‘What will happen to our child when we are not around?’

IT’S been a long, hard road for 33-year-old Lisa Geaney and her parents. The family has stood on the precipice of despair many times as they fought for adequate services, which are still not available.

The youngest of seven children, Lisa, from Castleisland, Co Kerry, is mentally handicapped with autistic tendencies. She lives with her parents, Dr Donal and Margaret, and attends the Kerry Parents and Friends services at the Monastery, Killarney, five days a week.

“We’ve tried in every way to give her a life where she’ll be happy and fulfilled as a human being. This is a struggle, as funding for adult mentally handicapped services in Kerry is a scandal,” said Margaret.

“My husband is 80 years old and I am 70. We want a home for our daughter in Castleisland. Like all parents of mentally handicapped children, our biggest fear is what will happen to our child when we will not be around to look out for her.

“We need support, and with funding as it is in this country, there seems to be little hope for parents of our age group,” she continued.

This year, €4.4m was required by providers of services for the adult mentally handicapped in Kerry, but funding of only €771,000 was granted.

Margaret and other parents’ representatives from Cork and Kerry walked out of a Health Service Executive (HSE) meeting in protest last week.

The parents of mentally handicapped children are “oppressed people” because of the lack of funding, Margaret said, adding that their children are third-class citizens.

“The polite talk is over. We parents want to be part of the planning of the services for our children,” she said.

The Geaneys have been down many roads with Lisa since she was a hyperactive five-year-old, and they were advised she needed a structured environment. They sent her to a boarding school outside the county and brought her home every weekend.

Following requests to the Department of Education, a special class was set up in the school, but Lisa, at the tender age of five, found herself in a group of 15 to 18 year olds.

“The teacher did not have training in special education. It was a disgrace and I lost heart,” Margaret said.

“I believe Lisa would be a different person today if she had got the one-to-one training she needed at the time.”

Lisa attended school at St Mary of the Angels, Beaufort, until she was 18, but after that Beaufort was not a suitable place for her, Margaret said. Lisa attended the activation centre for severely mentally handicapped boys and girls and, for 10 years, the Geaneys did their utmost to find a more suitable placement.

Ten years ago, the Geaneys handed over a site in Castleisland so a modern programme could be provided for the area’s mentally handicapped children, and Lisa and her friends would have a home in their own community. This did not materialise.

However, a home for the elderly mentally handicapped, Glebe House, was built on the site and 10 to 12 people are looked after there, according to Margaret.

“We handed over the site, we took it for granted Lisa would be provided with a home. We’re still waiting for that to happen. We did not want her to spend her whole life in a big institution,” Margaret said.

Three years ago, Lisa was put on drugs for a behaviour problem and her condition deteriorated. Her speech was affected and she gained two stone in weight.

Her parents took her out of an institution and she has been living at home with them since.

Two years ago, she saw a Dublin psychiatrist.

He advised that she be taken off medication and that a therapist trained in positive behaviour analysis work with her.

However, they are still waiting for that therapist, as the services in Tralee do not have a psychologist trained to implement the special programmes that are badly-needed for most intellectually disabled people, according to Margaret.