“It’s not a choice, but I love my daughter unconditionally,” says Sharon Aherne, who cares for her 22-year-old daughter Chelsea, who has profound and multiple learning disabilities (PMLD). This is a common feeling among family carers of people with a learning disability – usually their parents
Parents’ Week, which will take place from 17 to 23 October, raises awareness of the issues that parents face. For those bringing up a son or daughter with a learning disability, these issues are often more complex.
“Families are under a lot of pressure,” says Lucy Virgo, Mencap’s families and communities project manager. “At the moment, because [the learning disability strategy] Valuing People Now has ended, I think they feel they have less of a voice.
“And there’s concern over what the future will hold. The impact of the cuts is starting to be felt, and as services are cut, many family carers are taking up the slack. It’s incredibly difficult, because I think Carer’s Allowance doesn’t really cover their needs.”
As well as dealing with the financial strains, families also have to grapple with the new system of personalisation, which can be implemented differently in different areas. Plus, there are changes to benefits like Disability Living Allowance to deal with.
“And families are concerned about what happened at Winterbourne View,” says Lucy. “They’ll feel less secure about using external support.”
As well as these current problems, there are also challenges that carers have faced for generations. These include getting the right information at diagnosis and securing a special educational needs (SEN) statement and the right support. Then there are issues around housing and finding the right home.
“For a lot of families, the biggest concern is that movement from childhood to adulthood,” Lucy explains, “because often they get a certain level of support during childhood, then they leave school or college and there is a bit of a black hole.”
These stresses can have a detrimental effect on the health of family carers and their other relationships. And for families from black and minority ethnic communities, there are also issues around language and cultural clashes.
“Caring can completely change the relationship that you have with your son or daughter,” concludes Lucy. “However, I think any carer would say: ‘I love my son or daughter and I love the moments that we have together’.”
“Everything is different – the house, the people, the talking”
Sigita Rencyte, 37, lives in Sheffield with her husband, Mohamed, and their children – Kamelija, seven, who has Down’s syndrome, Karima, three, and Karolis, 12. They moved to England two years ago because of Mohamed’s job.
“Kamelija was born in Lithuania,” says Sigita. “In the first year, I dropped my job, to make things easy for her – I am a nurse.
“In Lithuania, they inform you about the situation, but there is not so much support from the government or doctors. I relied on what I knew from my job and reading books.
“When we came to England, we had to find everything – information, jobs, schools, doctors. I found websites for organisations like the Sheffield Parents Partnership, which was really helpful.”
Finding a school for Kamelija was fairly easy. She attends a local mainstream school, but has separate classes. “She is happy now, but not at first. The first weeks, even months, it was horrible. She was screaming and crying. She couldn’t understand one word of English.
“Everything is different – the house, the people, the talking. So for her, it was a really horrible time. It was really hard. But now she has friends and she understands English and has started to speak – it’s amazing. She likes study – everything is interesting to her. She is always asking to do her homework – even in vacation time. No one can believe she could do this.”
This achievement prompted Kamelija’s teacher to nominate her for the 2011 Sheffield Young Person of the Year Award, which she won. She was presented with a trophy at an awards ceremony in July.
While Kamelija has settled in, things can be difficult for Sigita. “Because I have no family here, it’s difficult to have time for myself. I would like to work, because I was working for many years. With three kids, it’s hard for anyone to manage a job and family life,” she says.
She hopes that in the future, she may be able to work again – if she can find suitable help for Kamelija. “We tried a play group, but she didn’t like it. She doesn’t like to be separated from her brother and sister – she feels more confident with them. And she doesn’t have very good orientation in unknown places.
“We tried to explain that to Sheffield City Council and asked for a personal assistant. We asked for seven hours, but they gave us four – no explanations. Four hours per week is nothing. But Carer’s Allowance is really helpful, because we can use it for things that we want to.”
Although there have been many adjustments to make, Sigita is happy. “I like looking after the children,” she finishes. “And we are feeling settled in Sheffield now.”