The With Music in Mind resources are freely available online to all people who may potentially benefit from them, irrespective of the nature of their disability, their age or country of residence.

Eligibility for the With Music in Mind service

The With Music in Mind service is freely available to children and young people under the age of 18, resident in the UK, who have Batten disease or another neurodegenerative disease in which bilateral visual impairment is present and causes in its own right a significant impediment to the child’s ability to learn or function independently.

All applications should be made by a parent or guardian but can be supported in the process by a health care or other support worker. Families accepted onto the scheme will receive an initial assessment and the award will be reviewed annually.

The Resources

Families will be given a resource pack. Materials include a set of specially designed activity cards, intended to give parents and carers ideas for musical activities that they can do with their child without the need for specialist knowledge or training. They tap into the intuitive musical understanding that children appear to retain until the end of their lives, scaffolding continuing social contact and underpinning emotional regulation.

The With Music in Mind card set

Families will also receive a ‘record book’ for making notes of their child’s musical memories and achievements, and to keep artefacts such as concert tickets, together with a memory stick for recording their favourite songs. Recording and collecting musical memories is an enjoyable and effective way of stimulating a child’s memory.

Also part of the resource pack will be a music notebook for recording the session’s activities and making a note of what worked well so the family can try the activities in between sessions when the music practitioner is not there.

The Music Service

As well as these carefully designed resources, a core part of the service will be providing one-to-one musical support, initially in the form of weekly music lessons from a suitable teacher if the child is able to benefit from them. At the point when traditional music lessons are no longer appropriate, the child will be allocated a specially trained music practitioner. He or she will work with the whole family providing monthly sessions of up to two hours devising and modelling activities with a view to supporting functions such as communication and language, memory, mobility, socialising and choice-making, and more generally promoting a sense of wellbeing. The With Music in Mind Coordinator will act as a point of contact who will oversee each child’s music provision. They will provide an initial assessment, ongoing telephone support as required, and an annual home visit to review developments.

This pioneering new music service is the result of a three-year research project carried out by the Applied Music Research Centre at the University of Roehampton in collaboration with The Amber Trust and funded by the Bailey Thomas Foundation.