Parents and campaigners in Donegal have welcomed the government’s expansion of support services for children with Down Syndrome, but said there is still work to be done.
“We’re over the moon, absolutely over the moon with such a positive first step, but it is only a first step into acknowledging the syndrome and the complexities that come with it,” Gina Grant of the Donegal branch of Down Syndrome Ireland said.
In a separate measure, the Health Service Executive announced this week that they will replace the term, “mental handicap” with “intellectual disability” when referring to certain conditions recognised under the Long Term Illness Scheme, including Down Syndrome.
Pearse Doherty, Sinn Féin TD, who raised the issue in the Dáil four weeks ago at the request of Donegal Down Syndrome, called the decision, “a momentous victory” for disability rights advocates nationwide.
On Tuesday, the Minister for Education and Skills, Jan O’Sullivan, TD, announced that the government had agreed that additional resources would be allocated to schools as an interim measure to support children with Down Syndrome who are not already supported through the National Council for Special Education’s annual allocation process.
The Minister said that under the interim measure, schools will receive 2.5 resource teacher hours per week for each qualifying child.
Changes to allocations of support resources has meant that since 2005, children who received a diagnosis of Down Syndrome with mild intellectual disability were not eligible for extra teacher resource hours.
Gina said she had been campaigning for a change to the policy since June of 2012 but added, “I know families and parents who have fought it and cried about it and stood alone over it for the past 10 years because 2005 was when it changed and parents have been fighting since.
“But there’s still work to be done,” she said. Gina said the campaign is pushing for Down Syndrome to be considered a low incidence condition, which would mean any diagnosis would be enough to secure supports without having to go through an assessment programme.
In welcoming the change in terminology announced by the HSE, Gina said she had heard from parents who had tears in their eyes as they filled out forms that had used the words “mental handicap” to refer to certain conditions. She said a parent told her she was pleased that no other parent would have that experience.
The use of the term intellectual disability, the proper terminology, “just opens doors for parents,” Gina said. “They don’t feel they’re selling their child out to get a basic card for their health.”
The HSE announcement this week also capped off years of campaigning. As recently as February of this year parents were told the terminology would not be changed.
Deputy Doherty said that having been asked by Donegal Down Syndrome to have the issue looked at, I decided to raise it in the Dáil, calling the former terminology, “completely insensitive and wholly inappropriate”.
“For those affected by these conditions – and indeed for their families – this label has caused them untold emotional suffering for years now as it only served to further stigmatise and marginalise them,” he said. He called the decision, “a momentous victory for disability rights advocates throughout Ireland.”
Deputy Doherty said many of the groups and individuals he had spoken with had refused in the past to apply for inclusion to the LTI scheme because of the stigma the term embodied. “Parents in particular have contacted me to say that they had refused to have their child branded by this insulting term,” he said.
The deputy said the legislation that established the Long Term Illness Scheme must also be altered to reflect the HSE’s decision, and called on the minister to amend it.
“In relation to today’s decision – for all those who rightly refuse to be ill-defined by their disability – this is very much a victory,” he said.