The cost of living with special needs

'I had to give up work to care for Thomas'

By Isabelle Kassam

Every parent wants the best for their child financially, and to put aside as much as possible to give them a secure future.

But for parents of the UK's 770,000 children with disabilities, decisions can be far tougher than simply working out how much they can afford to tuck away in a building society each month.

The Conservative leader David Cameron, who has a son with cerebral palsy, last week highlighted one of the major causes of frustration for parents of children with learning or physical disabilities - the complexity of the benefits system. And as well as negotiating the benefits maze, they may also find that they have to give up work to care for their child. Those who continue to work outside the home will probably have to fund highly skilled and thus expensive childcare.

The medical problems involved vary hugely, but in many cases special equipment will have to be purchased. Normal baby kit such as high chairs or buggies may not be suitable and, as a child grows, wheelchair ramps, stair lifts and other adaptations may be needed at home.

The cost of bringing up a disabled child is estimated by charities to be three times higher than providing for a healthy child.

"Many parents say that the best way to find out what they are entitled to is to meet other parents who have children with the same condition as theirs," says Louise Moffat of Contact a Family. "Meeting someone who is going through the same problems you or who has already manoeuvred their way through them is often a massive relief."

Contact a Family is a charity that puts parents whose children have the same disabilities in touch with each other, allowing them to set up their own informal support groups.

It also advises on benefits and tax credits that are available to disabled youngsters and their families. As Mr Cameron pointed out, each benefit or tax credit comes with its own qualification rules and its own set of forms. Parents have to work out what they might be entitled to and then make their claims as quickly as possible - many cannot be backdated.

Parents of disabled children often have lower than average incomes and higher expenditure. A Cabinet Office review last year found that 55 per cent of disabled children grow up in, or at the margins of, poverty.

Not all will be reliant on their parents for help in adulthood, but the biggest issue for parents of mentally or physically impaired children is what will happen after their own deaths.

Expecting a disabled child to be able to manage an inheritance, or relying on a sibling to care for a disabled brother or sister, is a mistake that many parents make, according to Aarti Puri, the in-house wills and trusts solicitor for the charity Mencap.

"People often think their child will be fine if they leave them a property," says Ms Puri, who puts families of learning-disabled children in touch with local solicitors to help them make a will. "But if there is no other cash, how will the child maintain the property? And if inheritance tax is due on the estate, the child may be forced to sell, which is not what the parents intended."

Carol Ellis, 42, gave up her job as a civil servant 16 years ago, after her son Thomas was born.

He suffers from unbalanced chromosome trans-locations, a genetic condition that has left him severely mentally and physically impaired.

"Although Thomas can crawl, and can appreciate coloured lights and music, he cannot communicate or look after himself in any way," Carol explains. "I went back to work when he was a baby but there were so many hospital appointments to attend. It's hard for an employer to be understanding in those circumstances."

Her husband Kevin, 45, is also a civil servant and the couple, from Bristol, have a daughter Lauren, who is 11.

"Since Thomas turned 16 he has been able to claim benefits in his own right and we are about £300 a month better off as a family," says Carol.

The Ellises are now planning to move to a new home and to build an extension so that Thomas can have his own bathroom and a sensory space where he can enjoy lights and sounds.

They are taking on a bigger mortgage and still worry about one-off expenses. For example, they had to buy Thomas a specially adapted bed, which cost around £1,000.

Financial Help: Unravelling the benefits maze: what to claim, when to claim it

The main benefit for disabled children is the Disability Living Allowance, which pays up to a maximum of £105.70 a week. It isn't means tested, but the amount a family receives depends on how much care a child needs and on their level of mobility.

Carer's Allowance is available to parents who care for a disabled child for at least 35 hours a week and earn less than £84 a week (after caring expenses). Low-income families can also apply for income support, child tax credit, housing benefit and council tax benefit.

Community care grants can help families with disabled children to buy items such as clothing or bedding.

When they turn 16, young people who are disabled can claim benefits in their own right, in addition to those received by the family. If a child is unable to handle their own affairs, the benefits will usually be paid to a parent.

Independent Partners; request a free guide on NISAs from Hargreaves Lansdown

Finacial products from our partners
Property search
Latest stories from i100
Have you tried new the Independent Digital Edition apps?
Independent Dating

By clicking 'Search' you
are agreeing to our
Terms of Use.

ES Rentals

    iJobs Job Widget
    iJobs Money & Business

    Selby Jennings: VP/SVP Credit Quant- NY- Investment Bank

    Not specified: Selby Jennings: VP/SVP Credit Quant Top tier investment bank i...

    Selby Jennings: Quantitative Research | Equity | New York

    Not specified: Selby Jennings: Quantitative Research | Global Equity | New Yor...

    Selby Jennings: SVP Model Validation

    Not specified: Selby Jennings: SVP Model Validation This top tiered investment...

    Selby Jennings: Oil Operations

    Highly Competitive: Selby Jennings: Our client, a leading European Oil trading...

    Day In a Page

    Aren’t you glad you didn’t say that? The worst wince-and-look-away quotes of the year

    Aren’t you glad you didn’t say that?

    The worst wince-and-look-away quotes of the year
    Hollande's vanity project is on a high-speed track to the middle of nowhere

    Vanity project on a high-speed track to nowhere

    France’s TGV network has become mired in controversy
    Sports Quiz of the Year

    Sports Quiz of the Year

    So, how closely were you paying attention during 2014?
    Alexander Armstrong on insulting Mary Berry, his love of 'Bargain Hunt', and life as a llama farmer

    Alexander Armstrong on insulting Mary Berry and his love of 'Bargain Hunt'

    From Armstrong and Miller to Pointless
    Sanchez helps Gunners hold on after Giroud's moment of madness

    Sanchez helps Gunners hold on

    Olivier Giroud's moment of madness nearly costs them
    A Christmas without hope: Fears grow in Gaza that the conflict with Israel will soon reignite

    Christmas without hope

    Gaza fears grow that conflict with Israel will soon reignite
    After 150 years, you can finally visit the grisliest museum in the country

    The 'Black Museum'

    After 150 years, you can finally visit Britain's grisliest museum
    No ho-ho-hos with Nick Frost's badass Santa

    No ho-ho-hos with Nick Frost's badass Santa

    Doctor Who Christmas Special TV review
    Chilly Christmas: Swimmers take festive dip for charity

    Chilly Christmas

    Swimmers dive into freezing British waters for charity
    Veterans' hostel 'overwhelmed by kindness' for festive dinner

    Homeless Veterans appeal

    In 2010, Sgt Gary Jamieson stepped on an IED in Afghanistan and lost his legs and an arm. He reveals what, and who, helped him to make a remarkable recovery
    Isis in Iraq: Yazidi girls killing themselves to escape rape and imprisonment by militants

    'Jilan killed herself in the bathroom. She cut her wrists and hanged herself'

    Yazidi girls killing themselves to escape rape and imprisonment
    Ed Balls interview: 'If I think about the deficit when I'm playing the piano, it all goes wrong'

    Ed Balls interview

    'If I think about the deficit when I'm playing the piano, it all goes wrong'
    He's behind you, dude!

    US stars in UK panto

    From David Hasselhoff to Jerry Hall
    Grace Dent's Christmas Quiz: What are you – a festive curmudgeon or top of the tree?

    Grace Dent's Christmas Quiz

    What are you – a festive curmudgeon or top of the tree?
    Nasa planning to build cloud cities in airships above Venus

    Nasa planning to build cloud cities in airships above Venus

    Planet’s surface is inhospitable to humans but 30 miles above it is almost perfect