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.”

Federal level

Atto and Watts brought their concerns to Vaudreuil-Soulanges MP Peter Schiefke’s office this fall and were successful in helping create a petition to lobby the federal government to provide, “…targeted funding opportunities to help set up affordable group homes and residences to provide appropriate and continued care to ageing Canadians coping with severe autism and/or other physical and mental disabilities.”

According to 2014 Statistics Canada data, of the 3.8 million Canadians aged 15 years or older who reported a disability, 23 per cent were classified with having a severe disability; and 26 per cent a very severe disability.

Mission statement

Un toît pour nous’ mission is to ensure the clients can remain in their community and be assured continuity in care once their parents pass on as opposed to being transferred to wherever an availability happens to be.

“We want to start with one residence as a template,” said Watts. “If we get more parents involved maybe we can increase that number.”

Watts and her husband face their own health issues and are increasingly concerned for their daughter’s future. Watts stressed the need to keep residents who are used to each other, and share compatible interests and needs, together.

“The difference over the foster homes is that the residents wouldn’t be moved around,” said Watts. “This would be permanent.”

A residence for autistic adults is not the same as any other residence,” said Josée Fillion, consultant for the foundation. “There are different needs that can cost about $100,000 per year.” Fillion said without the proper funding, autistic adults are often placed in other foster homes or in senior facilities, neither of which provide the appropriate intellectual stimulation or ratio of workers to residents.

“My daughter is in a spectacular place right now,” Atto said of her current living situation where she lives at an Île-Perrot foster home with caretakers who are themselves approaching retirement age. “I’m living in fear for the day when they say they’ve had enough.”

Waiting list

Watts was told the current waiting lists for placing her daughter in a group home or facility appropriate to her needs as an adult can be 15 years, making it close to impossible to anticipate what needs her daughter will have that far into the future.

“And if I refuse a place as not being suitable, I might have to start again at square one,” she said.

“I don’t want a foster family (in the future) because I want something permanent for her. I don’t want her to have to change every year.

“We’re not asking for handouts,” said Watts. “We’re asking that if we set up the building, could they (government) at least give us money for staffing that would be the equivalent to what they’d be paying out for foster families.” The foundation continues to encounter pushback from what they say is the hierarchical-based Association des Ressources Intermédiaires d'Hébergement du Québec (ARIHQ) under which the group home staffers are hired.

Fillion said a loss of government funding for the per diem of foster families means it’s no longer economically viable to have smaller groups living in residences as opposed to larger facilities that, while less homey, are easier to manage financially.

Cautiously optimistic

Atto and Watts know much work remains to be done in swaying existing government health networks but say they’ve been very well received by all area politicians they’ve approached, including Vaudreuil MNA Marie-Claude Nicholls.

When asked if it’s possible to enact significant changes during a relatively short four-year political period, Soulanges MNA Picard is optimistic, saying, “It’s a priority for us to take care of those in need.”

“It should be somebody who knows these kids best to determine what their needs are,” said Watts, “and not someone who just opens a file.”

To add your name to the federal petition, go to petitions.ourcommons.ca/en/Petition/Details?Petition=e-1925

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