Disabled single mum left £500 a month worse off thanks to benefit cuts
Disabled single mum left £500 a month worse off thanks to benefit cuts
Hannah Leonard, who has achondroplasia, a bone growth disorder which causes dwarfism, said she lost working family tax credits and disability tax credits, worth around £500 a month combined under recent benefits changes
Hannah Leonard from Rhyl with her six-year-old daughter Darcey
(Image: Family Fund )
A disabled working single mother of a disabled child says she feels "penalised for being responsible" as a carer for her daughter with additional needs.
Hannah Leonard from Rhyl, mum to daughter Darcey, aged six, said she's been left £500 a month worse off under planned recent benefits reforms. She said it is "not right" that extra help is provided by the state based not only on household income, but also how many people earn that income. She said if her salary working 30-hours a week as a social care practitioner for Denbighshire Council was earned by her and a partner they would be eligible for more benefits via Universal Credit than she is as a single person.
Hannah, 41, who has achondroplasia, a bone growth disorder which causes dwarfism, said she has lost out on working family tax credits and disability tax credits, worth around £500 a month combined under recent benefits changes. Sign up for our free daily briefing on the biggest issues facing the nation sign up to the Wales Matters newsletter here.
Hannah says she is in constant joint pain due to her condition, cannot walk far and is worried that Darcey, who does not have the condition, will soon be taller than her and harder to care for.
Darcey is autistic, non-verbal, has epilepsy and dysphasia, which affects her swallowing and speech. She communicates through an iPad and attends a local mainstream school with one-to one support. She can walk and run but falls over a lot, said mum Hannah.
Darcey, six, loves having swimming lessons and attends a mainstream school with one-to-one support
'It is still a constant struggle because my job is very intense, so by Friday I'm normally just shattered and trying to complete life admin, which there is never enough time for," she said.
"My daughter needs constant watching because she climbs. She's always trying to get into something so we're always just on high alert. We're never getting that rest. We're never getting time to breathe.
'I have to consider that as I'm getting older my joints and everything are just getting that bit stiffer. I'm having to deal with my disability as well. So it's just finding that balance of rest and life admin and having to get life done basically.
'My mum's in her late 60s. I'm a single disabled parent, and my daughter's only getting stronger, faster and taller. Not only do I think we need (outside support) for ourselves, but she needs it. We're her safe space but she needs to go and be with other people in the outside world, not rely on us. I think she needs to learn to communicate with other people.'
'When Darcey first started going to the after-school club, I was literally in panic mode. It's not just her autism, she's epileptic as well. Although, touchwood, we've not had a seizure in a very long time, there's always that heightened anxiety. Even if she was a neurotypical child, you'd still panic.
"Someone else looking after your child with additional needs is a scary prospect but sometimes it's needed. I am very careful with my money, but it's not only the general costs of living that are increasing, obviously I have to pay for her extra therapy."
Darcey receives no regular NHS therapy so Hannah pays £100 a month for two private half hour speech and language sessions for her daughter, as well as £100 for swimming lessons. She says these are essential life skills and not luxuries for her daughter. Darcey is also about to start extra therapy in Liverpool which will add £60 a month in petrol costs.
"Things can be a bit tight," admitted Hannah. "I've never not had any money but you know, the constant buying of sensory equipment for her. It's a costly game.
As a disabled single mum who has twice been made redundant, Hannah said she needs to keep some savings for emergencies like repairs and any other unforeseen problems. But the cut-off point for extra benefits is £14,000 in savings, a cut-off amount which Hannah feels should be raised.
"I'm not willing to let that money go because as a single parent I feel that money needs to stay there to support us if anything goes wrong," she said. "It feels like everything is a battle and still you are penalised. I feel penalised for being responsible.
"I am always fighting for things. As a parent of a special educational needs child my anxiety levels are high. Darcey can run like Usain Bolt but falls over. We don't know why but she has bad a balance.
"People's individual situations have to be looked at in the benefits system. If I had a partner and the two of us earned my salary between us we would get more help. I could give up my job and live off the state, but I am being responsible."
Hannah is also worried that things will get harder, not easier, in the future. She was speaking as a report out on Monday (June 2) from national charity Family Fund says families raising disabled or seriously ill children and young people across the UK are being driven further into debt.
The report warns they are unable to meet vital extra caring costs including specialist equipment, utilities, medical appointment travel, food and increased wear and tear on their homes.
The Cost of Caring 2025 report includes 145 responses from Wales among 2,300 UK families on low incomes raising disabled and seriously ill children, with 41% of them being lone parent carers.
The charity says benefits are not keeping up with the rising cost of living, with 44% of families raising a disabled child unable to meet day-to-day living costs despite receiving disability benefits. The charity adds that 87% of parents and carers have no savings at all and therefore can't replace or repair essential items when they break.
Hannah has had to cut down from full-time work to four days a week because of caring responsibilities and appointments for Darcey. Family Fund says its research shows that only 7% of parent carers say they're able to work as much as they would like to as a direct result of caring responsibilities.
Hannah has had help from Family Fund who provided her daughter with an iPad to help her communicate. "My daughter will reach her milestones in her own time," said Hannah. "She might never talk, but what I wasn't willing to do is not have for her the means of communication.
"Just because she doesn't have a voice does not mean she doesn't understand. As they say, love needs no words. She shows us every day that she loves us and we just have a different life. We just do it a different way. She's a bright little girl who deserves the world and we're just fighting for her to get that.'
Family Fund gave over 200,000 grants and "instances of support" to families in 2024/2025 compared to 150,000 last year. Its chief execurive Cheryl Ward said: 'This report highlights stark findings, with no improvement since our 2022 surveys. As caring costs increase for families, barriers to paid work as a route out of poverty remain unchanged, including a lack of suitable childcare.
'Until these challenges are addressed, families raising disabled and seriously ill children can't escape the cycle of living in debt, going without essentials like food, clothing and furniture and experiencing poor mental health. '
Family Fund's survey was answered by 145 families in Wales caring after a disabled child, or children, including Hannah. Others described anonymously the battles they face daily.
These are some of the other responses to the survey from families in Wales:
'The household support fund isn't open yet to apply for any support. I keep desperately checking. (My son) has lots of medical equipment and struggles regulating his temperature- this time of year is the worst for us. He has a feed tube that needs charging daily, a through-floor lift hoists, bed and bath seat all electric.'
'I am mentally depressed and tired physically from caring for my two disabled children. I can't concentrate or do any work. I have enough work to do regarding their appointments and forms to do and referrals and medication.'
'[We] need childcare that supports and caters to children with SEN. Childminders usually don't want to take on any children with additional needs.'
'I have four disabled children and two of them need help with every single thing daily. I have no sleep and no chance of working.'
'My son chews his clothes and ruins them quickly, so we are constantly replacing everything from pyjamas to tops to coats.'
'They are all incontinent so I'm replacing all the duvets, bedding and actual beds regularly. Between that and keeping them well fed and clothed (they chew their clothes daily) so I am constantly replacing these. My washers and dryers are always breaking down as I literally do 3/4 loads of washing every day.'
'My son is home schooled due to his needs and anxiety. It's such a financial burden to have him home 24 hours a day with all essential bills.' .
The Department for Work and Pensions has said it will protect people "who need our support", and that proposed benefit reforms "will mean the social security system will always be there for those who will never be able to work".
Five big changes to the welfare system have been announced by the Department for Work and Pensions as the government unveils plans for £6b of benefit cuts. Reforms include stricter eligibility tests for Personal Independence Payments (PIP), payment freezes, and changes to Universal Credit calculations.
There will be stricter eligibility tests for PIP. The DWP hopes to save £5b making getting this disability benefit harder. Another part of the plans are payment freezes, with benefits not increasing to match the rate of consumer price index (CPI) inflation.
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There will also be new employment programmes to help more people get into work.. The he plans have prompted concerns from some disability charities as some of the reforms impact disabled people.
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