'Taking away special school summer schemes is devastating for families'

Summer schemes at special schools in Northern Ireland not taking place this year will be "devastating for families", the mother of a special needs child has said.

Claire Miller said this decision has the "potential to cause breakdowns for families" as so many rely on the respite during the summer holidays.

On Thursday the Education Authority (EA) confirmed the summer schemes will not go ahead due to "concerns about the adequacy of health care provision for vulnerable participating children".

They said they have "engaged repeatedly with the Department of Health (DoH) over several months in an attempt to avoid this situation". The DoH said the decision by the EA was "highly regrettable".

Miller's 14-year-old son Danny has a severe learning disability, autism, ADHD, as well as challenging behaviour.

She said he has very high support needs and requires a lot of structure and routine which he gets from school.

Miller said her family relies heavily on the summer scheme to "get a break and to have a bit of respite".

"The days are really long at home, and to fill a day with Danny can be really, really tough so [the summer scheme] just gets him out of the house and gives him a bit of normality – just to have that routine of school which is so important to him.

"Trying to get through those nine weeks is really challenging anyway and everyone looks forward to that week of summer scheme, so to not have it this year – it's going to be very, very distressing to a lot of families," Miller said.

Fiona Forrest's six-year-old son Ted is autistic and went to a summer scheme last year.

"Once again the most vulnerable in our society are punished by those at the top - it's just constant," she told BBC NI's Evening Extra programme.

"I think I speak on behalf of every SEN parent when I say we are exhausted.

"People don't realise how fortunate they are that they do not have to fight the fights that we do for our children that deserve every bit as much as every other child."

Forrest said last year's scheme made Ted's summer and that he would "run out the door" to go to it.

"He was able to spend five or six hours with people who knew him and care for him deeply and we never had a worry about him," she said.

"To find childcare for complex needs children - it's not easy, it's downright impossible for some people."

She said she had planned that during the week of the summer scheme she would be able to do more things with her other children.

"That now won't be possible," she said.

"I know it is one week, it's five days and in the grand scheme of things I know people think that's nothing, but to families like ours it's monumental."

In a statement, the EA said the decision to cancel the summer scheme was taken "solely on safety grounds".

"We deeply regret it and fully understand that it will be very distressing for children and parents."

The EA said they have "made clear that on-site nursing cover at the summer schemes would be required to enable them to be safely held this year".

"The DoH has confirmed this week that this would not be available. On that basis, only one decision can be responsibly made for this summer."

Speaking at a Stormont committee, the Health Minister Mike Nesbitt said: "We are looking at contingency plans...but I think that it's just very disappointing that those summer schools are being suspended.

"It's very important to all of the children who attend and to the parents and the carers.

"What I'm trying to understand is why they were able to go ahead last year but not this year. What has changed?"

The EA said they "deeply regret" the decision and "fully understand that it will be very distressing for children and parents".

They said they will continue to engage with the DoH to "resolve the underlying and long-standing issue of health care provision for special school pupils".

In a statement, the DoH Permanent Secretary Mike Farrar said SEN summer schools "have been running successfully and safely in Northern Ireland for several years with nursing support which did not include onsite nursing presence in all sites".

"Based on clinical advice, the safe delivery of these summer schemes does not require onsite registered nursing provision in all sites.

"We have advised that in previous years the CCNs (community children's nurses) provided additional training and support to classroom assistants who work on the summer schemes and we have offered to provide that at an enhanced level."

Farrar said to meet the expectation to have a registered nurse from the CCN team onsite in every special school would "mean taking nurses away from the provision of frontline clinical care".

"We will make every effort to ensure that alternative support can be put in place to lessen the impact of the EA decision."

Miller said this decision to cancel the summer scheme for special needs children has the "potential to cause a significant crisis for all services over the summer for families".

"Especially for families like mine that would have the higher support needs and for the children that have more challenging behaviour, because to try and get through nine weeks with no help and no respite – it's going to be devastating.

"A lot of families are already on edge and maybe don't even get respite, and summer scheme is the only respite that they're going to have over the summer so to have that taken away it's really, really concerning.

"It just feels again like the most vulnerable children in society have just been forgotten about – it's heart-breaking," Miller said.