The mother of young man with autism who was advised by the Health Service Executive to call gardaí to take him into custody if he had a meltdown when services were closed has called for more appropriate services for children with special needs.
Jane Johnston from Wexford, whose husband died suddenly at age 50, is caring for two sons both of whom have autism. Evan (17) has severe autism, is visually impaired, and has significant mobility issues and Daniel is aged 13.
Speaking on RTÉ’s Today with Sean O’Rourke on Wednesday, Ms Johnston said: “Three years ago, my husband who was just fifty-years-old at the time, collapsed on the kitchen floor and had a massive cardiac arrest. He passed away very suddenly.
“He worked full time in the department of agriculture and I remember one of his colleagues saying to me that he had done a whole day’s work before he even got into the office that day because he had to care and look after our oldest son,” she said.
“At the time of the funeral and the week after, we were given the support we needed but a few weeks later, I was contacted by the HSE and was told by them we needed six hours a week in respite care. I was in shock and grieving and I knew I wouldn’t be able to manage with just six hours,” she said.
Ms Johnston spoke of how respite services in Wexford are very short on the ground, and how Evan can’t cope with being out of a routine.
“We were very grateful for the support that we were initially given [following her husband’s death]. Going on six months later, I was advised the support was to be reviewed and then that support was changed as the HSE said it had only been given after my husband had passed away. Unfortunately, my husband was still dead and my children still have autism.”
She said the last week of August was very difficult and there was a problem in communication between the service provider and the HSE which left her without any help for a number of days.
“Evan becomes overwhelmed and he can’t control his behaviour when he becomes overwhelmed,” she said.
Ms Johnston described how the HSE suggested that her children could avail of “home-from-home care”, which she described as a form of foster care.
She said this greatly upset her because she “was just looking for a few hours here and there.”
Ms Johnston said when she challenged the HSE about this she was told she could be referred to Tusla if she did not agree to call the gardaí should her son put other people at risk.
“The HSE told me that there were no services available that weekend, and I then said to them what do you suggest I do if we’re at risk here and I was advised that I should call the gardaí?
“Evan has a significant intellectual disability, he certainly doesn’t have any criminal intent, he hasn’t broken any laws, he simply needed to get out of the house for few hours. I made my feelings clear and I was advised that I could be referred to Tusla in the absence of my consent,” she said.
On Tuesday the woman’s battle with the HSE came to light when Independent TD Mick Wallace read into the record of the Dáil parts of an email Ms Johnston had sent him about the HSE’s reaction to her attempts to seek support for her two children.