Small steps towards a giant goal
Raymond Ross finds out about an acitvity-based programme for severely disabled young people.
Nine-year-old Joyce laughs and giggles as she bounces on the trampoline. She is clearly delighted by the sheer physicality of the experience and enjoying every minute of doing her "roly poly" and playing bounce with her pal, Robbie, 7.
We're in North Berwick Sports Centre, East Lothian, next door to Law Primary where Joyce is a pupil. With help from the support staff, Joyce manages pretty well to get herself back into her wheelchair. It's a marked achievement, given that she's not long moved from a buggy to a wheelchair which she loves, because she can - partially at least - wheel herself.
That means a degree of independence for Joyce and, although her speech is severely limited, it is clear that she has a strong independent streak and can communicate her wants and her needs as well as her delights.
Independence is the key concept to the programme Joyce has been on for the last two years. With her own agreement and that of her parents, teachers, support staff and physiotherapist, her three targets are to be able to walk up stairs with moderate assistance, to transfer from her wheelchair into a car with adult support and to stand and balance herself with a hand on a shelf or table for changing or dressing.
The last target she has achieved, the second she is beginning to manage and the first is on the horizon: she can stand to get up the stairs at home with her parents' help and let herself down in a sitting position.
Joyce has ataxic cerebral palsy and the personal programme she has been following has been devised through MOVE (mobile opportunities via education), an international charity which helps severely disabled children and young people take their first steps to independence.
"MOVE is an activity-based mobility programme which helps to alleviate barriers to learning and promotes independence for young people with physical disabilities. It requires and enhances multi-disciplinary working by combining knowledge about therapy, education and family," says Liz Herd, inclusion and equalities officer for East Lothian.
"The goals in an individual's programme are meaningful and functional, decided by the person and their family. Therapists and education staff work with them to devise a structured programme of sitting, standing or walking activities which lead towards the chosen goal."
These activities are broken down into small steps which are incorporated into the young person's daily routine. Through using multiple opportunities to practise the skills identified, they are quickly learnt. This motivates the young person - and the team working around them - to practise further and to progress towards the identified goal.
Joyce's mother, Phyllis Conway, has no doubts about the benefits of the MOVE programme. "Stairs were a problem for Joyce but now she has access to the upper floor in the house which she never had before. She's not frightened of the stairs and I'm not frightened for her. She's determined," she says. "The physio, who knows her really well, has explained all the steps we have to take, so I know how to help her. I'm aware of what to do. She can also use a walking frame now. She does swimming and horse-riding for the disabled. MOVE is making a real difference."
Joyce is well integrated with her peer group and joins mainstream classes for registration and the expressive arts, as well as spending quality time in Law Primary's support base, where many of the staff have undergone the two-day training programme for MOVE.
"Joyce can now stand and do almost anything if you're standing behind to support her," says Morna Macdonald, principal teacher of additional support needs. "It's not about doing things for her. It's about prompting her to do things until she can do them herself. Her programme motivates her, because she's involved from the start in setting out to do what she can achieve."
Mrs Macdonald has seen definite progress with Joyce and, although this is her first experience with MOVE, she's impressed. "It provides meaningful motivation and clearly promotes mobility and independence," she says.
MOVE was created in the United States in 1986 and began in the UK 10 years later. There are 12 local authorities using the programme in Scotland and since MOVE Scotland was set up eight years ago, over 1,000 school staff have been trained to work with some 200-250 children and young people.
"It is the most effective type of intervention for children with severe disabilities and its work is supported by all the latest research on the development of physical movement," says Christine Shaw, development manager of MOVE Scotland and a qualified paediatric physiotherapist.
- is based on the principle that we have to be able to move in order to learn about our environment, spatial concepts and cause and effect.
- does not exclude any children on the basis of the severity of their disability, whether learning or physical.
- focuses on a team approach and uses the knowledge of everyone who works with each child (for example, parents, teachers, physiotherapists, occupational therapists, classroom assistants and carers).
- uses a top-down functional approach that focuses on activities that people are motivated to achieve, rather than what they cannot do.
By focusing on what each individual wants to achieve (be it to play football with their friends or to eat dinner with their family), the skills have greater purpose and meaning and the child is more motivated to learn.
- can be delivered at every opportunity at home, at school and in the community, so the child has multiple opportunities to practise skills in a familiar environment.
Some specialised equipment is used as a tool for learning, with prompts reduced as the child gains new skills. The benefits of independent mobility remain within the child rather than a piece of equipment.
Anyone can practise and implement the MOVE programme after successfully completing a two-day training course.