Wheeled into action

You wouldn't take a two-year-old's legs away just because she might run into the road or fall over and hurt herself, so why deny young disabled children mobility aids on the grounds that they might hurt themselves?

This is just one of many persuasive arguments as to why disabled children under five have just as much right to powered and other types of mobility aids as any other disabled individual.

And it is being put forward with increasing vigour by the national charity Whizz-Kidz, which specialises in providing such equipment to children.

Having started 10 years ago with a remit to 'get children with disabilities mobile', it now finds itself at the forefront of an increasingly contentious and hard-fought political issue.

The National Health Service, it claims, is denying young children these aids, and ignoring their needs, ostensibly on the grounds that they are not safe for very young children and they may injure themselves.

The Department Of Health saysits National Wheelchair Managers' Forum is currently looking at national standards for provision and will cover matters across the board - for all ages - but adds, 'Safety does form part of the picture and we have found both parents and NHS Trusts sometimes feel that it could be unsafe for a child under five to be in charge of a powered wheelchair.'

This view gets short shrift from Whizz-Kidz, which says the only injury to the child is to its social and psychological development when powered mobility is refused.

Whizz-Kidz backed this claim at its conference in November 2000. The NHS Wheelchair Service, it said, is massively underfunded. For that reason, strict criteria apply to the provision of powered wheelchairs, and it discriminates against those with the smallest voice - disabled children under five.

Costs are obviously a key factor. Since 1994, the NHS has been running its EPIOC (Electronically Powered Indoor/Outdoor Chairs) Scheme. Last year the NHS wheelchair services had a national budget of 6m. The York Report 2000 estimated that there are 40,000 adults and children who would benefit from an EPIOC, which works out at an annual allocation of 150 per person. With the least expensive EPIOC costing around 1,200, the shortfall is apparent.

Meanwhile, medical advances and improved survival rates for certain conditions have meant that the demand for wheelchairs is rising. A DoH report showed an increase of 17 per cent a year between 1991 and 1996. It says it has consistently increased funds for powered provision over the past five years, but admits, 'demand has proved to be much greater than forecast'.

But while we can all sympathise with the financial pressure the NHS finds itself under, Whizz-Kidz argues it is no excuse for placing children's needs at the end of the queue with the questionable claim that they are too young to use them. Rather, it argues that as main cognitive development occurs between nought and four years, these aids are essential for children.

'Just as a non-disabled child will start to move independently at around 18 months, we believe a disabled child of 18 months should have the opportunity to move independently using powered mobility equipment,' says Jill Cochrane, spokesperson for Whizz-Kidz. 'It enables these children to realise their true potential and the effect of their new-found freedom on their self-esteem and confidence is dramatic.'

Charles Fairhurst, a leading neuro-paediatrician at Guy's Hospital, was one of many medical experts at the conference who spoke of the importance of mobility. 'Movement is an essential stimulus for a child's "normal" development and growth,' he said 'Without it, very young children become passive, dependent on adults and develop "learned helplessness" - a documented condition. Lack of mobility and social skills from an early age will hinder their integration into society as adults.'

On safety, Whizz-Kidz says that a five-year research project in the US found that the majority of disabled children aged between 18 and 36 months could operate the equipment safely after just six one-hour training sessions. Whizz-Kidz provides a comprehensive programme of assessment and training by its own network of specialist mobility therapists when someone applies for equipment. The training covers appropriate supervision in a range of environments, and safety is paramount.

'Just because you've passed your driving test, it doesn't mean there will be no accidents,' says Jill Cochrane. 'It's the same for children in powered equipment. But the sorts of minor incidents reported to us, such as a child grazing their hand during a training session, equates to an able-bodied child falling off his or her bicycle when they are learning to ride.'

The charity's director of children's services, Rosalind Ham, is confident attitudes will change. 'We had a good reaction from the NHS people at the conference,' she says. 'Many wanted to use our evidence to take to their managers.

'We are not out to "knock" the NHS. We have strong links with it and are involved in joint-funding for projects. But we are not there to bail it out either. It is not just about money - a lot can be done just through a change in attitudes. I was horrified by two recent reports from the Audit Commission and York University on powered-wheelchair provision - they completely ignored children.

'Therapists within the NHS could change things radically just by being more pro-active. I think there is still a lot of ignorance about the issue and we found many therapists working with the under-fives were just not aware of the benefits. That's why Whizz-Kidz is increasingly taking on the role of raising awareness and political lobbying.' NW

CASE STUDY

Sophia Notarianni is three and a half and thinks she's the queen bee. And why not? For the past year, Sophia, who suffers from a deteriorating condition called Spinal Muscular Atrophy, has been able to take an active part in her nursery activities, go to the zoo, play 'football' in the park, play with her sister and cousins and enjoy trips to Legoland - all thanks to 'Reddy', her Permobil Playman powered wheelchair from Whizz-Kidz.

Sophia's condition means she is unable to walk and needs help to be able to sit upright. Without Reddy, her world was restricted to whatever was within arms' reach. Any kind of independent mobility was out of the question. As a very bright child, she found this very frustrating - as did her mother, Christine.

But even more frustrating was being refused an assessment for powered mobility by the NHS, on the grounds that she was 'too young, and might fall downstairs in it'.

'I pointed out that I'd have to be Arnold Schwarzenegger to get a powered wheelchair upstairs in the first place, but they just dragged up more and more excuses,' says Christine.

Sophia's consultant backed her case all the way and eventually won an assessment at Great Ormond Street Hospital. 'It was about that time I heard about Whizz-Kidz, and everything changed,' says Christine.

'Sophia was getting so frustrated she was banging her head against the cot wall, but since getting Reddy, she's been a different person,' says Christine. 'I noticed other children treated her differently too. Before, they saw her as a "baby". She was often overlooked or dismissed just because she couldn't move around.'

Sophia's nursery has also been very accommodating. 'She does have a smaller powered unit for indoors, but there has never been any problem and the independence she now has there is wonderful. In fact,I think she considers anyone who hasn't got a wheelchair to be inferior!'