EPIOCs, the NHS and Children - do they go together? Jennifer Trust Information Leaflet N° 002.

As an organisation we fully support the provision of appropriate mobility aids for children. Independent mobility is an important part of any child's development, and this is certainly the case for children affected by SMA. Children affected by this condition tend to have enhanced intelligence and be high academic achievers. The isolation and frustration caused by lack of, or restricted, mobility can be extremely frustrating and potentially damaging to these children.

We have regular contact with many parents whose children have been supplied with EPIOCs by the NHS. It is common for this to be at about the age of two years, although we have known cases where provision has been made considerably younger. Experienced Health Care Professionals have supported the opinion that children who receive mobility aids at this age quickly adapt to, and become accomplished wheelchair users. This process should ideally begin at the age when an unaffected child would begin to walk.

Many Wheel Chair Centres have concerns about the safety aspects of such provision. Of course it would be expected that the child would be supervised by parents at all times, this is no different from the actions that one would expect from the parent of any young child. In fact there is a tendency for parents of children affected by SMA to be more vigilant and protective than most.

In order to clarify the situation in relation to the provision of EPIOC's for children we contacted Ian Grist, Team Leader, Wheelchair Schemes, Department of Health. Ian provided the following information in relation to Government criteria for wheelchair provision for children.

It is for the therapist or other qualified professional concerned to decide whether a powered wheelchair is clinically appropriate, taking into account both national and local eligibility criteria. The broad eligibility criteria laid down for the provision by the National Health Service in England of powered indoor/outdoor wheelchairs do not include restrictions on the grounds of a person's age. We would not expect local eligibility criteria to include any such restriction either. The eligibility criteria for the provision of a powered indoor/outdoor wheelchair are that: -

1. The severely disabled person is unable to propel a manual wheelchair outdoors;
2. They are able to benefit from the chair through increased mobility leading to improved quality of life.
3. That they are able to handle the chair safely.

All applications for powered chairs whether for children or adults, involve an assessment which takes into account these three factors. The safety factor is particularly important, since the NHS would be liable if the wheelchair user sustained injury through unsafe handling of the chair, or injured a third party because he/she was not fully in control.
 
-- Ian Grist, Department of Health, Health Services Directorate Branch 7

It is clear from the criteria laid out by the NHS in England that age should not be taken in to account. The beginning of the final paragraph also states that "All applications for powered chairs whether for children or adults, involve an assessment which takes into account these three factors", if we therefore examine these 3 factors.

The severely disabled person is :-

1. Unable to propel a manual wheelchair outdoors. Children with type II definitely fall into this category, as will some children with type III SMA.
2. Able to benefit from the chair through increased mobility leading to improved quality of life. Children need independent mobility in order to take part in life, children with SMA that use powered wheelchairs are able to interact with other children, attend mainstream education, both pre-school and primary. There can be no doubt that even these simple factors increase quality of life
3. Able to handle the chair safely. Children with SMA tend to be very bright, highly articulate and quick to learn. We at the Trust have knowledge of children from the age of two passing outdoor driving tests, negotiating drop kerbs, dealing with crowds, under the watchful eye of an OT. Our conference is full of young children skilfully and accurately negotiating their way around large hotels and a variety of other environments on the children's trips. The safety factor is a matter of assessment; provided with the right chair, the right seating and the right controls, children with SMA excel as EPIOC users.

It is extremely important that selection of an EPIOC, suitable seating and controls be assessed by a suitably experienced Occupational Therapist. Without appropriate seating & controls the child will find the chair difficult & uncomfortable (if not impossible) to control. Inappropriate seating also has major health implications for children with SMA, the need for proper assessment cannot be overstated.

It is suggested that when requesting an assessment for an EPIOC for a child that these points are highlighted to the assessing OT. Please feel free to show this leaflet and feel free to ask the OT to contact the Jennifer Trust if any points require clarification.

© JTSMA, May 2001