Mum: Government is punishing my sickle cell-suffering daughter after we asked for more benefits
A mum has said that her 11-year-old daughter with a life-threatening illness has been “penalised and punished” by government officials after she requested a higher benefit payment, writes Charlie Parry.
Kathleen Max-Lino from Peckham has been told that her daughter Zoey’s Disability Living Allowance (DLA) will stop on her 14th birthday in 2022 instead of 2025, resulting in a loss of roughly £2,000.
She claims the Department for Work and Pensions (DWP) is punishing her and her daughter for requesting a mobility benefit on top of her DLA. Kathleen will now appeal the decision with supporting evidence from Zoey’s doctor.
Zoey suffers from sickle cell anaemia and anaphylaxis. It is a chronic, life-threatening blood disease which causes pain throughout the body, an increased risk of infection, tiredness and shortness of breath.
Recently her symptoms have worsened, causing her frequent episodes of pain in her back, hips and legs, making it harder for Zoey to sleep, walk, sit, and focus on school work.
The increased amount of writing since she started secondary school in September has caused pain and swelling in her hand, PE lessons also make her legs swell and she has to take painkillers regularly.
Kathleen said the application process, with supporting medical letters, was “overwhelming and very stressful”. She added: “Doing that again in 2022, with the roll out to Universal Credit, would make me more financially worse off, and I would find it very hard to cope with the caring responsibilities. My daughter’s health would suffer a great deal.”
Currently they receive the middle rate for Disability Living Allowance – £58.70 a week – but Kathleen requested that the mobility component be added so that she could care for Zoey’s increased pain, which requires constant attention day and night.
To be eligible for the £23.30 a week, applicants must prove they cannot walk, can only walk a short distance without severe discomfort, or could become very ill if they tried.
Zoey’s application in July had supporting evidence from her doctor at King’s College Hospital in Camberwell, but it was denied by the DWP at the start of December.
Its response said: “Zoey’s walking isn’t so restricted by physical disability to a point that she can be considered virtually unable to walk.”
A DWP spokesman said: “Ms Max-Lino’s daughter continues to receive DLA and we have advised that her claim will be reviewed when she is 14 to ensure she is getting the right level of support.”
He added that the original end date of February 25, 2025 was a mistake, and that “the guidance say DLA claims for children with sickle cell disease should be looked at again when they are 14 to ensure they are getting the right level of support.”
The department’s guidance on being able to walk a ‘reasonable distance for her age’ means: “more than 50m in one to two minutes – which Zoey is doing while at school between lessons.”
This isn’t the first time that the Max-Linos have had to battle with the government over their benefit payments.
In June 2018, the two of them went to Downing Street to ask the government not to transfer them on to Universal Credit, which would have made them £33 a week worse off.
They successfully handed in a petition from thousands of parents demanding that disabled children be exempt from Universal Credit.