When Trudi and Gavin Scott moved back to the UK from New Zealand with their severely disabled son, Theo, in December 2016, it was the start of a “horrendous” few years of financial struggle triggered by the family being refused disability living allowance.
At one point, when Gavin had to give up work to look after Theo while Trudi was recovering from a major operation, they had to scrape by on child benefit, tax credit cash and food bank vouchers, causing them to fall behind with bills.
But in October 2020, in a case brought by the Child Poverty Action Group (CPAG) – one of the Guardian and Observer’s 2020 appeal charities – they and another family successfully challenged the lawfulness of the DLA eligibility rules.
“Four years of fighting just to get something for my son, who is a child and is disabled … I can’t tell you the stress and the strain,” said Trudi Scott, 50. She and Gavin, who is a prison officer, live just outside Norwich.
“We’re British parents, which makes him British. We worked here for all the years before we left for New Zealand [in 2005], we’ve paid into the tax system, we’ve never claimed benefits except child benefit, and my husband has fought for his country [in the Falklands] and is a key worker,” she said, adding: “DLA is a passport for other help … If you haven’t got the DLA, it doesn’t entitle you to any of the other help you can get.”
Theo, who is now 12, has Down’s syndrome, a rare bladder dysfunction and other conditions including autism.
An upper tribunal decision found that the rules relating to how long people have to be in the UK before being eligible to claim DLA had breached Theo’s human rights. As a result, the family is entitled to £22,910 (the DLA money he lost out on, plus the disabled child element of child tax credits and carer’s allowance), which they would spend on modifications to the house to help Theo. However, it is far from certain whether they will ever receive this money, as the government could yet appeal against the decision.
“It’s [about] fighting the government, and who’s bigger than the government?” said Trudi. “For us, it’s not about the money … we don’t want other families to suffer the way we did.”
The Scott’s case is just one of the most recent in a long line of successful legal actions the CPAG has mounted against unlawful or unjust social security decisions.
In 2016 it won a “bedroom tax” case at the supreme court, meaning families with disabled children who needed overnight care would no longer be penalised. More recently, CPAG has achieved legal victories on everything from universal credit to the payments made to a family when the mother or father dies.
Kevin Simpson, 41, an engineer who lives in Chester, lost out on a “life-changing” bereavement benefits payout – a lump sum of £3,500, plus £350 a month for 18 months – purely because he and his late partner, Debbie, who died of breast cancer in 2018, were not married (they were engaged but then “events took over”).
CPAG took up his case, and that of another widower, arguing that restricting higher-rate bereavement support payment (BSP) to spouses was incompatible with human rights law and discriminated against children of unmarried parents. In February 2020 the high court ruled in their favour.
Asked about how they had been managing financially over the past few months, Simpson said: “You do what you can do – you carry on. It’s all you can do … I’ve tried to do this for my kids, and for the next person this is going to happen to.”
It is estimated that each year, about 2,000 families with children lose out on payments worth up to £9,800. It is possible Simpson could yet receive the money his family missed out on. After the verdict, the government said it would bring forward a remedial order to extend BSP to cohabitees with children. But this has not happened yet, and it is not known whether it will be applied retrospectively in full.
CPAG also represented Sharon Pantellerisco, who in July 2020 won a high court victory against the Department for Work and Pensions after she was benefit-capped and left up to £463 a month worse off because of the way universal credit calculated her monthly earnings (the government has since been given permission to appeal the ruling).
Pantellerisco, a 41-year-old care worker and single mother-of-four from Southport, Merseyside, was penalised purely because her employer paid her every four weeks rather than monthly.
“It was so, so hard financially [and] it was affecting my children as well. I couldn’t even go out and buy them any clothes or shoes, I couldn’t take them out or treat them – the general stuff you do as a family,” she said. She was forced to rely on food banks, while her children’s school helped with uniforms.CPAG picks its legal battles carefully, focusing on strategic public interest cases. Carla Clarke, its solicitor, said that since autumn 2016 the charity had taken on 15 cases. Of those, it has won nine and lost three, with the remaining on appeal.
Clarke said: “You can get so far with policy work and campaigns work. This is about using the law to hold government bodies legally accountable for ensuring that the rights of children to a decent standard of living are recognised.”
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