Tremendous support for our family
A LACK OF FUNDING MAY THREATEN A RESPITE SERVICE PAULA CONNOLLY, MOTHER TO ALEX WHO HAS A RARE DISORDER, HAS GROWN TO DEPEND ON
PAULA Connolly from Bray has spoken about how important St John of God Community Services is to her daughter Alex (23) who avails of day and respite services.
The service has written to the HSE to say it may serve 12 months’ notice if its funding crisis is not resolved.
Alex Connolly is a client of St John of God Community Services. She attends the day service at Carmona in Glenageary and respite in Ravenswell in Bray for 30 nights per year.
Alex lives with her parents Paula and Alan and her sister Abbie (16) in Fairyhill, Bray.
She has CDKL5, a very rare disorder affecting one in every 100,000. With only six cases in Ireland, the disorder is mostly common in girls. Symptoms include seizures, breathing irregularities, visual impairment and feeding difficulties, as well as absence of speech, poor muscle tone, sensitivity to touch, and difficulty sleeping.
Alex started in school with St John of God services at the age of five, then transferred to day services after turning 18.
‘It’s been so important to our family,’ said Paula. For example, when Abbie was younger, it meant she was able to do the school run.
‘Alex is used to her routine. If she didn’t have that, it would be very difficult for her and for me.’
She said that some of the daily routine for Alex in her day service includes sensory equipment with lights and colours, and swimming in the therapeutic pool.
These are the kinds of facilities which can’t be provided at home.
St John of God Community Services provides day and residential intellectual disability services to 66 people in Bray and north Wicklow. They also have mental health services for adults and young people at Lucena clinic and Cluain Mhuire in Bray. They said earlier this month that they need an additional €27 million to maintain services in 2020 and a separate plan is needed to reduce an accumulated deficit of €33.4 million. The HSE has said that it is working with St John of God Community Services on these issues.
Paula said that the staff in Alex’s day service know what she likes and doesn’t like. They have a plan for that and centre her day around what her needs are, with their limited resources.
‘She gets to be with her peers doing the things she likes, whether that’s the sensory room or hydro pool. I can’t meet all of her needs. As a mother I would love to but realistically, I can’t.
‘ They’re cutting the budget every year. We don’t know when that will start to affect Alex. We don’t know if her time could be cut to two days a week, we are always the last to know what the HSE are going to do.
‘Respite is a lifeline,’ said Paula, who said that Alex also seems to like the change.
She said that it enables them to do things that other families take for granted, like bring Abbie to the cinema or a play centre when she was younger. Alex doesn’t like loud noises so those things are not possible most of the time.
Holidays have also been made possible due to respite time, or staying home and doing things like climbing Bray Head or doing the cliff Walk.
They told a politician years ago that while other people can go to the beach while on holidays, it’s not that easy when manoeuvring a wheelchair.
‘ These are Alex’s sleepovers,’ said Paula. ‘What happens if we lose day service or respite? She wouldn’t cope and I couldn’t cope.’
Alex requires constant care, and the respite and day services mean that Paula and the rest of the family can recharge their batteries and have plenty of time and energy for Alex when she is at home.
Paula sleeps with one ear open and on the monitor at night in case Alex suffers a seizure. ‘As I get older I will need more respite, not less,’ she said. ‘Older parents are expected to continue 24-7 care as they get into their 60s and 70s. ‘If I have adequate respite, I won’t need to look for residential care later,’ she said.
‘I will look after her myself for as long as I am able, and can’t see myself handing her over, but we have to be forward-thinking,’ she said. Paula said that she has always had a battle to achieve what is needed for Alex’s care. ‘I constantly have to fight for everything, whether it’s extra splints for her feet or continence supplies,’ she said. ‘Some parents get to the stage where they just give up. How far can parents be pushed before they snap?’
Paula said that the staff and carers at St John of God Services are fantastic. ‘I have never had any issues. They mind her and are good to her even though they withstand budget cuts every year. I never have a bad word to say about them. Everything she gets hasn’t wavered and is still the same. How much more of the budget can be cut before Alex is affected,’ she said.
‘If they don’t get the funding things will have to change. Services will have to change and that could be a big problem. There’s uncertainty there. Not knowing what tomorrow brings can be very frightening.’
ST JOHN OF GOD SERVICES ARE FANTASTIC... EVEN THOUGH THEY WITHSTAND BUDGET CUTS EVERY YEAR