Ruairi Quinn, minister for education and skills, had been speaking with people after delivering his address to the MacGill Summer School on Thursday. As he turned from the door of the Highland Hotel, he spotted a familiar face coming toward him.
“Gina!” he said.
Gina Grant of Letterkenny, who is involved in a number of campaigns in support of children with special needs, approached the minister with a question from a discussion they had earlier in the day. Gina and Fran Kane, secretary of Down Syndrome Ireland, had brought the minister a proposal from the national parents group Down Syndrome Education Equality Advocates.
In just an evening, Gina and Fran had organised a demonstration for Thursday that drew up to 70 people to the hotel in advance of the minister’s address. They want Down Syndrome to be recognised as a disability in order to provide their children with the supports that the parents say the youngsters require. They brought that message to the minister on Friday.
Gina carried a sign with a photo of her son Christopher on it. It said, “My extra chromosome needs extra support.”
Because Down Syndrome is not recognised as a disability, not all children with Down Syndrome will receive a special needs assistant at school.
“All children with Down Syndrome have the capability of being who they want to be, ” Gina said. “Once they get something into their long-term memory they get it, they’ve got it, they’re flying.
“But they need one-on-one assistance for this, ” she said. “My son is 5 and the system is failing him.”
Gina is also a spokesperson for the Let Me Be Me! campaign that was formed earlier this summer to support Donegal’s specialist special-needs preschools. Gina’s son Christopher, 5, has Down Syndrome and her son Francis, 4, has mitochondrial disease and attends the specialist preschool at Ballaghderg, Letterkenny. Gina and her husband, Eddie, have a house full of seven children, ranging in age from 4 to 21.
The Health Service Executive has already confirmed their plans to close St. Agnes specialist preschool in Donegal town next year, and the preschool is not accepting new children this year. Parents whose children attend Ballaghderg are concerned about the future of that preschool; the HSE has only committed to supporting the school until 2015.
In their conversation with the minister on Friday, Gina and Fran proposed that the government provide all children with Down Syndrome with three hours a week of special needs assistance and that the children be regularly assessed to ensure their needs did not change as the year went on. The minister asked the women to provide him with documentation to further detail their proposal, and told them he believed it was a request worth considering.
There are about 70 families in Donegal who have a school-aged child with Down Syndrome. Nationally, up to 30 children with Down Syndrome enter the Irish school system each year. Gina and Fran want the government to address the issue in time for the children who will begin school in September.
“We’re not talking huge numbers here, ” Gina said. “And it would cost less than 5,000 euro per child, so it’s not a huge money issue, either.”
Fran and Gina were pleased with their talk with the minister in Glenties. “He sat down and listened to us, ” Fran said. Fran’s son JJ, age 10, has Down Syndrome.
“Down Syndrome is not an intellectual disability, ” Gina said. The condition affects children across the board, and those who are not provided with suitable special assistance will face frustration after frustration in school, she said.
“There’s only so much failure any child can take, ” Gina said.
Fran became involved in Down Syndrome Ireland about a year ago and because of Gina’s encouragement. The two had met at a protest in support of children with Down Syndrome. Fran said that she and her husband had to fight for the special-needs assistance they could secure for their son.
“Gina is very passionate -- she’s all about the children. She’s not doing it for any political gain, she’s not getting a wage at the end of it, ” Fran said. “If Gina says, ‘Let’s do this’, I say, ‘yes’.”
Gina became involved in the Down Syndrome campaign two Octobers ago when she discovered how difficult it would be to secure special resources for Christopher in school. “But people have been campaigning for years, ” she said.
“Every parent of a child with Down Syndrome knows their councillor or TD, ” Gina said. Those parents often must go to their elected representatives to secure the hearing, vision and other tests that children with Down Syndrome need regularly. Often, a child with a state-recognised disability will move up the list faster, making the wait longer for the child who has Down Syndrome.
Fran and Gina acknowledged that there has been great progress in the way the state deals with children who have Down Syndrome in recent decades. But there is more work to be done, they said.
“Every child with Down Syndrome should be allowed to be capable to their level of ability, ” Gina said. “Not to write children off, and that’s what we believe the government have done.”