Nicola Holmes quit work to care for her son and daughter who both have severe needs. For the former professional actor, PIP and Universal Credit have been lifelines for her family. Without them, she fears for their future
Nicola Holmes was once a professional actor and beauty therapist, but all that changed when she had to give up work to care for her beloved two children who have high care needs.
Now, while most 18 year olds are looking to enter the workforce or move away to university, Nicola, 55, says son Ethan – who is autistic, has Down’s Syndrome and severe anxiety about leaving the house – still has the mentality of a five year old and needs near-constant care.
Her daughter Ella, 15, has a PDA (pathological demand avoidance) profile, anxiety and is situationally mute.
Nicola tried to supplement her family’s income with part-time work but it proved impossible to find hours around the care she provides to her children. As a result, they rely on husband Wayne’s unpredictable income as a self-employed electrician and benefits.
READ MORE: Two DWP benefits to merge as major shake-up to welfare system confirmed
Deeply worried, Nicola, from Tewkesbury, says the changes to the welfare system announced by Liz Kendall today will plunge even more disabled families like hers into poverty and that is ‘wrong unjust and borders on criminal to penalise some of the most vulnerable people in society.’
Nicola said: “It feels like a deliberate en-masse erosion of a section of society that are the most vulnerable. This government does not respect those who are vulnerable. It is capitalist, able-ist and narrow-minded and shows no compassion
“I’d like to work but I can’t. Ethan is 18 but is like a five-year-old – he can’t get a job pushing trolleys in a supermarket because he wouldn’t be safe – he put my phone in the toaster recently! These changes are going to cause an escalation in mental health and an escalation upsurge in those needing the services of the NHS. The system that should be a safety-net is attacking those that need it.”
Nicola claims PIP (personal independence payment) for Ethan to help with the extra costs that come with caring for a high-needs child. For the Holmes’, Universal Credit is also an essential lifeline. Without these, she says her family simply won’t be able to make ends meet.
“I feel very angry that we are in a position of a Labour Government turning the screws further than could ever have imagined a Conservative Government doing. We have to claim PIP for Ethan. There is no choice,” she said.
“This goes some small way to buying the specialist foods he needs, towards the extra electric and water for his needs his disability creates, the fact that he is at home all the time using the facilities whereas another 18 year old would be out at college or work is more expensive.
“Without Universal Credit we could not keep going. Carers allowance works out at less than 50 pence an hour – I can’t top that up to the allowed government amount by going out to work because there is no significant support yet for Ethan, to do so.
“Families like mine are already in debt and struggling to pay for the basics and are trapped in impossible circumstances desperately trying to make it work. Gaslighting and bullying the most vulnerable is shortsighted, toxic and dangerous.”
The Counting the Costs survey, produced by disability charity Contact in December, found that disabled families are struggling to pay heating, 32 per cent of parents go without food and half have got into debt or borrowed cash to pay for basics.
Anna Bird, Chief Executive of disability charity Contact, said: “The cuts to disability benefits announced by the government today are worse than we feared. These significant changes will undoubtedly have a devastating impact on many of the families we support who are already experiencing poverty and struggling to pay for the basics – heating, housing, disability aids and therapies.
“The safety net for families with disabled young adults was already seriously strained and now feels like it has been ripped away. We urge the government to reconsider its plans, and ensure young disabled people receive the financial support they need to afford the basics in life.”
Stephen Kingdom, Campaign Manager for the Disabled Children’s Partnership said: “We know half of parents of disabled children have to leave jobs or reduce their hours because of lack of support from authorities who are legally obliged to provide help. Cutting universal credit for this group will drive even more families into poverty.
“Disabled young people tell us how few opportunities there are for inclusive work or training so we are extremely concerned about the removal of under 22’s access to top-ups to universal credit unless they are in work or training.”
The Holmes’ family’s monthly breakdown
IN – Wayne’s salary £1377.44 (business is operating in debt)
OUT – mortgage £800
OUT – gas and electric £300
OUT – water £80
OUT – food £600 costs rising.
OUT – council tax £160 with disabled element removed
OUT – phones and WiFi £100
OUT – clothes – mostly secondhand £50
OUT – disability specialist foods £100
OUT – disability related products (baby wipes, specialist toothpaste, shampoo, extra washing powder for continence issues, products you would not still be buying for later aged teens without disabilities) £100
OUT – specialist products for learning and interests at home £100
OUT – fuel £100
Figure does not include Wayne’s business running costs.
Total for basics £2,340
Amount family receives in benefits
Average monthly amount of Universal Credit the family receives £1545.00
Made up of…
Disabled element for two children on UC £643.69
Carers element of UC £396.62 which then carers allowance is deducted from. Amounting to approximately £350 deduction.
DLA middle rate for one child £549
Higher rate PIP for severely disabled child £434.20 with motability car element removed (Ethan uses a wheelchair when out and about)
Approximate total to be lost of Universal credit and PIP are taken away £1976.89