Mum of boys with autism wins care battle after street protest outside HSE offices
THE widowed mother of two boys with autism has won her fight for emergency care to be provided for her younger son while she takes the older boy to hospital, after staging a protest outside HSE offices in George’s Street, Wexford.
Jane Johnstone of Baldwinstown whose husband Rod died suddenly two years ago this week, picketed the HSE last Friday morning, carrying a placard with a photograph of her 16 year old son Evan and the slogan ‘Justice for Evan’. Another placard bore a picture of a lioness with the message ‘Sometimes Mistaken for Autism Mum’.
Jane has been caring single-handedly for her high-needs sons Evan (12) and Daniel (16) and her 18-year old daughter Ciara, a Leaving Cert student since Rod died unexpectedly in 2014.
Five weeks ago, she asked the HSE to cover the cost of providing temporary care for Daniel in the family home while she takes Evan to Waterford University Hospital for treatment.
The request was made after Evan who is non-verbal was diagnosed with a sudden-onset rare eye disease called Keratocunus which has left him visually impaired but there was no help forthcoming although she had first raised the issue of emergency care following Rod’s death.
The battling Wexford mother said the HSE asked her to consider foster care for Evan but the health authority has denied this.
‘I stand over that one hundred per cent. They’re calling it ‘ home from home’. The suggestion was that another family would be involved. I have lost my husband. I have no intention of losing anyone else in my family,’ she said.
Jane said she tried to resolve the matter diplomatically and had no choice but to hold a street protest.
‘I don’t have family support close by. My parents have passed away. Rod was from Scotland, his family live in the UK. My two sisters live in Dublin and Galway.’
‘I’m doing it on my own. That is one of the things that concerned me after Rod died, who would provide care if there was an emergency, if one of the boys had to go to hospital or if I got sick. But they wouldn’t give me what I need to keep caring for my children.’
Jane said she brought Evan to the GP in September after noticing a speck in his eye. She was advised to take him straight to hospital. ‘Luckily, I had a babysitter with Daniel and she was able to stay for a few more hours.’
‘But I can’t keep paying for babysitters out of a widow’s pension. I have to pay between €15 and €25 an hour because the person has to be qualified to look after someone with special needs.’
Evan is facing frequent hospital treatment for his eye condition which can only be fully cured by a cornea transplant.
‘I notified the HSE of Evan’s new condition and the need to provide care for Daniel while his brother is attending appointments or staying in hospital overnight, It was very clear they were not prepared to give a decision,’ she said.
With Evan’s next hospital appointment looming this Wednesday and Rod’s second anniversary on Thursday, Jane decided to stage her public protest last Friday while Evan and Daniel were attending St. Patrick’s Special School in Enniscorthy.
After handing a letter in to the HSE office, she was asked to attend a meeting with a HSE manager and informed that the care she requested would be provided. ‘I was told the budget had been approved to provide care for Daniel in his own home while Evan is going to hospital. They said it hadn’t ever been a problem.’
‘I didn’t want a cat fight. I want the HSE to find a better way to work with families like mine. All I’m trying to do is look after my family and they made things difficult for me. I have to fight for my family,’ said Jane.
‘I won’t abuse it. I will be going to hospital and coming straight back. I won’t be going shopping afterwards.’