For Roz O'Connor from Blanchardstown, the overnight stays a couple of times a month by her 10-year-old son Bradley at the Daughters of Charity on Dublin's Navan Road provided an essential haven.
"We are sick of being in this fight between the HSE and the Daughters of Charity. This has never been about Bradley. It is about allowing a family unit just to 'be' for a couple of nights a month or to have a holiday.
“This is to protect the sanity of all the families’ other children. It’s about protecting marriages and the family unit,” said Ms O’Connor, who will join other parents at a protest outside Leinster House on Tuesday.
Bradley’s family had two respite nights in November for the first time in three years. But there are other families who have not had respite for two years. All the families want, she said, is to live “a normal life and to have some support”.
Round-the-clock care
Children such as Bradley are still attending the Daughters of Charity’s St Vincent’s day centre, but the families argue that they cannot continue to provide round-the-clock care without the respite offered by the Navan Road facility.
Some parents have injured themselves because of the constant lifting and struggle required to look after their special-needs children 24 hours a day, seven days a week: “We do have a certain amount of support and I’m grateful for that,” said Ms O’Connor.
Three children whose families fell into crisis are living at the Sancta Maria respite centre on the site on a full-time, residential basis, but this means the beds are unavailable to other families. Nearly €1 million is needed to convert a nearby house.
Meetings
Both Tánaiste Joan Burton and Minister for Health Leo Varadkar, in whose constituency the centre is located, "are aware of the situation" and have had meetings with the families over the past two years.
A Daughters of Charity spokesman said the service had been at a reduced capacity “for some time now” due to the requirement to facilitate, on a full-time basis, some children with high support needs.
The Health Service Executive has offered a house, but nurses are not available to staff it, though the Daughters of Charity said they “are hoping” that extra money will be available in the HSE’s 2016 service plan.