The mother of two teenagers with severe intellectual disabilities has said that if services for her oldest son are cut, she does not know what will happen to her family.
Jane Johnstone has spoken out following nine meetings with the HSE, having been told that there will be no respite or day placement for her son Evan, who will turn 18 in May and, thus, transition to adult-centred services.
Evan suffers from severe intellectual disability, autism, and also a sight condition which leaves him with only 50% vision. He also has mobility issues and, following a fall which fractured his spine in January, cannot access the upstairs of his home anymore.
'But he's my heart and soul and while I often hear of people fighting for residential care, I'm fighting to keep him here, to keep my family together.'
Jane lost her husband Rod three-and-a-half years ago and says that while times have been tough, the family has survived and continues to do so. Her 13-year-old son Daniel also has an intellectual disability; her 19-year-old daughter Ciara is in college but acts as a carer when she is at home.
At present, Evan receives three to four hours a week of respite, two overnight respite stays per month, and is attending St Patrick's Special School in Enniscorthy. Evan has been assessed as needing two-to-one care which means his day placement is subject to funding.
'You would wonder how much more they think we can take. I didn't think we'd have to fight for the day placement but we've been told that no funding has been confirmed at this time.'
Jane pointed out that the hours of respite are time in which she does things like food shopping, car NCT, paying bills, etc.
'I rarely socialise, I feel I'm becoming isolated from my friends. Outside of the respite hours and when Evan is in school, we cannot leave the house. I can't bring both boys in the car together and I can't bring Evan on my own because he'll grab me or the steering wheel and it's too dangerous. We're locked in the home and Evan won't stand that if all of his respite and day placement is gone.'
She added that these services were his chance to be part of the community, adding that she had the greatest respect for the respite workers who, she said, did not want to close the door on Evan at the end of May. Evan, she pointed out, should have started a transition programme at least a year ago but that never happened.
A care plan that Jane received in January, five months after she'd expected to get it, seemed to make provision for everything Jane had requested but, in a follow-up meeting, she said she was told that this was a mistake and that she could not expect a 'Rolls Royce' treatment.
'I know that people are crying out for services - I'm only asking for what I need and what we had all along. We're not looking for money, just a small bit of help.'
The only extra help that Jane asked for was a week's holidays which, she said, would benefit her, Evan, and the rest of the family. She pointed out that prior to her husband's death they had received just three respite nights.
Jane has had nine meetings with four different disability managers (who are based in Kilkenny) and has been told that a new centre is due to open in Wexford, subject to HIQA approval and staffing, but that would not happen until at least mid-summer and Jane does not know if they family will make it that far without some help.
'We can't put all of our eggs in that basket. There are only four beds in it for five counties. Evan has been clinically assessed by the HSE as needing the maximum amount of respite but he won't even be getting the minimum amount now. The HSE is not even following its own protocol.'
She pointed out that she receives €163 carer's allowance per week but to place Evan in residential care would cost at least €200,000 per year, saying that keeping Evan in the home made personal and financial sense.
'No one can work 365 days a year and we, more than most, know the consequences of over-burdening a family. There is a human cost to all of the cuts they make, and we paid that price. All of the campaigning and the fight took its toll. Rod was only 50 when he died from a heart attack - I haven't even grieved for him properly.
'Even Ciara, who's only 19, has said to me that she worries about me and what she would do if something happened. That's not fair on her. I love my kids - they're all I have left in the world. I don't like going public because I can't even ask Evan if he is ok with it. I just have to trust that I'm doing this out of love for him.'
She added: 'I don't know what will become of us. This is our last shot - if there is nothing for us here, we've had it.'
The HSE wishes to assure the public that its community services are there to care and support those who require our services.
The HSE acknowledges the difficulties faced by some families and will continue to liaise with them to resolve issues that arise. In this instance, HSE staff are in contact with the family directly in order to support them on an on-going basis.
The welfare of patients, clients, service users and their families in Co. Wexford is important to the HSE. Our community services are working to ensure that, within our existing resources, people have access to our services.
The HSE encourages any individuals and/or their families, who may have an issue with the service they are receiving, to make contact with the services concerned and the matter will be discussed directlywith them.
The proposed new respite house is an existing building. The home will provide respite services for those that are initially on the adult waiting list in Wexford ,those transitioning into adult service and open to the wider CHO 5 area.
Staffing levels will vary depending on the needs of the service users in the respite home at any given time, however a core staffing level will be maintained. The opening of the house is contingent of having safe and appropriate staffing levels in place.
It is planned to open the respite home by end of Q2 2018 once all staff are in place.