Parents looking for foundation commitment


PHOTO BY CARMEN MARIE FABIO

Soon after being elected Soulanges MNA for the Coalition Avenir Québec (CAQ) party, Marilyne Picard was named Parliamentary Assistant to the Minister of Health and Social Services and said one of her goals is to address the needs of ageing caregivers.

Ageing autistic and handicapped children require continuity in care

A group of regional parents approaching, or even past, retirement age are feeling a glimmer of hope towards provincial healthcare services as they seek to ensure continuity of care within the community for their ageing children who are intellectually impaired or on the autistic spectrum.

News that newly elected Soulanges MNA Marilyne Picard was named Parliamentary Assistant to the Minister of Health and Social Services Danielle McCann on November 8 is welcome news to the parents who are now dealing with their own health issues while worrying about the future of their children.

Having launched a foundation in 2004, then known as Fondation Sous les Ailes de Saint-Michel Archange (FSASMA), the parents’ group now operates under the name of ‘Un toît pour nous’ and are seeking to build and maintain home-like environments in which they feel confident to house and care for their children after they, as parents, are no longer able to.

“What we’re trying to do with our foundation is to build something that will continue to address our kids’ changing needs,” said Île-Perrot resident Wendy Atto whose 28-year-old daughter is severely autistic and lacks verbal skills.

New political mandate

As the mother of five children including a 6-year-old daughter with a rare chromosomal disorder, Saint-Lazare resident Picard understands the enormous challenges facing parents of severely handicapped kids who number approximately 2000 in the province. She and her husband have had to deal with 37 trips to hospital via ambulance in their daughter’s short life.

After Picard and other mothers experiencing similar circumstances formed the group ‘Parents jusqu’au bout’ (Parents to the end) appeared on the popular French television talk show ‘Tout le monde en parle’ to ask more resources of then Health Ministre Gaétan Barrette, a nominal increase was provided amounting to about $1000 a month, still falling well short of the necessary funding to deal with all associated medical costs and respite. This served as Picard’s motivation to enter into politics where she beat incumbent Liberal MNA Lucie Charlebois in the October provincial elections.

Working in conjunction with Ministers Marguerite Blais who heads the Seniors’ portfolio and political newcomer Dr. Lionel Carmant, one of the trio’s goals is to address the needs of parents and caregivers of ageing disabled children.

“I’m super happy about this,” Picard told The Journal. “I know that many citizens have mentioned there are many programs not well adapted to clients’ needs, including people who are semi-autonomous but have travel restrictions.”

Dr. Carmant, Picard’s colleague, is aiming to provide children’s diagnoses faster and expedite the intervention of therapeutic services.

Local needs

Together with Vaudreuil-Dorion resident Fiona Watts, herself the mother of a 33-year-old non-verbal autistic daughter who lives at home, Atto has been lobbying both provincial and federal governments to ensure appropriate care will be available for their children and all those with similar needs.

Atto said that a code was assigned to her daughter which determined the level of care she required. That code was arbitrarily changed, resulting in less funding being sent to the foster family.

This has had a direct effect on the lives of the clients in the reduction of outings and quality of food.

“They may have changed her code but her needs haven’t changed,” said Atto of her daughter, adding the change in coding was not done with the input of a social worker.

Upon her daughter reaching the age of 21, Atto said it’s similar to someone reaching retirement age. “She no longer has school to go to but needs mental stimulation at home. What we’re trying to do with our foundation is to build something that will continue to address these changing needs.”