THE Health Service Executive is being urged to allocate funding to ensure a respite facility for disabled children can continue to operate over the summer.
The €2.9m St. Gabriel’s Respite House, which is the first purpose built facility of its kind in the country, was completed 18 months ago but has not opened due to operational funding deficits.
However, it has now been specially adapted and opened in response to the urgent need for support to parents exhausted by the round-the-clock care they give their children.
Located in Mungret, the dedicated facility is designed to provide respite breaks for children from across the Mid-West who have physical disabilities and complex medical needs.
The children typically attend St. Gabriel’s School at nearby Raheen during day-time but the school has been closed since the coronavirus outbreak in March. Likewise, carers have not been able to visit some families, leaving parents left on their own to provide for the 24-hour complex needs of the children.
The creation of a June Programme, however, has brought much needed respite for both the children and parents. But funding is now required to keep the high dependency unit open into the future or this much-needed support will be withdrawn at the end of the month.
Some 28 families are taking part in the programme, with four children attending each day from 10am to 2pm over a four-week period during the June Programme.
Each child has their own separate rooms, including bathroom, with direct access to the outside when spending the day in their own ‘pod’. Two staff typically look after each child but three in cases where the child has particularly acute needs.
"We have developed this wonderful facility for the Mid-West but we were not able to open it until now. I couldn’t have envisaged being able to open its doors at a greater time of need for parents and, indeed, the children. These children get to attend and receive dedicated and specialist support at our school daily but that was taken away from them by the necessary shutdown due to Covid-19," said Maire O’Leary, CEO of St. Gabriel’s.
"The parents had to pick up all the pieces themselves. We helped them as best we could remotely but telehealth does not work for children with such complex disabilities. They are non-mobile and use a wheelchair, some are non-verbal, PEG fed and need oxygen and many have life limiting conditions. They need care, love, fun and support which they can only get when people interact with them on a personal level, face to face," she explained.
The June Programme cost around €10,000 to run over the four weeks but will have to be withdrawn if funding cannot be secured.
"We’d dearly love to continue it. We are appealing to the HSE to commit to future funding to keep the respite house open to families of children with physical disabilities and complex medical needs, as we know what this is doing for the parents and, indeed, for the children. They have their own special place to go to now," said Maire O'Leary.
Lorraine Tierney, whose son Dylan has attended the Respite House in recent weeks says it has been a "gift" for her family.
"We love our child more than anything but we are working around the clock as a family to look after his needs and we are exhausted. It’s been an incredibly difficult time as, in addition to his needs, Dylan would not survive getting Covid-19 so we have to be so careful with regard to measures to keep it out from our home. The respite house in Mungret, however, is such a safe and suitable environment and the staff leave no stone unturned to keep it so. At the same time, it’s wonderfully colourful and interactive and Dylan is loving it,” she said.
"You can see that he loves the break and he definitely needs a break from us too. We then get to catch up on house work, spend time with our other child, maybe do some shopping. It’s changed our world these past few weeks, even if we only get a few days It’s precious time for Dylan, precious time for us and it gets us all recharged and ready to go again,” she added.