I love spending time with my family but I miss respite
Five-year wait for overnight stay
AN ATHLONE teenager with special needs recently had her first overnight stay in respite services… five years after her name was put on the waiting list. Alanna Egan, 18, has a rare genetic condition which means she needs 24-hour supervision. Living at home with her mother Laura, father Anthony and a younger brother and sister, Alanna has thrived. Six years ago, fulltime carer Laura applied for child respite services after being told by a social worker that she would be eligible for the services. Alanna was 15 years old before she received eight monthly hours of daytime respite care. Last October, Alanna turned 18 and just before her birthday, she had her first – and so far only – night at a local respite facility. Now Alanna is too old for child respite, and her daytime respite hours have been cut. The Egan family worry that the young woman faces another three-year wait for overnight respite hours.
Laura, 37, said she had no idea when she first applied for respite hours that the family faced a three-year wait.
‘I left it at first but then I followed up to see if anything was going to happen. We were always told the same thing, that they were waiting for funding.’
Laura said she tried approaching her local TD in the hope of speeding up the process. But she said: ‘I realised early on that when it comes to respite, it doesn’t matter who you get in touch with. Even if you get in touch with the Minister for Health it all comes down to the funding in your area.’
Alanna has Koolen-de-Vries syndrome. It is associated with brain and kidney anomalies and moderate learning disabilities. Alanna has anxiety disorder, sleep disorder and autistic traits.
Laura explains: ‘Alanna’s mental age would be between seven and nine, so she would need to be cared for as such. She needs full care and support to carry out all basic daily tasks. I couldn’t pop out to the shop and leave her alone.’
Alanna’s anxiety disorder has to be managed carefully as it is easily triggered by change. ‘If her anxiety is high she doesn’t sleep, and if she doesn’t sleep, we don’t sleep,’ Laura says. ‘She could walk the floor all night – she has no control over it.’
In an ideal world, Laura says her family would get eight hours weekly respite for Alanna and potentially one overnight stay a month.
Alanna says she enjoys respite. She says: ‘I love spending time with my family but I miss seeing my friends in respite.’
Laura fears that without consistent respite care and with the potential for a lengthy wait until hours are once again granted for Alanna, her mental health could suffer.
‘I’m anxious for her, because it’s going to affect her mental health. She’s very aware of the world around her and she’s very aware she doesn’t have a social life.
‘The care providers in the local respite centre are so good and have always tried their best for us but the problem with respite hours needs to be dealt with at a higher level.’
Laura and her husband, Anthony, 42, who works in hotel management, are raising their other two children Shannon, 10, and eight-year-old Darragh, to be carers for Alanna.
Laura fears that her younger children will have a poor quality of life in the long term due to the delays in accessing respite care: ‘It’s a worry because we’re raising our other children to take over when we’re not around any more.
‘They need to have services in place so that siblings are going to have the life they deserve too.’