Children with Complex Disabilities

Photo: Young girl in wheelchair

Trustees care passionately about making life better for children and young people with profound disabilities and their families.

In 2004, Trustees commissioned research into the needs of children with profound and complex disabilities and their families in the UK. The results of the research were stark: 55% of families with a disabled child live on the poverty line, primarily because of the costs of raising a disabled child. The research also highlighted the emotional strain that the majority of families live with and the desperate need for respite care and appropriate child care provision. It was also apparent that there were very few accessible activities or services for these children. 

On the basis of this research, Trustees decided to concentrate their grant-making in three main areas:

  • Support for organisations leading the way in developing services and opportunities for children and their families
  • Raising the profile of the siblings of disabled children and services to meet their needs
  • Raising the profile of disabled children and their families with central and local government
Trustees have been delighted by the success of the Every Disabled Child Matters Campaign which has been very successful in raising the profile of disabled children and securing additional Government funding. They continue to support the work of the campaign in the challenge of ensuring that national policy becomes local practice.

Other major achievements include the increasing recognition of the needs of siblings, the successful piloting of specialised, targeted financial and benefits advice and the growing importance being placed on the need for fun and friendship in the lives of disabled children.

Over the coming three years, Trustees will focus much of their attention in this area on finding solutions to the negative impact of Health and Safety Legislation and on researching and piloting solutions to the very high debt levels amongst families with children with complex needs and the impact on already stressful lives.