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."
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.”
Smart Data Transformation – Surfing the Big Wave
02.12.2016 | Fraunhofer-Institut für Angewandte Informationstechnik FIT
Climate change could outpace EPA Lake Champlain protections
18.11.2016 | University of Vermont
A multi-institutional research collaboration has created a novel approach for fabricating three-dimensional micro-optics through the shape-defined formation of porous silicon (PSi), with broad impacts in integrated optoelectronics, imaging, and photovoltaics.
Working with colleagues at Stanford and The Dow Chemical Company, researchers at the University of Illinois at Urbana-Champaign fabricated 3-D birefringent...
In experiments with magnetic atoms conducted at extremely low temperatures, scientists have demonstrated a unique phase of matter: The atoms form a new type of quantum liquid or quantum droplet state. These so called quantum droplets may preserve their form in absence of external confinement because of quantum effects. The joint team of experimental physicists from Innsbruck and theoretical physicists from Hannover report on their findings in the journal Physical Review X.
“Our Quantum droplets are in the gas phase but they still drop like a rock,” explains experimental physicist Francesca Ferlaino when talking about the...
The Max Planck Institute for Physics (MPP) is opening up a new research field. A workshop from November 21 - 22, 2016 will mark the start of activities for an innovative axion experiment. Axions are still only purely hypothetical particles. Their detection could solve two fundamental problems in particle physics: What dark matter consists of and why it has not yet been possible to directly observe a CP violation for the strong interaction.
The “MADMAX” project is the MPP’s commitment to axion research. Axions are so far only a theoretical prediction and are difficult to detect: on the one hand,...
Broadband rotational spectroscopy unravels structural reshaping of isolated molecules in the gas phase to accommodate water
In two recent publications in the Journal of Chemical Physics and in the Journal of Physical Chemistry Letters, researchers around Melanie Schnell from the Max...
The efficiency of power electronic systems is not solely dependent on electrical efficiency but also on weight, for example, in mobile systems. When the weight of relevant components and devices in airplanes, for instance, is reduced, fuel savings can be achieved and correspondingly greenhouse gas emissions decreased. New materials and components based on gallium nitride (GaN) can help to reduce weight and increase the efficiency. With these new materials, power electronic switches can be operated at higher switching frequency, resulting in higher power density and lower material costs.
Researchers at the Fraunhofer Institute for Solar Energy Systems ISE together with partners have investigated how these materials can be used to make power...
16.11.2016 | Event News
01.11.2016 | Event News
14.10.2016 | Event News
02.12.2016 | Medical Engineering
02.12.2016 | Agricultural and Forestry Science
02.12.2016 | Physics and Astronomy