Robin Miller, Senior Fellow, Health Services Management Centre
From an early age many disabled children and their families access a bewildering range of professionals , of which paediatricians, speech and language therapists, teachers of the visually impaired, psychologists and social workers are but a few. All come with their own approaches, processes and criteria and integrating these in a seamless and holistic manner is a daunting and often unachievable task for the families and professionals concerned. Transition points cause additional complexity, with the move into adulthood signifying a loss not only of school but also most of the agencies and professionals who young people and their families have come to know and trust.
These difficulties have not gone unnoticed by national and local policy makers, and over recent years a number of initiatives have been introduced to provide better co-ordination in assessment, care planning and service delivery. But for many families the problems of service fragmentation persist, and history tells us that in financially difficult times this will get worse as agencies try to maintain tight boundaries about what they will, and will not, pay for. This scenario is similar to that which has been experienced by disabled adults for many years, where they have battled within a complex system to access the funding required to meet their needs and for the right to then use this funding in a way which would enable them to achieve their aspirations. Their battles led to the introduction of direct payments, in which people accessing social care service have the option of buying or employing support services themselves, and personal budgets, in which people are clear about all of the funding that is available to them and have freedom as to how this is spent in order to meet the outcomes agreed with the funding agencies. Underpinning these new arrangements is a fundamental change in the relationship between service recipients and the public sector bodies from one of ‘passive recipients of a professional gift’ to ‘active citizens with rights’. When implemented successfully, this new approach leads to creative and flexible support packages that use funding more efficiently by paying for the things that will make the most difference to the individual concerned. This can also be liberating for the professionals involved, who take on the role of ‘co-producers’ of support with the individual, rather than ‘gatekeepers’.
Along with the introduction of a new single assessment process that covers education, health and social care needs, the proposed option of personalised funding within the Special Educational Needs (SEN) Green Paper is therefore to be welcomed. It has the potential to put families and young people at the centre of decisions about their learning, support and care and bring together the various funding streams and professionals around their circumstances and wishes. It opens the door to a system in which families and young people, with the advice and support of the professional they trust, can make active choices about the benefits of different models of school, transport, respite and therapies. It also offers the possibility of greater continuity post-18, as young adults could decide to continue with support agencies that are still providing beneficial services. This approach has been tested in pilot projects in which young people leaving a special school were allocated an individual budget as part of a ‘personalised transition’ process. The packages that were developed for these young people were not only more efficient and of better quality, but also resulted in the young people and their families reporting a greater sense of dignity and well-being.
Enabling people to have personal budgets does not mean that the complex barriers and funding restrictions that disabled children and their families meet within our society will be removed, but it will change the ‘rules of the game’ and provide the opportunity for a radical new approach.