Newsletter No. 35

MHYFVic Annual General Meeting
The MHYFVic Annual General Meeting for 2012 will be held on Saturday 10th November at the Cairnmillar Institute, 993 Burke Road, Camberwell at 1.45pm for a 2.00pm start. After a short business session there will be a selection of papers from presentations made at the recent IACAPAP Congress.
Membership subscriptions of $20 for 2012-13 are now due.
“ADVOCACY FOR THE MENTAL HEALTH OF THE YOUNG AND THEIR FAMILIES:
PERSPECTIVES AND PROPOSALS PUT IN PARIS!”
Suzie Dean will introduce three of twelve advocacy papers organised by MHYF Vic at the recent 20th World Congress of The International Association of Child and Adolescent Psychiatry and Allied Professions (IACAPAP), which was held in Paris.
Paper 1: “Bringing together brains and minds: The challenge of professional, child and family collaboration to promote optimal development in early childhood”
Sarina Smale discusses the early childhood area, to show how effective advocacy relies upon people striving together toward common goals.
Paper 2: “In the beginning and the pain of before”
Jo Grimwade reports his research on intake and referral in Child and Adolescent Mental Health services, and how, at the very beginning of contact, the voice of the parent as advocate must be heard more clearly by the overall service.
Paper 3: “A strategic proposal to advocate for increased funding in child and adolescent mental health”
Chris Smale draws out the essential elements of advocacy to governments, and then argues for collaboration with professions beyond mental health.
History Corner, 1963
At the twentieth IACAPAP congress in Paris, France, in July this year, MHYF Vic sponsored a symposium on consumers and carers. The contribution from France was an overview of the efforts to establish an association of parents of autistic children. The address was given in English by a veterinarian from Toulouse, Dr. Jean-Louis Agard (Vice Président de la Fédération Française, Sesame Autisme). A summary of the address follows (please note that the translation into English by the author was rather quirky, and sometimes difficult to understand. In the following the quirkiness has been retained, even if the meaning is not always clear).
For Dr Agard, two historical events are important: at the beginning of the nineteenth century a new interest for the spirit diseases and for the children considered as “idiots”, with Esquirol, after Pinel (see Berrios,1989).. The French revolution separated the mad, from the sad, from the bad, and from the political prisoner (Foucault, 1961/1971). However, it was not until 1942 that a few religious institutions and professionals existed for “the observation” and “sorting” for defective children, in moral danger and/or in wandering.”
The French third republic, in 1901, established the right of association. Associations grew very quickly. In 1948, for the first time in France, in Lyon, an association of parents of mentally handicapped children was created: ALPERI (Association Lyonnaise de Parents d’Enfants Retardés et Inadaptés: Lyon’s association of parents of delayed and unsuited children). His led to the formation of UNAPEI (Union Nationale des Associations de Parents d’Enfants Inadaptés: National union of associations of parents of unsuited children). In 1960, there were 56 affiliated associations, but an absence of facilities for mentally handicapped children and adults so parents took on this mantle.
Unfortunately, UNAPEI did not recognize the diagnosis of autism, so, in 1963, ASITP (Association au Service des Inadaptés présentant des Troubles de la Personnalité: Association with the service of unsuited presenting personality disorders) formed. It is the first association of parents of children and adults with autism created in Paris and has since become FFSA (French Federation, Sesame Autisme). The purpose was to create institutions and services for persons with autism. In the same year the first specific institutions were opened in Paris: day hospitals.
Changes started to happen at national and international levels with the influence of researchers such as Wood (1975), Bury (1979), and Schopler (Rutter & Schopler, 1978; Schopler & Reichler, 1976; Schopler & Mesibov, 1979; Schopler, Reichler, & Lansing, 1980). Wood, through his work for the United Nations on the Declaration on the Rights of Disabled Persons (1975), and for the World Health Organization’s (1976) International Classification of Disease, reconfigured disability as “situations of handicap”, in Bury’s terms. National and international policy statements also appeared.
The United Nations publications (1975, 1976) were prompted by two pieces of French legislation of 1975 where all citizens, disabled or not, were granted equal access to services, transport, and education (Cros-Courtial and Vericel, (1998). The legislation was followed by the European Charter of Fundamental Rights in March, 1981 (Hervey & Kenner, 2003).
In June, 1983, Europe Autism was established at a meeting in Paris. By1988, there had been an explosion of the movement. At that time, French professionals were still impregnated with psychoanalytical ideologies and some managers of ASITP had made strong friendships with this environment. However, from the beginning of the 1970s, in North Carolina, Eric Schopler had instituted the TEACCH program (Schopler & Reichler, 1976) and French families became aware of this program. These families learnt that in North Carolina one does not make the parents feel guilty but one needs their collaboration; professionals inform parents what one does with their children. This was in contrast to the strong wounding families felt through the ideas of Bettelheim’s (1967) disciples and the most of the psychoanalysts of that time. From the Schopler point of view, the families felt that they were no longer considered as evil.
In 1989 a rupture occurred with some parents no longer accepting the dominant ideology in France: the psychoanalytic. These parents left ASITP and created Autisme France with opposition to institutional care (autistic people need to stay in an ordinary environment) and against any psychotherapy (autistic people don’t need therapy, they need education).
In 2005 in France there was a major overhaul of disability policy (Calvez, 2010). This has been well received and raised hopes among parents.
The innovations of this law were:
– commission of the rights and autonomy: families are better listened but the responsibility depend of the department and the disparity is big.
– the payment of a service of compensation: what is compensation for the autistic people?
– the effective participation to the social life: too much exclusion yet exists!
– the will to place the handicapped person in the middle of the device relating to him : what a wonderful project!
School inclusion: the legal obligation to register the child at the school gave the illusion that all children will be accepted in the ordinary school: it means become normal. In front of that movement of “standardization”, families claim more and more, with the support of the most autonomous, a life in open and ordinary environment. The association’s manager tried to transform or to make evolve the accompaniment towards little unities but they encounter logics strictly budgetary.
Today we see a double movement in mental health associations:
– dispersion in a bunch of associations: the associative movement, unquiet about the type of technique of accompaniment, ambient selfishness, in fighting with ideological currents but overall financial interests exploited by sharks the majority professionals but sometimes also parental.
– on the opposite regroupings of associations: five greatest French associations regrouped in a “collective” last year. But not without difficulties:
o human problem of personalities
o ideological problem: towards appeasing, yet during work with “high ranking authorities in health”, we see that convergences are stronger than divergences.
o Strategic problem: evolution of mental health service provision and the speed of the events support actions step by step, without long term vision!
Evolution of mental health policy and services is also function of the age of the parents.
For parents of adults or of very defective children, the priority is to find a home. They go towards the associations of managers to find protection and security. Young parents, on the contrary, stay to hope of normality, even to cure. They seek to offer their child all the possibilities and they often are the prey of the sharks that make autism a juicy trade.
For the future: associations work to take into account the capacity of the autistic people that recognize and cultivate their skills in order to develop them to take a natural part in society.
The work of mental health associations, parental and societal, must be to act against the “crocodilian reflex” of fear regarding the economic depression and to support empathy and attachment toward disadvantaged groups. And overall, we must to fight against the shift between the law that only recognizes “deficiencies” and the family claims for recognition and development of “the skills”.
Parental associative movement will continue to evolve, but it’s a BIG, BIG, BIG, program!
It isn’t in the bag yet!

References
Berrios, G. E. (1989). Obsessive-Compulsive Disorder: Its conceptual history in France during the 19th Century. Comprehensive Psychiatry, 30, 4, 283-295
Bettelheim, B. (1967). The empty fortress; infantile
autism and the birth of the self. New York: Free Press
Bury, M. R. (1979). Disablement in society: towards an integrated perspective. Chronic illness as biographical disruption, 181.
Calvez, M. (2010). The disabilities 2005 policy in France: an opportunity for the development of disabilities studies. In Proceedings of Third European meeting of EHESP School of Public Health: Limitations, disability and dependency: how to measure, how to train? Amsterdam, Netherlands.
Cros-Courtial, M. & Vericel, M. (1998). Case study: Legal classification of disabled people in France. In J. M. Stellman, (Ed.) Encyclopaedia of Occupational Health and Safety, (4th edn), International Labor Office: Geneva, Switzerland.
Foucault, M. (1961/1971). Madness and civilisation: A history of insanity in the Age of Reason. London: Tavistock/Routledge.
Hervey, T. & Kenner, J. (Eds.) (2003). Economic and social rights under the EU Charter of Fundamental Rights: a legal perspective. Oxford: Hart.
United Nations. (1975). Declaration on the Rights of Disabled Persons. New York: United Nations. Available at: http://www2.ohchr.org/english/law/res3447.htm, accessed 17 November, 2010.
World Health Organization. (1976). International Classification of Disease. (9th Rev.) Geneva: World Health Organization.
Rutter, M. & Schopler, E. (Eds). (1978). Autism: A reappraisal of concepts and treatment. New York: Plenum Press.
Schopler, E & Reichler, R. (Eds). (1976). Psychopathology and Child Development: Research and Treatment. New York: Plenum Press.
Schopler, E. & Mesibov, G. (1979). Psychoeducational Profile – Revised (PEP-R).
Schopler, E., Reichler, R., & Lansing, D. (1980). Individualized Assessment and Treatment for Autistic and Developmentally Disabled Children. North Carolina: University Park Press.
Wood, P.H.N. (1975). Classification of impairments and handicaps. Geneva: World Health Organization.
Dr Jean-Louis AGARD
Vice Président de la Fédération Française, Sesame Autisme
Président du Centre Ressources Autisme Midi-Pyrénées
Assoc Prof Jo Grimwade

AICAFMHA News
MHYFVic is a kinship organisation to AICAFMHA, which carries out an advocacy role at the national level similar to what MHYFVic is trying to do at the state level. One of their important activities has been the administration of COPMI, the program advocating support for children whose parents have a mental illness. The following items are reprinted from the COPMI electronic newsletter.
We are excited to offer to you these GEMS and hope that they will be useful for you in your area. We hope that you find these GEMS interesting and compelling. We also encourage you to share these GEMS with others, and to consider submitting one of your own.
However, before you start work on a possible GEMS please examine the contributor guidelines and contact the editors at researchevaluation@aicafmha.net.au This e-mail address is being protected from spambots. You need JavaScript enabled to view it. to discuss your proposal.
Published GEMS
• Edition 13 (September 2012) Targeted family interventions for families where a parent has a mental illness: Early intervention benefits to children
• Edition 12 (March 2012) Talking to children about parental mental illness
• Edition 11 (October 2011) Sibling relationships in children of depressed parents
• Edition 10 (October 2010) Keeping the infant in mind in the presence of maternal mental illness
• Edition 9 (April 2010) Grandparents parenting grandchildren when parents have a mental illness
• Edition 8 (February 2010) Ulysses Agreements in supporting families affected by parental mental illness
• Edition 7 (December 2009) Pre-school children in families with parental mental illness
• Edition 6 (August 2009) Issues for mental health workers when working with children and parents
• Edition 5 (May 2009) When a parent is hospitalised: the impact on children
• Edition 4 (March 2009) Children of parents with dual diagnosis
• Edition 3 (December 2008) Children of parents with mental illness and their family relationships
• Edition 2 (September 2008) Children who care for parents with mental illness: A UK respective
• Edition 1 (July 2008) The importance of being child and family focused
Want to contribute your own GEMS article?
See Guidelines for potential contributors to GEMS
MHYF Vic Committee
* President, Jo Grimwade
* Vice-President, Jenny Luntz
* Past President: Allan Mawdsley
* Secretary, Nitha Prakash
* Treasurer & Membership Secretary,
Lillian Tribe
* Projects Coordinator, Kylie Cassar
* WebMaster, Ron Ingram
* Newsletter Editor, Allan Mawdsley
* Youth Consumer Representative, vacant
* Members without portfolio:
Suzie Dean, Miriam Tisher, Sarina Smale