Thousands of Disabled Children in Poverty in Leeds
A Leeds mum whose 10-year-old son was born with brain damage says it is 'frustrating and unfair' that the cost of bringing up a child with disabilities is three times greater than bringing up one without.
New research reveals nearly 40 per cent of the 11,000 disabled children in Leeds are currently living in poverty.
Linsay Medica's son Jack is unable to sit, stand, talk, or see properly. He has to be fed by a tube, and has uncontrolled epilepsy meaning he has up to 40 seizures in a 24 hour period.
The single parent was forced to give up her job to become his fulltime carer, and re-mortgaged her house to pay for the adaptations needed to make it wheelchair-friendly.
"You're forced into a situation where you're on benefits and being reliant on them, and its not a choice you make easily but your child comes first," she says.
"These are things you need to do, you don't have many options in this.
"I do think it's really unfair. You've always got that thought hanging over you about how you're going to make ends meet next month. And if you're child's going to need something extra that you've not bargained for, how are you going to afford that?
"For you to take a normal child swimming might cost £5 or £6. To take a disabled child swimming in a hydro pool, it's actually about £60. It's not a big thing to ask just for a child to go swimming.
"Adapting houses, specialist equipment, cars, even just the everyday costs of additional washing and clothing. The toys, lighting, everything - they're not things that we choose to buy for pleasure."
The research by the Papworth Trust also found more than two thirds of families with disabled children have difficulty accessing the local services they need, and 90 per cent are worried about cuts to those services.
Linsay set up Leeds-based support group Little Hiccups in 2006 to help other parents and carers with disabled children. It gives parents a chance to meet others in the same situation while the children have a safe space to play.
"Years ago when Jack was small we would have much more physiotherapy input," Linsay says.
"That's just not there anymore. They were my lifeline back then, whereas these days you don't have that as much. So it is for people like us in the third sector to be there for those families and pick them up when they need it.
"When I had Jack it was like someone pulling back a curtain on a whole community I didn't realise were truly there. I don't think anybody who hasn't walked this path can have any idea what it's like to have somebody so precious to you and watch them go through the things that they have to go through, and to be completely helpless in that."