Anger, frustration and disappointment at lack of crucial respite services for children with additional needs in Donegal

Anger, frustration and desperation were the overriding emotions at a meeting held to address the lack of respite services in south Donegal.

These crucial services for children with intellectual disabilities should be provided at Sea View House in Mountcharles. But they have dwindled to nothing in recent years.

Around 120 people attended a public meeting in the Abbey Hotel on Monday evening to address the matter. 

Senior members of the HSE as well as government ministers were invited to the meeting, but did not attend. This was met with much frustration by parents seeking answers as to if and when crucial respite services would be restored.

Some parents shared deeply personal experiences of the challenges they and their families faced in caring for a child with additional needs.

The meeting opened with a video in which Emer Coughlan shared what it was like to care for her son who has Down Syndrome, Autism and ADHD (watch the video by clicking here).

“Closure of a respite centre can make or break a family,” she said, stressing the need for support not just for the child but for parents and siblings too.

“Respite allows families time to relax, recharge and spend time together. 

“I am asking all parties in government to get over their differences and work together. Tomorrow in the Dail, have a conversation with your colleagues. We need seven days per week at least 50 weeks per year.”

Mrs Coughlan also called for restoration of July respite provisions.

She said that she loved her son very much and wouldn’t change him.

“I just with that there were more services available to the likes of me,” said Mrs Coughlan.

Another parent read a letter from her 16-year-old son who shared his experiences of having a 14-year-old sister with additional needs. 

He said: “In our house my sister in the main focus. She get most of the attention because she needs it. I spend most of my time trying not to add to the burden 

“That is the reality of our situation. What respite care would offer us is the chance to experience normality. We would have a chance to talk about something other than her with each other. Respite car is not about passing the buck. I love my sister and I will always be there for her but sometimes it feels like who will be there for me?”

This impact on the whole family was echoed by many families who were present at the meeting.

Mayor of Donegal Town Pauric Kennedy said these children were being robbed of their childhood. He said struggling parents were being robbed of their marriages because of the constant strain they were under. 

“We need to get money to these services,” he said.

The meeting heard that a three-year contract to run Sea View House had been awarded to Rehab. But there was much dismay with news that the contract was strictly for a five-day, Monday to Friday service.

One parent said: “It is at weekends that people need respite most. Weddings, christenings etc are always at weekends. I have never been invited to a wedding on a Monday.”
Cllr Micheal Naughton (FF) called for representation to be made to run the five-day service from Wednesday to Sunday, while continuing to seek a seven-day service. 

This was met with applause. 

However, Rehab representatives said they were contracted for a Monday to Friday service only. They added that they were aware of the need for a seven day service, and had passed this information on to the HSE.

In regard to the centre having been closed since the start of the year, a Rehab representative said that having been awarded the contract, they had expected to take over the building in the first quarter of the year. But the HSE had required that building work be carried out to comply with fire safety. This was completed last Friday and Rehab’s next steps were HIQA registration and the drawing up of a lease with the HSE. He assured families that Sea View House would re-open by January 13, 2020 at the latest, but they had no say in making it a seven-day service.

Deputy Pearse Doherty (SF) said: “It gets my blood boiling when we have to go to meetings like this to fight for things that should be automatic.

“The HSE penny pinching is putting money before the needs of parents. It is the children and the adults who need the service that are losing out.

“HSE should be here and they should listen to parents and listen to the words and the passion in your voices.

“The real issue here is who is making the funding available to the HSE?”

He said it was the minister who signed off on the HSE budget. 

Deputy Doherty said there was a request with the HSE that Sea View House would open for seven days a week. It would come up for decision before Christmas.

“We need to make sure the right decision is made,” he said. 

He spoke about the challenges faced in fighting for services for children with special needs, and of his personal experience of this.

“Children are set up to fail before you can show they need the services,” he said. “It is like banging your head against the wall.”

Deputies Thomas Pringle (Ind), Pat the Cope Gallagher (FF) and Eamon Scanlon (FF) also spoke strongly on the matter, and vowed to keep fighting for a full service.
So too did Cllrs Tom Conaghan (Ind), Barry Sweeny (FG), Niamh Kennedy (Ind), Noel Jordan (SF), Michael McMahon (SF) and Micheal Naughton (FF).