Inflexible system is causing parents misery; Couple are 'wasting money' on 'unnecessary' home adaptations.
THE parents of a severely disabled child say they are battling an "inflexible" system that means they are being asked to carrying out unnecessary adaptations to their home.
Andrew and Sharon Wallace have fought for four years to extend their house, in Coquet Terrace, Heaton, Newcastle, to make it suitable for their daughter, Aoife.
The five-year-old, who has spastic quadriplegic cerebral palsy, is unable to move any of her limbs and requires round the clock attention. They desperately need to install certain alterations to make it easier to care for her.
Despite receiving a disability facility grant of pounds 30,000 from Newcastle City Council, the family are being forced to find an extra pounds 10,000 to cover the full costs of the build.
Alterations include creating a bedroom and en-suite over the garage, for ceiling tracking and a portable ramp.
But the family are arguing that at present some of the adaptations are unnecessary and they would prefer to delay some of the installations to save some cash.
Computer analyst Andrew said: "The main problem is getting Aoife up and down the stairs and bathing her, we have to think of the damage we are doing our backs by carrying her around.
"We know the grant is capped at pounds 30,000 and we understand the rules but we want to minimise any extra costs.
"The biggest priority for us is getting the work done and also being sure we do not spend too much money with all the accompanying stresses that would bring.
"Twelve months ago we spoke to the council who assured us we would be able to reduce the costs by pounds 3,000 by not installing the full ceiling tracking and ramp in the first instance, since they are not priorities. It was important because the council will not release the grant money to pay our builder until they are happy that everything has been completed as per their specification."
Mr Wallace lives with his wife Sharon, 38, a teacher, Erin, seven, Aoife and two-year-old Malachy. He said: "Last week I contacted the council again to confirm that some of the adaptations could be removed from the specification.
"But they have not responded other than to send a letter with an indirect threat making sure we complete all works to the specification.
"They are insisting we get a fully disabled bathroom installed, but Aoife will never use a sink because of her disabilities. They are being so inflexible about it, which is such a waste of money. "It is a difficult situation and having a very disabled child is not easy. We have to be careful with our money, besides we have two other children as well. It is very frustrating. We are left in the position where we do not know whether or not we will be required to stump up the extra cash. Our assumption is that the council are making a judgement based on our middle-class occupations."
A Newcastle City Council spokesman said: "We want Aoife and her family to have all the help and support that is essential to meeting her needs and which her family have told us will help them.
This process has taken longer than any of us would have wanted, but we are working with the family to get that support in place as soon as possible and we understand their frustrations and appreciate their patience throughout the process.
"While it would be inappropriate for us to go into any more detail on individual cases, the maximum disability adaptation grant we can give is pounds 30,000.
"We make every effort to find the most cost-effective solutions to adaptation requirements and if vital adaptations do cost more than the maximum amount we can give, we will help families to find funding from other sources for equipment not covered by the grant."
THE DISABILITY FACILITY GRANT
A MAXIMUM of pounds 30,000 disability facility grant has been made available by the Government for where changes need to be made to a home. The grant can be used for adaptations to give disabled people better freedom of movement in and around their home and to provide essential facilities within it.
Work can include widening doors and installing ramps and providing or improving access to rooms and facilities by installing a stairlift or downstairs bathroom. Specifications can include improving access and movement around the home to help carers look after another person in the house.
It is general practice that an occupational therapist will look at each circumstance and recommend the type of adaptations needed. The amount paid is usually based on a financial assessment of the average weekly income in relation to outgoings but there is no means testing for families of disabled children under 19.
CEREBRAL palsy is caused by brain damage, usually occurring during birth, and it affects mobility. It varies in severity between different children and some symptoms can be barely noticeable. It is an umbrella term covering a group of non-progressive, though not unchanging, motor impairment conditions, which range from multiple and profound to barely detectable. There are three main types: Spastic cerebral palsy refers to increased muscle tone or hypertonia.
Ataxic cerebral palsy refers to disordered movements characterised by short and jerky movements. Often muscle tone is normal or decreased.
Dyskinetic (also known as athetoid) cerebral palsy usually comprises slow writhing movements where muscle tone fluctuates between increased and decreased tone.
Causes can be multiple and complex. Studies suggest that cerebral palsy is due mostly to factors affecting the brain before birth.
It is commonly the result of one or more abnormalities in the brain, before development is complete.We have to be careful with our money, besides we have two other children as well
TRYING TO PROVIDE A BETTER LIFE FOR HER DAUGHTER Aoife Wallace of Heaton who has cerebral palsy, with her mum Sharon.
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|Publication:||The Journal (Newcastle, England)|
|Date:||Jul 22, 2009|
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