By Yasmeen Akram, Chris Hatton, Robina Shah, Eric Emerson, Janet Robertson
Social employees and allied pros will locate this booklet to be a beneficial software, highlighting methods of bettering the cultural sensitivity of incapacity providers and parental and relations help. Combining a wide-ranging survey and in-depth interviews, the authors construct a wealthy photo of the lives of South Asian households with a toddler with critical disabilities and position their stories within the wider context of ways tradition and ethnicity can impression on a family's event of incapacity. The authors provide transparent rules for useful advancements in: *awareness and mobilisation of formal help companies *parental and reputation of the kid's incapacity *availability of help teams and different casual aid *parents' actual and psychological wellbeing and fitness *the baby and family's social lifestyles linking their findings to fresh coverage projects to enhance the knowledge and aid provided to all carers. coverage makers, lecturers and practitioners in well-being, social paintings and schooling will locate the authors supply a useful perception into the cultural, non secular and language wishes of ethnic minority households dealing with incapacity.
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Additional resources for Supporting South Asian Families With a Child With Severe Disabilities
Example text
Jabir They did not tell us [about the child’s disability]. When she was 5 years old they started to pay us benefit. When she was 5 they said ‘She may walk. She may not walk’. We were not happy because she is dependent. She cannot feed herself, cannot walk or speak. She is dependent on us for everything. Seema She was about 3 or 4 years old. We didn’t know we could claim. Someone came from the pre-school unit, they told us to claim. Azra When received, benefits are an invaluable source of financial support to families, with parents seeing benefit income very much as belonging to the child.
My husband was very easy-going about it. It was sort of ‘Oh well, he’s here now’, no feelings, no emotions. ’ And I had so many years of anger packed up and regret of having this child, then basically it’s been very very difficult. Shahina And he’d [husband] been away. And he said to me ‘You weren’t looking after yourself and that’s why this has happened’. And he made me believe it and then my mum started saying it to me… I actually remember we went to the geneticist and I actually asked her to put it on paper that it wasn’t my fault… It really had a bad effect on me and I went through that for about two years, three years even.
So if you want to go and find out how other people with Down’s are developing and getting on, here’s the file’… As far as I was concerned I rejected him. I denied he was my baby, because I was just expecting a perfectly healthy baby. Shahina INFORMATION / 57 They should give emotional support and information on the services available, instead of carers trying to endlessly search and find out about services over a long time. Akram Parents also reported that being told without their partner present was distressing, and could lead to differences in understanding and acceptance between parents.