How to give mobility impaired children what they need, when they need it
There are an estimated 70,000 disabled children and young people in the UK who need wheelchairs to lead full and active lives.
Having the wrong chair can cause a disabled child a number of problems. Children who do not have age appropriate independence and who are simply pushed around by their carers can develop learned helplessness. This occurs in a number of ways. When trapped by immobility, play – a crucial part of the developmental process – can be limited considerably. When a child is reliant on being pushed around, there can be little chance of his or her personality being the dominant feature in interactions; they will instead be dominated by the presence of the person pushing the chair. In this way, the development of communication can be hampered, as children may be less outgoing and let parents or carers speak on their behalf. A child who is unable to communicate or is held back in this way can then have a very difficult time in school, developing relationships and in later life.
The clinical problems caused by incorrect or ill-fitting wheelchairs, particularly by scaled-down adult chairs, can include a variety of issues: pressure sores, septicaemia, rotator cuff tendinopathy (degeneration of the tendons around the shoulder), dislocated hips, scoliosis, deformities, hospitalisation and surgery. The list goes on, and for some children, their wheelchair can cause them so much pain or spasm that they are only able to sit in it for very short periods.
That’s why it is vitally important that children who need wheelchairs get the right equipment for their needs without delay. Disabled children who are mobile, independent and confident in childhood also leave a lasting impression as active, capable individuals on their peers; these are positive perceptions of disability which will stick with the other children throughout their lives.
What is the right equipment?
Each child or young person with impaired mobility needs appropriate equipment suited to his or her specific needs. The right equipment will allow a mobility-impaired child to lead a life on a par with their peers, allowing them to play, learn, and develop physically and emotionally. Similarly, it enables them to achieve freedom from their parents and carers, develop their own personalities, participate in society, contribute and take charge of their own lives.
For a chair to provide real mobility, the child obviously needs to be able to use it to move around. For many children, this means having a powered chair. For some, though, the best option is an agile, manual wheelchair that they can operate under their own steam, maximising their physical capabilities. Heavy, poorly set-up equipment can entirely subvert the potential benefits of a manual chair.
Lightweight manual chairs can weigh as little as 5kg and still provide all the requisite postural support. Many chairs can be specially fitted with special wheels which enable the user to navigate hills, sharp ramps and steep inclines. These wheels provide power-assistive technology to propel the chair through places that might not otherwise have been accessible. As a result, children can take advantage of their existing physical abilities without hindering their ability to get around comfortably and efficiently.
The right assessment
Central to providing the right equipment is correctly assessing the needs of a young person. Specialised paediatric therapists, who may be either occupational therapists or physiotherapists by background, are best able to recognise the needs of each child and prescribe the best equipment accordingly. It is important to remember that paediatric assessments are very different to adult assessments. Children are not only smaller, but they grow and develop, have different lifestyles, different vulnerabilities, different activities, different capabilities and different limitations.
When some pieces of equipment can cost several thousand pounds, NHS wheelchair services, like many other public services, use eligibility criteria for ensuring fair and equitable access. However, in many areas, the pursuit of fair access through the use of eligibility criteria can be said to set obstacles for mobility-impaired children and young people and hinder the therapists working with them as they seek creative solutions to meeting the child’s individual needs. When rigid eligibility criteria are used, the assessment of the child’s needs is, to some extent, taken out of the hands of the expert therapists. Instead of assisting the therapist to make effective decisions about the most appropriate provision for a particular child, the criteria become a means for controlling costs and limiting provision.
In many areas, the eligibility criteria prescribe strict age limitations. These limits can vary significantly from service to service. Sometimes, children under five are not provided with wheelchairs at all, but are expected to stay in their buggies to be pushed around by their parents or carers. The NHS will often say it is out of concern for the child getting hurt using a powered chair, but this is inconsistent with the fundamental purpose of providing children with mobility: to achieve age-appropriate independence while meeting clinical needs.
In addition, powered mobility is routinely denied to specific groups of children by some local eligibility criteria, no matter what the clinical diagnosis.
By the age of ten, a disabled child denied necessary equipment will often have developed a range of problems otherwise potentially avoidable, including clinical, developmental, social and mental health issues. Nevertheless, refusal to provide critical powered mobility to younger children is still common practice in some parts of the NHS. This means that for the independence to get around the house, to go to school, to play outside with friends, to explore and to develop as an individual, the child has to wait ten years.
In 2007, the Care Services Improvement Partnership reported that of 12,164 wheelchairs issued to children in 2006/2007, 98 per cent were manual wheelchairs. The report also asserted that many of the chairs issued were scaled-down adult chairs that did not meet the users’ needs, or allow independent user activity.
At a time when every public service is expected to do “more for less”, the best chance for all disabled children to get the wheelchair they need is to redesign wheelchair services around them. By working in collaboration with other NHS services and charities, local NHS providers can begin to achieve the economies of scale and shared learning that ultimately ensure that available resources are targeted most effectively. With the potential introduction of “Any Qualified Provider” for children’s wheelchair services from April 2012 in some areas, that won’t mean reinventing the wheel, but it will mean reinventing how wheelchairs are provided.
Ruth Owen is Chief Executive of Whizz-Kidz, a charity providing wheelchairs and mobility equipment for disabled children: