A Word from the President, Spring 2005

From “L’Image”, Spring 2005 Edition

The issue of severe behaviour problems and funding available for this clientele has once again set off a new battle within the health and social services network. The following is a letter that ATEDM sent to the Agence de développement de réseaux locaux de services de santé et de services sociaux of Montreal , advocating on behalf of individuals with severe behaviour problems. The letter was sent to Mr. David Levine, Director General, Mr. Victor Goldbloom, President of the Board of Directors, as well as to each member of the Board of Directors.


Montreal , March 16th 2005

Dear Sir, Madam,

The issue of severe behaviour problems associated to autism, pervasive developmental disorders (PDD) and developmental disabilities is very complex. Severe behaviour problems have always existed and every professional, caregiver or institution confronted with the problem has had their own vision of how to service individuals with severe behaviour problems. However, this clientele is elusive and intimidating. People affected by severe behaviour problems are often found – even in 2005 – over-medicated, sleeping all day, tied up in a psychiatric unit or abandoned in their own family environment.

The Montreal Régie first attempted to address this issue in 1995 as a result of demands made by parents of the Grey Zone Committee, community organisations and even a few institutions.

However, as with all efforts to change, great resistance was the outcome generated from the agencies, which are not in the habit of questioning themselves. As far as the public agencies were concerned , the solution was to acquire more public funding. Imagine how tempers flared when the Régie decided to invest $2.2 million in the development of new expertise to better serve this complex clientele.

Before this budget was announced, the entire public network was claiming that their refusal to provide services to this clientele was due to lack of expertise. Individuals with severe behaviour problems were simply bounced between the mental health network and the Centre de Réadaptation pour la Déficience Intellectuelle (CRDI), feebly attempting to determine which diagnosis was of greater importance, the intellectual disability or the severe behaviour problem?

After the $2.2 million budget was granted, attitudes changed. There was suddenly more talk of sharing expertise, soon followed by transferring expertise. The word “development” had completely vanished. An expert-less network in 1995 had suddenly become an experimented one in 96-97…

To work with this demanding clientele and be able to develop expertise, one needs to be humble and be able to analyse, evaluate and review interventions amid numerous failed attempts. One has to be creative and have foresight when working on the front lines, not solely rhetoric on paper.

The notion of « front lines » will be referred to throughout this commentary because that is exactly what is lacking right now: expertise on the front lines. Through all the conferences and training sessions, participants learned many concepts and theories, probably too many in fact. The problem lies in the implementation of the theories. No one seems to be able to put the concepts they have learned to use with this clientele.

ATEDM knows this clientele with severe behaviour problems very well because more than half of it has either autism or pervasive developmental disorder. We have often found ourselves to be the only ones servicing children excluded from everywhere else because of their aggressive behaviour. This is the case for a 16 year-old we are helping right now. We had also piloted a project for families in crisis whose children have autism and severe behaviour problems (annex 5).

And because our children were excluded from or refused services, we rolled up our sleeves and found help to develop the expertise ourselves. It was a question of survival.

Since the CRDI function on the basis of offering established service models (even with individuals with severe behaviour problems), there is hardly any room for innovation and creativity to set up innovative intervention plans. Each individual with severe behaviour problems is different and requires an individualised intervention plan tailored to his specific needs.

Since ATEDM has never had the opportunity to explain to the Board of Directors its position on the issue of severe behaviour problems, we have put together a few documents that provide the historical background from the 1990’s to 2005. There are numerous reports and letters from and about the PREM, however these documents are usually what I would call « organised » information that reflected the needs of the agencies rather than the needs of the individuals with severe behaviour problems and their families.

Since the funding of $2 million was announced, the issue of severe behaviour problems has become a political one. This is disappointing in itself because not only has this clientele remained poorly-treated, the cost to the state has remained very high, with individuals ending up in institutional settings or high needs residential resources. The forms of suffering these individuals experience and the distress of their parents are not to be overstated. Parents live with physical and emotional exhaustion, leading to sickness for some, depression for others, as well as the loss of their jobs. The degree of their deterioration is too significant to ignore.

ATEDM represents individuals that receive services from the CRDI and their families. Our commentary’s purpose is to help improve the quality of the services and fate given to our children with severe behaviour problems.

Carmen Lahaie

President

Our sponsors