Neonatology and the Rights of Families



A Call for Help from the Victor Dore School for the Handicapped

The Clientele and the Needs Grow but the Budget Stagnates

Marie-Andrée Chouinard
Le Devoir, Tuesday May 8, 2003, page A 1


Parents of severely handicapped children are sounding the alarm: at the primary school their children attend, Victor-Dore, resources are not increasing at the same rate as enrollments and it is affecting basic services for students.

In a "cry of despair" parents on the Advisory Board of the Montreal school Victor-Dore, where 182 handicapped students are enrolled, are asking the new liberal government to increase resources for their children to cover not only teachers but also occupational therapists, nurses, physical therapists, speech therapist, and aides.

The children who need help with such activities of daily life as eating, dressing, and going to the toilet do not always have access to help when they need it. For example, parents report that their children who are toilet trained at home must wear diapers to school because there is no one to take them to the bathroom at critical moments.

"Today, we are putting on the record a problem that has been growing for a number of years: the crying need for rehabilitation resources at the Victor Dore School," writes Francois Gagnon, Advisory Board President in a recent letter to the Minister of Health, Philippe Couillard, and Minister of Education, Pierre Reid.

Parents prepared a short list of eloquent statistics to support their charges: from 130 students in 1989 the school has grown to a current enrollment of 182. In 1989 half the students needed help to eat, but now 96% need such help. A large majority (96%) needs help with dressing, 30% are incontinent, and most need help with hygiene. " And all that without any change in budget," writes Mr. Gagnon.

"The most basic activities of daily life must be supported by a specialist," this parent explained in an interview yesterday.

Gaelle Trebaol, Vice-President of the Advisory Board states that her twelve year old son, who has cerebral palsy and severe hearing loss, has the right - "if he's lucky" - to only one visit a month by a speech therapist. "He is considered a mild case because the others have even greater needs, and his services suffer as a result," she laments.

The Victor Dore School is one of a group of special schools in the Montreal School District (CSDM), and its educational services are coordinated with medical care necessary for such severely handicapped children which is provided by the Marie-Enfant rehabilitation center of Ste-Justine Hospital. Financial support for the school is thus the responsibility of both the ministries of Education and of Health and Social Services.

"The problem at Victor Dore is that there are not enough hands," Madame Trebaol explains, saying that a number of students are in wheel chairs, need gavage feeding, and use communication devices.

The Commissioner Benoit Bessette, President of the Permanent Budget Commission of CSDM is very much aware of the problems at Victor Dore. " It's a an extremely difficult and urgent situation," explains Mr. Bessette, who confirmed that requests have been sent to the Department of Education in Quebec to increase funding by $200,000 a year for the hiring of specialists and aides.

At CSDM it is believed that the severity of handicap among the students at Victor Dore can be explained by two factors: "We are trying to educate more severely handicapped students who would previously have been institutionalized in hospitals," explains Mr. Bessette. "At the same time, less severely handicapped children are being increasingly integrated into regular classrooms."

Ms. Trebaol believes that the severity of Victor Dore's clientele is also explained by a net increase in premature babies saved by scientific advances for lives of severe handicap. Ms. Trebaol's son was born at 25 weeks gestation and has major sequelae from his premature birth.

"One out of two children at Victor-Dore was born prematurely," says Ms. Trebaol, who over time has become very much involved in these issues. "NICUs resuscitate more and more very premature infants, with predictably poor outcomes. The Victor-Dore school situation is proof."

The Montreal Center of the Quebec Institute of Health in response to the parents' requests replied yesterday that the situation at the school is being evaluated. But because of current budget shortfalls, they have refused to grant the requests for additional funding.


Index of Documents

Pain & Suffering



Narof is an international non-profit organization | ©2003