Urgent need for respite services - 'Carndonagh centre must reopen'

Carers and public representatives have called on the Government to provide urgent respite services in Inishowen.

Currently, Inishowen is affected by a lack of respite services. Riverwalk Respite House in Carndonagh closed its doors during COVID-19 in order to provide emergency residential accommodation for people with a disability who were facing homelessness during the pandemic.

However, the facility that can cater to the needs of three residents, hasn't reopened and families are continuing to struggle without any respite from the constant care of their loved ones. Riverwalk is one of four respite centres in Donegal that provides services for children and adults with disabilities on alternate weeks. The closest respite centre that is open is outside the peninsula in Letterkenny.

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One family in Inishowen has described the past 35 years as a “constant battle” to obtain services for their son. The mother of the 35-year-old, who didn't wish to be named, described it as a “permanent struggle and we are burnt out because there is no switch off.”

“You are trying to do ordinary things when he is at the day centre just like keep your house going and get your shopping because it's not possible once he’s home.”

The family of the man who attends a day service during the week has only received two nights of respite in the past three years. His siblings have moved abroad and his parents in their early 60s are his only carers providing round-the-clock care when he isn't in the day centre.

The Inishowen mother said there is no light at the end of the tunnel for them “because he is too strong for me to manage so I am fortunate to have my husband who is great with him.”

“We want to be able to look after our son but to do that we need respite services. That allows us to have a night off or something to look forward to.”

“It is like having a baby in the house 24/7. As your child ages and grows out of the child stage it is impossible to get a babysitter so you're reliant on services.”
While her adult son received two nights respite for the first time in three years in recent weeks in Letterkenny, a solution needs to be found to reopen Carndonagh sooner rather than later, urges the carer.

“If Carndonagh opens again then my son can attend his day centre from Carn. If someone is in a respite service in Carn then they can still go to their day service where the staff is familiar with them and will know if they’re prone to seizures etc. While the adult child will feel familiar with the staff in both places. The child needs to be comfortable and so do the carers and parents.”

The exhausted mother says she knows of other families in similar situations and over the past 35 years things haven't got much easier.

“I have been fighting for 35 years and you get tired, I don't have the energy. My parenting days should be over when they go off to college but that doesn't happen with a child with intellectual disability.”

“Even when he goes to the day centre you never switch off. That is why I describe him as a baby because you have the same concerns even if he is at the day centre you're carrying the phone around with you the whole time, it was the same when he was at school.”

Now in their early 60s and facing retirement with very little respite is a huge issue for the Inishowen woman.

“If anything happened to my husband I wouldn't be able to manage him on my own. Once your child is diagnosed you have this worry about what will happen to your child when you die and it is scary that there is no emergency plan in place.”

While she was glad to get two days respite, the Inishowen mother says it needs to be a regular occurrence if parents are to get a break.

“It is essential that Riverwalk reopens. It only is when you get respite that you realise how much you need it. I can leave doors open, don’t need to set meal plans, or have to be back at a particular time. He is so dependant on a routine,” which she says curtails life.
An ideal scenario for her is regular planned breaks so she can attend family occasions after missing so many events throughout the years. Her other two sons live abroad but visiting them “isn’t even an option.”

Meanwhile, North Inishowen 100% Redress Councillor Ali Farren has written to the Minister of Children and Disability Norma Foley to highlight the lack of services and for her to investigate reinstating respite services in Carndonagh.

Councillor Farren has also invited Minister Foley to visit Carndonagh and meet some of the families “who need some person like yourself to deliver for them.”

Councillor Farren outlined in a letter that there was talk of Riverwalk House reopening but “to date, parents of adult disabled children have not received any update on the re-opening or possible dates for respite.”

The service in Letterkenny is overrun says Councillor Farren and Inishowen is “the 33rd County we should have our own respite services. It is barbaric that parents of adult children are getting very little help. They need respite for their own mental and physical health.”
“It is an issue that is affecting everybody, so all elected officials should be behind it. Deputies Charles Ward of the 100% Redress party and Sinn Féin Pádraig Mac Lochlainn have both acknowledged the letter and other Senators in the Seanad.” Councillor Farren concluded that he has been contacted by many concerned families in the past year.