‘We get respite care for two nights, every five weeks, but once Ewan turns 18 that will be gone’

An exhausted and stressed Dunboyne mother of a teenager with special needs said that totally inadequate services for children and adults with special needs have not improved despite numerous government promises.

Siobhan Campbell is frustrated and stressed as she tries to care for her 16-year-old son Ewan and fight for the services he needs.

Ewan has autism and moderate learning difficulties and needs to see a paediatric psychiatrist.

“We cannot get the Occupational Therapy and the Speech and Language Therapy we need. There is no psychiatrist in the Children's Disability Network Team (CDNT), so we have to rely on our GP to keep prescribing for Ewan.”

Ewan attends the Stepping Stones School in Maynooth, a special school for children with autism and complex needs.

“We have to fundraise to provide Occupational Therapy, Music Therapy and Speech and Language Therapy in the school,” she says.

“We get respite care for two nights, every five weeks, but once Ewan turns 18 that will be gone. We live for those two nights. My husband, Gordon, and I both work part-time so that we can care for Ewan. He is very strong and is 6ft 2in. He is a child trapped in a man's body.

“I am so stressed at the thoughts of him turning 18 when we will have to start the fight all over again to get services. I know one parent whose child has turned 21 and they have had no respite since they turned 18.”

Siobhan explains it takes both her and Gordon to help with washing or to deal with Ewan “when he gets cross.”

“We have begun to look at residential care for Ewan, but we have been told the only chance we have of getting it for him is if we abandon him in a hospital or Garda station.

“I cannot see myself still doing this at 70. I cannot see myself still being alive at 70,” she said.

Frustration at the lack of services led Siobhan to hold a public meeting in Dunboyne two years ago to highlight the “absolute frustration, anger and exhaustion” over lack of adequate services.

“All sorts of promises were made by politicians after that meeting, but nothing has changed.

“They made a big fuss of announcing €1.3m for disability services in Meath but nothing happened.

“They tell us they cannot get the staff. The problem is that those working in primary care are paid more than those working in the CDNT, which is why they cannot get the staff.

“Meath Children’s Disability Service has had a vacant post for 16 years for a paediatric psychiatrist despite the overwhelming demand.”

Siobhán said she knows she is only one voice and is conscious that there are many parents who are in the same situation over lack of services.

“This is an issue across Ireland but is particularly acute in Meath. The problem is growing all the time as more and more people need the services.

“We are our children's advocates but we can't make anything change,” she said.

“Everything is a battle. We are looking for basic things for our children, assessment and services that they need.”

The HSE has been approached for comment.