There’s no doubt that the Collins home revolves around the very chatty, bespectacled youngest child of the house, Chloe (14), who is very set in her ways.
“A four-foot-eleven boss,” remarks her older sister Amy (20) without a trace of bitterness. That’s just the way it is when there’s a child with special needs in the family.
Their mother, Eimear, had to give up her job as, ironically, a special needs nurse in the Sunshine Children’s Home and Rehab Centre in Leopardstown, Co Dublin, after the birth of Chloe. The third of three daughters, she has cerebral palsy, sight impairment and an intellectual disability.
As every parent knows, you don’t switch off being a parent, says Amy, “but when you are a carer it really is 24/7 and you don’t get paid breaks.” Which is why Eimear, her husband Kieran, a painter and decorator, Amy and the middle daughter Lynn (18), are delighted that they get respite care for Chloe through the St Michael’s House Home Sharing programme.
Every month Chloe goes to her “other family”, Paula Murphy and her husband Greg Kerr, for one Friday overnight stay in their Dún Laoghaire home and also a Sunday afternoon visit. It gives the rest of Chloe’s family the opportunity to spend time together without constant interruptions. It’s also a chance, says Amy, for Eimear to “recharge and refuel and literally do it all again for another month”.
Strong rapport
A strong rapport has built up between the two households over the seven years since Chloe started this family-based respite care, as opposed to the centre-based respite she used to get at the Sunshine Children’s Home. Any apprehension Eimear had initially about entrusting her daughter to “strangers” has long gone.
Paula believes it’s a “win-win” situation, but more host families like hers are needed for the programme.
“St Michael’s House has 1,700 clients [adults and children] and at the moment we have 104 on our waiting list for this respite service,” says Fidelma Kelly, co-ordinator of the home sharing programme. “We are actively trying to recruit host families who have time in their life to do this work.”
They are looking for people in the community who might have enough free time to host as little as a one-day visit a month, or eight breaks in a year.
“We are very flexible: we work around people’s commitments, their lifestyle, their availability.”
No prior specialist knowledge is necessary and Kelly estimates that about 10 per cent of their families would have had no experience of people with a disability. Personal traits they look for in hosts include a warm personality, flexibility, patience and common sense. Assessment and training run concurrently over roughly a six-month period.
“It gives time for people to think about it,” says Kelly, who uses her home visits to get to know a family’s strengths and weaknesses, “and we work on people’s strengths.” She also goes to great lengths to match the right client with the right family.
Allowances paid to short break families range from approximately €30 for a daytime stay to €50 per night, and up to €20 in expenses can be claimed in both cases.
Relief work
Sitting on the sofa in the front room of the Collins’s home in Sandyford, Co Dublin, Paula explains how she had been doing relief work in an adult residential house at St Michael’s House when she first heard about the home-sharing scheme.
She talked to Greg about it and they decided to give it a try. The couple have three grown-up children of their own who have left home.
“I felt it was something we could do together. It was for me a way of doing my work at home – and also a way of working with kids.”
As Paula had experience of working with people with disabilities, they are one of seven contract families working for the St Michael’s House home sharing programme. She and Greg, a primary school teacher, take in three teenagers. “It is nine visits a month between the three kids, three of which are overnights,” says Paula.
Contract families receive retainers that range from €5,000 to €10,000 a year, depending on how many respite sessions they can provide in a month. In addition, enhanced expenses per visit are paid and these are determined by the needs of the child placed with the family and the type of respite break.
“There was a lot of support and training,” says Paula. “Chloe has epilepsy, so there was training around that.”
It meant Paula felt fairly confident going into it, although “at the beginning I suppose it was a bit daunting – you have somebody else’s kid, it is a big responsibility. But when there are two of you doing it together, it’s great.”
Eimear too was nervous initially about the idea. “I was afraid to let Chloe go to a place she wasn’t used to.”
But after meeting Paula with the social worker, she was reassured. When it came to the first overnight stay, after several “warm-up” visits, Eimear told her daughter she was going on a sleepover, like “the girls”, as Chloe refers to her older sisters.
Extra attention
Lynn was only 11 and Amy 13 when the arrangement started. “It made a huge difference,” Lynn recalls. “It meant we got that extra bit of attention – not that we were neglected – but Chloe would have got most of it.
“It gave us the chance to be the children that we were. It was just being with your Mam, not making sure that Chloe was okay.
“I remember being sat down and told this meant we could play board games as a family. That never took off,” she laughs.
“On a Friday night the four of us could have a takeaway and watch a movie without Little Miss Sunshine here,” Lynn says, nodding towards Chloe, “wanting to watch her stuff.”
“Or we could go for dinner without Chloe having to be home at a certain time,” says Amy. “Not every restaurant would be disability accessible and, even when you’re in it, she can be loud, she can be boisterous and people stare at you.”
“They could have their friends over too, without worrying,” Eimear points out. The rest of the time it was difficult to bring friends home, agrees Lynn, a mobile nail technician.
“We wouldn’t, unless it was a long-term, close, close friend. Otherwise it would be avoided. It is uncomfortable for us to see our friends being uncomfortable with our sister. It still happens but we’re older and we can explain it better.”
“You can define friends on how they treat her,” adds Amy, who is studying community and youth work in Maynooth University and works weekends as a supervisor in SuperValu.
Time together
She says she appreciates even more, now she’s older, how the respite care gives the four of them time to be together, “and you would think it would be the opposite. But because I work and I go to college and Lynn works – the fact that you know it is going to happen, you can plan it.”
When they come home on a Friday night when Chloe’s away, “I can turn the lights on, I can talk out loud,” without fear of waking their younger sister, Amy explains. “It’s simple little things like that. And she’s not going to be waking you in the morning at seven o’clock and you can sleep until eleven.”
“She wakes me instead,” laughs Paula, who takes Chloe swimming at the Loughlinstown Leisure Centre on most visits. She and Greg also take her tenpin bowling regularly and go out and play football.
“They’re talking about me,” chips in Chloe from time to time during the interview, rocking forward to put her hands over her eyes. Dressed in the navy blue, crested tracksuit of St Michael’s House where she attends school every day, she’s seated on the sofa beside Paula who remarks with a smile that Chloe’s “revelling in the attention”.
It seems Chloe is usually on her best behaviour when she is on a visit. “She is not always the same person at home as she is at Paula’s,” is how Eimear puts it. “She can be challenging coming in from school and things like showering.”
“But she does have two people giving her undivided attention,” points out Paula.
“It is a common-sense way to provide respite because most children live in families and, as an alternative, families are best placed to provide respite,” says Kieran Keon, chairman of the National Home Sharing & Short Breaks Network (NHSN). The network was set up in 2003 to support staff in services who were trying to meet respite needs through home sharing.
Person-centred
“It is person-centred, it is individualised and, in many cases, especially with children with higher needs, you have more than one person looking after them, if there are two parents and adult children. We have some cases where there are five people looking after one person because they are all there together and all involved. It’s fantastic.”
The cost-effectiveness of home sharing is "way down the pecking order" of the reasons services want to develop these community-based programmes, says Keon. He's a social worker with Ability West in Galway, which runs a home-sharing respite scheme with the Brothers of Charity. They don't have a shortage of host families but they are having trouble expanding the scheme due to lack of staffing and of financial resources for funding placements.
Where contract families are paid to take in children with a higher level of need, it may not be cheaper than centre-based respite, explains Keon, “but the quality is way better because they are not sharing with a group of other people with disabilities”.
For more information about the home sharing programme at St Michael’s House, Dublin, email homesharing@smh.ie or phone Fidelma Kelly on 01-8770500 or Bernie O Reilly 01-2990500. See also nhsn.ie
swayman@irishtimes.com
