Parents of children with disabilities and additional needs are demanding improved respite services for Co Monaghan.
There is currently no overnight respite facility located in Monaghan for children, with some children having to leave the county to avail of respite.
The closest overnight service is located in Cootehill in Cavan, which services both Cavan and Monaghan.
However, it accommodates adults and children on alternate weeks.
The HSE says that 34 children currently use the 5-bed unit, but a further 49 children are on a waiting list to access the service.
While there is an after-school service provided for children with additional needs in Castleblayney, children from Monaghan must travel as far as Mullingar in Co Westmeath to access day-respite services at the weekend.
Other home-based supports are also available to some families.
The Clinton family from Castleshane in north Monaghan is one of those families in need of respite.
Brian and Orla Clinton have been providing 24/7 care for their 9-year-old son Oran.
Oran has down syndrome, as well as other complex needs.
He is nonverbal, uses walking aids and needs to be peg fed.
His father, Brian says that Oran has never had respite.
“He’s full time. He has to be fed through a tube 4 times a day. He has a lot of sensory issues. He can’t express himself to us,” Brian said.
He describes his son as a “happy wee child”, who loves music, bath time, and being around other children.
“He knows what we wants, he just can’t express himself.”
“We’ve never had respite at all, just constant for 9 years, just ourselves,” he said.
Brian and Orla have 3 other daughters.
He said respite would be great to have at weekends, “to do the shopping and do things with the other wee girls”.
“It would make a big difference, if the girls have something on, me and Orla could go with them. It’s tough. They notice there’s only one parent instead of two, its hard on the rest of the children too.”
Brian also wants to see a dedicated special school built for children in Monaghan.
It is not just more respite services families in Monaghan want, many are also looking for a dedicated special school for the county.
At the moment, Oran is in a mainstream school with a full time SNA, but Brian says that as Oran gets older his needs will change and he would benefit from the specialist facilities a special school could provide.
At present, there is one special school for the region located in Cootehill in Cavan.
“I’d love to see a school open. We need it immediately for these children, because they’re growing up fast,” Brian said.
Family carers
Family Carers’ Ireland has said that respite services around the country are “fragmented, inconsistent and inequitable”.
“Basically, where you live determines what you will, or most often what you won’t get,” said Catherine Cox.
Family Carers Ireland said that Monaghan is not an outlier in terms of the level of service available, and there are other counties facing similar challenges.
Ms Cox said that an audit to show how many respite beds there are is needed, along with a register for carers to express their need, so that gaps can be identified, and services provided.
“We do not have enough respite places, but we also don’t know what the demand is. Until we have that register, how can we plan for the future?”.
Ms Cox said that family carers want to provide care, but they can’t do it on their own and they need respite.
“Respite is one of the biggest challenges facing family carers today,” she said.
She added that for carers, respite provides a chance to take a break from their caring role, quite often to catch up on sleep. But for the person receiving respite, it is also important to mix with their peers and have downtime.
Ms Cox said that while different families will have different needs, at a minimum, a family carer should have 21 days of respite per year.
Sonny’s story
Just outside Monaghan town, Gráinne McElvaney is looking to the future. Married to Emmet, the couple have two children with autism diagnoses.
“Sonny is 4-and-a-half and Robyn is 2-and-a-half. Sonny is a lot more severe than Robyn. He’s nonverbal, a huge flight risk and last week, we said it out loud for the first time, he requires round the clock care,” Gráinne said.
While Sonny is too young for respite now, Gráinne can foresee her family’s need in the future.
“We get 2 nights sleep out of 7. It’s lunchtime now, and we’ve been up since 1.30am. If that’s to continue for the rest of Sonny’s life we will desperately need respite, and there is none.”
She says that families with children with additional needs who don’t sleep, can’t call on family to take over for a night.
“The only 2 people that can mind Sonny are my 2 sisters, and even at that, they have their own kids, so it’s a huge ask to ask them to lose an entire night’s sleep when they have their own commitments,” she said.
Gráinne set up a social media page last year called “Sonny’s Dream” to connect with other families in similar situations.
She says that from speaking to other families, additional respite services in Monaghan are “more than needed” and that “so many families are at breaking point”.
The HSE says a capital funding proposal has been submitted to its National Estates Office for a bespoke standalone children’s disability residential respite service for children from Cavan and Monaghan.
The Cavan Monaghan Disability Services are awaiting an update on the status of its proposal.
It says, at this time there is no date for the opening of a children’s disability residential respite service, which is dependent on the confirmation of capital funding and progressing the building project by the Estates service.
For the families in Monaghan crying out for improved services, it can’t come quick enough.
