A study carried out by researchers at the Peninsula Medical School and the Institute of Child Health (UCL) has revealed that families from an ethnic, non-English speaking background with a child with Down’s syndrome do worse from the Disability Living Allowance (DLA) system than families facing the same issues who come from a white, English-speaking background.
The research team surveyed the parents of 138 children with Down’s syndrome, aged two years or less, from across the UK who were taking part in a trial of vitamin supplements.
The study revealed that 69 per cent of ethnic minority parents were granted the DLA, compared with 96 per cent of white parents. The survey also showed that 67 per cent of parents with English as a second language received the DLA, compared with 93 per cent of parents for whom English is their first language.
As well as significantly reducing their chances of receiving the DLA, ethnic minority families were also shown to be less likely to be granted a higher monetary award.
The research also noted that severity of disability, such as the presence of cardiac disease or developmental delay, bore no relation to the application, granting or level of the DLA award.
Although all children with Down’s syndrome meet the criteria of the DLA, only 80 per cent were receiving the benefit – this despite the fact that almost all young children with Down’s syndrome require extra help due to global development delay, speech delay and associated health problems, including 40 per cent of children with the condition who have congenital heart defects.
Professor Stuart Logan, Professor of Paediatric Epidemiology and Director of the Institute of Health Service Research at the Peninsula Medical School, commented: “It seems frankly extraordinary given the extra needs they have that any child with Down’s syndrome should be refused disability living allowance. To find that it is ethnic background and first language that predict the likelihood of getting this benefit rather than severity is a real indictment of this complex system.”
He added: “There needs to be more support from practitioners caring for disabled children with regard to making parents aware of their entitlement and how to complete the DLA forms and routine monitoring of the uptake of the DLA related to ethnicity and the first language spoken by the Department of Work and Pensions.”
Caroline Boys, Chief Executive of the Down’s Syndrome Association, commented: "DLA should be based solely upon the needs of the child; it is unacceptable that any other criteria should affect the likelihood of receiving it, whether intentionally or not. It is appalling that so many families are going without the extra financial help that they are entitled to. DLA forms are notoriously difficult to complete, and this research suggests that the system needs to be simplified in order to make sure that assessment is fair."
More information is available by logging on at www.pms.ac.uk and at www.downs-syndrome.org.uk .
CASE STUDY
The Chans from Exeter, Devon, are one of the families who took part in the Peninsula Medical School study.
Martin and Charlotte Chan are the parents of five-year old Matthew. When he was born he had a number of initial medical problems, including bowel surgery and the need for medication, which he still takes.
The family was daunted by the DLA forms, and from word go took the advice of experts from Honeylands (an Exeter-based support organisation for people with disability) to help them complete the paperwork.
Said Charlotte of the family’s experience of the DLA: “Stress or what? Looking back as new parents, I’m sure we were still traumatised by the whole event. We knew coming to terms with Matthew’s disabilities would be a gradual acceptance, over a number of years. We felt it would be an injustice to Matthew if we didn’t complete the form satisfactorily and in a way that reflected his needs according to his disabilities. Distinctly, we became aware we didn’t know how his medical condition would impact on his other needs. Truly, we didn’t feel competent to answer some of the questions on the form in depth, as we were not professionals.
“Even then, we realised there was enough information held on our son already, to answer all the questions, in the form of medical reports. There appeared to be a duplication of effort.
“I don’t know what we would have done without Honeylands’ help.”
Matthew is doing very well and attends Pinhoe Church of England Primary School in Exeter, a mainstream school where he is supported by a full-time teaching assistant. According to Mum Charlotte, his speech and language are good for a child with Down syndrome, and his hearing and sight are good too.
What would her advice be to parents faced with the DLA for the first time? “In the best interest of your child and as parents in the early years, at least, seek expert support and opinion from those who know.”
Journal
Archives of Disease in Childhood