Jonathan's story

Jonathan has a tracheostomy and needs to carry a breathing unit with him at all times. He suffers from severe epilepsy which requires rectal medication. He has severe curvature of the spine, is double-jointed and has hypotonia. His health assessment describes him as having severe learning disabilities, severe behavioural problems, global development delays and no speech. He also has bilateral deafness and eczema.

In the three years immediately before leaving school Jonathan spent 150 days in hospital as a result of breathing problems. In the three years since leaving school he has spent only two nights in hospital, for elective dental treatments. This radical improvement in Jonathan's life was brought about by access to an integrated individual budget through the Personalised Transition programme at Talbot School in Sheffield. In the first three years, Jonathan's annual budget was about £70,000, split between health and education. The local authority continued to play a critical role in integrating the funding from different sources and enabling the family to manage it directly. This has allowed Jonathan's family to oversee the development of a personalised package of support based around flexibility, employment and on-the-job learning and to recruit personal assistants who are trained in how to support Jonathan's healthcare needs.

Jonathan's health needs are complex, but since getting his individual budget his life has been full and positive and his health has been getting better and better. For Katrina, Jonathan's mum, the individual budget has radically changed Jonathan's life in several ways:

• • He is happier. He is doing things he enjoys and is learning more quickly than he ever has done.

• • He is contributing, working, doing deliveries and meeting different people.

• • He is much more active, getting out in the fresh air which he enjoys and which keeps him fitter.

All of this has resulted in significant efficiency savings in the costs of Jonathan's care: over £100,000 in hospital stays, over £300,000 in residential care costs and over £100,000 in education funding.

Source: Alakeson and Duffy (2011)