A group of families with children attending a special school in Carrigaline, Co Cork, say many of them have been left in crisis because they cannot access overnight respite services for their children.
These families say they are not even being allowed onto waiting lists for overnight respite, because the school the children are attending is not being operated by a traditional disability services provider.
Carrigaline Community Special School opened in September 2021, to address a chronic shortage of special school places for children aged four to 18 in the Cork area.
By the following September, it was at its capacity of 48 pupils.
Cork Education and Training Board (CETB) was appointed patron of the school.
Carrigaline was the first special school to be opened under its patronage.
CETB has no direct access to overnight respite services and no direct access to respite beds.
Overnight respite for children in Cork is instead provided by traditional service providers in this area, such as Cope Foundation and Enable Ireland.
Parents regard the availability of overnight respite services as paramount, to allow them to recharge their batteries, as many of them put it, to concentrate on other family members and to give the children themselves an opportunity to develop a measure of independence while they are in respite.
According to the HSE's Cork Kerry Community Healthcare, there is provision for 27 overnight respite beds for children under the age of 18 in Cork city and county.
However, the HSE also says that ten of these beds have been "surpressed or suspended" because of staff shortages, leaving just 17 beds.
Day respite sessions are also provided on a centre-based and out-reach basis.
Under the HSE's national Progressing Disability Services model, each of the 48 children attending Carrigaline Community Special School and their families are assigned to a Children's Disability Network Team (CDNT).
Each CDNT is in turn assigned a service provider, from whom they contract services, such as therapists and respite services.
The service providers for most of the children at Carrigaline Community Special School are Cope Foundation and Brothers of Charity Services.
Both Cope Foundation and Brothers of Charity Services also have special schools of their own under their patronage.
Children attending those schools which are under the patronage of Cope Foundation and Brothers of Charity Services can access respite services directly through those service providers.
Cope Foundation, Brothers of Charity Services and the HSE's Cork Kerry Community Healthcare all accept that there are not enough overnight respite places to meet demand, and all service providers are operating with long waiting lists for respite.
The problem for most of the children attending Carrigaline Community Special School and their families is that they cannot even get on these waiting lists.
Since it opened in September, 2021, children attending the school whose service provider is either Cope Foundation or Brothers of Charity Services have never had access to overnight respite services.
This has led to many families being left in crisis, according to an advocacy group set up by the parents, Cork Parents Unite.
"None of our students are receiving respite services at present. Many are looking for home support and overnight respite services and, again, nobody is receiving those," said Alison Murphy, a parent of one of the children attending Carrigaline and a spokeswoman for Cork Parents Unite.
"We have had situations where kids have lashed out at parents - vulnerable parents - and the guards have had to be called in. This is the level we are at. We are at crisis level. Families are at an emergency level at this stage."
She explained that while children attending special schools under the direct patronage of Cope Foundation and Brothers of Charity Services are put on a waiting list if respite services are not available, children attending school in Carrigaline cannot even get on these waiting list.
"Parents are worn down by the system. It breaks you.
"This system breaks you because you are fighting for something that doesn't exist, because it's just not there.
"We can't even get on a list. We are fighting to get on a list. We are not even in the queue. We need to get in the queue," she said.
The HSE's Cork Kerry Community Healthcare acknowledges that overnight respite services in Cork are not sufficient to meet demand. It said it is "continually" seeking additional funding to increase respite capacity.
Cork Kerry Community Healthcare also said it has established a new model for the provision of children's respite services in Cork city and county. However, it said this model is "still in its infancy".
It is understood that it has not yet begun to allocate overnight respite places.
Cope Foundation accepts it is the service provider contracted to support a number of children who attend Carrigaline Community Special School but, it said, its residential respite service for children is only available to pupils who attend the four special schools under its patronage.
Carrigaline is not under Cope's patronage.
"It is regrettable that there are insufficient residential respite services available to meet the needs of all of the families accessing schools attached to Cope Foundation, and to children accessing support from the three Children's Disciplinary Network Teams (CDNTs) for which we are the lead agency," Cope Foundation said in a statement to RTÉ News.
"At present, children's residential respite services provided by the foundation are only available to pupils attending the four special schools linked to Cope Foundation (Scoil Eanna, Scoil Bernadette, St Paul's School and Scoil Aislinn).
"Our goal is and has always been to provide additional respite services, but funding for the same is limited and allocated on a priority basis by the HSE."
Cope Foundation's statement refers to a plan to provide additional respite places in Cork, but adds: "This increased capacity, however, will not meet all the demands for children's respite in Cork."
Brothers of Charity Services said respite services in Cork have not grown to keep pace with the "significant" increase in the number of pupils attending special schools there.
Brothers of Charity said its facility for providing overnight respite services is full.
"The capacity of this one facility is limited, all respite rotations are fully allocated and there is a waitlist for services," Brothers of Charity said in a statement.
"Clearly, we cannot provide solutions to the huge respite demands from both existing and new special schools from our limited respite capacity. The focus needs to be on expanding respite capacity and a countywide allocation system for new capacity as it becomes available."
Cork Education and Training Board, which is patron of Carrigaline Community Special School, said it is
engaging with the Department of Education and the HSE seeking "an immediate resolution".
Minister of State for Disability Anne Rabbitte also said she is engaging with the parties involved to find a resolution that is fair to all families.
"The children attending Carrigaline Special School are equally entitled to access services, whether that's in-school therapies or respite," Minister Rabbitte said.
She described the situation as wholly unacceptable, and said she could not stand over it.
"Simply put, providers cannot put up barriers to services, regardless of whether they're under their patronage. This is taxpayer funding being used to support children, it’s not a turf war," she said.
Meanwhile, parents of children involved are growing more exasperated by the day.
"Everyone, everyone deserves a working system for them," Ms Murphy said.
"The disability system isn't working for anyone, I would think, but, for us, we are not even on a list. We can't get there. It's out of our grasp at the moment."
