions, and the recipient of the 30 million yen will endure the brutal yet honest and simple public sentiment “so you’re the one who received the money”, “what a waste of tax payer’s money”.

Conditions of CP are visibly recognizable and therefore are very easy to spot, but it is not possible to tell who was born with a full-term delivery and who did not meet the criteria.  But it is not possible to tell who the recipients are and all people with CP will be pinpointed as burden on society.  With this added stigma placed on all people with CP, especially children with CP, their parents will face further beleaguer, and I fear this may cause increases in the number of murders and child abandonment (neglect) of children with CP by their parents.

In 1970, Kouichi Yokotuka said “People with disabilities or families of children with disability are ostracized from society.  We must understand that ostracism, locking away in an institution, and murder of people with disabilities, all three of these actually stem from the same underlying idea.”  Nearly 40 years later, the world is still filled with the idea of elimination of what they see as being undesirable.

It is time to move towards a convivial society

The government claims that the obstetrician shortage is mainly caused by the fear of being pinned with the responsibility of causing CP.  The problem with this argument is that the basic premise of the argument is false.  It implies that CP is unacceptable, that children with CP “should not exist” in the first place.  If this system’s true purpose is to distinguish non-fault liability from malpractice and this is just a ploy to fund the malpractice investigation, than the government should openly admit that that is what it is trying to do and stop using this system as a guise.  To make CP the epitome of tragedy and to use CP as a pawn for collecting 30 billion yen annually, and then to use the profits from the insurance to create more plum jobs for ex-government officials to run the administrative agency of the Obstetric Compensation System is just criminal.  But what is most unforgivable is that this new system will inevitably cause a divide in the brotherhood and sisterhood of people with CP.

I have lived my whole life as the one who “should not exist” and did not shy away from it.  I stood proud and advocated throughout my life that “there is nothing wrong with CP.”  This system goes against everything I believe in and completely negates me and my life.  If you are serious about achieving a true convivial society and creating a society conducive to an aging population, then please come and talk to the people with CP.  We have learned to survive as the ones who “should not exist”.  We are the embodiment of a convivial society, and we have been sending out our message for 40 years.  If only someone in the government would have listened to us sooner, things may have been different.

What is the Obstetric Compensation System?

This is a system that uses a private indemnity insurance to compensate a sum of 30 million yen when cerebral palsy (CP) is caused during the delivery process.  This system covers the no-fault liability of medical institutions and aims to reduce obstetrician’s currently high exposure to potential lawsuits which is thought to be a cause of the obstetrician shortage.  For each delivery, the childbirth facilities will pay a premium of 30,000 yen to the administrative agency “Japan Council for Quality Health Care (JCQHC)” to join their private insurance.  The childbirth facilities will collect the 30,000 yen premium from expectant mothers (it is included in the total payment to the childbirth facility).  The lump sum payment for childbirth covered by the health insurance system has been increased to off set the price of this premium.  Compensation eligibility is limited to CP with a certified 1st or 2nd degree severity which occurred during normal delivery.  Premature babies and disabilities due to congenital reasons are not covered.  Criticism of this system includes “welfare for people with disabilities need to be covered by the public social security system and not by a private insurance”, and “this can be used as a ploy for securing employment for ex-Ministry of Health, Labor and Welfare officials”.

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