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."