‘The lovely family that helps care for Kellie’
Tuesday, 1 July 2008
Caring for an adult with Down's Syndrome can be difficult but thanks to a Northern Irish charity it needn't be faced alone. Chrissie Russell reports.
Kellie Rafferty is a warm, friendly, fun loving 25-year-old girl. She loves watching TV, bowling and going for walks in Ballymena where she lives with her grandmother who has looked after her since the age of four.
Kellie also has Down's Syndrome, a chromosomal disorder that means she has to be supervised 24 hours a day, something that largely falls to her 70-year-old grandmother Helen Paris and Helen's partner Terry (73).
"Kellie needs someone watching her 24/7, you can never let your guard down," says Helen. "If we're going anywhere then Kellie comes with us. She'll never get a house of her own or employment, it's just a level of independence that she'll never have. But we're lucky, she has no health problems and is very healthy and placid — that could have been different."
Respite care is provided for families that have children with serious learning difficulties up to the age of 18, but after that the situation becomes more clouded. Families often still have to care full-time for their child and are hugely reluctant to rely on using residential care, but can be left feeling the strain of constantly having to be the person who is always there.
It's the situation Helen found herself in when she moved from Scotland nine years ago to be nearer family after her husband died. "In Scotland when Kellie was younger we got two long weekends a month, a fortnight at Easter and summer and a week in October," she explains. "Then we moved here and there was nothing for over a year." Then her social worker told her about a Northern Irish charity organisation that could help. Positive Futures was set up in 1995 to provide support for people with learning disabilities and the people caring for them. One of the many services offered by the organisation is the Adult Placement service, a remarkable programme where volunteers open their doors to adults with learning disabilities to give respite care as often as they can. One weekend every month, Kellie stays in Moira with the Lynch family — Noel (45), Letifa (40), their two children Kenza (15) and Rhys (12), and their dog Harley.
"We discussed it as a family and decided it was something we wanted to do." says Letifa. In his teens Noel worked on a befriending scheme, visiting a man with Down's Syndrome called Jim. "Noel always spoke so fondly of Jim," says Letifa. "Hearing about his experiences, and how rewarding they were, was what attracted me to Positive Futures."
Although the Adult Placement programme desperately needs volunteers, there is still an important assessment process to go through and it was several months before the Lynch family were added to the register. But as soon as they were, Adult Placement social worker, Patricia Duncan, knew they would make a great match for Kellie.
"We try to match people based on what things they like to do socially, if they have children or animals. I had a feeling from talking to Kellie and Letifa and Noel that they would get on well. Usually we try to make sure they live as near as possible, but it's more important that it's a good match."
Just over a year later and it's clear her inkling was right. "Kellie just kind of fits into our family and what we're doing," says Noel and Letifa's daughter Kenza. "I hadn't known anyone with Down's Syndrome so I thought maybe she would be a bit shy, but Kellie just burst in. It took time to get to know her, but just in the way it would with anyone." She adds: "I think I would like to be a placement provider when I'm older, or maybe even a job working with people with Down's Syndrome."
"Kellie makes it very easy," agrees Letifa. "She's great with communicating and can do a lot for herself, sometimes I have to remind myself that she is special needs."
Understandably, Helen was initially anxious about handing Kellie over to another family. "It was daunting handing your child over to someone else and having to trust that they'll be ok," she says. "But Kellie loves going there and we both look forward to the respite weekends. Knowing that, for that weekend, I don't need to worry, and I have a bit of time just to do what I want."
Noel often works a 50 hour week in computer sales and Letifa is employed part-time as a legal secretary, but the couple are keen to stress that taking on caring for Kellie is not another job for them. "I've never, ever thought about it as work," says Letifa. "Looking after Kellie is fun, it's not about putting ourselves out." Noel agrees: "It's never a case of thinking 'Oh no, I have to get this over with' and although we have to plan our time quite well it's not about fitting Kellie into our working lives, it's about the love and interest in doing that sort of thing."
There's no set timescale on how long the Lynches will continue to provide respite care for Kellie, but the family see her staying in their lives for some time to come. And it's clear from talking to Kellie that she loves going to them. "When I'm there we go for walks, or colour or watch TV," she says. "Sometimes we visit Noel and Letifa's mothers and go to church or the cinema. I like visiting them. Letifa said I could have my room painted whatever colour I wanted and I chose red."
"Kellie's at a stage where she wants to do different things," adds Helen. "We're older and can't always bring ourselves down to the level that she needs, but Noel and Letifa can. For me the Adult Placement service is like a lifeline. It's something that now doesn't worry me because I know Kellie's so happy going there. She loves the Lynches so I don't feel guilty having time to myself. I know that after Kellie's been away for a weekend, I feel refreshed and ready to give her the attention she deserves."
"I think anyone with a heart to do it could be a placement provider," says Letifa. "All you need is to be loving and accepting.
"Noel and I have a passion for caring for Kellie and it's so rewarding seeing the very pure way she views life. We've been very lucky in life and it's nice to give something back. Everybody has one weekend free."
Anyone interested in joining the Adult Placement programme or finding out more about any of the services provided by Positive Futures should visit the website at www.positive-futures.net or tel: 9147 5720
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