Mums like Heidi Need a BREAK; EXCLUSIVE as Government Unveils Pounds 340m to Help Parents and Disabled Children, We Reveal Exactly Why
Byline: By BETH NEIL
FOR years, single mum-ofthree Heidi Herdman has coped single-handedly with raising a disabled child.
Her wheelchair-bound daughter Saskia suffers from the severe chromosomal abnormality Edward's syndrome. She has no speech, is fed through a tube and is permanently catheterised.
Ninety per cent of children with Edward's syndrome don't survive past the first year. Saskia, now 15, is the oldest child in the UK with the condition.
But some relief came Heidi's way yesterday when the government announced a pounds 340million package to help families with disabled children.
The funding will help develop childcare, provide up to 40,000 short breaks and more advisory services.
The Daily Mirror-backed Every Disabled Child Matters campaign has been lobbying hard to get the best from this review and campaigners hailed the package as a "huge step forward" which will improve the lives of 700,000 disabled children and their carers.
To highlight the daily struggle faced by parents with disabled children, Heidi, 48, from Bucks, takes us through a typical 24 hours...
GET up and shower before my help from social services arrives at 7am. Every morning a carer comes in for 45 minutes and helps me get Saskia washed, dressed, tube-fed and into her wheelchair.
I've had to battle to get this much help. As a single parent, it was too much doing it all on my own and making sure that my other, able-bodied daughter, Ellie, 13, was ready for school, too. I also have a son Scott, 18, who's at university.
THE school bus arrives to pick Saskia up. She goes to Heritage House, which is a special school. It's a life-saver and allows me to get on with work during the day.
I work freelance for a music management company and I also do corporate hospitality at Chelsea FC.
The paperwork for claiming benefits is so complicated. I get an invalidity care allowance of pounds 48 per week but you're only allowed to earn so much. You fill in the form once a year so they can check if your circumstances have changed. Mine had - my husband and I had split up. But there wasn't anywhere on the form to say that I'm now a single parent.
I lost pounds 8,000 in benefits because of that. I was able to reclaim just pounds 400 because they only backdate it for up to two months.
In an ideal world, every time a disabled child is born into a family they'd be assigned a benefits officer to help them claim. At the minute, you get different information from everyone you speak to.
THE builders arrive. We're getting the house adapted for Saskia.
We're building a bedroom and bathroom downstairs, which will make things a lot easier.
I've had to have physio on my shoulder after a car crash and lifting Saskia on my own is too painful. She weighs over six stone now.
On a weekend when both girls are with me all day, we try to spend time as a family. I've always made sure my two ablebodied children have grown up without a negative view of disability. If we want to do something - go to the cinema, go bowling - we do it as a family. …