Children with profound special needs suffer due to cutbacks

Children with profound special needs are suffering severely due to cutbacks in therapies and in respite care places at a Dublin-based centre, according to their families.

The cuts to budgets at the Daughters of Charity developmental education centre on the Navan Road mean children have started to regress in their abilities and in some cases challenging behaviours have worsened, say parents whose children attend the service.

Veronica Honan, whose son Cian (10) attends the centre and has a developmental age of six months, says he has begun to regress due to the lack of therapies. Cian used to be able to hold a spoon and to self-feed, but he can no longer do so, she says.

He can no longer walk without supports and though he uses a special walking frame, his walking has regressed so much that it is not supporting him any more. Ms Honan says he loves to be upright, standing and moving.

The service has taken “constant hits” over the years, she says. “We want adequate therapy supports for our children to meet their needs. Not just skeleton support, not just the dregs. Our children are the most severe cases and I think they are ignored because they are silent and weak.

“I just want what every other parent wants for their child. Unfortunately, my child needs more than most.”

Trevor Deegan’s son Taylor is 19 and has Down syndrome and severe developmental delay. His family was getting five or six nights a month of respite up to about two years ago, but this has been reduced to two nights a month.

Mr Deegan dropped Taylor off for respite this week. “It was the first time I was able to look at my wife, who I don’t recognise these days, and just stay quiet and breathe for 10 minutes. It’s exhausting.”

Sancta Maria, the respite unit at the Daughters of Charity centre, is being used by the HSE as a residential home for three boys, leaving just one available place.

Another house nearby was renovated by the HSE with a view to it being used for the residential places.

But the families claim the HSE has now reneged on a promise made in February to get the new residential unit up and running using cost savings from converting contract staff to permanent staff.

Roz O’Connor, whose son Bradley (10) uses the Navan Road service, is one of the parents who has been involved in meetings with the HSE and the service in efforts to get the new residential unit up and running.

Opening the new house on the Navan Road would free up respite places at the Daughters of Charity centre which are unavailable because three children, whose families fell into crisis, are living there.

“We are all mentally and physically exhausted at this stage. We just can’t cope without having the support of respite,” Ms O’Connor says.

In a statement, the HSE said it was aware of the issue within Daughters of Charity that had required the closure of respite services “on a temporary basis”. It did not address the depletion of therapies.

Joint efforts

It said joint efforts had been made by the HSE and the Daughters of Charity to open the children’s residential home at 175 Navan Road.

The executive’s Dublin North City disability service had allocated funding for the adaptation of this house to accommodate clients with specific needs and to provide the staffing resources to allow the Daughters of Charity to operate it. “In so doing, it is imperative that Hiqa’s registration requirements are complied with, which can take approximately six months.

“It is necessary to ensure the correct staffing skill mix is in place. Unfortunately, it is not possible to staff the house from within existing resources and an approval/advertisement process will be required, which will be progressed by the Daughters of Charity.”

While the HSE had set a date of mid June for completion of this process, it was “contingent on the completion of the steps as outlined”.