Disability Care and Support
Public inquiry

03 August 2010

Email: 
disability-support@pc.gov.au

Submission from:
Professor Fiona Stanley AC
Director
Telethon Institute for Child Health Research

Our Institute (Telethon Institute for Child Health Research) has done research on perinatal and paediatric epidemiology with a special interest in cerebral palsy, birth defects, intellectual disabilities and other developmental disorders for many years. We research the causes and prevention of disabilities and of course our interests also cover the kinds of problems that families with disabilities face as the child is diagnosed, treated, supported and cared for and how these needs change over the whole life span. Professor Helen Leonard has conducted surveys on the needs of families with a range of intellectual and other disabilities (eg Down Syndrome, Rett Syndrome) and may well be submitting in addition to this letter. However all of the researchers in this Institute who are conducting research here strongly support the concept of a national insurance for disability as has been proposed by Bruce Bonyhady. In fact, as you can see from the list of attached papers it is something that both Professor Eve Blair and I have been suggesting for many years.

I am sure that you will be inundated with support for this proposal from those who have disability in their family and from those groups which help to care for them. We strongly support their arguments and do not need to repeat them here. Our main additional reasons may not be widely appreciated which is the main reason for this letter.

1. LITIGATION HAS HAD A VERY NEGATIVE EFFECT ON SOCIETY AND IS NOT GOOD FOR FAMILIES EITHER 
As outlined in several of the papers below we make the case that litigation as the major way for families to seek compensation and funding for disability has been a disaster. It has been shown to be a bad way to get money to support (the very small number of eligible) families, to have had a devastating impact on obstetric care and other health care provision as well as a range of other community activities such as adventure playgrounds and facilities which can no longer afford the insurance premiums.  

The list of papers below spell some of this out in greater depth – specifically my paper “Litigation versus Science”; Eve Blair’s “where does and where should the money come from?”; and then the series of papers about cerebral palsy, birth asphyxia and the impact of obstetric litigation  for cerebral palsy on obstetric care.  We make the case with strong and compelling data that it is impossible to prove that “poor” obstetric care resulted in the brain damage seen in cerebral palsy cases and yet time and time again, so-called expert witnesses give evidence to show that it was likely (even in cases later shown to be genetic). The impact of obstetric litigation on both the practice of obstetrics and on the costs of insurance premiums for obstetricians and midwives (and hence the costs to the health services and the consumer) have escalated alarmingly. These costs, added to the fear of being sued, has resulted in many obstetricians leaving the discipline and fewer being available to deliver babies.  It has also resulted in a dramatic increase in obstetric interventions like caesarean sections (now up to 30% of all deliveries in Western Australia) – so called “defensive obstetrics” - in spite of our (and others) data showing that these increases have had NO impact on reducing the chances of disabled children such as those with cerebral palsy, and has detrimental effects on both mother and child. Cerebral palsy rates have not fallen as the caesarean section rates have risen.

We called repeatedly for a separation of – a) a scheme (such as national insurance as proposed) to adequately fund the cost of a disabled person over their lives which is totally separated from b) a method of ascertaining the cause of the disability and apportioning blame and punishment if poor care, negligence or malicious intent led to the person becoming disabled.

We believe from the literature and from talking to families and their advocates that the process of litigation is not good for families either  - few are eligible (see causes of childhood disability below) and even fewer seem to win their cases, the process is prolonged with many taking years to come to some conclusion, of the money eventually paid out, much goes in legal fees and the time spent fighting the case takes a huge toll in time and energy on a family needing to come to terms with how they cope with a disabled child.

2. THE CAUSES OF DISABILITY IN CHILDHOOD 
Most causes of physical and intellectual disability in children are unknown or due to factors beyond the control of any group or health professional to influence such as genetic factors, biological risks (brain developmental disorders, haemorrhage or clots in the brain during pregnancy), infections in pregnancy, substance abuse, toxic environmental factors (mercury, lead, PCBs etc), early delivery or poor growth in-utero. After birth some genetic risks are still diagnosed quite late in childhood (eg intellectual disability, Rett Syndrome), neonatal complications of early births (brain haemorrhage, infections) and after the first year of life accidents and injuries start to play a major role. Many causes are associated with poor social circumstance with a variety of possible risk factors. The main message here is that even in those which may seem to the public to have a clear cause – such as “birth asphyxia or lack of oxygen” in labour – when we research it properly we can see that the majority of the pathways commenced well before labour.

Hence due to the challenges of ascertaining causes of disability in all but the most obvious (eg accidents) it would seem best, most humane and fair if there was a scheme that paid for all disability rather than a scheme that depended on suing those we think caused the problem. For all the reasons we outline above and in our published work, a national insurance scheme is the best and most sure way to give disabled people and their carers the support they need to live in our society with dignity and capacity.
		
We strongly support the proposal for national insurance for disability for its equitable, logical and humane approach. I am happy to give more information or to be contacted to answer any questions as are the other researchers in the Institute.

REFERENCES

Papers:
Stanley FJ and Watson L.  The cerebral palsies in Western Australia:  Trends, 1968 to 1981.  American Journal of Obstetrics and Gynecology 1988;158:89-93.

Blair EM, Stanley FJ.  Intrapartum asphyxia: A rare cause of cerebral palsy.  Journal of Pediatrics 1988; 112: 515-519

Stanley FJ, Blair E.  Why have we failed to reduce the frequency of cerebral palsy?.  Medical Journal of Australia 1991;154:623-626.

Blair E, Stanley F.  When can cerebral palsy be prevented?  The generation of causal hypotheses by multivariate analysis of a case-control study. Paediatric and Perinatal Epidemiology 1993;7:272-301.

Blair E, Stanley F.  Aetiological pathways to spastic cerebral palsy. Paediatric and Perinatal Epidemiology 1993;7:302-317.

The Australian and New Zealand Perinatal Societies.  The origins of cerebral palsy - a consensus statement. Medical Journal of Australia. 1995;162:85-90. Also submitted to:  The Australian and New Zealand Journal of Obstetrics and Gynaecology,  Journal of Paediatrics and Child Health,  Australian Health Law Bulletin and  Journal of Australian College of Midwives.

Stanley, FJ 1995. "Litigation versus science: What's driving decision-making in medicine." The University of Western Australia Law Review 25: 265-282. (ATTACHED)

Blair E.  Can medical evidence be objectively assessed?  Australian Health Law Bulletin 1996;4:73-77.

MacLennan A. for the International Cerebral Palsy Task Force.  A template for defining a causal relation between acute intrapartum events and cerebral palsy:  British Medical Journal 1999;319:1054-1059. Also reprinted Australian and New Zealand Journal of Obstetrics and Gynaecology  2000:40:13-21.

Blair E.  2000. More on asphyxia, cerebral palsy and litigation.  Australian and New Zealand Journal of Obstetrics and Gynaecology 40;1:93-96. (ATTACHED)

Leonard H, Fyfe S, Leonard S, Msall M. Functional status, medical impairments, and rehabilitation resources in 84 females with Rett syndrome: a snapshot across the world from the parental perspective. Disability and Rehabilitation. 2001;23:107-117

Leonard S, Msall M, Bower C, Tremont M, Leonard H. Functional status of school-aged children with Down syndrome. Journal of Paediatrics and Child Health. 2002;38:160-165.

Blair E.  Where does – and where should – the money come from?  Disparity: policy practice & argument.  Published by ACROD Ltd. Winter 2003:  pp.16-20 (cover article) (ATTACHED)

Blair E. 2003, May 8th.  ‘Legal maze added pain for disabled’.  Opinion article, p.23 West Australian. (ATTACHED)

Laurvick CL, Msall ME, Silburn S, Bower C, de Klerk N, Leonard H. Physical and mental health of mothers caring for a child with Rett syndrome. Pediatrics. 2006;118(4):e1152-1164

Bourke J, Ricciardo B, Bebbington A, Aiberti K, Jacoby P, Dyke P, Msall M, Bower C, Leonard H. Physical and mental health in mothers of children with Down syndrome. Journal of Pediatrics. 2008;153(3):320-326.

Books, reviews, and chapters:
Blair E.  Obstetric antecedents of cerebral palsy.  Invited review for Fetal and Maternal Medicine Review 1996;8:199-215.

Alessandri LM, Leonard H, Blum LM, Bower C. Disability Counts: A Profile of People with Disabilities in Western Australia. Perth: Disability Services Commission; 1996. p. 1-137.

Stanley FJ, Blair E and Alberman ED.  The Cerebral Palsies: Epidemiology and Causal Pathways.  London: MacKeith Press; 2000

Stanley F, Blair E.  2001 Obstetrical responsibility for abnormal fetal or neonatal outcome.  Chapter 45 In Chamberlain G.2001  (ed.) Turnbull’s Obstetrics 3rd edition. Churchill Livingtone pp709-719.

Blair E. Stanley F. 2002  Causal pathways to cerebral palsy.  Current Paediatrics.  12(3);179-185.

Letters:
Blair E. Cerebral palsy and intrapartum care:  wrong denominator used.  1994 British Medical Journal 309:1229.

Badawi N, Kurinczuk JJ, Keogh J, Blair E, Stanley F.  Medico-legal aspects of birth asphyxia:  A paediatrician's perspective. Journal of Pediatric and Child Health.  1995;31:57-63. (ATTACHED)