BRAVE MUM’S STORY LEADS TO €10M RESPITE BOOST
Jacinta’s anguish inspires funding
LOCAL woman Jacinta Walsh (right) has welcomed the announcement that funding of €10m has been allocated for disability services to help ease the chronic shortage of respite services available in Louth and nationwide.
Jacinta appeared on a Primetime Special to detail her family’s shocking personal story, including an assault at the hands of her son.
Local woman Jacinta Walsh has welcomed the announcement that funding of €10m has been allocated for disability services to help ease the chronic shortage of respite facilities available in Louth and nationwide.
Jacinta, who is well known throughout the area as one of the founding members of ABACAS school in Drogheda, appeared on a Primetime Special last week to highlight the difficulties faced by her own family who have had no respite for her adult son Sam who has autism, in over two years.
Jacinta revealed how Sam began to have violent outbursts and lash out at around the age of 14 or 15 and the family now have locks on almost every door to protect both themselves and Sam.
She told how one day at the beach Sam suffered an episode which resulted in him headbutting Jacinta relentlessly for around 25 minutes.
Jacinta said Sam’s outburts they are quite short but can be incredibily intense.
‘He has no concept of I shouldn’t hit a woman, it’s just whatever chemical is going on in his head, it’s complete overload,’ she explained. ‘Hes a big adult person with all the teen hormones racing around and he has no coping skills, no outlet. He can’t play sport, go out with his friends, play loud music all the things that other young people do to let off steam he has it all in there building up.
‘Sam’s routine is extremely predictable because he needs that. He needs to be told what’s coming next. If things keep happening in a certain way he can rely on it and he’s calmer. It’s anxiety.’
She said on the programme: ‘I can’t tell you the difference it makes having respite. It makes such a huge difference if you know that you’re getting respite in three weeks time you can carry on inbetween but if there’s no break on the horizon, ever, that’s where we are now - there is nothing - that’s really really hard.’
After the RTE special aired, Jacinta received an outpouring of support and well wishes and her story and those of others featured highlighted the ongoing lack of resources for families in need of respite care for loved ones.
Last week, the government announced funding of €10 million, including €8m which will be provided for nine new dedicated houses for respite in each community health area, plus an additional three houses in the greater Dublin area to respond to the very high demand for respite in this area.
These additional twelve respite houses will provide approximately 19,000 respite nights per year to the people living in those areas on a full year.
Speaking to the Drogheda Independent this week, Jacinta said she was delighted the funding has been ringfenced for these services and believes the Primetime Programme ‘Carers in Crisis’ helped to shine a spotlight on the issue and bring it to the fore after years of campaigning by local groups and politicians.
‘I think the programme did highlight the whole list of concerns particularly for adults. There is such a lack of support, planning and transparency. It’s about planning and being involved in planning for your child’s future.
‘Everything seems to be left until things reach an absolute crisis point. It makes no sense. If people have respite then their families can live at home with them for much longer. It’s cheaper, it’s better for them, it’s better for the family. They child or adult gets to know other people and becomes familiar with other environments so that if, down the road they have to move it’s not such a big shock. There’s a care plan in place.
‘It’s not a case that suddenly a parent has a stroke or something and emergency care has to be set up, which is expensive and not in the persons best interest.
‘We want to keep our children at home as long as possible but you need that break, you need respite.’
She said the programme really struck a nerve because people could see the physicality of what carers are dealing with on a day to day basis.
‘ There was a huge reaction to the programme and loads of messages of support and well wishes. I know lots of parents like me, lots of families in similar situations. How can people who haven’t experienced this understand it, half the time I can’t believe myself the stuff that’s going on in my house. We’re in some parallel universe.
She said the campaign has received a lot of support locally with local politicians campaigning to improve respite services and continually raising the issue on their behalf.
However, she said their questions were often met with blank generic responses from the government and the HSE.
‘Along with the lack of respite there’s a serious lack of clinical support. If Sam had been seen at a younger age I really think things wouldn’t have got as bad as it did. Becauase as a parent we don’t know what’s wrong, it was only through talking to other parents that we realised he needed to see a psychologist.
‘Sam is diabetes type 1 and when Sam was diagnosed the medical professionals take responsibility for him, they said he has diabetes we have to look after him whereas we don’t have that feeling with the disability services.’
She said the recent allocation is a welcome step in the right direction to providing proper respite services. ‘It is great that this money has been specifically allocated for this but we haven’t yet to be told exactly how this will be implemented. All I know is that Minister McGrath is aware of the empty respite house in Balbriggan. He said they are aware of it and are looking at it but I haven’t been told anything specific. It’s great the money is ringfenced, that’s really important.’