Some households with disabled children may be finding the current climate even harder as they may not have received a cost of living support payment as they were not claiming the qualifying benefit at the time. Children in England who have a medical condition or disability may be able to claim a benefit called Disability Living Allowance for children from the Department for Work and Pensions (DWP).
However, Contact, a charity for families with disabled children, say that “too many” families are missing out on claiming extra money to help with costs.
According to a survey conducted by the charity in 2021, out of 3,000 families with disabled children 88 percent said the system of claiming benefits was “too difficult” and “too complex”.
A further two-thirds said that they “didn’t trust” the benefits system and the same amount said they would need help to check if they were receiving the right benefits.
Laura Goldie from East Kilbride claims Disability Living Allowance for her six-year-old son who has a rare medical condition known as adrenal insufficiency, has a number of sensory difficulties and is currently getting confirmation as to whether he has Autism spectrum disorder (ASD).
She began claiming soon after her son was born and the care team at the hospital helped get the ball rolling with the application process however subsequent claims for the benefit have been “incredibly hard” and “stressful’ processes.
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She said: “Doing the form at the hospital meant that we had direct contact with consultants and because they’ve done it before they knew exactly how what they were doing, how to read the questions, but also think outside the questions, and then how to answer them correctly.
“I think that was why I was successful in claiming it the first time.”
Laura explained that the money she received through Disability Living Allowance helped her a lot and “made up” for some of the income she had lost due to giving up her job to care for her son.
She explained that she had struggled and felt like the wording and phrasing of the questions were sometimes “difficult to understand” and were “quite complicated and confusing” at times.
Laura feels like some of the questions don’t always exactly what it is asking and people needed to go a bit deeper and more thorough with their answers in order to make sure they had answered the question correctly.
She added: “One of the questions the form asks is, ‘Do they require help with bodily functions’ and to me that means toileting.
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Laura’s second claim for Disability Living Allowance was rejected due to a lack of knowledge about her son’s condition and with help from Contact upon appeal, it was acknowledged that there were failings and the case was rectified.
However, Laura is due to renew her claim again and she is “worried “about it however this time she is receiving support with her application from Contact.
She said: “It’s just not an easy process at all and I’ve done it a few times now and I’m still nervous about it.
“My advice to anyone having to go through it is to not do it on your own and if you are going to go to someone like Citizens Advice then ask for someone who has experience with Disability Living Allowance or PIP applications because you really need someone who understands the scope of the questions 100 percent.”
Laura also recommends people check out the Disability Living Allowance guide which has been created by the charity Cerebra. This step-by-step guide takes people through all the questions on the form, explaining what each one means and giving tips on how to answer.
She added: “There is a lot you could change to make it simpler and easier for parents, it does need something done because it is a relentless process.”
According to figures from the DWP, in November 2021 there were 579,793 children under 16 currently claiming DLA.
However, Contact said as there were more than one million disabled children in the UK the take-up of the benefit could be much higher.
Una Summerson, head of policy at disability charity Contact, said: “Parents tell us that the process of applying for Disability Living Allowance can be overwhelming and complicated without specialist support from places like Contact.
“The form is very focused on the negative, stressing all the things a child can’t do. This can be distressing for a family, especially when applying for the first time.
“Our Counting the Costs research found that the majority of parents of disabled children think the benefits system is too complex and is not trustworthy. Sadly the system is seen as hostile, discouraging people who need and are entitled to financial support.
“The Department for Work and Pensions could do a lot more to improve the take up of Disability Living Allowance, and make the system less complicated and more compassionate.”
A DWP spokesperson said: “We support millions of people every year and our priority is they get the benefits to which they are entitled as soon as possible, and to ensure they receive a supportive and compassionate service.
“We have already delivered several improvements to our disability benefit services since 2018, including the customer journey, our communications, the assessments and our decision making.
“We are also exploring how the welfare system can better meet the needs of disabled people through our Health and Disability White Paper which will be published in the coming months.”
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