Recently widowed Irish mum loses vital respite hours for her two autistic children ten days after husband's death
An Irish mother of two severely autistic children whose husband died suddenly in October is facing having her respite care cut at the end of this month.
Jane Johnstone from Wexford cares for her sons Evan (14), and Daniel (10) with the support of respite workers, who provide 16 hours a week care between the two boys.
Ms Johnstone's husband Rod died suddenly aged 50 in October from a massive cardiac arrest while preparing his children for school.
Speaking to the Wexford People at her Baldwinstown home, Ms Johnstone explains how much care her son Evan, in particular, needs.
"Evan lives in a world full of language where he has no speech; he becomes overwhelmed. He is non verbal and has many care needs and challenging behaviours. My younger son Daniel is verbal, but his language is far behind the development consistent with his peers.
"He also has care needs and occasional challenging behaviours. My daughter Ciara has just turned 17 and is a kind, caring and understanding sister towards her brothers."
Describing the past six months as extremely difficult, Ms Johnstone said were it not for the support of family, neighbours and friends who lobbied to get her respite relief care after Rod's death, she doesn't know how she would have coped.
"During the period surrounding Rod's passing and his funeral, the HSE provided the boys with day respite, wherein they were taken out of the house for a few hours when the environment was busy and emotionally charged and they were returned home in the evenings. Within ten days, I received a call from the HSE to say that the respite hours would be reduced with immediate effect."
Following this Evan started displaying seriously challenging behaviours in the mornings when his mother tried to get him ready for school.
Evan is of a particularly big build for his age and has incredible strength (he once broke a double glazed window in the bathroom with his fist while dressing).
"Needless to say, I was particularly weak at this time, having suffered a huge loss and doing my best to care for my family. I called the HSE for help with what was at the time, a crisis situation.
'"My calls, messages and emails received no response for many days and friends, family and Mick Wallace contacted the HSE on our behalf, asking them to get in touch with us as a matter of urgency."
Contact was eventually made by the HSE and some respite was granted, including two overnight stays per month for Evan, assistance with preparation for school for Evan for one hour each weekday morning, and also some Saturday and after school respite for both boys.
"The support has been a lifeline for my family and has enabled us to survive the past six months. I have to sing the carers' praises; they take the boys out on trips and look after them. It gives me and Ciara a bit of breathing space. It was difficult managing everything when Rod was here but that difficulty has increased by 100 per cent now."
Despite numerous phone calls and emails in February, she received no word back until a month ago when she was contacted by the HSE informing her that she may no longer be entitled to the same level of respite care.
"The amount of stress this has caused. It's the last thing I think about at night and the first thing I'm thinking about in the morning and that's if I get sleep as Evan often wakes at night.
"In two weeks I just don't know how I'm going to manage. The kids are all that are keeping me going; I'm all they have left now. It's not a whole lot that I'm looking for."
Ms Johnstone's problems have been compounded by the fact her carer's allowance has been halved because she is in receipt of a widow's pension.
She pointed out that the cost of caring for two children 24/7, 365 days a year, would be far in excess of what she's seeking.
"As Evan gets bigger he will probably need more and more care; he belongs with me,' she said, fighting back tears.
"I would love to be able to manage better but I'm not superwoman. It's not fair on the boys. It's important for people with disabilities to live in communities. You'd imagine after the parent of a child with a disability dies that there would be more help, not less."
A statement from the HSE read: "The HSE Disability Service works closely with families on an ongoing basis and provides a range of supports for people with disabilities such as home-help, nursing support and residential placement. These supports are based on assessed needs and available resources.
"The care provided is routinely reviewed to ensure the supports are appropriate and are meeting the person’s needs.
"The HSE is liaising directly with the family in question."