Margaret Perkins

Transition pathways for young people with complex disabilities: exploring the economic consequences.

BACKGROUND Disabled young people with complex needs face particular challenges when they reach adulthood and seek to move from school to employment or further education. There are potentially substantial personal and social costs arising from these challenges. METHODS We sought evidence from recent UK research, policy and related literatures; undertook exploratory statistical analyses of birth cohort data; and analysed information provided by 30 disabled young people requiring high levels of practical and communication support. RESULTS The personal, family and social costs that result from unsuccessful transition are substantial and wide-ranging. Health service and local authority expenditure are important elements, but do not allow young people to achieve the educational or employment goals to which they aspire, resulting in considerable costs for the state, whether through missing opportunities to contribute to the economy or through dependence on welfare benefits. CONCLUSIONS The considerable sums currently spent on disabled children and young people are clearly not enough, or not deployed appropriately, to enable those who reach adulthood to fulfil their ambitions, or to meet government policy intentions for young people to achieve economic well-being.

Treatment paths and costs for young adults with acquired brain injury in the United Kingdom

Primary objectives: To identify the health and social care services used by young adults aged 18–25 years with acquired brain injury (ABI) and the costs of these supports. Research methods: A review of existing literature and databases and contact with academics and stakeholders working with people with ABI. Main outcomes and results: The likely care pathways of young adults with ABI were mapped over a notional 1-year period after presentation at hospital accident and emergency departments. Most young adults with ABI will use minimal health and social care support following injury but those with subsequent disabilities may cost the health and social care budget in excess of £47.2 million per year. Conclusion: Lack of available data mean the service use and cost estimates draw from a range of sources. However, the costs may under-estimate the true impact on budgets as incidence rates may be higher than identified and conservative values were selected for unit costs. The model estimates the cost of treatment and support as provided today, but high levels of unmet need remain.

Health and social care costs for young adults with epilepsy in the UK.

Maintaining contact with services will help improve clinical and social outcomes as children with epilepsy move into their adult lives. This study has collated evidence on the extent to which young adults with epilepsy are supported by health and social care services posttransition, and the costs of such support. UK prevalence and service use data were taken from policy and research literature, as well as national data sets and reports. Costs were attached to these data to arrive at agency and overall total costs. There are approximately 42,000 young adults (18-25 years) with epilepsy costing the UK health and social care budgets 715.3 pound million per annum, on average 17,000 found per young adult with epilepsy. A further 61 pound million falls to the social security budget. Most young adults with epilepsy will rarely use these services, but those with additional health needs have high and often long-term support needs, including supported accommodation and personal care. Current resources used by these young adults are summarised but deficits in service availability can mean long waiting times and sub-optimal treatment. Young adults also want more support to help them take advantage of education and employment opportunities and more information about managing the impacts of epilepsy on their lives. Improving services will cost money, but has the potential to lead to better outcomes for young adults.

Circles of Support and personalization Exploring the economic case

Circles of Support aim to enable people with learning disabilities (and others) to live full lives as part of their communities. As part of a wider study of the economic case for community capacity building conducted from 2012 to 2014, we conducted a mixed methods study of five Circles in North West England. Members of these Circles were supporting adults with moderate to profound learning disabilities and provided accounts of success in enabling the core member to live more independent lives with improved social care outcomes within cost envelopes that appeared to be less than more traditional types of support. The Circles also reported success in harnessing community resources to promote social inclusion and improve well-being. This very small-scale study can only offer tentative evidence but does appear to justify more rigorous research into the potential of Circles to secure cost-effective means of providing support to people with learning disabilities than the alternative, which in most cases would have been a long-term residential care placement.